Last updated: September 2020
Hi I've had intestinal issues for over 10 years and am at my witts end. My story is complicated by other serious health issues, including HepC, a liver transplant and a subsequent stroke, which paralyzed me on my left side (I have regained SOME function but still cannot walk).
My symptoms mimic UC or IBD (your choice). Inflammation and ulceration of intestines. Feelings of fullness and having to go right after going. Sickness, pain and pressure. I can only eat small amounts.
Over the past 10 years I've seen numerous doctors and been hospitalized several times JUST for this issue, but all have frustrated me badly. All they do is "Slow-Walk" me through the same Hospital/Lab tests....colonoscopies, endoscopies, Lab work. After MONTHS of inconvenience, when they fail to find any Cancer or polyps, they dismiss me..."you're fine...you're fine"...this is intolerable. I have repeated this process many times in the last decade, and I refuse to subject myself to it anymore.
I suffer pain, pressure and sickness every day.
When I need to Go, the need is SO URGENT I can barely make it... and if I'm outside or away from home, I WON'T make it. My last colonoscopy showed 10 ulcerations in my colon (18 months ago). As usual, NO follow-up and the usual: "You're fine..you're fine...They're only little ones".
I have gone through every doctor I'm inclined to see in my city, and now I "Get It": They're all afraid to touch me, or do anything for me...they are afraid of Liability if anything happens as a result of anything they might do. When I give them all the details of my misery, they all look at me like I'm crazy (even though I express myself well and endeavor to keep it short). So, I have an appointment with my Transplant doctor in a distant city. She is the ONLY ONE I trust anymore. And although she's in Hepatology/Liver Transplant, I'm counting on her to help.
WHAT I WANT: is TREATMENT.
Can someone share with me please, their idea of an effective way to present my request? Can anyone share please, WHICH drug helped them? IS there anything which will help me with the Inflammation and the Ulcerations which bedevil me?
[P.S.: I suspect my problem is being caused by my immune system...Familial tendency toward that.]
Stelara? Humira? Anything? Pill form, vs. Infusion?
Any help anyone could give me would be greatly appreciated....RL
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