Does anyone with Crohn's even get a stoma anymore?

I should know better, but OK, I'll bite...

First, EVERY post here about surgery is not from people with UC. I have definitely seen posts by people with ostomies due to cancer, Crohn's (blueglass is one, I think) and other colon/intestinal disorders. There are also MANY of us who had UC who are NOT in one of the takedown stages because we either chose or had to go with a permanent ileostomy.

And I think plenty of people here have showed that they DO care about you and your situation and have tried to help the best we know how. That said, I am sorry to hear about your fistula, sounds like it could be a pain. Is it something that is easily fixed by meds or anything? My stoma has some odd lumpy spots around the base that make it tough to fit a wafer and I had some trouble with ulcers on it at one point too....they can be tempermental little buggers for sure!

I don't know much about stoma revisions, but have heard that sometimes they can be done fairly easily....I guess it depends on just how much work needs done. My stoma is RIGHT where the waistline of most all of my pants sit. I never really complain about it, but my surgeon offered the idea of moving it in the future if I really wanted to. Seems like an extreme move just to get my pants to fit better though...HA!!

I have heard of multiple Crohn's people getting stomas. But you are right, there's aren't as many. I think it's a bit rare for the colon to be so affected by Crohn's that removing the colon helps the person, so you don't see as many.

Do you ever check out the Crohn's forum on this board site? Maybe there's someone on there?

Here's a story of another Crohnie, albeit she's female. http://www.girlswithguts.org/2012/08/09/jess-story-pregnant-with-an-ostomy/

Also one of the organizer's of Girls With Guts has an ostomy from Crohn's disease.

I have Crohn's. It nearly killed me. Now I have a stoma, most likely for life but that will depend on what the surgeon says. my colon is shot and needs to come out so very unlikely for a reconnect.

Even with all that has happened to me, (most recently Shingles), I am living my life. In fact, I just got notification today that i won a new position! I don't know what more you are looking for. People have ostomies and stomas for all kinds of reasons, Crohn's and UC are just a couple of reasons.

NCoT- Like UCWhat? i have seen wuite a few crohnies post here re getting or having ostomies. Granted the UCers are the lions share. FWIW, though I almost certainly have UC and am fully authorized to do 2 more steps for a jpouch, I am inclined to just do this for life- And I certainly don't "love" my stoma, and am even having little issues such as my first (though it seems a one off thing) leak. Personally, even if the odds are low, I just dont want to risk chronic pouchitis, poor pouch function, etc but like everything related to these assinine IBD conditions, the choices often seem dxxxxd if you do and dxxxxxd if you don't. On the whole I think my quality if life is better than it was with UC but there isn't a day that I dont curse that I had to make this decision, especially as I managed most days to live an extremely actuve life with 3 or less soft formed BM's a day... But I was at the very least low dose pred dependent and even then needed higher doses once it twice a year briefly so I finally said enough is enough. I advise applying the Italian driving philosophy- throw out the rear view mirror and say "what is behind doesnt matter, only what is ahead matters". Sorry to ear re. Stoma issues- hopefully it will not be anything more than minor surgery. i have to get surgery myself soon to repair a too slow healing opened incission thT is like a big crater which needs to be packed 2x a day- fortunately the lower ab layer is perfectly healed and the surgery will just be to the skin part.

UCWhat?- my stoma (after all my obsession before surgery) ended up more or less at my beltline, for lack of other good locations. Well, it is at my jeans and dockers and shorts beltline and slightly below my work pants beltline. What I pkan to do- once my incission is fixed and healed - is wear a stoma guard/belt like the osteoplex one- looks like be,thine is a nonissue with it.

NCOT I have Crohns and was due for surgery today for a proctocolectomy with end ileostomy but it was cancelled at the last minute and just waiting for a new date. I'm about to be in your situation so there are more of us here than you think. I'm guessing by your last post that you are in the UK? So am I.

I know it's hard. I have colonic inertia which is a paralyzed colon and anismis which is a pelvic floor dysfunction. Those are both rare conditions and I have only met one other person that had to have an ileostomy because of it and it was on this very board.

And I have had my stoma for 3 years and have yet to meet one person in my real life that has any kind of a stoma. I feel alone with it at times, but I have all you guys here and that helps.

You are still in the very early days and having a stoma has a huge learning curve. I'm still learning new things after 3 years, but it is so much easier. I'm not as scared as I used to be.

I promise, it does get better. Keep coming here and venting.

I also wanted to comment on something you had wondered about before about stickiness left behind. I use an adhesive remover wipe to remove any leftover stickiness when I change the wafer. I use uni solve wipes. And they work great.

