Hello all. I am 59 years old and have had Crohns for 39 years now. Had an Illeostomy 15 years ago for 8 years then had it removed which I then had to have again due to Diverticulosos (sp?) Now I have had a colostomy for 6 years. In a nutshell that's all of it however after enduring pain which at times was too much being told I needed an Illy was a no brainer. Sexually not very attractive but..........................OMG. No pain. I got my life back. I used to joke that as as a bathroom designer I DESIGN bathrooms so know pretty much all about every inch of that room as anyone with our ailment but did NOT want to be in them ALL the time. So................after the illy was installed I did not have to panic about a bathroom location as I packed it with me.
I was able to eat almost anything with NO PAIN and I got back to designing kitchens and baths for my clients. This lasted for about 8 years at which time we thought switching back to "NORMAL" was possible which it was as there was enough bowel left to reconnect. WELL........................that didn't go too well. The pain and 25 trips to the bathroom again reminded me about all that I had endured already. The pain was unbelievable and after 8 weeks they went back in and found Diverticu whatever. I told them before surgery to see what the pain was to give me back the pouch which they were shocked at. I said I had a life with a pouch and wanted my life back.
NOW.................... the colostomy is 6 years post op I am experiencing pain again. Seems I have 23cm of inflamed bowel again. I have been on a variety of meds through the years and quite frankly did not think that any of them did much good. Prednisone was the drug that worked to get things straightened out but of course is WAAAYYY to powerful and damaging long term. Pot has been a decent relief my whole life but even that isn't working anymore.
So.................is there anybody out there with a similar situation at all? What foods do you eat? What drug seems to work for you? Do you find the doctors frustrating? Do some of you seem in control with a specific diet? If so what is it? Needing a little advise here as now my SECOND specialist is retiring and not sure who to go to now. Accupuncture work for anybody? Rickypoo. that was the nickname my Mom gave me at 2 years old. How did she know I would be so in tune with kitchens and bathrooms? WIERD EH?
I was able to eat almost anything with NO PAIN and I got back to designing kitchens and baths for my clients. This lasted for about 8 years at which time we thought switching back to "NORMAL" was possible which it was as there was enough bowel left to reconnect. WELL........................that didn't go too well. The pain and 25 trips to the bathroom again reminded me about all that I had endured already. The pain was unbelievable and after 8 weeks they went back in and found Diverticu whatever. I told them before surgery to see what the pain was to give me back the pouch which they were shocked at. I said I had a life with a pouch and wanted my life back.
NOW.................... the colostomy is 6 years post op I am experiencing pain again. Seems I have 23cm of inflamed bowel again. I have been on a variety of meds through the years and quite frankly did not think that any of them did much good. Prednisone was the drug that worked to get things straightened out but of course is WAAAYYY to powerful and damaging long term. Pot has been a decent relief my whole life but even that isn't working anymore.
So.................is there anybody out there with a similar situation at all? What foods do you eat? What drug seems to work for you? Do you find the doctors frustrating? Do some of you seem in control with a specific diet? If so what is it? Needing a little advise here as now my SECOND specialist is retiring and not sure who to go to now. Accupuncture work for anybody? Rickypoo. that was the nickname my Mom gave me at 2 years old. How did she know I would be so in tune with kitchens and bathrooms? WIERD EH?
