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Jacquie's Journey

Hi all,
I am new to the forum. My name is Jacquie, I was diagnosed with Crohn's disease when I was 16 ( I am 27 now). I went through a bunch of medications initially- prednisone, pentasa, and a bunch of other pills i dont remember- up to 24 pills a day. Anyways, was in the hospital on and off for many years- finally the GI decided to try remicade but my inflammation was beyond the chance of responding to that at the time. I had surgery when I was 21 and had the part of my intestine removed where small meets large intestine (2 ft). I had a long hopsital stay because I had to reach a stable place to go through surgery and after surgery I had an ovarian cyst that burst. (No bag with surgery by the way :) ) But after 45 days, relief was in sight and I was sent home to recover. Since then I have been blessed with about 5 years of remission without any medications. I could eat anything I wanted except corn.

June 2012, I started to flare-up again when I became overwhelmed with my job. I have also just moved to MO from NY - to begin my career, so the humidity was taking a toll on me as well. I experienced all sorts of new symptoms I had never had before- extreme joint pain in both legs and red patch rash things. The GI ended up diagnosing as erymthema nodules (or something to that nature). My legs also swelled up to the point it hurt to walk. Rewind a few months back to march thru may- i was running 3 miles at least 3 times a week and walking frequently with my dogs. Fast forward again to june and now I was having frequent urges and fatigue. I couldnt go for a walk without having an accident. :/ That was a major blow to me. Everything kept getting progressively worse and I had a colonoscopy done. My new GI said that my surgery site was great but everything else was very inflammed. My heart wasnt ready to hear that. So he started me on Entocort and humira and imuran. I was off to a rough start with Humira. But now its Feb and I am only taking Humira (but I am suppose to be taking Imuran as well, but I have my reserves about that). I reduced my hrs at work, but I still feel extremely fatigued compared to where I was before all of this started. I can now take walks without accidents. But i havent even thought about attempting to run.

My appetite sucks. I have lost approximately 15 lbs since all of this happened. I am at approx 130 lbs for someone being 5 ft 8 inches tall. I used to love eating breakfast ( and eating in general), but cant really fatham the thought of food in the morning now. My breakfast now consists of ensure high protein and possibly a granola bar of some sort. Lunch is small if anything. And I extremely tired to come home and cook. But dinner is by far my biggest meal. I used to eat so much before and now I feel like a child eats more than me sometimes.

I am also battling fistulas, no surgery or sentons. My GI thinks humira will help them, but I am losing hope in that- its been about 4 months and little change. I also sometimes have accidents on occasion and dont know if that leakage through a fistula or something worse.

I also go through bouts of depression.

If anyone can offer some sort of advice on any of the above things I have mentioned, I would appreicate it so much!

I feel my biggest concerns in brief are: fatigue, loss of appetite, and battling the fistula. Thanks all!
 

sawdust

Moderator
Location
Pennsylvania
Hello Jacquie and welcome to the forum. I'm sorry you are having a tough time, but I think you'll find this to be a great place for support. There are wonderful people here who can truly understand. I hope you find it as wonderful as I have.

I wanted to point out a few of our sub-forum communities here. If you haven't found them already, I think you'll find the discussions there especially relevant to your experience.

Support Forum
Humira/Adalimumab
Fistulas, Fissures and Abscesses

I love to eat as well, especially breakfast, like you mentioned. A good way to meet some our friendly members is to join us in Chat. We discuss all kinds of things, but we usually keep things light, and it seems to happen without fail that we end up talking about yummy food... :hug:
 
Thank you sawdust! I have briefly browsed a few of the sub-forums, but will take a closer look. Are there any sub-forum on people having issues with their teeth during a flare-up? I feel like that's a constant symptom I have during a flare. Thanks for the advice! :)
 
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