Hang in there. Tracy

Well, nice to know that people here remember me even on threads where I haven't posted yet .

I go to an in person support group, and it makes a huge difference. There is just something about being in a room with a random assortment of people and seeing that they all have ostomies too .... it's one thing to think you yourself are a freak, but completely different to think that the nice man you just met is one too.... and with the visuals..... just really wouldn't know anyone else had an ostomy if I saw them on the street....

It's also a very different group in person because some of the people there are not that comfortable with the internet and are not on any forums.... the folks who aren't comfortable tend to be older or for reasons of income/language/literacy don't have good access. UC and Crohn's are diseases that both younger and more affluent people are more likely to get (general trends, not specific cases, of course some people here are older and/or less affluent) .... but the same people who are more likely to use internet forums are also more likely to have IBD.....

I'd say that about half the people I've met at the in person group had surgery for cancer (colorectal and bladder, and occasionally ovarian). Some of the folks had surgery for diverticulitis, as well as for botched colonoscopies and other medical errors. There have been a few with colonic inertia. There are lots with Crohns, more than UC, as a lot of the UC folks have reversals and leave....

In my case, I still have indeterminate colitis..... more likely to be Crohn's (or as my gi says -- probably UC is really ten different diseases and Crohn's is twenty.... and if I have UC, it's a "Crohn's like" variation). Proctocolectomy w/permanent ileo was the recommended surgery for me, and often is with Crohn's colitis (which I think is about 15-20% of Crohn's cases).

NCOT, sounds like you've been feeling alone ....

Definitely get more info about the stoma revision. I have also heard that in some cases it is a fairly local procedure.... could make a huge difference if it makes your stoma work better. Sorry about the fistula, that sounds hard.

Larasmom -- congrats on the new position!

NCOT, well yes, when you're 90 I'm sure old folks will be posting on internet forums (and avoiding something else way more newfangled) .... probably today's 90 year olds had grandparents who avoided the telephone .

Yeah I can attest that Unisolve works way better than Allkare. My bro uses Unisolve for his skin (he has an insulin pump) so I've borrowed his wipes a couple times in the past. I think they are harsher on the skin though, that's the tradeoff. My WOCNs use some kind of adhesive remover that is a spray, it seems to work really well. Sorry I didn't catch the brand name, maybe someone else can fill in...

If it's any consolation... my BF has Crohn's and a colon resection, he was given a 50/50 chance of waking up with a colostomy but managed a reconnection at the time. So yes, Crohn's patients definitely still get stomas quite often.

I think you don't see a lot of non-UC members here because the UC board is the most active one on HW. People with colon cancer and Crohn's who end up with ostomies probably stick to the board where they were posting originally about their CA or CD, neither of which are all that popular on HW. For instance if you read UOAA's boards on ostomy.org the vast majority there are CD, cancer, and motility disorders.

edited to add:

Larasmom said...
I was thinking when I read answers4me2 reply about not knowing anyone in real life with an ostomy. That's true, I don't either but really, unless someone wore a big flashing sign, how would you know if someone has an ostomy? I often think about that in crowds. "Do any of these people have an ostomy?" Or "Can anyone tell that I have an ostomy?" The man that held the elevator door for me today didn't know I had one, the waitress in the restaurant tonight didn't know, 90% of the people that I deal with on a daily basis don't know that I have an ostomy........that must mean through out my day sometime, somewhere, someone is bound to have one too.....I just didn't know it.

I think about this all the time! If I'm worried that my bag is noticeable under my clothes, I think about the fact that I have never seen anyone else's ostomy bag. I know exactly what it would look like bulging underneath clothing, and I'm always looking (because I want to see someone else with an ostomy for once!), but I've never once noticed. Even at the colorectal surgeon's office or the WOCN clinic. So if someone like me who knows exactly where to look has never ever noticed, I highly doubt that anyone out there who doesn't have an ostomy is going to notice the slight bulge of a bag.

NCOT - It's a small world! I'm in Bucks as well. Not far from Aylesbury.

No so you can keep the curtains open! I know pitstone and visited there often. It's Buckingham for me and I go to the JR. Where do you go - I'm thinking SMH or L&D?

John Radcliffe at Oxford. I started off under SMH but was referred to the JR research team as I was beyond their expertise and have been going there ever since.
I used to work in Ayles so know all the surrounding towns but not Berkhampstead so well.
Anyway at least you know that when i finally get my op done there will be two of us in Bucks. There are more who probably just don't post on here.