That’s very inspiring, thank you for sharing. Dealing with the ileostomy gets easier everyday but also is extremely hard to imagine having forever. I’m going in for another colonoscopy here in a month or so to see if reversal is possible. My fear with the reversal is the reoccurrence of my horrible UC symptoms, and I’ve always wondered if the gear has caused any of this. You’re body weight and powerlifting numbers are very impressive even for someone without these issues. Thanks again for sharingProud owner of a J pouch. I started using when had my last surgery to reverse my ileostomy. I recovered from my surgeries faster than any patient my surgeon ever had and I was very open with him about my usage.(which at the time equated to trt)
For perspective at the moment was admitted during a Uc flare prior to my Colectomy I weighed 150 lbs (down about 40 lbs from my healthy weight) Now , about 4 years later I walk around between 230-250 and have managed to build a respectable powerlifting total >1900 lbs . Throughout I have remained open with my doctors and they monitor my bloodwork and the integrity of my J pouch yearly. Aside from an obstruction 2 years ago ( a result of Scar tissue) I have remained healthy and happy. While being able to pursue personal goals in strength sports.
So while yes UC and Chrons are awful there are some people out there who refused to quit and chose to live life on their own terms .
Hopefully this helps you out a bit , best of luck with your IBD.
I had an emergency ileostomy surgery this last March as a result of my colon bursting. Since March I have been medication free, however the two years prior to surgery I was on Humira and 40mg/day of prednisone. My GI doctor prescribed the Humira but was unaware of the prednisone I stupidly was adding myself. This as I’m sure you know caused a number of issues. Currently being without Humira or prednisone I feel my body is really rebounding and I have all kinds of inflammation. I’m not very hopeful they’ll be able to reverse my ileostomy because of this at least for now, however I would rather be med free with the ileostomy than have to be full of corticosteroids and biologics to function. The prednisone was extremely catabolic and if I hadn’t been blasting and cruising I think I would have lost a ton of weight. I’m back up to 230 after my surgery and hope to gain back another 20 or so.What kind of medications are they trying for your UC? I would assume the usual prednisone ect ect. Any Biologics like Humira or Remicade?
Wow that’s one hell of a story man. They briefly informed me on the J pouch but I haven’t done additional research yet because of the extensive recovery and surgieries involved as you described. After having this damn bag for almost a year now I’m fed up and ready to consider the next step. Man that prednisone is the devil isn’t it? I’ve had issues with opioids over the years so I try to stay away when possible but the UC has driven me back a few times. So the 3 surgeries and recovery takes about a year until you can utilize the J pouch? It sounds like a damn good but I would need to really prepare and be ready for the absence from work. Did you utilize state disability for the surgery and recovery time? If not how did you manage financially?I had my surgery as a result of toxic megacolon ( I was full of prednisone , mesalamine, opioids, and Humira as well). I went into the hospital with a flare and 2 days later I was on a table. You ever consider the J pouch surgery as an option ? Your entire large intestine and rectum will be removed , but they create an internal pouch with your small intestine and when it’s all said and done you don’t have a bag and go to the bathroom like normal. It takes 3 surgeries to get the j pouch and you have the ileostomy for about a year and the after the last surgery they reconnect the plumbing and since UC only effects the large bowel you will be disease free.
Hey man thank you very much for sharing all of this information. I’ve really been trying to play this scenario out in my head and it’s a huge help to hear your experience.I went on state assistance for the medical coverage. I was able to manage financially after the initial surgery by training clients that I had developed close relationships with. They understood my situation and found ways to meet me whenever I felt physically up to it. The recovery from surgery #1 took me about 10 weeks until I could get back into work full swing. Recoveries from surgeries 2 and 3 were significantly shorter and I was able to return to work in as little as 2-3 weeks( by that time I was working for a general contractor building houses) I swear the physical activity helped my recovery. In that time I was able to purchase healthcare and was lucky that the coverage I selected paid for most of my surgeries and procedures .
The last surgery was a breeze and the only thing I had to deal with was learning how to use the bathroom again but after two weeks I went back to the gym and in a short few weeks after that landed a great job with benefits that covered the obstruction surgery.
I would say that I was extremely fortunate to be in a city and state where the level of care available is some of the best in the country and the medical assistance available essentially covered the cost of everything .
All that I’m left to fund now is the routine visits , bloodwork and scopes (after my healthcare pays a portion)