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Ulcerative Colitis
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Posted 3/3/2010 6:54 PM (GMT 0)
Hi everyone. New to the boards.
I'm almost 21 years old and a college student, I was diagnosed with proctitis in December and was put on Canasa 1000mg suppositories for six weeks, which helped with the bleeding and mucous. By the end of the six weeks everything was much better. Two weeks later though it came back and was twice as bad as it was before I started the first treatment. My doctor had me start the meds again, and I've been on them for the last three weeks now.
I've noticed that my stool is not liquid anymore, but I'm still having blood every now and then, and the cramping/abd pain and need to go to the bathroom often is still really bad. Has anyone experienced canasa not working their second time around?

Also, because I'm new to all of this, I don't know what to do about my diet. I've tried to do some research but haven't found much on what I should or shouldn't eat. I've been trying to keep track of what makes me feel sick and make my symptoms worse, but I feel pretty bad all the time, so I can't really tell anymore. Does anyone have any suggestions?

Thanks in advance!
Posted 3/3/2010 7:07 PM (GMT 0)
Welcome to the Forum!

Why did you stop the meds?  Did your doctor not discuss with you the need for a maintenance dose?  I was originally diagnosed with UP in '05 and it has now progressed to left sided UC.  I tried lowering my supps once.  ONCE. Got down to every other day for about a month, then flared BIG time in 2008, ended up on prednisone for 7 months as well as oral meds.  (This is when UP had progressed to left sided UC).  I will never be off of them and I am fine with that. 


As for diet, everyone is different.  Low residue is good if you are flaring.  All else is trial and error. 

Get on the rectal meds and stay on them. tongue

Posted 3/3/2010 7:09 PM (GMT 0)
Hi and welcome!

Unfortunately, I've heard a LOT of stories like yours...diagnosed, only used the meds until they reached remission, then flared again, only to have the meds not work well again. I find it odd that your doc didn't have you stay on the Canasa for maintenance. With UC, you have to stay on the meds to keep the inflammation at bay.

You might need an oral med or perhaps use enemas in the PM and suppostories in the AM to get this under control.
Posted 3/3/2010 7:22 PM (GMT 0)
Well I'm definitely no expert on this but when I was first admitted to the hospital they put me on a clear liquid diet which actually was really helpful and really calmed things down as far as like urgency and cramping. Like I still had to go a lot but it wasn't as disturbing as when I was eating like toast and stuff. After a while they started me on a low residue/low fiber/soft diet. I've been doing really well with that so maybe you could try that. I mean basically you're just gonna have to try stuff because the same thing isn't going to work for everyone but there are some things that obviously aren't going to help. Like everyone knows that fiber makes you go and when you're going to the bathroom 30 times a day the last thing you need is food running through there any faster than normal. But yeah I would try a clear liquid diet until it calms down maybe along with some Ensure and then start experimenting with a low residue/fiber/soft diet. And also my dietitian told me to start keeping a food log so that might help you also. I hope this helps! =] Good luck.
Posted 3/3/2010 7:56 PM (GMT 0)
Try reading this article my Doctor wrote about IBS and IBD.  You might get some ideas on eating that would help you...

http://www3.interscience.wiley.com/cgi-bin/fulltext/114025994/PDFSTART?CRETRY=1&SRETRY=0

 

Posted 3/3/2010 8:01 PM (GMT 0)
If you haven't seen a gastroenterolgy specialist, you need to do that ASAP. You need a firm diagnosis, and you need to have a scope to see what parts of your colon are involved. Canasa only reaches the rectum - the very end of the colon. If the inflammation reaches above that, you will need other treatment, oral medication or enemas or perhaps both for a while.

The important information is that Ulcerative Colitis is a chronic, incurable disease. The only way to get rid of it is by having your colon removed, and you're a long way from that. Most of us never get that far along. But remember that since the UC doesn't go away, it's really important to keep taking your medication even when you're having no symptoms. You should be on maintenance meds to keep the symptoms from coming back.

Please do make arrangements to see a GI and get proper diagnosis and treatment. The earlier you're properly treated, the greater your chances of getting the symptoms under control so you can enjoy your college years as you should.
Posted 3/4/2010 12:19 AM (GMT 0)
I was diagnosed with Colitis 2003. Denial...denial! Progressively worsened. It turned into Ulcerative Colitis in late 2004. Fall of 2005, thought it was the end of me....

My granddaughter at 13 was diagnosed with severe Chrohn's. We finally had to change our diet. "Breaking The Vicious Cycle" by Elaine Gottshall got us on the road to recovery. I was put on Lialda...within 3 days my life turned around. I HAD to make a life change in my eating. No gluten, no sugar, no high fructose corn syrup, no cornstarch....no unknowns. My meals had to be smaller...I wanted to live and enjoy my grandchildren. I wanted to have a good life with my husband. It is not easy...you have to make a life change....it is not easy.

My colonoscopy on Jan 18 was normal and showed no signs of colitis. I look at colitis as a blessing....taught me to eat healhier.
Hope this helps...tried to make it brief.
Posted 3/4/2010 1:06 AM (GMT 0)
Hey everyone. Thanks for some of your thoughts and opinions.

I've been seeing a GI specialist since I started having GI problems. I had my colonoscopy done in december of which the doctor said I had ulcerative proctitis and that also the illium (sp?) also seemed to be affected as well.

I was thinking about giving my GI doctor a call tomorrow because I've been in alot of pain over the last couple days. I'm not schedualed to see him until mid April. I'm just tired of feeling the way I do.

As to the meds I was first put on, the specialist told me that after the first round of Canasa, I should be better afterwards and that it might not come back and thats why I was only on it for six weeks. So much for that. I'm on the meds again for another six weeks (i'm half way through though).

~fran, thanks for the book title, I'll look into that. I appreciate all the advice I can get.

This whole process has been really overwhelming. I've always been very healthy and haven't had any major problems. I feel so young to be dealing with something like this and because I've always been so healthy, I don't know how to manage this very well.

Posted 3/4/2010 2:43 AM (GMT 0)
Just remember that your diet may vary from everyone else. What soothes my colon may flare yours ... like someone else suggested, it may be wise to start with a clear liquid diet and then slowly add foods to test how you react to them. For instance, some people on the boards cannot have nuts, chunky raw vegetables or tomato products whereas I have no problems with them. Some people here can drink coffee and soda whereas I cannot drink soda and only recently have been able to tolerate small amounts of coffee (thank goodness) ... UC can be so individualistic so when it comes to diets, there are a few universal truths (like probiotics being good for you) but the rest is a crap shoot ... you just have to experiment!
Posted 3/4/2010 5:20 AM (GMT 0)
thelion.....did your doc possibly say the cecum? If so, or even the ileum (which would be Crohn's)...you should also be on oral meds such as Asacol, Pentasa or other 5ASA.

I would suggest you get a copy of the pathology report of your c-scope.

quincy
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