I will try to keep this brief but include info for good answers. I am a 49 year African American Male. In Feb 1999 was diagnosed with Crohns; then given UC diagnose a year later. I’ve had my entire colon removed and although I’ve had very few bleeding episodes since then I’ve seen very little improvement in my lifestyle/quality of life. Depression, Constant search for clean and accessible restrooms, food that I can eat, and hunt for a good restrooms have consumed me since my surgery. My colorectal surgeon in Atlanta was absolutely and I believe the absolutely best surgeon in the country. But even she recommends that I go to the Mayo Clinic now. My first visit with them is early February.
For 14 years I had very mild flayers of UC; typically once every 18 to 24 months. Even then it would be two weeks of bleeding , mostly mild, some bloating with the obvious diarrhea and other symptoms. In 2012 I had to be hospitalized where they first started me on Remicade after being in the hospital for over a month. Started first two injections of Remicade but it made me very sick and I stopped it. I was given other Biologics but always has to be removed because I failed those medicines due to an allergic or adverse reactions.
A year later my Gastro in Atlanta Georgia started me on a blind study sponsored by Pfizer; four injections in the thigh once a month and it seemed to put me into remission. I never knew if I got the meds or not, could have been a placebo, years later I still don’t know. I would have a colonoscopy every six months and my Gastro was very pleased. In May 2015 my Gastro told me no signs of disease, I was in full remission, everything looks great. Less than a month later the pharmaceutical manufacturer for no obvious reason pulled the medicine from the market or why just wasn’t shared with me. I’ve since been told the medicine was essentially Entyvio (vedolizumab) but I’m not certain as it was a blind study and now all of a sudden everyone wants to be tight-lipped; yes, makes me a little suspicious.
Within six months of being removed from the study medication I ended up having to have my entire colon removed. Initially, the surgery was to be laparoscopic a simple three hour surgery. That turned out to be a 13-hour surgery because of the poor condition of my colon was in by the time of surgery. I was in the hospital from November 13, 2015 through April 2016 when my resection was finally completed. During my recovery I was chronically nauseous, unable to eat, anemic, in constant pain, issues managing pain meds, onstant issues with stoma bag fitting.
Since my reversal I have had a few bouts of pretty progressive pouchitus and cuffitious but no real bleeding up until recently. As a side note stress has always been the biggest aggravator for my condition. Now, I have also have ulcerative colitis flare again in the remaining 1 cm of my colon: and being referred to the Mayo Clinic for surgery. My biggest complaint today is outside of the new bleeding episodes is my quality-of-life is no better or improved; really just as bad. I still go to the bathroom 15 to 20 times per day, my diet isn’t the worse, and I think I do pretty well with what I eat. I try to stop eating by two to three in the afternoon so that everything is out of my system, which would/should give me a better chance to have a better, not complete, nights worth of sleep….doesnt always happen. I always feel tired, I always feel lethargic. Constant mind fog and I’m just trying to figure out if I made the right decision.
I have absolutely no desire to go back to the colostomy bag, I just don’t think my career (I travel for work, manage large staffs and give presentations) along with my two teenage children and any semblance of a regular or normal life can NEVER be achieved with the colostomy bag attached to me to the next however many years. I know normal for me must be redefined but its really hard to say that it was the best choice. Recognizing I needed surgery for survival, also recognizing the bag just was not the best option (although I know I was lucky enough to be able to get a Jpouch) I really feel… I don’t know what I really feel.
Has anyone experienced any of the same or similar issues and how have you addressed? I will be seen at the Mayo Clinic in Jacksonville Florida early February and I’m very anxious about that obviously with only 1 cm of Colin remaining there is little to no room for error in surgery if something goes wrong and I just don’t know if I have prepared myself emotionally yet to have to go through that again. My episodes with a colostomy bag even only for four months almost killed me. The thought of trying to exist, live, work with a colostomy bag attached to me put me into a depression deeper than I could have ever imagined even with my worst thoughts, the first time.
