wonder if this means the lialda is no good too

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/13/2008 1:49 PM (GMT -6)   
So last night I got off work and went to my parents' house to hang out with my sister until my boyfriend got off at 10pm. We had planned on watching a movie but I was in the bathroom the whole time so I had to postpone.
But man was it brutal... The only thing I ate that day was a chicken sandwich for lunch and some ravioli and marinara sauce for dinner (which I'm assuming was the culprit).
Anyway, so sitting on the toilet it was basically like I was having full body muscle spasms, like every muscle in my body was having tenesmus along with my colon- my legs, my stomach, my lungs/diaphragm.. I could literally feel the energy draining right out into the toilet with everything else.

By the time my boyfriend picked me up (two hours later) I was so exhausted and sore I couldn't even stand up straight. He kept trying to get me to talk and I felt like if I talked in more than a soft voice it would make me have to go to the bathroom.
Then I started thinking about how it felt and had a new way to describe it..... It was like I had a bomb in my large intestine. This bomb is covered with spikes and every little bump in the road caused it to tear things up even more but if I moved too much it would set the bomb off (if you know what I mean). So I just sat there with my eyes closed and my hands on my stomach hoping we'd hit every green light.
 
I feel okay right now (though I haven't eaten yet) but since I've had this same experience twice this week (and it's only Wednesday) and the bleeding, urgency, pain, and frequency have been steadily increasing, I'm wondering if the Lialda is to blame. It was the same way with the Asacol, Colazal, Pentasa, etc... I felt worse on them than I did before I started. Then I ended up on prednisone every time, which is also not an option anymore due to the fact that I get steroid dependent, I've taken it so many times that it is basically no longer effective, and it's already caused me more harm than good. Ugh.
 
So, it's sort of disappointing because the doctor just wanted to try Lialda first and then go to Remicade, which means that would be my next step if this keeps up, at which point I'd just schedule surgery and get it over with. Maybe it's time to start really planning.
 
Okay I'm done ranting. Hope everyone's having a nice Wednesday

ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/13/2008 2:11 PM (GMT -6)   
How does your body respond to regular aspirin when not on a flare? If it tears u up pentasa and Lialda are pretty much just regular aspirin and would have similar sides like pain and bleeding. Might want to approach your GI about it. Your graphic description of the spike bomb gave me goose bumps, it must be terrible.

Tenesmus is the worst! Its like ENOUGH ALREADY! I will pray for you to have less pain.

I've taken pentasa a few times to control monster flares but I've always jumped off as soon as I could, the sides and all. Doc seems to think its ok for my sporadic use. I've never used remi before and I've heard mixed feedback.

Have u tried a heating pad on your belly? Sometimes I've noticed that it calms spasms during bouts of tenesmus. Just watch out for the "hot flop" if you have to go to the bathroom after or during heating. :) Epsom salt baths in hot water seem to provide a measure of relief as well. Be well.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/13/2008 2:17 PM (GMT -6)   
Hi Edie,

I am so sorry!! Have you tried sulfasalazine? Also what about Imuran or 6-MP before remicade?

ucwarrior is right about the heating pad, I have a huge one and it has really helped me during flares, I would keep it on all night long and it helped get through the night.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/13/2008 2:23 PM (GMT -6)   
I am able to take aspirin/ibuprofen occasionally without problems because I get severe migraines that can't be helped by Tylenol but if I take an ibuprofen early enough I can get it to go away without having to take any Imitrex. It's been awhile since I haven't been flaring, I don't really remember if it gives me troubles then.

It is interesting that they tell us to never take NSAIDs but then the medication we're given for maintenance is made of some of the same things. Makes you wonder.

Typically when I go into a flare the only thing that brings me out is prednisone.. But then I get stuck because if I go lower than 5mg I flare again. The last time I took it I had no results except for all the usual pred side effects, so I think I'm going to try to stay away from it from now on.

