it's been a while since I posted, but I've checked in every so often.
Here's my story in a nutshell: i've had CD for about 46 years (diagnosed at 19, but sure I had it since early childhood) Have had 3 re-sections, 18 years apart, the last one being in 2008, at which time I also had my gallbladder removed. Colonoscopy in 2009 showed active CD in same area (ileum). Had been on Remicade, but had to stop due to difficulty in getting a vein. Went on Humira, which I was on for about 2 years but stopped this past June since medicare didn't cover. Since I went off Humira haven't noticed any difference in my symptoms so I don't think it made any difference. Now I'm just on Entocort which I've been taking for about 4 months.
The good thing is that I don't have much pain; I do get bloated and gassy at times, but my main problem is the diahrrea. I don't seem to get any relief: have tried questran and colestid, both the packets and pills, no relief. I have been taking lomotil but don't find it really makes a difference. I do admit that I haven't really been watching my diet; after so many years of bland, white foods, strained baby food, and having to pass on the fruits and veges and other high roughage foods, I am enjoying eating again. My feeling is (as ridiculous as this may seem to others) as long as I don't have any strictures at this time (as far as I know) I want to enjoy food for a while. My main fear in the past was dealing with the blockages I experienced due to severe strictures. I was always extra careful with my diet.
I have experimented with my diet to see if avoiding anything made my diahrrea better, but honestly I can't find any rhyme or reason to it. I can be very careful and have a horrible day, or I can go all out, and have a better day. My diet is healthier than it's ever been, and I have managed to gain some weight, which is very unusual for me since I'm been underweight my entire life (except at birth when I weighed 9 lbs 1 oz!)
I have some times when it seems that it's getting better and I will have some normal bms. but my joy is very shortlived and the urgency and accidents come right back. My GI has recommended that I see a specialist just to get another opinion.
I feel fortunate to be at a point of my CD that my main concern is the D. I know that many of you suffer with many more issues, and I feel a little guilty complaining about this. But after so many years of this horrible disease I'm so tired of it all. Not trying to throw a pity party. Just wish I could feel totally normal for a change. The bathroom issues are really getting me down.
Anyone have any other remedies they found helpful? Sending e1 healing thoughts and hugs
Potty Pooper (still living up to my name!)