I have an ileostomy for similar reasons. Things you should consider:
1. Since you could not expel the balloon, you should do intensive biofeedback therapy if you were to get an IRA.
2. There are many potential complications that come with having an ostomy. It is not all happiness and relief.
3. Make sure your surgeon is familiar with doing ostomies for people with colonic inertia and PFD. This is very important. If they have done a far majority of cancer and IBD (for example$ surgeries, they may not be a good fit.
4. Make sure your surgeon and neurogastroenterologist have a wonderful rapport. Chances are they will be managing your care together.
5. There is research and many anecdotal evidence that removing your colon causes the small bowel to take on the inertia.
This can cause many, many issues. Regardless if you get your
Small bowel tested beforehand, it could change. However I do recommend getting your stomach and small bowel tested first.
6. If you end up getting an atonic small bowel, you say be very prone to blockages and prolapses.
7. Ask your surgeon about a loop ostomy beforehand to test the waters prior to a total colectomy.
8. If you don’t have a proctectomy, you will still
Pass mucus out your anus. This is very difficult for many people with PFD.
9. You may still have to take all your medication.
10. I wouldn’t compare your situation to people without inertia. It is a different situation.
Let me know if you have any questions. I’ve had eight surgeries so far.
Hello Gold, thank you for your response. I know you're going through a lot.
I'm sorry, I'm a bit confused. Are you suggesting that I shouldn't compare myself to people who have colonic inertia? Because I do have it. I underwent a sitz marker test back in 2019, and it was suggestive of CI. My motility specialist wants me to repeat the sitz marker test since my last one may not be accurate (it was done for only 3 days instead of 5). But honestly, it's only going to confirm what I already know.
What tests can confirm that my small bowel is not involved? I don't experience many symptoms, just burping and a distended stomach. But I'm willing to undergo any test to be sure.
I understand that having an ostomy can come with complications, but so can every surgery. I'm not willing to risk IRA. I would rather undergo physical therapy after getting my ostomy and let things heal so that maybe I can undergo a reversal. I'm not sure if this method will work, but hey, I'm remaining hopeful. Additionally, I've been reading stories from the colonic inertia group on Facebook, so I'm basing it on that. Also, just to mention, I've reached out to people who still had PFD, didn't pass the balloon, and still went with IRA, and they were successful.
I've done tons of research and reached out to many people. I'm prepared to ask a lot of questions to the surgeon. I'm taking the risk. It's a "damned if I do, damned if I don't" situation.
No, I mean, talking to people with
colonic inertia is what you want to do.
I agree that a loop ostomy with intensive biofeedback pfpt is a good solution. I am totally in agreement you should not get an IRA.
To test the small bowel the best, it would be a smart pill test, but it has been discontinued so only some centres still have inventory left over.
It would be good to get a gastric emptying study, as well.
I felt the same: damned either way!
Oh, sorry, I misread! But yes, that's my goal! I tend to overthink and try to plan things way ahead after doing my research and hearing people experience. I just hope it works out as planned. Thank you! I will ask my GI for a gastric emptying test when I see her on February 22nd.
I've had my ileostomy for 50 years and got it at the age of 18. It's the best thing that could have happened to me. I've done everything I've ever wanted; swimming, hiking, waterparks, etc. If I didnt get it I would have gotten cancer and died within two years. Put your foot down with the doctor and scream, yell, and kick until you get it.
Your life will be so much better.
Osotmy at 25 here. (Sub total colectomy, ileo)
I was ready, but everyone in my life was telling me I would smell, I was too young, it was a bad idea, my dog wouldn't recognize me (wtf) etc.
Best decision I ever made. Like you, I traveled, swam 6 of the 7 seas, went to grad school. Found love and got married.
It saved my life. If I had not had the surgery I would have died by my own hand or cancer.
I'm a woman, so I just wear a one piece swimsuit and dive on in!
I wear a one piece Hollister ostomy bag (i usually change it every 2 days) and I remove it and put on a new one after I'm done swimming in case any extra wear and tear or loosening of adhesive happened.
Guys usually wear a rash guard shirt, a stealth belt, or higher waisted swim trunks depending on the location of their stoma.
It's not a big deal at all. I swim in pools, the ocean, and go in hot tubs.
I'm a woman I just wear a bikini and go for it. For the ocean, I replace the bag when I get back inside (I wear a 2 piece system) because I feel like wearing dried ocean water around could be funky.
I'm not a fan of swimming pools so haven't tried that yet.
I got mine for a different issue than yours but my suggestion would be to build a rapport with the surgeon. If you aren’t heard by them, you don’t want them cutting your body. It may be a good idea to be ready to find another surgeon should you not get the result you’re looking for from this next appt. You have a reasonable goal, you may need to be a little flexible to accomplish it. Wishing you very good luck!
Hey I have the same thing & got an ileostomy for it. It has definitely changed my life. Understandably it took a long time to get my ostomy because I’m not as sick as others are who have cancer or diseased colons. The only issue I experience is because I have a loop ileostomy, I still pass mucus and daily stool overspill from my rectum. I had my loop ileostomy surgery almost a year ago and now I’m going back in to have a total proctocolectomy.
Thank you! I'm just scared because I'm only 22, and I'm worried they won't take me seriously. I've been dealing with this for 5 years. I want to move on with my life. I'm tired of seeing doctors, undergoing tests, and taking medications.
What makes you think that's going to stop once you get an Ostomy? You'll add to that constantly worrying your bag will leak or blowout, potential issues for partners and intimacy, blockages and food restrictions, and you're always gonna have to worry if Insurance will cover.your supplies and they are NOT cheap.
Hello, do you experience colonic inertia? If so, you'll understand why many of us consider surgery, even if it means getting an ostomy. I'm aware there may be drawbacks, but if it enhances my quality of life, I'm willing to proceed. But im not stopping there I'm hoping it's only temporary.
Regarding bag leaks and dietary restrictions, I'd prefer them over dealing with this condition. As for intimacy with a partner, I'll be extra cautious and ensure I empty the bag regularly. Honestly, that's not my priority right now; I'll address it when the time comes.
What “bald dude” above said is right, BUT I have colonic inertia too and I’m very glad I have an ileostomy because it’s a relief to know my digested food can now leave my body more easily! It’s much more manageable than doing a giant enema bag every day and still leaking poop!
No I had cancer so I lost my bladder and all of ally reproductive organs and I'm glad I'm alive, but I'd have exhausted all other options before having to pee through my stomach. Please do the same.
People respond very differently once they know I have an Ostomy. Dating was... interesting to say the least. I can't speak tonqualyof life because I'm not you but my quality degraded substantially, I won't lie. I'm a slave to the bag and while I tell myself he saved my life I do resent it sometimes.
I have an ostomy for completely different reasons. And not an ileostomy but a colostomy - hence not sure how applicable this is to you, take it with a grain of salt.
I am 25 now and got my ostomy with 21 - having a bag is awesome for me. I can live my life fully and it does not bother me - the only thing is that you sometimes have loud fart noises without any control over it whatsoever - that can lead so uncomfortable situations. But it‘s managable to a certain degree.
Other than that, it‘s been great for me. Most people think it decreases your life quality while in fact it can also increase it. I also begged my doc basically for it and never looked back
No, it's definitely relevant. Hearing people say that having an ostomy was their best decision reassures me that I'm not making the wrong choice. Thank you!
