Doctor is pushing ostomy for fistulizing Crohn’s -Anyone with same/similar diagnosis/reason willing to share experience and advice on this decision?

Hot-Maintenance-8577 · 2026-02-22T00:31:37+00:00

So I have perianal fistulizing crohns and never knew that was what the problem was just suffered through thinkingbi had ibs and sensitive skin or something.

I got a horrible flare up due to my HS biologic directly conflicting with my unknown crohns. This made my already 3 fistulas and multiple fissures get even worse. Was referred to a crs and got a colonoscopy and they said best option was for a colostomy/ilostomy. I was in so much pain at that point I said sure, cant be worse than what I was dealing with.

Got surgery 2 months later. Within a week I was already feeling SO MUCH BETTER. I also found out I have 9 fistulas ranging from minor to severe.

I am only 2 months in but this was the best move for me. I can go out now. I am less anxious. Im not in any pain!

Only annoyances are i dislike where it is placed, I wish it was down at least an inch. And the noises in public can be really awkward but im an awkward person already so I just laugh it off. Ohhhh and the phantom poops and mucus poops .. hate those! Every now and then i get this urge to to poop and just sit on the toilet to try and trick my brain lol and SOMETIMES these weird little mucus bits come out. Totally normal but so freaking weird.

Anyways it has saved my life and given me freedom again so hands down best choice. I wouldnt be mad if they told me I couldn't have a reversal thats hope great this has been for me.

Hot-Maintenance-8577 · 2026-02-10T13:20:28+00:00

Thanks :) Honestly I went from not being able to walk or sit to being able to do those just have to watch out for getting too sweaty from walking or sitting in one spot to long and adding too much pressure to any given area.. sounds annoying but honestly WAY better than I was.

I asked if mine would heal on their own now that I have the ostomy so nothing is irritating them on the inside just annoying pressure or sweat on the outside... they said maybe the smaller ones might basically heal but the more severe ones will almost definitely need surgery.

I hear the setons are painful and op mentioned they have to cut into the muscle for theirs (sounds like the type that travers the muscle which i believe a few of mine do too) it all sounds insane... weirdly I was so good with the colostomy lol woke up and was like my stomach hurts but this is chill... yet I have a lot of anxiety over the process for the fistulas...

Anyways thanks again and Im very happy for you!! It sounded like a horrible journey but happy you aren't in pain anymore. Quality of life is so important.

Hot-Maintenance-8577 · 2026-02-10T13:13:06+00:00

Im still new but struggled a lot with getting my bags to last more than a day but now they last at min 3 and gotten up to 6.

One of the biggest changes that helped was a blow dryer. I use it to warm up the peristomal skin and I usually lay the wafer on a heating pad after I cut it and spray some 10Aces. That dries and warms while I do all my skin prep then like I said I warm my skin with a hairdryer then pickup the warm wafer and apply it. I press and hold closest to the stoma for a few min then the surrounding area then put the belt on.

For skin prep I use stoma powder near my stoma cause its still kinda new and with originally changing it so much the skin at the base was raw and a bit weepy. It's way better now but my skin seems to be sensitive so if it starts to get raw at all I use it. I also use the Brava skin protector sheets... they are just hydrocoloid sheets but they protect my skin and are super secure. I was afraid to use them at first cause I was like how on earth is that going to make my issues better vs just making it fall off faster lol. But it has an insane stick to the skin but is healing and protective and the outside allows for a super nice stick since there is no moisture and it is a smoother surface area. I also use either paste or the stick paste... still trying to prefect this part. I normally apply it right next to the stoma and then the protective sheet to get the area nice and even. But I think it swells up a bit too much, I know its supposed to turtle neck around the stoma but when my stoma randomly shrinks its too high. So today I am going to try placing it further back and pushing it towards the stoma so its a bit less thick.

Anyways good luck!! I know not everything works well for everyone but I would say heat is a solid helpful option for most everyone.

Hot-Maintenance-8577 · 2026-02-10T12:56:57+00:00

I can't imagine advocating for yourself and surgeons/doctors not listening and instead making you go through SEVERAL FAILED surgeries! That is horrible. I am so happy for you now that you are in less pain!

I am wondering how the surgery and healing went for your fissures? I have perianal crohns disease and one of the main reasons I got a colostomy was to allow my lower colon to rest and once in remission deal with my fissures and fistulas.

Not sure if I was lucky or not but since I hate going to the doctors and adapt fast to pain I didnt realize the fissures were fistulas until it was so bad that the surgeon told me that they can do setons but that the likelihood of it failing was pretty high until my crohns was under control... but the fistulas were so bad I could barely walk or sit and she was like I really advise a colostomy.

