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Ulcerative Colitis
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Posted 2/26/2008 9:20 PM (GMT 0)
Hello all,

 

I was dx with UC 10 years ago. Had two minor flares that were controlled very quickly with Salofalk supps and Asacol.  However, 1 year ago I had a very serious flare that caused me to be hospitilized 2x. At one point, minutes before my third colonoscopy, my GI specialist told me that if my colon looked as she expected it would I was facing surgery. As an ORNurse I knew exactly what she was talking about and was quite upset. I am apprently on the last medical resource before surgery. She has told me if I flare again it most likly will not be medically treatable. She was surprised when she did the colonscopy that my colon was not as bad as she thought. She put me on Methotrexate (weekly injectable) and it "kicked in" and I am now in remission-since Oct 07.

Over the past two weeks I have had some cramping, increase in stool-not very loose, but they are thin again and have the same odor to my gas. Also my stools have become yellowy-gold color over the past week? This is new to me. Anyone know what is up with that-anyone else experience this too? I have not changed my diet or meds.

I  was doing awesome-normal stool color, consitentcy and frequency. I have no idea where this bowel activity is coming from, whether I am at the start of another flare, or what. I have increased my enemas and supps and it dosen't seem to be getting worse but it isn't necessarily gettting better either. I am reluctant to call my gi doc because I don't want to hear her say the word again "surgery" Besides she is almost impossible to reach.


Any ideas suggestions? I am feeling quite frustrated over all of this and don't want to believe I am flaring again.

:(````   HELP>

Posted 2/26/2008 9:44 PM (GMT 0)
Hi Ornurse,

I'm not sure which other treatments you have tried, but there are azathioprine/imuran/6-MP, remicade and humira out there. If your GI does not discuss those with you, get a second opinion, and now may be the time to do it, especially since surgery has been brought up.

I had a major flare in Sept/Oct and since then my bm's have been yellow or green and stringy. I had to get off of all 5ASA's (such as sulfa, asacol and lialda). I think it means that there is inflammation in the colon still, though I have had no blood (besides my hemi) and have 1 to 2 bm's a day now, rather than 25+.

HTH!
Posted 2/26/2008 9:58 PM (GMT 0)
Perhaps the meds are not working anymore, and this tend to happen in us UC patients. This is exactly what I was afraid of. Like the others, what drugs have you been on? Have you tried modifying diet to change the course of your disease? have you tried the Specific Carb diet?
Posted 2/26/2008 10:50 PM (GMT 0)
Welcome to HealingWell, OR nurse. I am also a nurse, but I have always worked in the Peds area.

I don't know what medications you've used in the past, but there are a host of newer ones available, and more coming down the pike. Several of us here have had great results from Remicade, while others have been helped by Azathioprine. Humira is in the investigational phase for UC as is Abatacept. The biologicals are promising a whole new future for us.

You've definitely come to the right place for support and information based on personal experience. I'd suggest you browse through old threads and feel free to ask for more information from the group.
Posted 2/26/2008 11:04 PM (GMT 0)
Hi blueclassring..

Could you explain what is Specific Carbohydrate Diet?
Posted 2/26/2008 11:52 PM (GMT 0)
Hi and welcome to HW?sOUNDS LIKE THE START OF A FLARE TO ME.Thin stools mean inflamation normally.Sometimes flares just come out of the blue like this unfortunatly.Hopefully you can get into your docs and try another med to get it sorted
Marty
Posted 2/27/2008 7:00 AM (GMT 0)
do a search on google for the specific carbohydrate diet. it has worked for many including me!!
Posted 2/27/2008 9:10 AM (GMT 0)
what happens if you really scale back the diet? like just cut down to easily digestible foods...not necessarily the BRAT diet, but close? And a drug not many know about it Prograf (Tacrolimus). It's in the same family as cyclosporine, but for me has no side effects and has kept me in remission for almost a year now! And don't be afraid to call your doc! It's SO much better to catch it and start medicating early than to wait! You beat the odds once before, and your doc knows it, so don't be afraid to face it again! Good luck!
Posted 2/27/2008 4:59 PM (GMT 0)
Hello again,

The following are medications that we have tried:
Asacaol up to 12 pills per day-worked for a years until this recent flare
Salofalk supp- same as Asacol worked great until this flare

During my serious flare we tried:
Prednisone-up to 40 mg day-have been on that 3 different times during this flare. My GI used it only as a last resort. She hates the drug! Yes it works but has affected my joints.

Betnesol enemas-a steroid that works really well -after the third enema I could not believe the difference it made.NAd this was during the very worst of my flare.

Azathirorpine-made me violently ill 1 hr after taking it
Methotrexate- now on 25 mg per week and was doing awesome

Remicade is not approved in Canada for use with UC but is approved with Chrohn's-so legally my GI cannot prescribe it to me.

Something occured to me last night. The "pain" which I am having is very different than anything I have felt before. Its not crampy at all or intense. Its just uncomfortable for a few seconds then gone. Then it occured to me that I helped a friend move the other day and since then I have been having this weird "pain". Could there be a corelation or just coincidence in timing?
Today my BMs definately on the softer side and am gonna call my GI doc today. :(````
Posted 2/27/2008 8:19 PM (GMT 0)
ORnurse, I'm pretty sure Balsalazide (Colazal) is approved in Canada, I think we have some other Canadians on it. It's helped some of us who either couldn't tolerate Asacol or who it stopped working for. You might ask about that.

Also, consider a good probiotic. VSL#3, Culturelle and Primidophilus Reuteri are some of the ones several members here take, but there are a lot of different brands on the market. They can help replace the normal intestinal flora that get overwhelmed by the disease, and sometimes are very helpful.

I hope you and your doctor are able to come up with a plan that works. Steroids are no way to live, as my anoxic necrotic shoulders can tell you. Let us know how you're doing.
Posted 2/27/2008 8:29 PM (GMT 0)

Yujin said...
Could you explain what is Specific Carbohydrate Diet?

It's a diet developed for IBD that eliminates certain carbohydrates that are difficult for a compromised digestion to break down and absorb. These improperly digested food particles go on to feed bad gut flora, which increases symptoms... hence the title of the book "Breaking the Vicious Cycle."

Here's a link to the book

http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1204144007&sr=8-1

and here's a link to the official SCD Web site.

http://www.scdiet.org/

To the original poster, I'd encourage you to check out alternative and supportive healing options that may decrease your need for meds. Jini Patel Thompson's book Listen to Your Gut is a comprehensive look at everything from dietary manipulations to oriental medicine.

http://www.caramal.com/ltyg/ltygdescription.asp

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