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remission but still feel awful

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Ulcerative Colitis
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Posted 11/3/2011 12:49 PM (GMT 0)
my daughter had  a scope done prior to thinking about surgery because she was so fed up of being ill and having constant diarrhea and to everyones surprise it showed the colon had healed and no inflammation.although pleased it doesnt answer why she is still not well ,she is still painfully thin and exhausted all the time ,can barely get through a school day let alone a week.she still has diarrhea ,sometimes 15 times a day sometimes only 3ish times and feels ill all the time ,havent had biopsy results yet.

so is it the drugs ?,balsalazide and azathioprine and 10mg of pred that are making her feel ill.this time last year her doc was adamant that her colon had to come out and she wanted to try the drugs ,now they are saying she doesnt need surgery but she just wants to feel normal again and have a normal life .

any ideas ?

 

Posted 11/3/2011 12:56 PM (GMT 0)
sunvick,

Welcome to the forum.

I'm sorry your daughter is feeling so lousy, despite having good results on her colonoscopy.

Yes, IMO, it could very well the be drugs she is taking - they are well know to have lots of side effects. And in some, they are not well tolerated.

I could not tolerate the 5asa's very well - they gave me terrible stomach pains and liquid D.

I would recommend you see about switching her meds.

But more importantly, it would be great if you could do some research and get her on LDN - low dose naltrexone. It's been very effective in Crohns and UC, and has almost no side effects. If you are interested, I will post the links for it here for you.

Good luck and I hope she feels better soon.

Posted 11/3/2011 1:51 PM (GMT 0)
It could definitely be the drugs. I would talk to your doctor to see what they think and what they might suggest.

What is her diet like as well?
Is she taking a multivitamin/supplements?
Has she had blood work done to make sure she isn't deficient in anything?

I'm glad she's dodged the surgery bullet and I hope she feels better very soon!
Posted 11/3/2011 3:09 PM (GMT 0)
It could be the azathioprine. I took 6mp (similar to aza.) and didn't feel well and when I quit it turned out it really wasn't helping me. That may not be the case for your daughter but it's possible. I've been on balsalazide for 2 years now and have no reactions to the drug.

Besides the drugs making her feeling bad it could be other things also: IBS which does not show up on a c-scope or possibly microscopic colitis. Did they take biopsies when doing the c-scope? I hope so, that would be how to determine what's down there if visually it looked good.

My first guess would be the drugs however and if she's having much D then the drugs really aren't solving her symptoms are they?

And I'll also suggest diet as something that can really help since it did for me. Keeping a daily food journal is a good beginning.

Best wishes.
Posted 11/3/2011 3:17 PM (GMT 0)
It could be the drugs but it could also be IBS. Exhaustion seems to be a problem for a lot of us. Is she taking any vitamin D or B complex? I haven't tried B but I take D and it hasn't helped with fatigue.
Posted 11/3/2011 4:22 PM (GMT 0)
thank for replies ,yes she is on multi vits .
bloods are ok .her calcium goes low from time to time but she takes supplements for that.

she has had a trial of stopping balsalazide in the past to see if it made any difference..it didnt sadly.

last years scope showed pancolitis and backwash ileitis, she was really in a bad way so its good that its healed but symptom wise she is still suffering.biopsies then confirmed colitis ,they took them again this time but havent had results yet.
could be ibs but she never has a solid bm they are always 6/7 on bristol scale.maybe time for some loperamide but she is frightened to take it as docs told her not to last year
Posted 11/3/2011 4:28 PM (GMT 0)
Has biopsy confirmed a UC diagnosis? Is it possible that she has Crohn's and there's inflammation above the TI? That would account for the diarrhea, fatigue, etc.

My other suggestion (aside from the good advice above) is to consider gluten intolerance. Put her on a 3 or 4 week gluten-free diet and see how she feels then. I did that early this summer because I was still having soft stool, urgency issues, fatigue etc. It solved a lot of my problems. Even if she's been tested for Celiac and come up negative she can still be sensitive to gluten.
Posted 11/3/2011 4:45 PM (GMT 0)
had been tested for celiac a couple of years before uc was confirmed .
one of the docs did querry crohns as she has lost so much weight and despite protien shakes etc still cant seem to gain any
Posted 11/3/2011 5:08 PM (GMT 0)
sunvick, please read my post again. You can be negative for Celiac but STILL have problems digesting gluten. Gluten-free diets are not that challenging, especially if you look at it as a short-term assessment. Gluten intolerance (other than Celiac) is becoming more evident in the scientific literature and before making a decision about surgery, etc., it seems something worth considering for your daughter.
Posted 11/4/2011 10:07 AM (GMT 0)
What about her vitamin D, B12, and hemoglobin/ferritin levels? If her calcium is low, there's a good chance that her vitamin D is low as well.

Has she had an upper endoscopy? It could be Crohn's. (Isn't ileitis associated with Crohn's?)

Instead of taking balsalazide, what about Asacol or Lialda? Sometimes switching up the 5ASAs helps.

Of course, it could always be IBS, which doesn't show up on scopes. Have her keep a food diary.

I'm sorry she's not feeling well. I was in a similar situation a few years ago--I was scheduled to have surgery and went to have scopes done to check on the colon and rule out Crohn's. All of my colon except the last few centimeters was healed, so we canceled surgery. It took the right combo of rectal meds and a few more months to get into remission.
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