Diagnosed w/ Crohn’s Disease March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)
Diagnosed w/ Fibromyalgia May 2007 also on Soma
Also have Arthritis, and feel like I am falling apart sometimes...
I agree to with the surgery; being married to a man who has had 3 surgeries and has done really well between them. He has never had to take any of the new meds yet and his last surgery was 15 years ago.
I know each person's disease takes a different course and in the end you have to discuss you choices with your physician and make you choice but know we are here and wishing your the best.
Lila, hang in there kiddo....sounds like we are in the same boat. Although I have never had a resection (and really hesitant on starting Remicade Infusion due to side effects), my Crohns is not responding to Pentassa and Entocort and my GI says it is my next step short of surgery.
Does anyone in the group (which is absolutely marvelous and informative) have any advice (one way or the other) as to Remicade or surgery? It appears from all the CAT scans, x-rays, upper GI's that my main issue is scar tissue and surrounding inflammation in about a 20 CM area of small intestine just above the illeum?
Best wishes, and , looking for any advise,
Post Edited (Celey) : 5/28/2008 12:25:43 PM (GMT-6)
Post Edited (Celey) : 5/28/2008 12:26:14 PM (GMT-6)
Thanks a mil sr5599,
Yes i must say it's so frustrating to know that scar tissue is causing all my problems and not the disease itself (although i know it's a result of the disease), but you know what i mean. My crohns is located in the terminal ileum so luckily i have had no rectal issues or fistulas etc. But i am aware things could change at any minute with this awful disease and it can spread elsewhere as and when it pleases.
I'm kind of assuming that if Entocort is specifically targeting the small intestine and hasn't worked for me - then nothing else will work. I guess i'll just have to wait until August and see what my GI thinks of the situation. And in the meantime i better go shopping for some baggy tops to hide the bump (the bloat bump that is)!!!
I was also diagnosed in 99' but unfortunately i needed surgery straight away as i'd had crohns for about 7 yrs before that and was suffering pretty bad. So you're quite lucky to have gotten this far without any surgeries!! Sorry to hear about the bloating and discomfort - i can sympathize completely.
Well let me see - the bloating is worse at night for me too. So i make sure i don't eat after 7 or 8 in the evening - unless i really have to and in those instances i just eat toast. (It's difficult to do if you're used to eating at night but you get used to it and feel much better for it) Then i try to drink as much fluids as i can before going to sleep and this usually guarantees a BM in the morning-after which the bloating usually dies down until lunch time.
Also i have found that cutting out gluten has helped. (The tests for coeliac have been negative but i know that it still makes a difference for me to cut it out) I haven't cut it out completely, but because i eat alot of bread - i try to stick to gluten free bread and pasta. I also believe that eating small amounts regularly makes a huge difference as my tummy cannot handle big meals at all. If i eat a big meal i might as well go to bed for the rest of the day because i can't move after it with the discomfort.
And another thing i try to do is stick to fairly bland food UNFORTUNATELY! Mostly chicken/Fish, i can eat salads without any problems, actually my diet is so boring i can't remember right now what else i eat Occasionally i crave red meat so i allow myself a small amount. I eat as little sugary food as possible (which DEFINITELY helps), i stay away from processed foods and i don't drink soda at all. I cheat the odd time as i'm only human and i have an occasional takeaway or fried food or bread, but if i'm sensible for the most part it helps me alot.
Hope i haven't bored you with my tips, but if they are of any help to you then i'm happy! Best of luck......Lila