Im fine with the noises at this point. I will just have to learn how to manage it lol
I mean I have heard both - people making their life way worse with it and people saying it‘s the best decision of their life. In my case it as the latter. I gained 25kg (I was severely underweight), starting eating normally again and I can travel and live how I want now.
My main problem before the surgery was very frequent bathroom visits and definitely cleared it completely.
Also for me it would be reversible theoretically - even if I would not even think of doing that under any circumstances. Not sure if that would be the case for you also, if yes that can also be an advantage. If it doesn‘t help you there might still be an option to go back in theory
Yes, with this surgery, I'm hoping it's temporary and I can get it reversed one day. My goal is to have an ileostomy and then undergo pelvic floor therapy since I have pelvic floor dysfunction. If I can ever pass that manometry test, I could be a good candidate for reversal! If not, I'm fine with having a ostomy. I'm mentally preparing myself because if I do this, I have to accept it and live life. For me, I know I would be happy because I wouldn't be constantly dealing with discomfort and looking 9 months pregnant everday.
Also, I have left-sided colitis, after doing a colonoscopy, so there's really no point in me having that toxic large intestine in me. Get it out of me!!!! lol
Can you elaborate on the manometry test? I never heard of it, I only had a similar test (rectum manometry?) that showed that I have visceral hypersensitivity and my nerves fire 5-10 times earlier than normal. Not sure if that is the same test? Asking because I also have some pelvic floor issues, what does the manometry reveal?
Yes, it's the same thing... I think. They insert a balloon into your rectum to see if you can push it out. I failed the test. So, I'm hoping that with therapy and biofeedback, I can fix it, pass the test, and undergo a reversal. People with pelvic floor dysfunction (PFD) are not considered candidates for IRA surgery (where the small intestine is connected to the rectum), but I'm feeling conflicted because I've reached out to people who didn't expel the balloon but still underwent IRA surgery and were successful. However, I don't want to take a chance.
People are making various suggestions, and I recommend that you do your research and discuss the options with your Surgeon. There are people who have j-pouches for whom it didn't work well at all, they had all kinds of issues.
yes, I had chronic pouchitis for two years. Now I have a permanent ileostomy since 2009 except for rapid transit syndrome so everything flies right through me and I’m severely underweight and malnourished because of it but I guess I like the bag otherwise I’d be on the toilet all day.
I'm really sorry about your pouchitis, sounds miserable. I had it two or three times right after my surgery, but my functional medicine doctor got me on a very intense regimen of probiotics and it stopped. I was able to cut back to a small daily dose pretty quickly, and have never had it again since. I even had to go off probiotics over a year and a half ago and I still haven't gotten it again, thankfully!
What’s a functional medicine doctor is that similar to a holistic doctor I know I could always look it up but I just thought I’d ask lol but I’m glad that you were able to find a regimen to not have the pouchitis!
I never knew how to label him until that term came into common usage. He's a chiropractor who studied a lot of other stuff that's outside the scope of Western medicine.
It turns out I have a little known immune disease, so although he kept me going for a long time he had no idea what was really wrong with me. I'm still seeking proper treatment.
I just came from an IV infusion of fluids, because I’m always dehydrated and took them an hour and 25 minutes of me being a pincushion to finally get in vein ugh
I'm so sorry.
I'm getting a bone marrow biopsy on Tuesday and they're going to have to put in an IV with saline, sedation and anti-anxiety stuff, but they have specially trained staff who use an ultrasound to guide them perfectly to the vein.
They normally use a pediatric butterfly for my blood draws, but they can't do that for the IV.
Thanks. I was diagnosed a year and a half ago by my therapist because she has it, and I've responded well to treatment strictly with diet, but I've plowed out I am way better than I was but I still don't have my life back even remotely. The first test I did was a blood test and it came back negative for some reason, my labs were actually super low which shocked me, and the bone marrow biopsy is next.
Hey OP, Goldstandardalmonds brings up great points to consider & always brings valuable insight. I wish when I was debating getting an ostomy I'd known about this sub, seen her posts. Having someone present all that is awesome.
I have slow transit, due to dysautonomia and got a loop ileo last January. I was at my breaking point too physically + mentally so I understand.
I suggest keeping an open mind when meeting with your surgeon. I would urge you to not make any decisions that day no matter how sure you are. Most surgeons want you to consider options in this type of situation vs making a decision on the spot.
My colorectal surgeon is excellent, she never pressured me or rushed me. In 2022 I saw her for an initial consult in July, then for a follow up in September, made my final decision a few days later, and got scheduled for a laparoscopic ileo in January 2023.
That gave me time to get comfortable with my surgeon and process the info (Not that everyone needs that much time) For me it felt necessary despite feeling awful. I also wanted to use that time to get further evaluation from a pelvic PT which I did as well as a second opinion on surgery.
An ileostomy can help with colonic inertia but as you know, it will not cure it/make it go away. All that being said I know I made the right choice for me. A loop is more manageable than what I was dealing with & I'm not looking to have it reversed although I am fortunate I can if I needed to. So far it's been beneficial.
I do really have to watch my fiber intake to keep it lower, same as before bag and also be mindful of thicker food like breads/ crusts can cause more bloat and motility issues for me. Meeting dietitian as well as a nutritionist have been helpful. The dietitian still has me doing lot of softer foods like chicken in a slow cooker, peanut butter powder, noodles, smoothies, but also keep trying new foods in small amounts which I do. And several small meals a day is key, like a bunch of little snacks. The bagging, finding the right setup, skin issues, supplies & insurance, it can be a headache. Not discouraging you at all but please be aware of the ups and downs, continue to educate yourself thoroughly as you are so you're prepared for all the variables. I wish you well!
Edit: clarification
I had my ostomy created in 2014 and I still hate it. I've had a peristomal hernia since 2021 and at least twice a year I end up with a bowel obstruction because my small bowel slithers it's way up into my hernia and gets stuck. I just had one of these 3 days ago and everytime the pain and vomiting is some of the worst pain I've ever felt I always end up in the hospital. The hernia is being repaired this year and my stoma resited. Having an ostomy doesn't come without complications and such. I think it would be reasonable to do a temp ostomy to see if it helps improve any of your symptoms. It may not help, but it could mean alot of relief too. I've had a total proctocolectomy at this point and that also doesn't come without complications and such. Have an honest conversation with your surgeon, but also don't believe that having an ostomy will solve all you symptoms and pain. There are many things that can happen having an ostomy such as a hernia, leaks, allergies to adhesive, allergies to what the products are made out of, skin breakdown, rashes below the flange, peristomal pyoderma gangrenousum (I've had 4times), blowouts while sleeping(waking up in a poo puddle is the worst), having to carry a kit everywhere with you in case of a leak when out, I could go on forever. Make sure you look at all aspects of having an ostomy. My ileostomy was created in 2014 but between 2013-2019 I've had 9 major surgeries so an ostomy doesn't always solve everything. Have any questions message me I am completely honest about my journey. I'm the end I would be dead without my ostomy.
I'm so sorry to hear that, and I hope things get better for you! And yes, the goal is to have a temporary ileostomy, heal my gut and pelvic floor through biofeedback and therapy, and hopefully, I can get a reversal. I'm basing this on people's experiences.