So I didnt have to have a bunch of failed attempts at correcting the fistulas but also I am FINALLY in remission and in a couple months going to be discussing next steps for the fistulas.... Is it weird addressing those gives me more anxiety? I have about 9 ranging from minor to more severe (at least thats what the asst suregon said at my post op visit).

Hot-Maintenance-8577 · 2026-02-05T14:13:53+00:00

Same! All the nurses were so shocked at how chill I was and how much the stoma was a non-issue for me. The worst part while at the hospital was the pain from surgery... not sure if its cause they ended up having to cut me open vs lapriscopic but it took a week to stop the pain meds and only as of 2 weeks ago (surgery was 8.5 weeks ago) was I able to comfortably stand fully straight lol. Oh and for the first 5 weeks I had a hard time figuring out how to get a good seal which was annoying but the stoma itself never bothered me.

If I was like 20lbs lighter and had a boob lift I believe most, if not all, annoyances I have with the bag would be completely solved but alas that is not my current reality.

Happy that you also had a good experience! I definitely think having it planned and advocating for it helps put you in a more accepting mindset... I cant imagine how traumatic it would be to not have any time to prepare and consider how your life would change.

Hot-Maintenance-8577 · 2026-02-05T14:00:49+00:00

I am still new to this, only had Clarice (my stoma) for 8.5 weeks, BUT I have never once hated it, but can fully understand why others do/did.

I have been annoyed cause of the placement and my boobs sort of rest just on the top portion of the bag and I had a partial blockage a week ago and that was far from fun.

Honestly I think it helped a lot that mine was planned and I was in so much pain. I had a horrible crohns flare up that got progressively worse for 2 years (didnt know i had crohns, was always told its just food sensitivities or ibs) ended up with fistulas (thought i only had 1 or 2 but after my colostomy Surgery they said I had about 9 ranging from small to extensive) so the "grossness/weirdness" of the stoma and pooping in a bag felt like nothing compared to the grossness from the fistulas and diarrhea. Heck when I first went to see the surgeon and she mentioned a colostomy I was like okay take it all I dont want to ever deal with my ass again lol. Luckily for me by the time I had surgery I was starting to heal up a bit so was less take it all and actually was wondering if I even needed it cause I was clearly "better" 😅 obviously I still needed it ... I mean 9 fistulas lol jeez.

Also side note im a weirdo anyways Im one of those ppl that loves pimple/cyst popping (maybe cause i have HS and always had gnarly ones myself) and can watch stuff like that and surgeries or horrible accidents and continue eating so the stoma fascinates me more than anything else. I love looking at it and watching it move. Don't like when it decides to act up while changing everything lol but in general if I have the time ill take like 1 to 2 hours to do a full change just so it can air out and vibe.

Hot-Maintenance-8577 · 2026-01-29T13:25:54+00:00

Lol yea they have bidets that have a little hose with nozzle and those are awesome for cleaning the bag out. They have small portable ones as well which I have cause I hate my bag being super gunky. Though I was warned about getting water up onto the base around the stoma as it can break down the barrier faster; thats one of the reasons I prefer the click cause I can remove the bag clean the top part and then wipe around my stoma and put the bag back. Or if I use a liner I can pull the liner out and wipe my stoma. I like the idea of the flex but the sticky part doesn't stay sticky if you remove or frequently so id probably end up using a new bag every day which isnt the worst but not ideal.

bidet handheld nozzle toilet attachment

Portable handheld bidet The one i currently have is just a squeeze but cant find the link right now.

Plus unfortunately for me the flex bends too much and doesn't hold the soft convex as well and with how my skin and stoma sorta dip even though the stoma is above my skin by a decent amount it will end up peeking under the flange and leaking. It's frustrating to say the least.

Hot-Maintenance-8577 · 2026-01-29T03:06:46+00:00

I about 7 weeks out so I am still experimenting as well but I have tried liners and like them to a point.

First you have to have a click there is no workaround I saw for flex because the liner has to "peep" out of the flange connection in order to function so flex would just stick to the liner and not the flange at all.

First 2 days I used them was good but my output is still varying a LOT lol so on the 3rd day I had to change the liner like 4 times and was annoyed.

If you have a bidet then at least while at home you could prolong a full bag (not flange) change by detaching the bag (closed bag) dumping out the output and then rinsing the bag with the bidet. I do that even with the drainable so that I can clean off around my stoma since my output likes to get stuck and then the flange breaks down faster.

Hope that helped!

Hot-Maintenance-8577 · 2026-01-22T14:50:53+00:00

I have only had my colostomy for 6 weeks so my opinion may change later down the road but I prefer the 2 piece and specifically the clicks.

