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Trouble after such a long time

Hi all. New to this site but not to Crohns or an ileostomy. I was diagnosed with Crohns in November of 1987 when I was 8 years old. Went through tons, Central lines, NG tubes, TPN, Prednisone, liquid diets, coloscopies, endoscopies, barrium, enemas, hospital stays. Finally when I turned 15 they tried what they wanted to call a temporary ileostomy. My mother and I came to find out this was all a trick because they sewed up my rectum and removed my colon. Anyway, it has been over 16 years now that I have had my ileostomy. In the last few years things with it have been getting worse. I have a lot of polyps growing on the stoma and they bleed constantly. Also the stoma is producing so much mucus that I can't get my bag to stay on more than a couple of hours. I'm trying to get in to see the GI doctor my mother sees. She was recently diagnosed with Crohns. She has a younger brother who also has Crohns. So it runs in my family. My primary care doctor is giving me a hard time because the doctor isn't affiliated with the same hospital as her but that isn't an issue with my insurance. I am very frustrated. I can't sleep, can't go far from my house, and I can't be very active because I'm at the mercy of this stupid bag and this mucus that makes it leak. I believe I am having a flare up because my stomach has been hurting and the mucus is getting worse. The GI doctor that I saw that was affiliated with my primary care doctor tried to tell me I was fine. I saw her twice with the same result. This was last year. Since then it has just gotten worse. I'm at my wits end. And I am wondering if anyone else has had issues with mucus. Two weeks ago my ex husband who I still live with just had a temporary ileostomy done for diverticulitis. I think the stress has started a flare up because with in the last two weeks the mucus has been going over time and like I said earlier I haven't been able to keep my bag on for more than a couple of hours. HELP!!!!!!!!!!!
 

Nyx

Moderator
Sorry I can't help you...I have a stoma but have only had it for five months and have had no problems (thank goodness).

I hope you find some answers soon and post them..I want to know how it turns out for you, in case it happens to me too!!

Good luck and welcome to the forum :)
 
Hi Kilah,
Sorry you're having so much trouble. You did not mention seeing a stoma nurse, so that would be my recommendation. They can help fix your appliance problems.
You can find one here:
http://www.wocncenter.com/public/member_directory.cfm

Next, it sounds like maybe Crohns is affecting your sm bowel and stoma. Maybe find a new GI who is more understanding.

Good luck and feel better.
 

Astra

Moderator
Hi Kilah
and welcome

Sorry can't help you with this one, but I agree with Joe, find a new gastro who is more knowlegeable in IBD, good luck and don't despair, lots of support here for you, vent wheneva you want!
lotsa luv
Joan xx
 
Trouble after so many years...a response.

Thanks everyone for your posts and welcomes. Just today I finally got my primary care doctor to give me a referral to the GI that sees my mother. But they don't have anything until June 29th. I tried to tell them what was going on and that I couldn't wait until then. Can't see the Ostomy nurse without a referral and an appointment. I hate all the red tape. It's not an appliance issue because I have tried many different types. Plus paste, powder, eakon seals and tegaderm plus several types of tapes and skin barriers. I will keep you all posted. Thanks again.
 

ameslouise

Moderator
Hi Kilah and welcome!

Good that you are going to a new doc. If things get too bad in the meantime, or if you start seeing blood in addition to the mucus, get yourself to the ER. That will speed things up for sure. In the meantime, hang in there!

Are you on any meds now?

And how could your surgeons just remove your colon and close up your rectum without consulting with your first? Did they see something in there that would lead them to give you a permanent ileostomy instead of a temporary one? Was your colon was too far gone to think that you would eventually be able to get the procedure reversed? It seems very unprofessional that they would trick someone into a permanent procedure - not unless they wanted a heap of trouble and potential med malpractice.

Hope you can get some relief and start to feel better soon after seeing the new doc.

-Amy
 
Trouble after so many years...a response.

I was only 15 at the time and my mother never bothered to get second opinions. She would just sign away for stuff even if I was against it. She didn't bother to do research and know any better. They said that the ileostomy would only be for a year but they sewed up my rectum then. But when that year was over they said my colon wasn't better yet. So they said give it one more year. But during that second year they said that my colon couldn't just sit there because it would cause cancer. I guess they neglected to mention and my mother neglected to ask if it would be reversible with no rectum and no colon. So when the second year was up we went back to them and they were like, "oh no...you can't have this reversed now because you don't have a colon and you have no rectum." I was pissed to say the least. It has been 16 years now. I'm just wondering if maybe they need to remove this section of small intestine and re do the stoma. I'm not currently on any medications for the Crohns. But I am on tons of supplements because my body doesn't absorb anything.
 
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