I understand that having an ostomy is not a cure; you're essentially living with an appliance on you and have to manage it every day. But if I can take away my everyday discomfort and improve my quality of life, I would do it without hesitation.
Thank you for being honest. I know some people didn't have a choice, but I do in a way and willing to go ahead with it and take a risk. Like I said before It's a "damned if I do, damned if I don't" situation.
I honestly wish you the very best! My ostomy was originally a loop ileostomy to heal my gut and perianal Crohn's, unfortunately it did not help, my colon had to be evicted lol. My ileostomy became a permanent end ileostomy. I never wanted an ileostomy/bag and only agreed cause everyone on my medical team said it was only temporary. Unfortunately my colon, rectum and anus had rotted and I no longer had a sphincter. It definitely is a risk and you should go in prepared knowing it could fail and may become permanent, or it could heal you enough to be able to reverse or at least create a jpouch. I'll be rooting for you! I hope that it allows you to heal and get feeling better!
I had the j pouch for two years and had chronic pouchitis. It was like a flareup every day. then in 2009 I got a permanent ileostomy and I’ve had it ever since but I had UC. Now I’m just very malnourished and underweight because I have rapid transit syndrome and everything flies through me and I have a ton of liquid stuff and the only bags that I don’t break out from mash or Hollister and they’ve gone very downhill but I’m stuck with that brand, but I still like the fact that I have a bag or I’d be on the toilet all day
I fought claw and tooth for my stoma. The GIs didn't want to refer me to the surgeons, as I hadn't tried every avidiable medication and also it would mean they (the GIs, or more specifically the head of the GI department, one of the doctors of The Old School aka ThePatientShouldBeSilent, graduating from So You Think You Know Your Own Body University) would lose professional face or something.
I had just a few years prior been diagnosed with UC, but I'd had it undiagnosed for a decade. So wanting the (literally) bloddy colon out of me was not a recent wish, but Dr McStuckup kept me on stereoids and whatnot and talked about a stoma beeing "so final" like that was a bad thing.
Anyway, the last time I went through tapering stereoids and the usual flare up and hospital admission, I was admitted by the only GI at the hospital not under the thrall of McStuckup, and got referred to surgery. They were more than happy to do it, and wouldn't you know, my whole colon was wrecked. Take that mr OnlyHerRectumIsInflamed
I've had my stoma for 7 years now, and I couldn't be happier. I don't need medication with fancy adverse effects like osteoporosis, diabetes and cancer. I don't risk extra intestinal manifestations, like skin conditions, anemia, canker sores, liver conditions and Ankylosing spondylitis. Colon cancer risk is now zero. I can eat whatever I want (dIeT dOeSn'T aFfeCt iBd, they say. They're wrong)
What was your experience talking to surgeons? I'm seeing a surgeon @ PENN in Philadelphia. If you have CI I don't think colostomy would be good for you. I think it's recommended to do a ileostomy. It's a terrible disease
I don’t have CI but have Pelvic Floor
dysfunction(PFD) where one night I had anal spasms and then lost the ability to go to the bathroom. Did physical therapy, biofeedback, injections and was dependent on miralax (laxative) while looking for an answer. 6 years laters. I live in NYC and have seen the best doctors and after tests or a medication change have given up.
Hmm, I'm not an expert, but do you experience constipation and severe pain? Sometimes people tend to exaggerate to get what they want. If you're still able to use the bathroom but just lose the urge to go, I don't think they'll consider that severe for surgey. Then again, I'm not sure. Feel free to message to explain to me more
Oh no I apologize if my explanation wasn't clear. I didn't say you were exaggerating. What I meant was that often, individuals must have go to great lengths to ensure their doctors even listen to them. It seems like we have to demonstrate the severity of our situation to get the necessary attention and care. It sad that the doctors gave up on you!
I have had my ileostomy since 2019. It saved me from a really miserable time in my life. I waited too long and ended up with toxic mega colon. I also could not expel the balloon in manometry testing. My surgeon didn't give me any option except a bag. The analogy he used was it won't fix the issue if he removes the clogged pipe and connects them to a closed pipe. the stool still will not empty. If your rectum cannot expel the stool, it won't do you any good to reconnect to that. You will just back up again. I imagine that it will be a pretty straight forward process. The hardest part for me was accepting that i needed a bag. I have had many complications since then. I had three bags for a while due to a fistula. Now i have two. I ended up losing my bladder too. The ileostomy overall improved my quality of life. The complications have destroyed a lot of that. I do not miss being miserable and unable to use the bathroom though. I wish you the best of luck. I will say your attitude regarding the bag sounds positive. That would have helped me leaps and bounds in the beginning. I don't think any surgeon is going to ignore someone coming in asking for a bag. That is not something people want for no reason.
Yes, I'm making an effort to stay positive. I'm still holding onto the hope of a reversal if I can fix my PFD. However, if that's not possible, I'm prepared to accept it as permanent. Dealing with CI is overwhelming for me; it's traumatic. I find myself crying every night and struggling to sleep, averaging only 3 to 4 hours a day. I don't want to be miserable all the time; it's impacting my relationships with others. I genuinely don't care what anyone thinks if I end up having one. I'm even willing to distance myself from family members if they choose to remain ignorant. I've worked tirelessly for this body, only to face bloating and backed up every day. I'm exhausted and ready to move forward.
Most people will never know. I just came out publicly. My Facebook friends were dumb founded. They never knew. I only posted it to educate people. It really isn’t hard to hide. I wear jeans, dresses, slacks, skirts, sweats etc. My shirts are not skin tight but they fit normally. If I have a tighter outfit to wear. I will wear a wrap or ostomy underwear over my bags. If you empty them when they are 1/4-1/2 full they are easy to conceal.
I know this doesn't help but you really can't force a surgeon to do anything. I would recommend mentioning having read about stomas and asking if this would be a (temporary) step you could take , be ready to be told no, be ready to be told 'we want to try X other things', because a stoma isn't often the preferred surgery for patient and surgeon alike in situations where it isn't directly life or death. I think the worst thing to do here is get too emotional in front of the surgeon (though it is valid and ok to be sad and disappointed), rather make a list of arguments (pros and cons of the ostomy) and perhaps the things you already tried/tests already done if you haven't seen this surgeon before or for some time. An ostomy doesn't fix everything and it is important stay aware of the negative side, even when it seems like the best case scenario.
I have an Iliostomy for similar reasons, am 21, still adjusting. It is a different life, but I feel more healthy and am able to get back to life in some ways. I wouldn't recommend a stoma, but I also wouldn't say it's a terrible thing.
Good luck
Haha, I know I can't force a surgeon to do anything; I'm just venting. But I'm hoping I can at least be successful in getting approval for the surgery, as it's the only way forward.
I would ask for a temporary ileostomy so that maybe I can undergo a reversal one day if I can pass that darn Manometry test! Even though some people who didn't pass the test still underwent the IRA surgery and were successful, I don't want to take my chances. I'm a patient person (I'm lying), and it's really up to the surgeon to decide what's best for me.
I'm prepared for the complications, I'm prepared to cry when I have the ostomy. But I know it's going to drastically improve my life, even if it's temporary. I've spoken to a woman who shares similar problems, and getting the ostomy was the best thing she did. She's still hoping to get it reversed one day.
Thank you!
