Still nobody with Crohn's...

Literally every new person who comes along and posts on this board has UC, not Crohn's.

I'm starting to feel like a unique snowflake in being a person with Crohn's who has a stoma. But it makes me feel weirdly uncomfortable.

But honestly, it does seem like stomas for Crohn's are dying out. I never come across anyone with a stoma on the Crohn's board either except once in a blue moon, and when I do they've usually had it for like 20 years.

So yeah, nobody will admit it to me, they just brush it off, but you're telling me that people with Crohn's and ileostomies don't post? Of course they would if they were out there, just like all the UCers do.

No offense guys, but I wanna speak to ileostomates who have either had them for 40 years or are facing the prospect of having them for 40 years, 'cos they're the only ones who might be able to understand my position and how I am feeling over this year. Again, no offense, but this has become pretty much the Temporary Stoma/J-Pouch board, neither of which are relevant to my situation.

I wanna talk about how the prospect of having a stoma for the next 40 years makes me feel. Also, what might happen to my stoma in that 40 years, what to look out for, signs of Crohn's returning, etc. Feel like there is a case for this board being renamed as the J-Pouch/Temporary Stoma board, in fact. One good reason for doing that: I'll definitely stay away... <_<.

Post Edited (NiceCupOfTea) : 9/7/2013 1:41:36 PM (GMT-6)

People who have had ileostomies for 40 years don't seem to feel a need to post online about it. They pretty much have it down pat. We do sometimes have people post who have had ostomies for a long time, but it seems like they usually pop online with a specific question (like "I've used Coloplast for 30 years and now it isn't working anymore") or, being older, tend to have some trouble understanding how to use the board. UOAA's boards tend to have more permanent ileostomates. Shaz is one of the few longterm ostomates I see posting here or anywhere.

Have you been to an in person ostomy support group? Again, I think it will be mostly new ostomates, but most likely a different slice of population than the kind of people who post online.

I have a permanant ostomy. I had UC, a failed jpouch, and decided on a permanant ileostomy rather than redo a whole jpouch. I have had this fourth and final ileostomy for over 1.5years and will have it at least 40more years.

I have found there are quite a few people on here with permanant ileostomies. blueglass is one I can think of that posts frequently. In fact, I just read another post from a person with crohns who has had the ileo for 14years.

Guess I'm not really seeing what your issues or problems are.

Post Edited (ddd45) : 9/7/2013 2:53:49 PM (GMT-6)

Funny, NCOT when I was in my brief, very brief surgeons appt on Wednesday, I thought of you while I sunk into a great sadness of reality.

I have Crohn's. I now have a loop ileo because of emergency surgery a year ago where I just about died. My surgeon, in the 3 mins I actually got to see him, told me my best option was having my colon taken out and a permanent ileo created....oh and he is WAYYYYYY to busy to see me so he is going to refer me to a IBD surgeon that isn't even arriving until next fall. My surgery now isn't going to be for at least two years considering "I am not a priority."

I cried for three days, called in sick to work and finally today have gotten out of bed. I knew deep down that was going to be the outcome but I was so disappointed to be treated so poorly and blown off.

I am so tired of people saying how lucky I am to be alive, to be patient, that it doesn't matter that I have a bag a crap attached to me, all that matters is that I am here for my daughter and husband.

This past week has been hell and knowing now that I am "on hold" for another two years is devastating to me. I am not sure how to cope with this news.

I know how you feel, it sucks crap. So I will have my ileo and bag for the next 40 odd years too and I am trying to process that in my head.

Oh, I am in the bottom pit of sadness. Thankfully, my GI called to see how my surgeon appt was and when I burst into tears he knew something wasn't right. I am going to see him next week. I don't know if he can get me into someone else sooner or not. I mean I don't want just anyone, I want someone who knows what they are doing. I am not opposed to going somewhere else in Ontario but I doubt that will speed up the wait time.

So for now, I am throwing a pity party, spending time alone, crying and being pissed off. I figure by Thursday when I see my GI either I will have snapped out of it or he will be sending me to the psych ward.

My husband has been really good at giving me my space and checking in on me but allowing me to grieve. That's what I feel like I am doing, grieving,

Thanks NCOT.

I have a permanent ileo and have Crohn's. I am also member of the ileostomy association ( Berkshire, Buckinghamshire, Oxfordshire section) and there I met a lot of members with crohn's and Ostomies. As stated before, we just get on with it...what does it matter if it's crohn or not...

Mines permanent, unfortunately I am not a candidate for a j pouch (rare circumstances). I have grieved and celebrated. Life goes on ..yay

I also have crohn's and an illeostomy. I had my colon removed in may and just last week my rectum and anus were removed. I am not having any issues with my stoma but I really hate having another surgery right now. My surgeon felt I would heal better on a wound vac since perianal wounds can be difficult. The worse is the unknown future, crohns relapse, complications from surgery. I am trying to stay positive but it is difficult.
I can't believe anyone would have to wait two years for surgery. The anticipation is almost worse than the surgery.

Hey, thanks guys :p

I am actually feeling a bit less alone now! To be fair, I think this feeling of being apart from everyone else is part of a wider problem which long predates having a stoma, and which I am trying to work on. I'm very sensitive to the feeling of being 'different' :-/

@Larasmom - Nothing wrong with a good pity party, especially with plenty of whine... <_<. But seriously, good luck with the GI appointment.

@blueglass - Yeah, 15-20% sounds about right for Crohn's colitis. Technically, I had ileocolonic Crohn's, that is, Crohn's of the terminal ileum and colon. Most folks with ileocolonic disease only have limited colon involvement, usually of the caecum, but I had pancolitis.

