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Ulcerative Colitis
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Posted 10/1/2010 9:52 AM (GMT 0)
Hello all on this forum, cant believe i didnt find this place sooner!

Heres my story :-). Symtoms started around June 2007 after quite a prolonged period of stress in my life but they weren't bad enough to go to the doctor but they gradually became worse (the stomach aches and general UC unpleasantries!) so i went to the GI after a few months and was diagnosed with mild pancolitis and i was put on Asacol. Things were perfect until i think im better and dont have to take my Asacol anymore...big mistake! Had a major flare October 2008 and since then im on and off the prednislone (probably around 8 times since then). I would be off the prednisolone 2 weeks and symptoms would start to return.

I finally decided to go on Azathioprine 4 months ago and everything seemed to be fine but again i have flared just this week and im just about to go off to university so not the best of times! I guess my question is, is there anything else i can do to help? The VSL was started around the same time as the Azathioprine and it did seem to help calm things down.

Any help much appreciated!

UClad
Posted 10/1/2010 10:44 AM (GMT 0)
Hi, welcome to Healingwell :) Are you on oral meds such as your Asacol again? Have you ever tried rectal meds such as Rowasa, Cortifoam or Colocort? Even if you have pancolitis, your flares are always going to start at the rectum and the sooner you address the lower inflammation, the better chance you have of taming a flare. Are you avoiding Nsaids?
Posted 10/1/2010 11:18 AM (GMT 0)
Thanks for the quick reply! Yep i never take any form of nsaids worked out they were bad a while back! I am still taking the asacol but i really dont think its having any affect now. I have never tried rectal meds...its always been oral medication from my GI. My GP said he would write a referral to my GI about rectal meds but my GI didnt really take notice. I have also never tried restricting my diet or changing it as i was told it doesnt have an effect...my GI told me i could drink alcohol in moderation is that right? Is there a good place to start with controlling diet?
Posted 10/1/2010 11:27 AM (GMT 0)
Hi and welcome!

VSL helps me, also, so I double the dose and add in a few other probiotics when I feel a flare coming on. Twice in recent months I've avoided a flare that way.

Diet.... a much-discussed topic here! I find diet doesn't make a huge difference, as long as I avoid the foods that obviously cause me symptoms while flaring (raw/scratchy foods, greasy, gassy.....) and others have found dramatic relief through a change in diet. If you use the search function at the upper right of the page, look for SCD - Specific Carbohydrate Diet - and you'' come up with, I believe, thousands of posts.

We're all individual as to how we respond. I drink a few glasses of wine on weekends with no affect, but beer doesn't sit as well, possibly because of the carbonation (I don't drink soda either.) You could do a search on alcohol. as well, and find several discussions here.
I've heard alcohol isn't so good with the aza, but... someone else would be betetr to speak to that, I am not sure.
Posted 10/1/2010 11:40 AM (GMT 0)
As long as your liver counts are fine while being Aza, then a few drinks here or there shouldn't be an issue. I am not a big drinker but I have had some drinks in the past while being on 6mp with no issues, other then the next morning the alcohol gives me looser stool that is! :)

As for the rectal meds, some doctors don't like to prescribe them for some reason. Maybe due to lack of compliance? Or maybe they don't think they work as well? But sometimes you have to be persistent to get them and try them. If you don't feel that Asacol is working, there are other meds you can try such as Lialda, Apriso, Sulfasalazine or Colazal.
Posted 10/1/2010 7:03 PM (GMT 0)
Hi..welcome.

Please request the rectal meds...I would suggest Rowasa (if you're in the US...Salofalk if you're in other).

Sherry...we need a "banging head against wall smilie" or blood boiling one.

Yes...rectal meds take commitment, I've used them for over 21 years.
I don't have pancolitis, however, but my UC has never been as bad as the first few years of treatment from both ends.

q
Posted 10/1/2010 7:11 PM (GMT 0)
if I were you I would ask my GI to increase my oral meds, and then get rectal meds:  ideally rowasa at bedtime and canasa during the day. I think if you hit a flare early and hard you have a better shot at coming out of it. and if you are not on probiotics, start one.  if you are on probiotics, increase what you take.

Posted 10/3/2010 4:18 PM (GMT 0)
I have a meeting with my GI next week and he is somewhat stubborn so it might tale a bit of convincing but i will come away with rectal meds lol!

As for the SCD i have been reading about it for the past 2 days n it seems foolproof...any stats you can direct me to on amount of positive results? Seems like a good thing to do but i have just gone off to university and it would mean a major lifestyle change. The other thing is losing weight is another one of my concerns...i dont have much to lose after flaring 8 times in the past 2 years!
Posted 10/4/2010 6:45 AM (GMT 0)
Definitely keep us posted as to the outcome of your appointment.

Regarding the SCD, there are many posts on it...you should do a search. Stats would be subjective...some say it works, others don't. Yes, I would think it would be a major lifestyle change.

q
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