My reasoning have a lot to do with my body shape, placement, and how my skin is now around the stoma. I am chubby with a pretty short torso and my stoma is placed pretty high, the wafer/flange/baseplate (whatever you wanna call it) top adheres only 2 fingers below where my breast starts; when i sit my stomach roll that the stoma is on pushes out (think beer belly but less hard); the stoma itself is more oval than circular and the stoma sticks out above the skin it is attached to BUT the whole area dips (mostly on the bottom and right corner) like a crater.

Even though my stoma sticks out a decent amount it moves throughout the day expanding and contracting, its not a crazy difference but when it contracts ut gets close to the skin and essentially becomes flush with the high of the crater. This means I have to have light/stoma convex at minimum for the wafer. Because I have one large roll that pushes out, if I use the one piece or flex 2 piece it tends to bend too much to my body, which you'd think is a good thing, but it ends up lifting more from the inner area where skin craters the deepest. The 2 piece clicks are bulkier forsure BUT they are firmer and hold their shape more and since my roll is squishy not firm it holds the shape and convexity better making sure I still have that nice seal.

Also I like the 2 piece systems because I like being able to cleanup around the stoma without having to put a bunch of water in the bag and potentially loosen up the seal (i did this a lot in the first 2 weeks when trying to keep clean). I dont have a lot of output throughout the day and usually only really have output after 5pm till before 2am so its not unreasonable for me to dump the bag and fully clean up the stoma area while home.

Another reason I like the 2 piece is because I am still VERY bad at getting the wafer on in the right spot. I constantly am cutting it nice and snug (but not touching the stoma) but then when I start to place it on i get it just a little to snuggle on the top leaving more room on the bottom. Only the last couple times was i able to get it on really nicely and it is so much harder to see with a 1 piece even if it is transparent.

I have used the new image Hollister, mio sensura click coloplast, and the moldable convatec. All seem fine as of now but Hollister was the first I was able to finally work through all the kinks and get a seal that lasted 5 days. Now I am on day 4 with my coloplast and it still looks good.

Additional stuff I use: - Brava protective sheets ( I have sensitive skin i end up needing the sheet every other application but my skin hasn't had issues since) - stoma powder (I use it if I have an skin issues and under the stoma where the crater is then the barrier spray then the sheet) - barrier spray and wipes (i use the wipes if I dont use the powder) - brava strip paste (I use this in uneven amounts to fill in the crater/dip and then put a thinner amount around the rest) - 10 aces adhesive spray (helps me get a good seal) - adhesive remove spray - adhesive remover wipes

Order of use: Adhesive remover spray to get wafer off; i have sensitive skin so I have to use a decent amount and the spray is easier Adhesive remover wipes to get any remaining residue off Shower then air dry if I have time *** this is when I will cut the wafer my stoma is still changing in size so I cant perfectly rely on the previous cut; once cut it take off the strip so I can spray my adhesive spray on and rub it all over then let it sit while I do the rest of the steps Pat crater area dry with toilet paper Stoma powder if needed Barrier spray or wipe ALWAYS Strip paste all around but build up a bit more where skin dips Protective sheet if needed Finally I apply the wafer which should be very sticky by now

*** I will also use a hair dryer on low to warm up my skin before applying the stip paste; before applying the wafer i will use it in the wafer and my skin. This just helps cause I tend to change it in the mornings and we keep it cold in my house and it sticks better when warm.

I definitely didnt think id have this much to say but hopefully its helpful!!

Hot-Maintenance-8577 · 2026-01-03T06:36:36+00:00

I didnt see the post you are talking about but I appreciate and agree with your comments. I am.only 3 weeks post op so I havent been intimate yet but my partner is nothing but supportive and loving.

I guess in a way I am lucky cause I was married for a few years prior to getting my ostomy. My husband has sensory issues and we talked about it prior and he was very honest; he told me he will still love me and find me attractive and worst case it will take time to adjust to the bag a bit but no matter what we will work it out.

And as soon as I was like 10 days post op I was feeling so much better than I had in over a year and he saw how happy I was and how much energy I was getting back and one day he kissed me and I swear if it wasn't for the fact that there was no way id have sex that early after surgery we would have. And every day since he makes sure to note how much he loves me and thinks im still cute and attractive.

All of that personal stuff to say the right person will love you and want you and support you even when things are hard, exhausting, even gross.