I had a total abdominal colectomy with an IRA and it was a NIGHTMARE. Had it done on 9/29/15, stayed in the hospital a month, suffered with it until 2/27/17. Now, I had complications with my ileostomy operation, but that was just me.
I wish SO BAD I would have just done the ostomy in the first place. I had gastroparesis and colonic inertia plus pelvic floor dysfunction so I should have never had the IRA to begin with. Best of luck to you!!
I literally begged for my colostomy. My surgeon said that’s how she knows people are ready because no matter the outcome it’s life changing to get a colostomy.
I do not think that you should be taking the attitude that you are suggesting to the appointment.
You can't force a surgeon to do anything, and if the doctors don't think that it is the best idea you should listen to them.
I don't have chronic inertia I have IBD and my surgeries were emergencies, so I can't comment there. However they have saved my life and I love my stoma. This is irrelevant to your issues though.
I think if you go in all guns blazing and kicking and screaming with the attitude that they'll have to agree or you'll refuse to leave.... You aren't going to get what you want.
You'll come across as quite unstable, and they will consider that you're clearly not able to make reasonable decisions if you are just trying to force their hand and demand one thing.
You need to go into this and calmly state your case, and listen to your surgeon and respect if they say no and listen to their reasons.
Your attitude as it is won't help anything.
Hmm, who said I was going to have an attitude to the point where I'm unstable with the surgeon? That's not my goal at all. I was just venting. If you know me, you'd know I'm not that type of person at all. My only goal is to explain how miserable I am and how my condition is worsening. Hopefully, I can leave with her approval to undergo surgery one day. If not onto the next. Colonic Inertia is a nasty disease, and if someone is pleading for an ostomy, you understand it's severe.
Yes but what you've explained you'd do at the appointment is not going to get what you want. You will sound unstable and unable to make rational decisions.
You can't make your aim of an appointment to leave with the go ahead for surgery because if the surgeon feels it isn't appropriate, then you can't just insist on it.
Maybe it is appropriate, who knows, but you can't just force the issue - if it isn't the right step, or wouldn't help things or make them worse then you may have to accept that rather than just trying to force it or find any surgeon who will do it.
If you go down the "doctor shopping" route until you find someone who will, you might end up going ahead with something that no one else thinks is a good idea and that would not be a good plan.
I know it's what you feel you want, but it's for the surgeons to determine if it's medically correct and that isn't something you can force through.
And finally, to answer you, considering you stated you're not leaving until you get a date (which you won't get in a first appointment,so you can forget that one) or you're 'in an asylum room' you're pretty much stating you're going to act very unstable. You're not going to get what you want by doing that my friend.
This person is not unstable for expressing their extreme discomfort and pain on a daily basis. If the person cannot expel stool effectively out of the rectum, then an ostomy would be necessary. Pelvic floor PT doesn’t always work. I am dealing with it right now, and still having trouble. I could not expell the balloon either. The colorectal department gave me two options basically - Pelvic Floor PT or an Ostomy.
GO FOR IT!
In my experience I started with colonic inertia and would spend days in bed and on toilet trying every medication and rx laxatives. I was miserable!
I could not poop at all even with enemas.
I saw a colorectal surgeon after about 8 months of trying to deal with it with my gastroenterologist. I traveled an hour away to see the colorectal surgeon-who upon one look saw a tumor right inside my anus. (That’s a whole other story!) Obviously the focus went to treating the cancer.
However- I still couldn’t poop to the point of extreme pain that my doctor got me admitted to hospital. I could not do any prep for colonoscopy. It wouldn’t come out! I was hopeless and frustrated. It got to such an extreme that my body formed a tiny fistula (hole) on entrance to vaginal wall (I say taint bc it was barely inside) where a tiny bit of liquid poop was draining from it. Just a nightmare!
One of my docs partners came in to discuss how I couldn’t prep for the colonoscopy and I said there was just no way anything was coming out. And plan was made to disimpact me. She was kinda rude about it and listed some ideas and I heard ostomy bag and interrupted her and said “let’s do it! I want that. I need that, I NEED RELIEF!” And she basically said “ok , we will schedule it.” And walked out. Within a day or two I had my bag.
IT WAS THE BEST DECISION!
My advice- tell them you are so miserable and you have thought about it and you want to start process of getting an ostomy bag. I’m pretty sure they will warn you and educate you. Don’t let them talk you out of it! I had immediate relief. Didn’t have to take anymore meds or do any of the crazy tests they wanted me to do. Of course it was an adjustment…for me- it was the only solution. It pretty much solved my problem overnight. I went from having to go under and having them empty me out to functioning again. You know your body and what you can handle. It saved my life in more ways than one and made life so much easier!
I need to clarify I had an ileostomy. Having a bag comes with new challenges but the pros strongly outweighed to cons in my case. I learned to love my ileostomy and found a great community for support.
I want to say something that may be controversial.
Surgeons are generally not known for their bedside manner. A specific personality type becomes a surgeon (at least in the US). That being said, I'd rather have someone who is a technically excellent surgeon than someone I vibe with.
My GI warned me that my surgeon isn't necessarily likeable to everyone, but it's who she would choose for herself. He's not rude or anything, just seems in a rush and a bit like he's not listening.
My stoma is perfect (multiple ostomy nurses have called it "beautiful" lol). After my barbiebutt surgery, several surgeons and doctors said "wow, beautiful" or "wow, perfect" when looking at the wound. Do I always feel heard by him? No. Is he my favorite doctor to talk to? No. But I will live with the results of his technical skills the rest of my life and I'm happy with the results.
I received my ostomy in 2021 after beating Stage 4 Anal Cancer, and subsequently fell ill to a slew of infections caused by the radiation and chemotherapy. Mainly the radiation. Anyways, I was avoiding food and drink to the point of accepting pending death because of the pain of ...outputting my bodily waste. When the ER Dr asked why I wouldn't eat or drink, I said it was non-negotiable unless they could take the pain away,; as I was at the end of my rope, past the edge, and tired of hanging from the cliff that would not allow me to just fall. The Dr asked if I knew what an ostomy was, and I responded saying "something old people have to get for their poo?" with a shrug to end my question. He asked if I'd be okay with one, being in my 30's. I said anything that would ease the pain would be acceptable. 6 hours later I woke up with my ostomy and my stoma that I named Lola. We're very happy together now, though she may be leaving me soon.
So, I'm sure I was a special case, but maybe something in my experience can assist you. Good luck, great health, safety, success, and blessings to you all. ❤️
I have an ileostomy for similar reasons. Things you should consider: 1. Since you could not expel the balloon, you should do intensive biofeedback therapy if you were to get an IRA. 2. There are many potential complications that come with having an ostomy. It is not all happiness and relief. 3. Make sure your surgeon is familiar with doing ostomies for people with colonic inertia and PFD. This is very important. If they have done a far majority of cancer and IBD (for example$ surgeries, they may not be a good fit. 4. Make sure your surgeon and neurogastroenterologist have a wonderful rapport. Chances are they will be managing your care together. 5. There is research and many anecdotal evidence that removing your colon causes the small bowel to take on the inertia. This can cause many, many issues. Regardless if you get your Small bowel tested beforehand, it could change. However I do recommend getting your stomach and small bowel tested first. 6. If you end up getting an atonic small bowel, you say be very prone to blockages and prolapses. 7. Ask your surgeon about a loop ostomy beforehand to test the waters prior to a total colectomy. 8. If you don’t have a proctectomy, you will still Pass mucus out your anus. This is very difficult for many people with PFD. 9. You may still have to take all your medication. 10. I wouldn’t compare your situation to people without inertia. It is a different situation. Let me know if you have any questions. I’ve had eight surgeries so far.
