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Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 2/4/2008 4:51 PM (GMT -7)   
I am the mom of a teen with UC.  Things have been going fantastic since starting Remicade last summer, but the past month has been experiencing bad pain (7-8 on pain scale), fatigue, loose/more frequent stools for days/week, then feels better for a few days/week and then comes back.  I am guessing it is the UC, but wanted to know all of your experience if you don't mind sharing, as many with UC also have IBS.  We have tried Bentyl, but that doesn't seem to help that much if at all.  Is the pain from IBS pretty much only around the time of a bm or can it last all day or days??  Do medications such as bentyl help a lot?  Is it something that is really frequent in your life or do you have isolated "episodes"?
 
Any insight or informatin you could share would be really appreciated!  I have posted on the UC forum with not much luck getting response.
 
Thanks!!
 
Kelsie  

SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 2/4/2008 5:41 PM (GMT -7)   
I have had UC for over 20 years and just started Remicade this past summer. I am not doing well and I just had a colonoscopy last week. She has determined that I might have to have an increased dosage of the Remicade. I guess, I look great on one side of my colon and the other side looks terrible. That being said, she also said she believes that I could have an overlap of both IBS and IBD..so, go figure.
I also might add that this is a new doctor for me. She is a new doctor for me and has given me as many options as possible. I was pleased to hear that she thinks my colon looks decent considering the fact that I feel terrible. I do think personally that I do experience IBS...I just never really thought of it that way until today. I don't know why.
Anyway, I started Remicade in June of 2007 and I believe it worked well for maybe two to three months. Then, I started to flare again. At this point I am back on prednisone and next week I go for a blood test to check the status of the anti-bodies regarding the Remicade. She wants to increase my dosage from 5mg to 10mg of Remicade and then also change my treatment dates from every 8 weeks to every 6 weeks. We'll see in about two weeks how this goes. I am anxious too because I really don't think that the Remicade is working for me. Even if it IBS, there's one thing to be going to the bathroom with that urgency...then there is another when you experiencing bleeding, mucous, and pain. I just feel that if you are on the Remicade, shouldn't you have at least reduced pain and trips to the bathroom? I just have to wait and see what happens.

As for Bentyl, I have never been on that and have never even heard of it actually.

It sounds as if your teen is going through exactly what I am right now. I would say that regarding the pain, I usually just have it right before and during the bm. It can be both frequent and isolated for me. It just depends.

I hope this helps you a bit...
Stephanie
UC diagnosed in 1985...22 years.


Was on Remicade...no longer working for me as of January 30, 2008



50 mg 6mp, Rowasa and Cortenemas as needed.
Probiotics and Aloe Vera Gel (Just started this a few days ago...)


gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 2/4/2008 9:35 PM (GMT -7)   

I'm just a plain ole IBS-A gal here but I've been dealing with this dopey "syndrome" for nearly 30 years.  D has never really been my problem, at least not to the degree that you've described.  When I have it, usually 4 or 5 times in a day is the max (and I am always grateful for D!). 

Regarding pain, I and many others do experience it with great regularity (no pun intended!).  It's a daily occurrence for me, regardless of the quality or quantity of BM's.  While there may be some "break" from the pain after a particularly "wholesome" elimination, usually the pain returns within an hour or so.  I suffer with trapped gas that causes tremendous pain.  My gut is a gas-making factory - in production 24/7!  It is not uncommon for folks with severe IBS to experience daily pain.

Bentyl, IMO, is the single most useless medication I have ever taken (and that includes all medications across the board!).  I have no idea why doc's still prescribe it.  I have never had any success with the anti-spasm drugs and in fact, find they worsen C in my case.

Good luck!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/5/2008 11:27 AM (GMT -7)   
I have crohns and IBS, my GI told me that there are 2 things for sure that can help both IBD and IBS and they are fibre (even in the form of supplements) and probiotics...does your daughter take either of these? If not I strongly suggest she does and patience is likely also required.

It's important to take both daily while flaring from one or the other or not, my GI told me to take them for the rest of my life.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 2/6/2008 5:36 PM (GMT -7)   
Thanks everyone that has replied. I don't quite know what to think, but I really do feel it is a flare and that maybe going longer before Remicade this last time was the reason--or could it be because the initial loading doses were still helping and we need to go more often or at a higher dose? We are doing stool cultures--if we can ever produce!! What is it when you NEED to go you can't? I really don't think there is CDiff or anything, but guess we have to check it out to be safe. If that is negative, we may ask to have Remicade at 4 weeks to see if that helps. This missing school has to stop, it is too hard when in high school! Or maybe we are just in denial having had 4 wonderful months thinking that is the way it was going to be from now on?

I think I will post a Remicade question and see what I get.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/24/2008 3:22 PM (GMT -7)   
Hi, How far apart are the Remicade infusions? Mine are every 8 weeks. I have Crohn's Also maybe the doctor needs to increase the doseage. I had mine increased about a year ago.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 

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