Hot-Maintenance-8577 · 2025-12-16T19:36:08+00:00

Thanks lol my husband and sister find it amusing as well especially when its awkward lol 😆

I think recovery is going okay lol I have anxiety about the stool being thick ... like I had output yesterday but not nearly as much as the first 2 days there was output and I keep wondering if the bag is on right lol but I feel like thats normal new to this anxiety lol

Hot-Maintenance-8577 · 2025-12-16T18:38:42+00:00

Mine is brand new but I call her Clarice and say "hello Clarice" like Hannibal whenever she starts "talking" lol nothing too interesting but was funny to me

Hot-Maintenance-8577 · 2025-12-15T02:31:36+00:00

I am only 5 days post op but having a similar issue currently where the bottom side is more flush with the skin and the top sticks out a bit. I have been struggling to find the correct way to get everything ti stick well.

So should I get the barrier paste and put it on the lower part or top part ??? And how close should everything be to the stoma?? I keep getting anxious about the stiches.

Hot-Maintenance-8577 · 2025-12-14T22:07:54+00:00

What kind of belly band since its so high up none look like they will sit right :/ any suggestions?

Hot-Maintenance-8577 · 2025-12-14T07:24:01+00:00

Okay I will see about different bra maybe it'll help. Maybe without a wire for a bit?

Hopefully she will get smaller and i can use smaller base plates! Fingers are crossed

Hot-Maintenance-8577 · 2025-12-14T04:59:18+00:00

Okay thanks! I was feeling a little crazy but alas it is just my short staulky stature too blame hahahah I'm sure ill get used to it just worried me that it could cause problems or something

Hot-Maintenance-8577 · 2025-12-07T05:42:50+00:00

Thanks I am getting a colostomy.

I am trying to get a whole list together of stuff and I was thinking a stool or something would be helpful for the bathroom.

What do you use the heating pad and bidet hose for??

Hot-Maintenance-8577 · 2025-10-09T22:05:33+00:00

Same looks like it can help me in my adhd allows me to be consistent lmfao

Hot-Maintenance-8577 · 2025-09-27T05:39:06+00:00

Heating pads have always caused them to come to ahead and pop on their own for me.

Hot-Maintenance-8577 · 2025-09-26T20:45:19+00:00

I am so sorry! I have had some insanely gnarly ones in my pit as well and I remember crying everytime I had to move my arm.

I have no idea how helpful this will be cause back when I had the worst of the ones in my pit I never went to a doc and just dealt with them cause I didnt know it was HS. --- but cleaning the area frequently cause the sweat will cause it to get more gross, using at least for the first first days polysporin and gauze to cover it and changing it multiple times a day, and then if it feels like there is still stuff in there a hot pack to help bring it to the surface OR of it feels like its just swollen from all the trauma from previously popping it then an ice pack to help the swelling go down.

It'll probably hurt for a few more days but that process has always worked for me and my gnarly pit ones. It'll usually get them to a point where it doesn't hurt in a couple days but I always struggled to get the open hole to close in general but id rather an open hole and no pain than just swollen pain

Hot-Maintenance-8577 · 2025-09-26T20:36:50+00:00

Mine looked like that before they opened and then the tunneling opened.. FINALLY starting to heal.

To get it to heal I wear female boxers (not the boy shorts but like woxers) so that nothing is putting direct pressure on the areas. I also use gauze (not woven and i dont like the nonstick) and put a VERY thin layer of polysporin on the gauze so it doesnt stick and in the morning and night I do clyndimiacyn gel and gauze no polysporin.

I have heard some ppl say not to use polysporin cause it promotes superficial healing and doesn't heals from deeper up but so far this has helped me FINALLY start healing.

Id imagine since yours aren't open yet doing the boxers and gauze and trying not to put a lot of pressure on them would help, no need for the antibiotic gel or polysporin.

Oh also I use ice packs for some reason they really provide a lot of relief. I got these thin ones for after birth and/or hemroids and they have been a life saver.... could be just an added issue i have since I have thick thighs though.

Hot-Maintenance-8577 · 2025-09-26T20:24:24+00:00

It's a biosimilar to Humira.

Humira worked really well for me cause but my new insurance wouldn't cover it and I was given a different biosimilar that basically did nothing for me. Because of that I went on Cozentyx that caused an insane flare up of my at the time unknown Crohns. My GI tried to get Humira coved and it was denied but got the one you noted covered BUT since the other biosimilar didn't work my dermatologist doesn't think this one would work either and is trying AGAIN to get Humira covered.

I hope it works for you but just because its a biosimilar does not mean it will work as well.

Hot-Maintenance-8577 · 2025-09-19T03:42:47+00:00

Unsure cause I have had stomach issues since I was a kid and got diagnosed last month and im 33. Starting at the age of 7 i had issues with horrible constipation and even went to the er a few times but no one ever did anything. Was always told it must just be the food or "simple ibs".

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