Thank God my mother came and became my nurse to help with the bag. I don’t believe I have what it takes to survive that again. On a side note I probably returned to work sooner than I needed too but after you exhaust all of your savings all of your resources all of your 401(k) two kids to feed and house and you got to eat; sometimes you got to make hard choices, right? Any constructive feedback would be welcome.
For 14 years I had very mild flayers of UC; typically once every 18 to 24 months. Even then it would be two weeks of bleeding , mostly mild, some bloating with the obvious diarrhea and other symptoms. In 2012 I had to be hospitalized where they first started me on Remicade after being in the hospital for over a month. Started first two injections of Remicade but it made me very sick and I stopped it. I was given other Biologics but always has to be removed because I failed those medicines due to an allergic or adverse reactions.
A year later my Gastro in Atlanta Georgia started me on a blind study sponsored by Pfizer; four injections in the thigh once a month and it seemed to put me into remission. I never knew if I got the meds or not, could have been a placebo, years later I still don’t know. I would have a colonoscopy every six months and my Gastro was very pleased. In May 2015 my Gastro told me no signs of disease, I was in full remission, everything looks great. Less than a month later the pharmaceutical manufacturer for no obvious reason pulled the medicine from the market or why just wasn’t shared with me. I’ve since been told the medicine was essentially Entyvio (vedolizumab) but I’m not certain as it was a blind study and now all of a sudden everyone wants to be tight-lipped; yes, makes me a little suspicious.
Within six months of being removed from the study medication I ended up having to have my entire colon removed. Initially, the surgery was to be laparoscopic a simple three hour surgery. That turned out to be a 13-hour surgery because of the poor condition of my colon was in by the time of surgery. I was in the hospital from November 13, 2015 through April 2016 when my resection was finally completed. During my recovery I was chronically nauseous, unable to eat, anemic, in constant pain, issues managing pain meds, onstant issues with stoma bag fitting.
Since my reversal I have had a few bouts of pretty progressive pouchitus and cuffitious but no real bleeding up until recently. As a side note stress has always been the biggest aggravator for my condition. Now, I have also have ulcerative colitis flare again in the remaining 1 cm of my colon: and being referred to the Mayo Clinic for surgery. My biggest complaint today is outside of the new bleeding episodes is my quality-of-life is no better or improved; really just as bad. I still go to the bathroom 15 to 20 times per day, my diet isn’t the worse, and I think I do pretty well with what I eat. I try to stop eating by two to three in the afternoon so that everything is out of my system, which would/should give me a better chance to have a better, not complete, nights worth of sleep….doesnt always happen. I always feel tired, I always feel lethargic. Constant mind fog and I’m just trying to figure out if I made the right decision.
I have absolutely no desire to go back to the colostomy bag, I just don’t think my career (I travel for work, manage large staffs and give presentations) along with my two teenage children and any semblance of a regular or normal life can NEVER be achieved with the colostomy bag attached to me to the next however many years. I know normal for me must be redefined but its really hard to say that it was the best choice. Recognizing I needed surgery for survival, also recognizing the bag just was not the best option (although I know I was lucky enough to be able to get a Jpouch) I really feel… I don’t know what I really feel.
Has anyone experienced any of the same or similar issues and how have you addressed? I will be seen at the Mayo Clinic in Jacksonville Florida early February and I’m very anxious about that obviously with only 1 cm of Colin remaining there is little to no room for error in surgery if something goes wrong and I just don’t know if I have prepared myself emotionally yet to have to go through that again. My episodes with a colostomy bag even only for four months almost killed me. The thought of trying to exist, live, work with a colostomy bag attached to me put me into a depression deeper than I could have ever imagined even with my worst thoughts, the first time.
Thank God my mother came and became my nurse to help with the bag. I don’t believe I have what it takes to survive that again. On a side note I probably returned to work sooner than I needed too but after you exhaust all of your savings all of your resources all of your 401(k) two kids to feed and house and you got to eat; sometimes you got to make hard choices, right? Any constructive feedback would be welcome.