Two years after surgery....

[cronnie]

...And still not feeling well!

At my recent doctors appointment/colonoscopy, I was told that I am "Crohn's free." Yay....

Except.

Still not feeling "Crohn's free." Still random pains set off by who-knows-what, still only able to process a limited diet, still (and the biggest annoyance) chained to the restroom.

My surgery removed all the Crohn's that existed at the time, fixed a fistula connecting the bladder and the bowel, and removed a good deal of my colon. My doctor thinks now I might be feeling the affects of a partial colon.

I guess I'm glad to be (currently) Crohn's free, but it is certainly a very confusing state of mind. If I am constantly running to the restroom because of a partial colon, well....that can really never change. It's an embarrassing and frustrating thing to deal with, and it definitely makes travel, work, or ummm going for a walk difficult.

And another frustrating thing about this feeling is that I don't feel I was prepared for this before the surgery. I don't know if everyone/someone/or no one has this issue of feeling bad when they should be feeling good. I don't recall EVER having a doctor/surgeon discuss the fact that I might be tied to the restroom even more (way more) than before the surgery. So I don't know if this is a freak incident or if I was uninformed. But it makes me feel upset. I'm young and this isn't going to work for the rest of my life.

Anyone else going through something similar? Any tips? I currently take Colestid for the restroom issue and basically just don't eat if I plan to be in the car for an extended time period. I'm thinking there must be something better than this...

Thanks!


PS, I have had Crohn's for about 12 years, have been and am currently on a large selection of pills, including Remicade. The surgery was definitely a good thing in reducing pain, but, I feel, has created new issues. But I don't want to scare anyone considering surgery! (I know I've started spending a lot of time reading all the topics on this forum :] ) My life has definitely changed from the surgery, and a lot of it has been for the better.

 

[CDDad]

Sure, I did terrible after my first surgery. That was a Hemicolectomy where my right colon was removed - along with the ileum. I assume you had something similar.

The right colon is where water is absorbed from the stool. So the loss of that, plus the loss of the ileocecal valve means waste flowing unrestricted from the small bowel into the large.

Many people do well on Colestid or similar bile acid binding drugs (Questran). They did not help me at the time.

What finally "cured" me (at least for now!) is my total Proctocolectomy. Sure I have a bag now, but it's nice to be Crohn's free for the first time in 20 years.

 

[lamor32twigs]

Sorry you are having a hard time still after surgery.
I too had my ileocecal valve removed, thus causing issue with somewhat of a dumping syndrome.
My crohns returned rather quickly so I don't know if it was the surgery or just crohns that cause a lot of my issues.
Even though you may not have active crohns in your intestines you may still feel the effect of crohns as far as fatigue etc.
Hopefully over time things will improve for you.

 

[RN4ME]

Yeah post op cured here too...LOL oh wait im almost ready for my second surgery...My crohns didnt really come back hard core either..it builds slowly i guess. Not to be negative Nelly here but telling you how it goes sometimes. Doctors just wing it..you know what your body is telling you. I have my valve removed and so on...had a close call on the freeway the other day and my wife was ready to beat my ass cause i was in panic mode for a bathroom..LOL I made it though..hurray for small victories. I found a good bake in the sun knocks my random pains down...vitamin D magic i call it..and a small little THC does wonders if you have a stress related crohns issue like me--although this isnt a option for many of us ;;tear.. Either way at least you have a little breather from the super crohns i call it. I suggest going on a treatment for crohns as if you had a mild form ...Humira is decent and low on side effects to me anyway. I did the "im cured deal" and had a rude reality check with my possibly soon need for surgery #2.

 

[AshleyElaine87]

I had surgery almost a year ago, and I do NOT feel any better! I had a colonoscopy not too long ago, and they said I was "Crohn's free"...whatever that means. I am also having the trips to the bathroom that I NEVER had before! I have the constipation Crohn's before the surgery, now...as soon as food enters; it leaves one way or another within minutes! I failed prednisone and remicade. I am now just on imuran. I still have the RLQ pain, and feel about the same as I did before the surgery. Yet, I am glad to say...I have not had another obstruction or hospital visit!