boo-hoo and waaah!

mini history:

chris had UC from birth, tried some meds (5-asa and imuran, and of course the devil prednisone)

kept getting worse, had surgery this past november at age 5 (total colectomy and pull-thru)

battled with c-diff for months after surgery

he had a scope this past monday because he is again having some D and occult cards showed positive for blood, labs showed elevated infflamation indicators.

the scope showed mild infflamation at the anus and tiny white ulcers/lesions/areas as far as they looked, which was only about 20cm. stool tested negative for c-diff which means nothing to me because we've had several false negatives.

prescribed Rowasa enemas nightly for 2 weeks. allergic to sulfa drugs. Rowasa has sulfasalazine in it. tried it anyway with bennadryl on hand. lots of D all night and mucous this morning. changed 3 very heavy diapers and soaked 3 bed pads. safe to assume he's allergic to the Rowasa? Guess we'll have to go back on the pentasa...

the little ulcers found by the scope this go round don't look like the UC ulcers which were all yellowey and slimy. these look more like the big c-diff ones from the scope last december, except smaller. like he's getting enough probiotics to keep the c-diff at a minimum. still waiting on the biopsy results so the GI wont make any bets on a cause yet, but has suggested we avoid antibiotics like the plague. if it is c-diff we will be doing fecal transplant at home regardless of any other suggestions.

here comes the pity party:

it's just not fair. little children shouldn't have to deal with all this. scopes, bleeding, can't go to school because he's crapping all the time, can't have sleep overs because he has to wear diapers, pills, enemas and more pills... i had to give him a fleet saline enema as prep the night before the scope and it was absolutely the worst pain he's ever encountered. he's got little raw spots around his anus and we salted them. he had to expell it in a warm bath squating, holding his cheeks apart and screaming. it was horrible. i usually do ok with stress, push it aside and keep on trucking, but all these road blocks on the way to recovery are really getting old. my poor husband is on pins and needles.

i know ya'll will have something insightful to say, thanks.

My heart goes out to Chris and you. No it isn't fair, especially since you had surgery to get rid of it.

I have heard of non-sulfured Rowasa, have you tried that?

Good luck with the FT.

imagardner2- i have not heard of non-sulfered rowasa, will bring it up when i call to report to the nurse today, thanks.

Aww, heck, just so you know -- I can feel the pain and wish that neither of you had to go through this. It's tough enough with adults to deal with this but I can't imagine a little one. (((Hugs))) 

thanks ya'll, he's not in any pain regularly like he was with the UC. it was just that saline enema was really hard on him. he's still better off than he was with the full blown UC and i'm sure we'll get past these hurdles... it's just not right that a child should have to go through all this.

That's really awful to hear. You'd think with surgery, his troubles would have gone away.

I hope he feels better soon.

IT JUST ISN'T FAIR! You're right!

I admire your attitude and your ability to do the very best for your son. Eventually you will find a reprieve from all this. I agree with pp that it might be a good idea to look into perm. ileo.
good luck.

HUGS  your way and to Chris.

Hugs to both of you!

OK the verdict is in... we still don't know anything. the biopsy pathology did not show any granules (?) which is indicative of Crohn's. none of his biopsies ever have, but we can't rule it out yet. he does have other IBD indicators, but these are also indicators of severe infection... so maybe he's had c-diff since surgery and it's just taking longer to build back up to toxic levels because of all the probiotics this time. The GI is having the Pathology Dr examine every bit of the biopsied tissue (they usually just do slides from each end and the middle) to diligently check for granules. we're also doing stool studies today, tomorrow and the next day.

Meanwhile, back at the ranch, he started back on the pentasa, continuing with culturelle, Ultimate Flora CC and Florastor daily. He also is having mucous and D. the D is consistant with the C-diff just not as severe as he's experienced in the past. He also didn't have much of an appetite this afternoon and went to bed early. he just couldn't stay awake.

Aww, poor little guy. I hope this all stops soon for him so he can enjoy childhood.

Poor little guy!
Hugs to you both.