I need serious help.
I had a Total Colectomy, with Rectum Removal in December 2017. This was followed by a UC diagnosis in October 2016.
After a combination of UC flare, C. Diff, and toxic Megacolon they decided to take it all out and give me an ileostomy.
I went through the 3 step process to have my J pouch.
I’m One Year and 8 months out from takedown. My life has been hell since the Takedown. I have had a very small leak at my connection site since the operation that doesn’t seem to be healing.
I attend a Hospital in the US that is heavily funded and is a “learning hospital”
The doctors/students are qualified however they cycle every three months, and I basically see a new doctor each visit which I’m sure you can imagine is frustrating.
at this point we have tried so many meds
small list
40mg prednisone for 7 months
5 months Ciproflaxin & Flagyl
(My body can’t handle these any more I am now supplementing with VSL 3.
Humira Weekly for 8 months
Mesalamine Rectal Suspension Enemas, these help however my anus is so inflamed and soar it’s hard to take this one regularly. I tried oral Mesalamine with no results and Canasa (Mesalamine Suppositories).
immodium, bentyl, pantroprozole,
Many more that I can’t remember.
on my last visit I told them I was taking 15 medications which is unreasonable and they agreed. I am now tapering off some meds and have been tapered off prednisone for over a week.
my pouch is everywhere
one day I have solid stools, the next I have pure liquid spraying out. One day I feel okay, the next I have excruciating abdominal pain. Some days I go over twenty times, other days I’m so backed up that it hurts to push out even a pea sized stool. I have slight blood sometimes.
I have been diagnosed with UC, Chrons, Pouchitis, & I have had a UC specialist tell me she thinks I have none of this and the leak is causing inflammation. The surgeon I see disagrees and is convinced it’s chrons .
I was admitted 4 times this year and a heavy dose of intravenous cipro/Flagyl and Solumedrol seems to put my flares to a hault until I am sent home, then slowly back to this..
Im in my twenties, my family has given up on me entirely, my lovers always leave me when I’m at my worst, I am nearly ready to give up but I won’t because I know someone reading this has been through worse.
I keep a positive mindset but I need help, I cannot eat ANYTHING without causing severe inflammation. I am very conscious of my eating and know what to avoid
Ensures/Boost are keeping me alive and I have stopped drinking those as I have no appetite. I’ve gone on a strict vegan diet before, no added sugar or sweeteners, no dairy, no gluten, low fodmap, you name it I’ve tried it.
I see nutrionalists, GI and liver specialists, UC specialists, Suegeons, Primary Care, have been to other hospitals. NO ONE, has been able to figure it out. I have no health insurance by the way, which is not an issue currently other than keeping bf me from going elsewhere.
It hurts tremendously to even attempt to sit on the toilet and push anything out. None of this is new I just cannot handle it anymore, I need serious help.
When I go to the ER it’s the same routine.
After 5-6 hours of waiting in pain they X-Ray me or do a CT and the ER doctors automatically think “blockage” when in reality it’s just an inflamed pouch that they probably haven’t seen before. I am then put on a no food or drink order (the last one lasted 7 full days, yes one week of no eating while in the hospital. I was living off intravenous fluids, I was literally hallucinating.) Then they wait for me to have lessening symptoms while pumping me with Morphine and Norcos (Yes, Consipation.. and I do not take these when I’m not I amnot in the hospital) and discharge me.
I am Suffering, I’ve been denied disability & I can hardly cook for myself . I live in fear of blockage everyday as it is a frequent problem.
I need some motivation, tips, tricks, anything.
I wrote this as I lay in a hot bath which I take several ( at least 5 ) a day which is the only relief I get and my bowels tend to release while I’m bathing, sometimes it’s the only way I can go. I’m stuck at home 90% of the time. I am so tired and can’t be away from my bathroom.
Now, my major problem.
Gas. So. Much. Gas.
Im talking gut wrenching, painful, gas explosions inside of my intestines and pouch. My partner and mother can hear it from across the room when my stomach starts “gurgling or rumbling”
The ONLY relief I get is laying down, going on all fours and letting it rip... For a very long time.
Sometimes I will pass gas over 200 times in one bathroom visit in this position. I have been stuck in this position passing gas for nearly two hours before. My knees get week, I fall to the floor, my anus feels as if glass is being dragged against it. I didn’t know the human body could hold so much gas especially without a colon and rectum.
My body cannot take much more.
I need help that I can’t get from the doctors.
Thank you for reading this, I really need any help I can get.