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Daughter is in Constant Pain !! Help, what do we do ???

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Ulcerative Colitis
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Posted 12/12/2010 6:16 PM (GMT 0)
So our daughter's last scope showed 95 % remission.  All was going well.

We tapered from 25 mgs to 22.5 mgs and she began having pains in her abdomen.  Now,generally, when we go down in mgs the first few days she always has pain. After about 3 days on the new dose she's back to normal.  But this pain has been pretty constant since the first day of 22.5 mgs.  She is now on her 3rd day of 20 mgs and still in  pain.  Nothing seems to help. 

We reduced her Lialda from 4 to 3 a day a few weeks ago and that seemed to help.  Should we lower the Lialda to 2 a day ?  Is there any danger in that ?

Her bowel movements are still only once a day.  Fairly normal.  Sometimes soft but no diarrhea and No blood, thank God.

1)  Could the Lialda be causing the pain?  Since Lialda is basically released thru out the

    day (at least that's my understanding of it), could the Lialda be causing       

    her stomach pain ??

2)  Is the pain related to the prednisone tapering ?  And once she's off the pred. the

      pain should be gone??

Also, have any of you tried to increase your cortisol levels naturally whilst tapering from prednisone.  

The first few days of a taper she is always sooo tired and completely fatigued. 

Thanks in advance for any helpful info  you guys can offer.

Posted 12/12/2010 6:45 PM (GMT 0)
I can 100% relate to your frustration, except I am in your daughter's shoes, not so much watching someone else go through it which has to be extremely difficult. I don't think reducing her Lialda would hurt but it may not necessarily help. You will have to wait a few days to see if it hurts or helps. I doubt the pain is due to prednisone tapering but it's strange that she's having formed stools, no blood and experiencing abdomen pain. Usually the pain is accompanied by other UC symptoms. Do you think her symptoms are caused by inflammation or something else?

I can relate to symptoms increasing the days following a decrease in predinsone, I think things always get a bit unstable when you taper doses (although m GI said it shouldn't). I've been tapering at 1mg since 12mg to avoid this and it seems to be helping! How many days do you wait between tapering?

Have you tried other 5ASAs?
Could this be a result of the Diflucan?
Are you still using all the supplements in your signature? I stopped all my supplements, except vitamin-D and I haven't noticed any negative effects from it. I am thankful to not have to take so many pills each day.
Iron can be hard on people with UC.

How can you naturally increase cortisol levels?
Posted 12/12/2010 6:51 PM (GMT 0)
Where exactly is her pain and when does she have it?

When does she take the probiotics?

Is she still taking the iron supplements?

Explain 95% remission according to the scope....

For the taper, maybe alternate....example would be 25, 22.5, 25, 22.5, 25, 22.5....22.5, 22.5..........22.5, 20, 22.5, 20, 22.5, 20.......20, 20, 20....

That's a recognised method of tapering that could help.

q
Posted 12/12/2010 9:07 PM (GMT 0)
Did the doctor rule out pancreatitis? Mesalamine can cause it.
Posted 12/12/2010 9:22 PM (GMT 0)
I am not sure about her pain. I don't think it would be from reducing the prednisone. I have had a lot of side effects from lowering the pred, joint pain, horrible fatigue, insomnia, symptoms coming back (blood or D) but I have never had just constant pain.

I did find once I got below 20 mgs taking some vitamins and minerals that help adrenal function to help with the fatigue. If you look up vitamins and minerals for adrenal fatigue or for adrenal function you will get a lot of info. There is a long list and some weird supplements. I didn't want to take anything off the wall or add too much to all the stuff I was already taking, but I did find 3 that I think really helped. B complex vitamin, vitamin C, and magnesium. Just be careful with the magnesium, too much can cause D, you want to look for a slow release or sustained release formula if she takes it.
Posted 12/12/2010 10:47 PM (GMT 0)
I had a LOT of abdominal pain when tapering pred. It got better when I got completely off. Mesalamine intolerance can cause abdominal pain. However, it will be hard to tell what's going on until she's off pred. I know people usually take Lialda all at one time but I wonder if dividing the dosage would help? Some folks do take 2 tablets in the AM and 2 in the PM. Or like 1 in the AM and 1 in the PM. Maybe a veteran lialda user can chime in on that...
Posted 12/13/2010 12:30 AM (GMT 0)
Sorry, I had you confused with killcolitis for a moment. She has a daughter with UC that is doing anti-yeast. That's why I asked about Diflucan.

