My name is Jill. What I thought was runners trots during a half marathon benefit for special needs children turned out to be UC. I was in my early 30′s (now 41). I’ve been through all the meds and at mayo clinic now by gastro referral. Cooking, gardening, fitness are hobbies. I just married the most wonderful man this year, have 3 children and 3 grandbabies.
bloating hair loss
mucus recently need glasses to read
back pain constipation/ the big D
sporadicjoint pain 2-20 trips to the porc bus per day
Hello fellow UC’rs! I have been creeping on this site for awhile and have to say you all are awesome! Adam your book has given me the courage to be more open about what is going on with my UC relationship. Thank you.
My gastro has finally decided that she can’t do anymore for me and has referred me to Mayo clinic. I met with the doctors the first day and they are already talked surgery or possibly a clinical trial in Chicago after reviewing my history. I live in Kansas so the trial prol a no go but agreed to some testing to determine exactly what my UC is up to and if there is a possible Crohn’s, bacterial issue. They have tested my sphincter muscle, stool, ct with barium and iodine flush ( iodine flush howdy the fire!), colonoscopy with several biopsies within 24 hours. Tomorrow I meet again with the Dr.’s for the recommended treatment.
I have never seriously thought about surgery until the other day. They make it sound like it will take all the UC away with only 6-8 bm a day with a couple of them at night. The surgery is a 92% success rate. I’m not taking any meds and relatively ‘healthy’ they say. I am a good candidate. hmmm. good candidate yes, healthy? I wouldn’t be here if I was healthy. Pouchitis and obstruction may be complications but I can go back to the bag if the j pouch isn’t working for me. hmmm. Is my colon that bad?
Would I be trading this so called mild non responsive UC for a new set of issues?
My relationship with UC started 2003ish. I thought I had runners trot but they didn’t end after the race. I wished I had a skirt I could have put over my head for privacy as the other runners passed by. You know like the pictures in national geographic of the women using the trench. Anyway, my doctor referred me to gastro right away. Gastro couldn’t get me in for a month or so. She did a flex sig right there in the office with my mom right there no anesthetic, was given short dose of pred and sulfasalazine. Allergy developed in a few months so another flex sig. She said inflammation was down and tried colazal/canasa. Didn’t help so colazal/proctofoam. didn’t help. I asked about diet, naturopathic alternatives as my former brother in law was a naturopatic physician. She said it helps but wont kick or hold remission. I was referred to a colorectal specialist. He got pissed of at my gastro and upped the colozal and then the high doses of predisone started.
I continued to run and lift weights with my buds. They were very patient with me as I ran to the bushes on our early morning runs. Somehow the makers diet was presented to me and I tried but still no remission. Prednisone made my symptoms tolerable but never remission. When I tapered my symptoms super uber worsened. Finally the remicade. It was going to kick this. NOT! but it did get me off the steriods after 8 months or so also had 3 peri-rectal surgeries before my doctor believed it was not working. Then came humira. Oh those lovely shots. It kicked UC alright and I thought- whew this is worth it. Then came the rash under my sportsbra….hmmm…I must have grabbed an old bra so I threw it away and sprayed tinactin on the rash…It didn’t go away and spead to my scalp and groin… long story short it was the humira and I got my second auto immune disease- pustular psoriasis.. The pustules were filled with staph and covered 90% of my body…I was put on methatrexate, steriod creams and oils for about 10 months before it went away…
My UC was in remission….no meds no diet for 2-3 years until july/august of 2011…started to notice changes and called the gastro right away. She started off the same regiment colazal, canasa, methatrexate. My back went out while putting my dog on a leash due to so much inflammation! Ended up in the hospital on April fools day. lol. Another flex sig. dc methatrexate and started evil pred. and the Imuran talk. I got pissed and while layed out with my back I found this website and scd lifestyle. Elaine made so much sense. I did the intro diet in May and tapered myself off pred by june 1. I tried to tell my gastro how much better I was feeling symptoms were improving on scd. She said it was similar to fodmaps and said it wouldn’t help. I needed to find a med that will work. Imuran is our last resort and if this doesn’t work she would refer me to a clinic where other ‘exotic’ treatments are available..YIPPEE!!! I wanted another opinion. But you know insurance, I needed a referral. So I did the Imuran. After 3 months of feeling like total crap, back pain, thinning hair, dizzy spells, bruising, rashes, unable to run now for 5 months no remission and abnormal blood results I got my referral to Mayo….. so here I am today.
Would it be better to do scd with milder symptoms or surgery?
Where I’d like to be in 1 year:
loving life In remission, not looking for the next restroom, working out, no back pain or dizzy spells.
Sulfasalazine- allerigic, eyes and skin turned yellow- scared my children
rowasa- couldn’t hold it in long enough
canasa, proctofoam-helped make UC tolerable for a brief time
colozal, lialda- didn’t work
remicade-didn’t work for remission, made my back stiff, helped me get off pred.
Humira- kicked UC- gave me pustular psoriasis
Imuran- made me feel like I had the flu and messed my blood up with no remission
prednisone- one evil drug
methatrexate- worked the first time
The makers diet – didn’t work
hyoscomine- stops the big D
lomotil- don’t try when heading out on a run, makes you feel like you have cinder blocks strapped to you feet. lol
written by Jill
submitted in the colitis venting area