I have tried the heating pad before, it does seem to help a bit. They make those ones that you can stick on and wear under your clothes, they're for mentrual cramps or arthritis but I was thinking of buying some and trying them out. I like having the heating pad on my lower back because it tends to get really sore when I'm flaring as well.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/13/2008 2:38 PM (GMT -6)   
Beth,
I don't think I've ever tried sulfasalazine, I had been on Imuran previously though but it was in conjunction with prednisone, it did seem to keep things from getting too out of control when I stopped the pred but never 100%. Might try it once more before going to Remicade since it seems less "serious". I have my next appointment on Monday to talk about the scope/biopsy results so I guess I'll find out then. I really don't mind the idea of Remicade, it's just frustrating when you hope something will work and you just keep getting worse.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/13/2008 2:53 PM (GMT -6)   
Why did you stop Imuran? Usually this is a med that is taken long term because of the fact that it takes so long to build in your system. If the Imuran helped, maybe you can try going back on that instead of jumping right to Remicade?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/13/2008 3:57 PM (GMT -6)   
I took it for a little over a year but when I moved from Iowa back to Florida I didn't have health insurance for a little over three months and couldn't pay for it or follow up with the required bloodwork, so I didn't feel too comfortable continuing it without being under a doctor's care.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 8/13/2008 4:48 PM (GMT -6)   
you describe it well.I remember thge first severe flare i had and when my dad was driving me to hospital i felt those intense acute pains you describe. its like an electric shock in your gut.so intense!!you need to get to a doctors, sounds like real nasty inflammation to me.
i hope and pray you feel better soon
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 8/13/2008 5:15 PM (GMT -6)   
Sorry you are having such a severe flare. Lialda didn't do much for me either. It does sound like you are sensitive to mesalamine doesn't it. It is unfair that you are forced to make very difficult health related decisions requiring clear thinking while you are feeling very sick. I hope you have someone by your side that can help you and advise you.
UC diagnosed 10/05, first symptoms 1983
asacol daily and rowasa as needed 
Trying out Digestive Fitness Probiotic
past rx: colozal, lialda, canasa


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/13/2008 5:20 PM (GMT -6)   
It's weird because from what the doc said, the scope showed severe inflammation up to the sigmoid colon and the rest of the colon looked okay but scarred.. He took a ton of biopsies from all over to make sure it wasn't just "quiet" disease that was active but didn't look like it... I'm thinking, since I've felt worse since and had a TON of bleeding after, perhaps the biopsies and the miserable prep made things worse off than before. I suppose if there's any way to worsen a flare, drinking Fleet Phosphosoda could certainly be one of them.

Thanks for all the well wishes everyone.. Even if I didn't any outside support, I would be just as happy just coming here smilewinkgrin

OT- does anyone else love these new emoticons as much as me??  shocked turn smhair idea blush

Post Edited (ediekristen) : 8/14/2008 10:46:18 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 8/14/2008 1:26 AM (GMT -6)   
Yep, the new emoticons are great except for the rolling one...gives me a headache actually. (I also have a vestibular disorder .. bppv...since I was 11, and in a mild attack at this time.)


I have suspicions, but no knowledge or information, that prednisone lessens the opportunity for 5ASA meds to work.

I also believe that if doctors give their patients too much 5ASA meds to start, the sensitivity to them increases more quickly..

Yes, I would suspect you can't take 5ASA meds any longer...seems you might want to get off that train (I'll miss you though..lol)

I have experienced an increased exacerbation of a flare when I used Fleet prep...can't say enough bad about that crap. (no toilet emoticon I've noticed). If you're flaring, that's probably what the bleeding is from at this time.

Your description is perfect..I can just feel the leg cramping and stuff (That's what my periods felt like) and the feeling of trying to poo out a watermelon, over and over and over again.

Regarding your sensitivity/possible allergy to salicylates....there are foods high in salicylates, you might want to check into that.

Now....what about Entocort and steroid enemas instead of going to pred.

I feel for you...truly.

You could ask the doc for some dicyclomine to help with some fo the spasming.

PLEASE....don't use a heating pad all night!!!

Keep us posted as to how you're feeling.
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 8/14/2008 10:29 AM (GMT -6)   
That sounds horrible, ediekristen! Lialda didn't do anything for me either. Maybe you could see if something like proctofoam could help until you decide what to do next?

I hope you're feeling better today!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*surgery tentatively scheduled for September

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