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meds vs surgery


Sun, March 16, 2014 2:19 PM

Hi.  wanted input from the experts, you the patients!!!  I've had uc for 14 years, maintained for the most part on asacol.  one little flare up 9 years ago when i went off on my own to get pregnant, and a very very short course of low dose prednisone and back to the normal asacol worked.  about 1.5 years ago i had a more severe flare up.  after playing around with uceris, and lower dose steroids and the suppositories and enemas, ended up on 60mg prednisone for 6 weeks, and weaned down very slowly over the next year, also switched to lialda, carafate, using suppositories.  had a fissure, thats fixed now too.  once down to a low dose on steroids, flared again.  not quit as bad as last year (no fissure, not up ALL night in bathroom, and not running to bathroom multiple times in every store), but definintely not normal.  had been bleeding with mucus, now up to 40 on steroids again and 6mp recently added to the litany of meds.  more having trouble going having real bowel movements ( when im flared can have bleeding mucus and uregncy, but also no REAL bowel movements due to the inflammation, so gets very bloaated and uncomfortable).  afraid im gonna end up with toxic megacolon.  anyway, now very tired with underlying nausea from i guess the 6mp, and gained lots of weight with the steroids.  i guess next step is biologics, but im tired of all of the meds and side effects. 

FPO mju
Joined Mar 16, 2014

Wed, April 16, 2014 6:44 AM

Where in NJ are you? I just went to the dr yesterday and asked him about my options b/c living like this - going to the bathroom a zillion times a day is not an option. I have a 3 1/2 year old - I'm afraid to do anything with her without another adult being around in case I have to run to the bathroom.  I feel like I'm going to lose my job b/c of my frequency in the bathroom.  It's horrible! I go to work and I come home.  I don't eat all day long b/c I'm afraid I'll  be in the bathroom more frequently, and when I get home I eat.  Morning are horrific- I'm in/out of the bathroom about 10 times before I can leave the house.  The dr. was mentioning humira yesterday but I'm scared that it would further destroy my immune system.  I mentioned the surgery and his response was we need to have a colonoscopy first.  I went armed with Dr. Fuhrman's book about fasting and he basically didn't hear a word I said.  I went to him b/c he was supposedly an IBD specialist - so not impressed with arrogance. 

FPO sandee
Joined Aug 27, 2013

Sun, March 16, 2014 2:29 PM

 Reply posted for mju.

cont.....to add i am a single mom, and not a young one!, of a 4 year old.  my husband was burned at work and died 4 days before she was born, and our first daughter died of a genetic disease when she was a year on home hospice. i have little to no home support.  my parents are deceased, my inlaws do not live nearby, and by siblings have jobs and kids so help for the most part for work purposes only.  due to the circumstances "taking care of myself" ie: eating healthy, exercising, doing anything aside from work, chores, playdates and stuff for and with my daughter , has taken a back seat for ohhhhh about 4.5 years now!! anyway, finding it hard to be good mom, and recently went perdiem at work due to the chronic flare up and the meds side effects.  due to this seriously considering j pouch surgery.  willing to travel 2 hours from home for great hospital/doc.  live in nj.  hearing mt sinai????  any good docs???? opinions??? experiences???? good ones would be great to hear too!  family will take her while im in hospital, but will eventually be just her and i again at home, soooo doable??? she knows her daddy is in heaven because he was sick and couldn't get better.  dont want her only family member and parent to be chronically illl now.  trying to make the best decision.  thanks in advance for your help.

FPO mju
Joined Mar 16, 2014

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