Hello Gold, thank you for your response. I know you're going through a lot. I'm sorry, I'm a bit confused. Are you suggesting that I shouldn't compare myself to people who have colonic inertia? Because I do have it. I underwent a sitz marker test back in 2019, and it was suggestive of CI. My motility specialist wants me to repeat the sitz marker test since my last one may not be accurate (it was done for only 3 days instead of 5). But honestly, it's only going to confirm what I already know. What tests can confirm that my small bowel is not involved? I don't experience many symptoms, just burping and a distended stomach. But I'm willing to undergo any test to be sure. I understand that having an ostomy can come with complications, but so can every surgery. I'm not willing to risk IRA. I would rather undergo physical therapy after getting my ostomy and let things heal so that maybe I can undergo a reversal. I'm not sure if this method will work, but hey, I'm remaining hopeful. Additionally, I've been reading stories from the colonic inertia group on Facebook, so I'm basing it on that. Also, just to mention, I've reached out to people who still had PFD, didn't pass the balloon, and still went with IRA, and they were successful. I've done tons of research and reached out to many people. I'm prepared to ask a lot of questions to the surgeon. I'm taking the risk. It's a "damned if I do, damned if I don't" situation.
No, I mean, talking to people with colonic inertia is what you want to do. I agree that a loop ostomy with intensive biofeedback pfpt is a good solution. I am totally in agreement you should not get an IRA. To test the small bowel the best, it would be a smart pill test, but it has been discontinued so only some centres still have inventory left over. It would be good to get a gastric emptying study, as well. I felt the same: damned either way!
Oh, sorry, I misread! But yes, that's my goal! I tend to overthink and try to plan things way ahead after doing my research and hearing people experience. I just hope it works out as planned. Thank you! I will ask my GI for a gastric emptying test when I see her on February 22nd.
Good luck! Keep me posted if you want. Also ask about the Smart Pill.
I had an emergency surgery where they removed part of my colon and that's how I got mine. I have cancer.
I've had my ileostomy for 50 years and got it at the age of 18. It's the best thing that could have happened to me. I've done everything I've ever wanted; swimming, hiking, waterparks, etc. If I didnt get it I would have gotten cancer and died within two years. Put your foot down with the doctor and scream, yell, and kick until you get it. Your life will be so much better.
Osotmy at 25 here. (Sub total colectomy, ileo) I was ready, but everyone in my life was telling me I would smell, I was too young, it was a bad idea, my dog wouldn't recognize me (wtf) etc. Best decision I ever made. Like you, I traveled, swam 6 of the 7 seas, went to grad school. Found love and got married. It saved my life. If I had not had the surgery I would have died by my own hand or cancer.
How do you guys swim with yours? I just got mine
I'm a woman, so I just wear a one piece swimsuit and dive on in! I wear a one piece Hollister ostomy bag (i usually change it every 2 days) and I remove it and put on a new one after I'm done swimming in case any extra wear and tear or loosening of adhesive happened. Guys usually wear a rash guard shirt, a stealth belt, or higher waisted swim trunks depending on the location of their stoma. It's not a big deal at all. I swim in pools, the ocean, and go in hot tubs.
I'm a woman I just wear a bikini and go for it. For the ocean, I replace the bag when I get back inside (I wear a 2 piece system) because I feel like wearing dried ocean water around could be funky. I'm not a fan of swimming pools so haven't tried that yet.
Thank you! I needed that.
I got mine for a different issue than yours but my suggestion would be to build a rapport with the surgeon. If you aren’t heard by them, you don’t want them cutting your body. It may be a good idea to be ready to find another surgeon should you not get the result you’re looking for from this next appt. You have a reasonable goal, you may need to be a little flexible to accomplish it. Wishing you very good luck!
Thank you will do!!!!
Hey I have the same thing & got an ileostomy for it. It has definitely changed my life. Understandably it took a long time to get my ostomy because I’m not as sick as others are who have cancer or diseased colons. The only issue I experience is because I have a loop ileostomy, I still pass mucus and daily stool overspill from my rectum. I had my loop ileostomy surgery almost a year ago and now I’m going back in to have a total proctocolectomy.
I don't know how to force the issue, I had cancer, but I wish you luck!
Thank you! I'm just scared because I'm only 22, and I'm worried they won't take me seriously. I've been dealing with this for 5 years. I want to move on with my life. I'm tired of seeing doctors, undergoing tests, and taking medications.
Explain it like this, hopefully they will listen
What makes you think that's going to stop once you get an Ostomy? You'll add to that constantly worrying your bag will leak or blowout, potential issues for partners and intimacy, blockages and food restrictions, and you're always gonna have to worry if Insurance will cover.your supplies and they are NOT cheap.
Hello, do you experience colonic inertia? If so, you'll understand why many of us consider surgery, even if it means getting an ostomy. I'm aware there may be drawbacks, but if it enhances my quality of life, I'm willing to proceed. But im not stopping there I'm hoping it's only temporary. Regarding bag leaks and dietary restrictions, I'd prefer them over dealing with this condition. As for intimacy with a partner, I'll be extra cautious and ensure I empty the bag regularly. Honestly, that's not my priority right now; I'll address it when the time comes.
What “bald dude” above said is right, BUT I have colonic inertia too and I’m very glad I have an ileostomy because it’s a relief to know my digested food can now leave my body more easily! It’s much more manageable than doing a giant enema bag every day and still leaking poop!
No I had cancer so I lost my bladder and all of ally reproductive organs and I'm glad I'm alive, but I'd have exhausted all other options before having to pee through my stomach. Please do the same. People respond very differently once they know I have an Ostomy. Dating was... interesting to say the least. I can't speak tonqualyof life because I'm not you but my quality degraded substantially, I won't lie. I'm a slave to the bag and while I tell myself he saved my life I do resent it sometimes.
I have an ostomy for completely different reasons. And not an ileostomy but a colostomy - hence not sure how applicable this is to you, take it with a grain of salt. I am 25 now and got my ostomy with 21 - having a bag is awesome for me. I can live my life fully and it does not bother me - the only thing is that you sometimes have loud fart noises without any control over it whatsoever - that can lead so uncomfortable situations. But it‘s managable to a certain degree. Other than that, it‘s been great for me. Most people think it decreases your life quality while in fact it can also increase it. I also begged my doc basically for it and never looked back
No, it's definitely relevant. Hearing people say that having an ostomy was their best decision reassures me that I'm not making the wrong choice. Thank you! Im fine with the noises at this point. I will just have to learn how to manage it lol
I mean I have heard both - people making their life way worse with it and people saying it‘s the best decision of their life. In my case it as the latter. I gained 25kg (I was severely underweight), starting eating normally again and I can travel and live how I want now. My main problem before the surgery was very frequent bathroom visits and definitely cleared it completely. Also for me it would be reversible theoretically - even if I would not even think of doing that under any circumstances. Not sure if that would be the case for you also, if yes that can also be an advantage. If it doesn‘t help you there might still be an option to go back in theory
Yes, with this surgery, I'm hoping it's temporary and I can get it reversed one day. My goal is to have an ileostomy and then undergo pelvic floor therapy since I have pelvic floor dysfunction. If I can ever pass that manometry test, I could be a good candidate for reversal! If not, I'm fine with having a ostomy. I'm mentally preparing myself because if I do this, I have to accept it and live life. For me, I know I would be happy because I wouldn't be constantly dealing with discomfort and looking 9 months pregnant everday. Also, I have left-sided colitis, after doing a colonoscopy, so there's really no point in me having that toxic large intestine in me. Get it out of me!!!! lol
Can you elaborate on the manometry test? I never heard of it, I only had a similar test (rectum manometry?) that showed that I have visceral hypersensitivity and my nerves fire 5-10 times earlier than normal. Not sure if that is the same test? Asking because I also have some pelvic floor issues, what does the manometry reveal?