Have you considered getting her checked out for yeast imbalances? Have you gone through bacterial testing? Have you tried modifying diet? My UC is currently doing decent but I am trying anti-candida diet. Not being too strict about it but strict enough that I am not feeding this horrible sweet tooth and the organisms.
Posted 12/13/2010 1:08 AM (GMT 0)
I don't have any other wisdom to add, except to say that you'll all in my thoughts.
Have you called the GI? When I was tapering, I had to go back up a few mgs from time to time and then come back down again slowly as Q suggested.
I'm so sorry for the rough road... keep your chins up, you'll gt through this!
Posted 12/13/2010 1:26 AM (GMT 0)
My last flare was unusually painful and would leave me on the floor for over an hour to start my day. That went on for 4 weeks despite high prednisone until I used Librax, Hyomax, Mebeverine which are supposed to relax and calm the smooth muscles of the intestines. Calming the gut down resulted in a fast stop to my bleeding and to my pain.
Posted 12/13/2010 5:24 AM (GMT 0)
It wouldn't hurt anything if you wanted to cut her down to 2 pills of Lialda a day. I was just reading the Lialda pamplet today, and oddly enough the remission rates is about the same for those who took 4 pills, vs 2 pills a day unless I read it wrong.
Posted 12/13/2010 6:12 AM (GMT 0)
It could also be the supplements. If they are new to her regimen of pills, you might want to cut back and introduce one at a time. I found that one vitamin I took in the AM gave me stomach cramps. But it took me a week to figure it out since I'm so used to have all kinds of GI symptoms I didn't make the connection.
Posted 12/14/2010 9:58 PM (GMT 0)
Thanks everyone for your replies... to answer some of the questions.


She was taking Asacol for a very short period of time. No other 5-ASA.

All the meds. in my signature are ones that she is currently on.

Her GI used the term "95 % remission" The mucousa was totally normal.

Her pain is on the right side, sometimes across the top (maybe in the transverse ?)

She takes her probiotics thru out the day. She doesn't take them all at once. Is she on too many maybe ?
Her VSL #3 she usually takes later in the day mixed with applesauce and psyllium.

She is still taking the liquid iron but maybe I'll eliminate that for a few days and see if it helps any.

We didn't have her checked for pancreatitis. Is that a blood test ?
We haven't had her checked for yeast either. How does one do that ?

We did go to the hematologist today and she got some bloodwork. Well alot of bloodwork. 8 vials worth. Poor kid passed right out.
Her liver enzymes are fine. Hemaglobin was normal. We have to wait on her cortisol levels and her thyroid function.

I asked about increasing cortisol naturally b/c my general practitioner mentioned licorice and so I went out and purchased it only to find that licorice should not be taken if you're on prednisone !!

I figured increasing cortisol naturally would help with her fatigue.

Anyway, thanks again everyone for your replies and thoughts.
Posted 12/15/2010 4:12 AM (GMT 0)
"Also, have any of you tried to increase your cortisol levels naturally whilst tapering from prednisone. "

Yes. I tried taking licorice ( not the candy ) tea and concentrated pills, it removes the liver enzyme that removes the cortisol. There are others. I cannot say I had much succes but AVOID Phosphatidylserine I am fairly certain that by taking that I caused a flare.

I had more success changing my meds to sulfasalazine, librax, mebeverine.
Posted 12/15/2010 4:48 AM (GMT 0)
Is she showing any signs of flu like symptoms I know that there is a flu going around that is causing major pain in the right side of the abdomen.... it just went through our house ... sending my husband to the hospital to get his gallbladder checked. Also, a few on healing well  are experiencing this symptom from the bug going around " the right side pain"

 Thinking of you and hoping  she feels better.

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