I never really had therapy before I fell ill, as I couldn't afford it :-/ I did have a few counselling sessions in the past, but counsellors seem to be trained to say as little as possible and I couldn't get on with that. Psychologists seem to be a lot better on that front, but getting to see a psychologist on the NHS is like getting blood out of a stone. I am actually seeing one at the moment for a course of CBT therapy, but even when you get onto the course, seeing the same person every week is not guaranteed. So far I have seen the same man every time: think I looked so miserable when he told me I might end up with another member of the psychology team maybe that made him relent, I dunno. Just had bad previous experiences of being shunted from doctor to doctor; it never leads to good treatment.

Er, long story short, I might see if I can scrape up the monies for a private psychologist once this course is over, Wouldn't want years and years of therapy (in all honesty), but on the other hand 10-12 sessions feels like it's going to be a bit rushed and not really long enough.

Anyway, yeah, I know the feelings do pass if you just ride them out. Also, I will post some questions, just not tonight, 'cos I should be in bed right and will go as soon as I've posted this <_<.

@Lovetoski - It matters to me if it's Crohn's 'cos Crohn's is what I have and I wouldn't join an Ostomy group where nobody there had Crohn's in all honesty. Not that I would ignore/discount the people without Crohn's, but I would have some Crohn's-specific concerns they wouldn't have a clue about.

By the way, I'm a member of the same local IA group as you. Never been to a meeting, but I think it's time to give it a go. Don't worry, I don't whinge this much in real life... <_<.

@Ouchie2- Ouch.

@Nenagirl - Cheers muchly for the kind words :p

@Smd729 - That's bad. How come you had anus/rectum removed, especially so soon after the colectomy? I had my colectomy done in February and still have my rectum. It wasn't disease-free at the time of surgery, but it doesn't give me much trouble. Would rather keep it than go through the trauma of another major surgery, tbh.

@colitiscanuck - Welcome to the board, even though you aren't quite a brand new poster. I wasn't a candidate for the j-pouch because of terminal ileum disease. If it's any consolation, the stats for Crohn's returning after an ileostomy is far lower if you've never had small bowel involvement. Not zero, but low. I can still understand the fear of it, though.

Okay, going to bed has become a matter of urgency... :-/ Goodnight guys :p

Hi NCOT,

Funnily enough, I posted here in about 2007 asking something very similar, so if you can do a back search on this forum, you may just be able to find some extra posts from some other long-term Crohn's people.

I seem to remember that some of them were very encouraging, especially from a lady called (I think) Cleo - try searching.

and hello

Ivy.

ivy, wow. Honestly never expected you to post on HW again, but I'm glad to see you! How have you been? For the record, I closed my Facebook account a few weeks ago (lost my temper at its latest wheeze of spamming my email inbox with inane spam, despite every email setting going being turned off). I will rejoin under a new name/email address - expect a friend request soon :p Meanwhile, my email address hasn't changed, so feel free to drop me an email any time.

I will proceed to do a backsearch of the Ostomy forum. Thanks for the tip. Oh, and hello :p

@CrohnieCJ - I have seen you post, but yeah, you don't seem to be one of the regular posters. How are things for you two years on?

@Smd - Oh, right :-/ For some reason, I never got fistulas/abscesses. Never really had perianal involvement in 13 years of Crohn's disease, apart from excruciating anal fissures in the year before surgery (self-diagnosed, 'cos I never asked a doctor to check there, but I'm pretty sure it was fissures).

Originally I thought rectal cancer was miles rarer than colon cancer. Not sure where I got that idea from, because it clearly isn't:

The age-standardised incidence rate per 100,000 population in the UK in 2008 was 47.2 (29.4 colon, 17.8 rectum).

Yeah, rarer, but not miles rarer. I think I was maybe getting rectal cancer muddled up with anal cancer, which apparently is the rare one.

Anyway, I'm sorry you're still having problems with fistulas. What issues have you had with your terminal ileum? (I have a slightly morbid dread of the Crohn's coming back there and seeing ulcers on the stoma. I know all about having too much time to think... :-/)

It is so good to talk about this with people who truly understand! My family and friends are great but I am so tired of hearing "It takes time!" We all know that. After my total colectomy, things were great. I went back to work, went to the gym, went on vacation and had a normal life. The docs told me having the rectum and anus out were a necessity because of all of the disease. They felt that diseased organs will just weigh you down in the long run. Even though I felt great, I was still developing draining mucus from the fistulas. Sometimes diversion is enough to heal the fistulas but not so in my case. Therefore, we decided to take the rectum and anus out on August 30th and just get this whole thing done! I just wish I could sit more comfortably. I have this wound vac because multiple surgeons I consulted felt it would speed up healing and lessen chance for infection. Also, I am still on imuran since my gi feels the best way prevent recurrence of disease or a stricture in the stoma is to restart Meds within 3 months of surgery. I have a history of terminal ileitis but my main problems in the last few years have been in the lower gi tract hence the surgery.

Has anyone here had a proctocolectomy and how long before you we're able to sit comfortably

Tom1,

I am still taking Humira in the hopes that I was going to be able to have a reconnect....now that that's not happening, I am going to ask my GI on Thursday if I can stop taking it. I don't see the point frankly, if my crohn's is only in my colon and no where else, why keep taking the drugs.....it's not hooked up anymore. The surgeon said that the reoccurance of crohn's elsewhere with an ileo is next to nil but since he blew me off so quickly, I am going to speak to my GI about that.

Other than your two glasses of wine a night do you notice a difference not taking it?