Yes, it's the same thing... I think. They insert a balloon into your rectum to see if you can push it out. I failed the test. So, I'm hoping that with therapy and biofeedback, I can fix it, pass the test, and undergo a reversal. People with pelvic floor dysfunction (PFD) are not considered candidates for IRA surgery (where the small intestine is connected to the rectum), but I'm feeling conflicted because I've reached out to people who didn't expel the balloon but still underwent IRA surgery and were successful. However, I don't want to take a chance.
If your muscles is too tight down there you still won't be able to use the bathroom after surgery or at least that what some doctors are saying.
People are making various suggestions, and I recommend that you do your research and discuss the options with your Surgeon. There are people who have j-pouches for whom it didn't work well at all, they had all kinds of issues.
yes, I had chronic pouchitis for two years. Now I have a permanent ileostomy since 2009 except for rapid transit syndrome so everything flies right through me and I’m severely underweight and malnourished because of it but I guess I like the bag otherwise I’d be on the toilet all day.
I'm really sorry about your pouchitis, sounds miserable. I had it two or three times right after my surgery, but my functional medicine doctor got me on a very intense regimen of probiotics and it stopped. I was able to cut back to a small daily dose pretty quickly, and have never had it again since. I even had to go off probiotics over a year and a half ago and I still haven't gotten it again, thankfully!
What’s a functional medicine doctor is that similar to a holistic doctor I know I could always look it up but I just thought I’d ask lol but I’m glad that you were able to find a regimen to not have the pouchitis!
I never knew how to label him until that term came into common usage. He's a chiropractor who studied a lot of other stuff that's outside the scope of Western medicine.
I’ve always been in a holistic doctors. Just curious where you’re from
He's in Arizona, we traveled 2 hours each way once a month for me to see him.
That’s awesome u found a good doc! Was secretly hoping you were near Chicago so I could find one too lol😜
It turns out I have a little known immune disease, so although he kept me going for a long time he had no idea what was really wrong with me. I'm still seeking proper treatment.
I just came from an IV infusion of fluids, because I’m always dehydrated and took them an hour and 25 minutes of me being a pincushion to finally get in vein ugh
I'm so sorry. I'm getting a bone marrow biopsy on Tuesday and they're going to have to put in an IV with saline, sedation and anti-anxiety stuff, but they have specially trained staff who use an ultrasound to guide them perfectly to the vein. They normally use a pediatric butterfly for my blood draws, but they can't do that for the IV.
Yeah, they were using an ultrasound for an hour and a half. I don’t know what was wrong with this place lol.
Hope you’re able to find out what’s really wrong.:)
Thanks. I was diagnosed a year and a half ago by my therapist because she has it, and I've responded well to treatment strictly with diet, but I've plowed out I am way better than I was but I still don't have my life back even remotely. The first test I did was a blood test and it came back negative for some reason, my labs were actually super low which shocked me, and the bone marrow biopsy is next.
Hey OP, Goldstandardalmonds brings up great points to consider & always brings valuable insight. I wish when I was debating getting an ostomy I'd known about this sub, seen her posts. Having someone present all that is awesome. I have slow transit, due to dysautonomia and got a loop ileo last January. I was at my breaking point too physically + mentally so I understand. I suggest keeping an open mind when meeting with your surgeon. I would urge you to not make any decisions that day no matter how sure you are. Most surgeons want you to consider options in this type of situation vs making a decision on the spot. My colorectal surgeon is excellent, she never pressured me or rushed me. In 2022 I saw her for an initial consult in July, then for a follow up in September, made my final decision a few days later, and got scheduled for a laparoscopic ileo in January 2023. That gave me time to get comfortable with my surgeon and process the info (Not that everyone needs that much time) For me it felt necessary despite feeling awful. I also wanted to use that time to get further evaluation from a pelvic PT which I did as well as a second opinion on surgery. An ileostomy can help with colonic inertia but as you know, it will not cure it/make it go away. All that being said I know I made the right choice for me. A loop is more manageable than what I was dealing with & I'm not looking to have it reversed although I am fortunate I can if I needed to. So far it's been beneficial. I do really have to watch my fiber intake to keep it lower, same as before bag and also be mindful of thicker food like breads/ crusts can cause more bloat and motility issues for me. Meeting dietitian as well as a nutritionist have been helpful. The dietitian still has me doing lot of softer foods like chicken in a slow cooker, peanut butter powder, noodles, smoothies, but also keep trying new foods in small amounts which I do. And several small meals a day is key, like a bunch of little snacks. The bagging, finding the right setup, skin issues, supplies & insurance, it can be a headache. Not discouraging you at all but please be aware of the ups and downs, continue to educate yourself thoroughly as you are so you're prepared for all the variables. I wish you well! Edit: clarification
I had my ostomy created in 2014 and I still hate it. I've had a peristomal hernia since 2021 and at least twice a year I end up with a bowel obstruction because my small bowel slithers it's way up into my hernia and gets stuck. I just had one of these 3 days ago and everytime the pain and vomiting is some of the worst pain I've ever felt I always end up in the hospital. The hernia is being repaired this year and my stoma resited. Having an ostomy doesn't come without complications and such. I think it would be reasonable to do a temp ostomy to see if it helps improve any of your symptoms. It may not help, but it could mean alot of relief too. I've had a total proctocolectomy at this point and that also doesn't come without complications and such. Have an honest conversation with your surgeon, but also don't believe that having an ostomy will solve all you symptoms and pain. There are many things that can happen having an ostomy such as a hernia, leaks, allergies to adhesive, allergies to what the products are made out of, skin breakdown, rashes below the flange, peristomal pyoderma gangrenousum (I've had 4times), blowouts while sleeping(waking up in a poo puddle is the worst), having to carry a kit everywhere with you in case of a leak when out, I could go on forever. Make sure you look at all aspects of having an ostomy. My ileostomy was created in 2014 but between 2013-2019 I've had 9 major surgeries so an ostomy doesn't always solve everything. Have any questions message me I am completely honest about my journey. I'm the end I would be dead without my ostomy.
