Penwestern

[PENWESTERN]

Hello,

I joined today because I have questions on a severe Crohns Attack that is nothing like my last one in 1999.

It was terrible stomach pain then. I was hospitalized, treated and for about four years followed up and took meds. The Remicade transfusions really hurt my liver so the Dr. stopped. I felt better and stopped going to the Dr.

Between 2003 and Nov 2008 I never missed a day of work and although I have the Big "D" most days and run to the bathroom a couple of times a month I have been pain free.

In Nov. I suffered a severe attack and after every scope and GI test known to man in less than a week and ahalf I am told I have a severe case of Crohns in the ileum but am not a candidate for surgery now. That was discussed but we are trying Remicade again in Jan.

My last flare did not hurt my intestines. I felt nothing. It came in my mouth, sinuses and face. I got ulcers in my mouth so I could actually see what crohns looks like and it looks inflamed and ulcerated.

Anyway, I am worried my roof of my mouth will never be the same and the red marks on my face which are fading will be permanent. I also worry about Prednisone and weight gain as I am 54 years old. I am normal average weight but it is a struggle because I eat everything and never stomach ache since 1999.

I had a stern talk to by the GI because I let this severe case go five years but I did not feel I needed the drugs or any more advice until I flared because they really were not helping me. He says lifetime drugs this time and a colonoscopy each and every year.

 

[PENWESTERN]

Hi Pen,

Actually I use the name PEN at open diary where I am a lifetime member. I love that name because it is short and sweet.

I am 54 years old. I am a female. I am 5'4" and constantly weigh about 140 lbs whether I am healthy, flaring or on Prednisone. I fluctuate little. Right now I have chipmunk face and stomach is larger but legs and arms are smaller due to my oral crohns problem I haven't been able to eat much. OUCH!! A Dorito looks like a dagger of death. Egg salad even hurt at first. This is healing and I can handle most foods today.

I am going to restart Remicade on 1/12/09 and at that time I will taper to 10 mg Prednisone.

My Dr. says my case is severe and scolded me for five years of non treatment. I had no pain for five years so I just quit. Of course I did have "D" but oh well.

I work at a Jr. College and help students on computers which means I am constantly in a germy environment. So being on Prednisone, Imuran and Remicade scares me but I have no choice at all.

I have never had surgery but my ileum has been inflamed and a stricture is there. Every doctor and even the radiologist tell me to keep trying the drugs.

Surgery scares me because one of my GI Drs told me that my inflammation will just return and he thought I would never need surgery with my condition which is severe inflammation.

 

[jed]

welcome Pen!

 

[Guest]

hi Penwestern & welcome to the forum!

sorry you're going through all this inflammation right now. firstly i'd say don't take on board too much what doctors have said in the past to you - your body and symptoms may have changed, so have procedures and medications over the years. it may well be that surgery could give you a good quality of life for a long long time, so i'd advise you to go with the current test results and the advice of your current GI specialist.

i've never had Crohns erupting anywhere apart from in my intestines. it must be awful to have it in your mouth and on your face - i would guess that the hydrocortisone in pred would heal these patches completely. i hope so.

good to have you here, Pen number two

 

[GoJohnnyGo]

Hey Penwestern...

Wow, sounds like you're going through a nasty ordeal. Not everyone here might go through the exact same trials and tribulations as yourself, but you can darn well bet we're all open ears here.

I can relate to the whole "not seeing a doctor often enough" thing. Better part of a decade despite ongoing, but manageable symptoms. Never missed work either. I think I'm paying for that now, but I'm not going to dwell on the past. The important thing now is to commit to regular care going forward.

I have some inflammation in the mouth, as well as my esophagus -- in addition to somewhere deeper in the gut as well as the poop chute. I had a resection of the ileum in 1990.

My current flare started this past July. Having lapsed in maintaining regular GI visits, I find myself at the bottom of the queue. I probably won't be able to see a Gastroenterologist until late spring, early summer 2009. In the meantime, I'm on Asacol and Prevacid as prescribed by my GP.