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2 yr flare

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Ulcerative Colitis
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Posted 1/21/2013 5:44 AM (GMT 0)
 I was diagnosed with severe ulcerative colitis and severe proctitis approximatley 2 Yrs ago was in hospital for 20 days the first time. Left hospital

with meds(asacol 400 mg 3 pills 3x a day) (mesalamine 4g enemas) (VSL3 4 Pills daily) and 60mg prednisone with a 2 week taper. 5 months later was back in hospital with another flare and C-Diff spent another 8 days there doctor changed Asacol to pentassa 500 mg 3x daily, and started me on remicade infusion every 6 weeks and has doubled the dosage of remicade in past 3 injections.

I  guees why i am writing this is to find some peoples opinion on my treatment it seems like i have never been in remission as people speak about on other posts it always seems like I am always in a flare. Went to hospital a month ago with bleeding and pain in my side so bad I couldnt stand up straight, back on prednisone 60 mg taper down every 2 weeks and a round of vancomycin. Actually started to have soft bowel movements which i have not seen in yrs

Talked with my GI 2 weeks ago he asked me when I would like to sit down and talk about removing colon.

Cant keep living like this but scared to have surgery,  I work construction and worried of losing job cant wrap my head around being able to keep working with a bag on my side or having to deal with J-pouch and operating heavy equipment just a note they dont ride like a cadillac :-)

Well thanks ahead of time for letting me vent   Ray

Posted 1/21/2013 6:39 AM (GMT 0)
Welcome to the forum.

Ive been on and off for years. Theres many things still that you can try. Check the resources tab.
Posted 1/21/2013 12:01 PM (GMT 0)
You can work and do anything you want with a j pouch. Don't be afraid of surgery if your UC is that severe. I had severe UC as well and was in a flare for 5 straight years not because I didn't try just about everything....nothing helped me. Surgery has given me my life back. I have talked to a lot of people who have a jpouch. I also have two family members with one. There are doctors, lawyers, construction workers, police men, firefighters, ect. Yes there is an adjustment period and its tough but its a small blip on the map compared with the rest of your life.

I'm sure there are things you haven't tried yet and I'm all for trying whatever you are willing to try but just know that surgery isn't the end of the world if it ever boils down to that. Its actually the beginning to get on with your life. Do some research on it and have a consult with a highly experienced surgeon just to get to know more about it. It's always good to be prepared and informed with facts. Best of luck to you. :)
Posted 1/21/2013 3:24 PM (GMT 0)
Hi Ray
There are lots of things you could try before deciding on an irreversible course of action - surgery.
The U C Resources contains many posts with such info as maintenance meds and natural alternatives.

In my experience, surgeons will suggest surgery. I had 3 opinions that agreed with my GI who suggested surgery last year. I decided against them and am very happy that I did.

In addition to the meds you started on, it might have been advisable to look at your diet. Most GIs will say that diet does not affect this disease. IMO, that's so wrong.
Most books I've read suggest at least eliminating lactose, gluten (wheat) and sugar. Just eliminating lactose and most gluten products has helped me.

Do you take probiotics? Do you keep track of and avoid foods that trigger bowel problems? Have you considered drinking slippery elm powder to soothe your digestive tract?

Hope this info is helpful. Best of luck. :-)
Posted 1/21/2013 5:49 PM (GMT 0)
Ya forgot to mention that went through all the holistic approach and tried SCD diet nothing changed I am now a diabetic so have to abide by that diet for minute there thought that was helping but no such luck ! I take VSL 3 probiotic 2 pills 2x a day and yes cut out all lactose. Forgot to mention I am constantly in pain on my left side in descending colon and rectum sometime so severe cant go with out pain meds. Thank you for taking time to reply to my post. Ray
Posted 1/21/2013 7:14 PM (GMT 0)
If you're having pain on the left side, it sounds like you could ask the doctor about using some stronger (cortisone) enemas at least for the short term. They come in liquid or foam varieties.
Topical application, not as dangerous as taking prednisone.

Have you looked at the Paleo diet? Check out the 11th post under the U C Resources thread.
Not sure but it might be OK with diabetics.
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