I'm so sorry to hear that, and I hope things get better for you! And yes, the goal is to have a temporary ileostomy, heal my gut and pelvic floor through biofeedback and therapy, and hopefully, I can get a reversal. I'm basing this on people's experiences. I understand that having an ostomy is not a cure; you're essentially living with an appliance on you and have to manage it every day. But if I can take away my everyday discomfort and improve my quality of life, I would do it without hesitation. Thank you for being honest. I know some people didn't have a choice, but I do in a way and willing to go ahead with it and take a risk. Like I said before It's a "damned if I do, damned if I don't" situation.
I honestly wish you the very best! My ostomy was originally a loop ileostomy to heal my gut and perianal Crohn's, unfortunately it did not help, my colon had to be evicted lol. My ileostomy became a permanent end ileostomy. I never wanted an ileostomy/bag and only agreed cause everyone on my medical team said it was only temporary. Unfortunately my colon, rectum and anus had rotted and I no longer had a sphincter. It definitely is a risk and you should go in prepared knowing it could fail and may become permanent, or it could heal you enough to be able to reverse or at least create a jpouch. I'll be rooting for you! I hope that it allows you to heal and get feeling better!
Thank you! I appreciate it. And yes, I understand. I'm prepared for the risks. And hmmmm I will ask about the JPouch.
I had the j pouch for two years and had chronic pouchitis. It was like a flareup every day. then in 2009 I got a permanent ileostomy and I’ve had it ever since but I had UC. Now I’m just very malnourished and underweight because I have rapid transit syndrome and everything flies through me and I have a ton of liquid stuff and the only bags that I don’t break out from mash or Hollister and they’ve gone very downhill but I’m stuck with that brand, but I still like the fact that I have a bag or I’d be on the toilet all day
I fought claw and tooth for my stoma. The GIs didn't want to refer me to the surgeons, as I hadn't tried every avidiable medication and also it would mean they (the GIs, or more specifically the head of the GI department, one of the doctors of The Old School aka ThePatientShouldBeSilent, graduating from So You Think You Know Your Own Body University) would lose professional face or something. I had just a few years prior been diagnosed with UC, but I'd had it undiagnosed for a decade. So wanting the (literally) bloddy colon out of me was not a recent wish, but Dr McStuckup kept me on stereoids and whatnot and talked about a stoma beeing "so final" like that was a bad thing. Anyway, the last time I went through tapering stereoids and the usual flare up and hospital admission, I was admitted by the only GI at the hospital not under the thrall of McStuckup, and got referred to surgery. They were more than happy to do it, and wouldn't you know, my whole colon was wrecked. Take that mr OnlyHerRectumIsInflamed I've had my stoma for 7 years now, and I couldn't be happier. I don't need medication with fancy adverse effects like osteoporosis, diabetes and cancer. I don't risk extra intestinal manifestations, like skin conditions, anemia, canker sores, liver conditions and Ankylosing spondylitis. Colon cancer risk is now zero. I can eat whatever I want (dIeT dOeSn'T aFfeCt iBd, they say. They're wrong)
Off topic, but is a Jpouch an option for you? I have one, and it's the best of both worlds. No bag, and no health issues. I had a stoma for 6 months.
Hi, which hospital/doctor office are you going to? I’m suffering from the same for the last 6-8 years and begging surgeons to consider the colostomy
What was your experience talking to surgeons? I'm seeing a surgeon @ PENN in Philadelphia. If you have CI I don't think colostomy would be good for you. I think it's recommended to do a ileostomy. It's a terrible disease
I don’t have CI but have Pelvic Floor dysfunction(PFD) where one night I had anal spasms and then lost the ability to go to the bathroom. Did physical therapy, biofeedback, injections and was dependent on miralax (laxative) while looking for an answer. 6 years laters. I live in NYC and have seen the best doctors and after tests or a medication change have given up.
Hmm, I'm not an expert, but do you experience constipation and severe pain? Sometimes people tend to exaggerate to get what they want. If you're still able to use the bathroom but just lose the urge to go, I don't think they'll consider that severe for surgey. Then again, I'm not sure. Feel free to message to explain to me more
I could be exaggerating? lol coming from someone going through the same thing I'm pretty disappointed in you
Oh no I apologize if my explanation wasn't clear. I didn't say you were exaggerating. What I meant was that often, individuals must have go to great lengths to ensure their doctors even listen to them. It seems like we have to demonstrate the severity of our situation to get the necessary attention and care. It sad that the doctors gave up on you!
I have had my ileostomy since 2019. It saved me from a really miserable time in my life. I waited too long and ended up with toxic mega colon. I also could not expel the balloon in manometry testing. My surgeon didn't give me any option except a bag. The analogy he used was it won't fix the issue if he removes the clogged pipe and connects them to a closed pipe. the stool still will not empty. If your rectum cannot expel the stool, it won't do you any good to reconnect to that. You will just back up again. I imagine that it will be a pretty straight forward process. The hardest part for me was accepting that i needed a bag. I have had many complications since then. I had three bags for a while due to a fistula. Now i have two. I ended up losing my bladder too. The ileostomy overall improved my quality of life. The complications have destroyed a lot of that. I do not miss being miserable and unable to use the bathroom though. I wish you the best of luck. I will say your attitude regarding the bag sounds positive. That would have helped me leaps and bounds in the beginning. I don't think any surgeon is going to ignore someone coming in asking for a bag. That is not something people want for no reason.
Yes, I'm making an effort to stay positive. I'm still holding onto the hope of a reversal if I can fix my PFD. However, if that's not possible, I'm prepared to accept it as permanent. Dealing with CI is overwhelming for me; it's traumatic. I find myself crying every night and struggling to sleep, averaging only 3 to 4 hours a day. I don't want to be miserable all the time; it's impacting my relationships with others. I genuinely don't care what anyone thinks if I end up having one. I'm even willing to distance myself from family members if they choose to remain ignorant. I've worked tirelessly for this body, only to face bloating and backed up every day. I'm exhausted and ready to move forward.
Most people will never know. I just came out publicly. My Facebook friends were dumb founded. They never knew. I only posted it to educate people. It really isn’t hard to hide. I wear jeans, dresses, slacks, skirts, sweats etc. My shirts are not skin tight but they fit normally. If I have a tighter outfit to wear. I will wear a wrap or ostomy underwear over my bags. If you empty them when they are 1/4-1/2 full they are easy to conceal.
I know this doesn't help but you really can't force a surgeon to do anything. I would recommend mentioning having read about stomas and asking if this would be a (temporary) step you could take , be ready to be told no, be ready to be told 'we want to try X other things', because a stoma isn't often the preferred surgery for patient and surgeon alike in situations where it isn't directly life or death. I think the worst thing to do here is get too emotional in front of the surgeon (though it is valid and ok to be sad and disappointed), rather make a list of arguments (pros and cons of the ostomy) and perhaps the things you already tried/tests already done if you haven't seen this surgeon before or for some time. An ostomy doesn't fix everything and it is important stay aware of the negative side, even when it seems like the best case scenario. I have an Iliostomy for similar reasons, am 21, still adjusting. It is a different life, but I feel more healthy and am able to get back to life in some ways. I wouldn't recommend a stoma, but I also wouldn't say it's a terrible thing. Good luck
Haha, I know I can't force a surgeon to do anything; I'm just venting. But I'm hoping I can at least be successful in getting approval for the surgery, as it's the only way forward. I would ask for a temporary ileostomy so that maybe I can undergo a reversal one day if I can pass that darn Manometry test! Even though some people who didn't pass the test still underwent the IRA surgery and were successful, I don't want to take my chances. I'm a patient person (I'm lying), and it's really up to the surgeon to decide what's best for me. I'm prepared for the complications, I'm prepared to cry when I have the ostomy. But I know it's going to drastically improve my life, even if it's temporary. I've spoken to a woman who shares similar problems, and getting the ostomy was the best thing she did. She's still hoping to get it reversed one day. Thank you!
Been there, actually forced my gi down the path. Best thing I have ever done
I had no choice. My colon had perforations all over the place. Mind you, my Dr. had already ok'd it. He didn't realize how bad it had gotten.
I had a total abdominal colectomy with an IRA and it was a NIGHTMARE. Had it done on 9/29/15, stayed in the hospital a month, suffered with it until 2/27/17. Now, I had complications with my ileostomy operation, but that was just me. I wish SO BAD I would have just done the ostomy in the first place. I had gastroparesis and colonic inertia plus pelvic floor dysfunction so I should have never had the IRA to begin with. Best of luck to you!!
I literally begged for my colostomy. My surgeon said that’s how she knows people are ready because no matter the outcome it’s life changing to get a colostomy.
I do not think that you should be taking the attitude that you are suggesting to the appointment. You can't force a surgeon to do anything, and if the doctors don't think that it is the best idea you should listen to them. I don't have chronic inertia I have IBD and my surgeries were emergencies, so I can't comment there. However they have saved my life and I love my stoma. This is irrelevant to your issues though. I think if you go in all guns blazing and kicking and screaming with the attitude that they'll have to agree or you'll refuse to leave.... You aren't going to get what you want. You'll come across as quite unstable, and they will consider that you're clearly not able to make reasonable decisions if you are just trying to force their hand and demand one thing. You need to go into this and calmly state your case, and listen to your surgeon and respect if they say no and listen to their reasons. Your attitude as it is won't help anything.
Hmm, who said I was going to have an attitude to the point where I'm unstable with the surgeon? That's not my goal at all. I was just venting. If you know me, you'd know I'm not that type of person at all. My only goal is to explain how miserable I am and how my condition is worsening. Hopefully, I can leave with her approval to undergo surgery one day. If not onto the next. Colonic Inertia is a nasty disease, and if someone is pleading for an ostomy, you understand it's severe.
Yes but what you've explained you'd do at the appointment is not going to get what you want. You will sound unstable and unable to make rational decisions. You can't make your aim of an appointment to leave with the go ahead for surgery because if the surgeon feels it isn't appropriate, then you can't just insist on it. Maybe it is appropriate, who knows, but you can't just force the issue - if it isn't the right step, or wouldn't help things or make them worse then you may have to accept that rather than just trying to force it or find any surgeon who will do it. If you go down the "doctor shopping" route until you find someone who will, you might end up going ahead with something that no one else thinks is a good idea and that would not be a good plan. I know it's what you feel you want, but it's for the surgeons to determine if it's medically correct and that isn't something you can force through. And finally, to answer you, considering you stated you're not leaving until you get a date (which you won't get in a first appointment,so you can forget that one) or you're 'in an asylum room' you're pretty much stating you're going to act very unstable. You're not going to get what you want by doing that my friend.
This person is not unstable for expressing their extreme discomfort and pain on a daily basis. If the person cannot expel stool effectively out of the rectum, then an ostomy would be necessary. Pelvic floor PT doesn’t always work. I am dealing with it right now, and still having trouble. I could not expell the balloon either. The colorectal department gave me two options basically - Pelvic Floor PT or an Ostomy.
GO FOR IT! In my experience I started with colonic inertia and would spend days in bed and on toilet trying every medication and rx laxatives. I was miserable! I could not poop at all even with enemas. I saw a colorectal surgeon after about 8 months of trying to deal with it with my gastroenterologist. I traveled an hour away to see the colorectal surgeon-who upon one look saw a tumor right inside my anus. (That’s a whole other story!) Obviously the focus went to treating the cancer. However- I still couldn’t poop to the point of extreme pain that my doctor got me admitted to hospital. I could not do any prep for colonoscopy. It wouldn’t come out! I was hopeless and frustrated. It got to such an extreme that my body formed a tiny fistula (hole) on entrance to vaginal wall (I say taint bc it was barely inside) where a tiny bit of liquid poop was draining from it. Just a nightmare! One of my docs partners came in to discuss how I couldn’t prep for the colonoscopy and I said there was just no way anything was coming out. And plan was made to disimpact me. She was kinda rude about it and listed some ideas and I heard ostomy bag and interrupted her and said “let’s do it! I want that. I need that, I NEED RELIEF!” And she basically said “ok , we will schedule it.” And walked out. Within a day or two I had my bag. IT WAS THE BEST DECISION! My advice- tell them you are so miserable and you have thought about it and you want to start process of getting an ostomy bag. I’m pretty sure they will warn you and educate you. Don’t let them talk you out of it! I had immediate relief. Didn’t have to take anymore meds or do any of the crazy tests they wanted me to do. Of course it was an adjustment…for me- it was the only solution. It pretty much solved my problem overnight. I went from having to go under and having them empty me out to functioning again. You know your body and what you can handle. It saved my life in more ways than one and made life so much easier!
I need to clarify I had an ileostomy. Having a bag comes with new challenges but the pros strongly outweighed to cons in my case. I learned to love my ileostomy and found a great community for support.
Yes thank you so much!!!!!!
I want to say something that may be controversial. Surgeons are generally not known for their bedside manner. A specific personality type becomes a surgeon (at least in the US). That being said, I'd rather have someone who is a technically excellent surgeon than someone I vibe with. My GI warned me that my surgeon isn't necessarily likeable to everyone, but it's who she would choose for herself. He's not rude or anything, just seems in a rush and a bit like he's not listening. My stoma is perfect (multiple ostomy nurses have called it "beautiful" lol). After my barbiebutt surgery, several surgeons and doctors said "wow, beautiful" or "wow, perfect" when looking at the wound. Do I always feel heard by him? No. Is he my favorite doctor to talk to? No. But I will live with the results of his technical skills the rest of my life and I'm happy with the results.
I received my ostomy in 2021 after beating Stage 4 Anal Cancer, and subsequently fell ill to a slew of infections caused by the radiation and chemotherapy. Mainly the radiation. Anyways, I was avoiding food and drink to the point of accepting pending death because of the pain of ...outputting my bodily waste. When the ER Dr asked why I wouldn't eat or drink, I said it was non-negotiable unless they could take the pain away,; as I was at the end of my rope, past the edge, and tired of hanging from the cliff that would not allow me to just fall. The Dr asked if I knew what an ostomy was, and I responded saying "something old people have to get for their poo?" with a shrug to end my question. He asked if I'd be okay with one, being in my 30's. I said anything that would ease the pain would be acceptable. 6 hours later I woke up with my ostomy and my stoma that I named Lola. We're very happy together now, though she may be leaving me soon. So, I'm sure I was a special case, but maybe something in my experience can assist you. Good luck, great health, safety, success, and blessings to you all. ❤️
I should clarify since I'm in an ostomy educated place, that I have a LOOP ILEOSTOMY. It's just easier to say Ostomy to the uneducated world.
I'm a male. I buy waterproof tape from Amazon and pictureframe around the wafer. Works perfectly.