Hi I have not posted in a long time but am looking for input as to how others have made out in regards to pouch removal that is if any are still visiting this site. Have had many problems in the last few years have had my pouch since 1987. Now have constant bleeding have had 3 iron infusions in the last two months. My joints are inflamed especially my right hip very uncomfortable to walk bone density is going down I should mention that I have been on prednisone for the last 3 years as that is the only thing that will keep the inflammation of the inlet down enough to allow me to eat. Biopsies show idiopathic bowel disease as well as a granuloma. Was told I probably had C/D not U/C when I had the pouch made in 87. I have now reached the point where I will have it removed I am 65 and no longer have the will to deal all the problems that are coming up just to maintain the pouch. I'm sure I will have some issues with the ostomy but it I can get off the prednisone that will be one problem solved. I have to wait at least 4 months before the surgeon can do it as the waiting list for his time is quite long. I live on the east coast of Canada only 2 with his expertise in this province. He intends to take out the anus and of course sew it up he tells me this will be the area I will have problems with as I will have to stay on the steroids until after the procedure the healing will be slow. Does any one have any experience in this regard. I am worried about this of course as well as the possibility of picking up a super bug as they seem to be in most hospitals these days. Any feed back would be appreciated. Shawne
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This sounds like a terrible predictament for you! I won't go into the reasons you should not have been on prednisone for three years, as that is water under the bridge. I do have a suggestion for you to explore. How about getting an end ileostomy or diverting ileostomy right away, then do the pouch removal down the road after you have time to wean off of the prednisone and improve your overall health? I would give it a year or more. Being steroid dependent will also increase your infection risks, as you know, so another reason to be steroid free for the pouch removal.
You could possibly have the ostomy done by someone else whose schedule is not so backed up, as it is a much simpler surgery.
Good luck,
Jan 
thanks Jan I have thought about that but have read some postings from those who have left their pouches in and have had problems with discharge or inflammation and needed to go back and have them removed . My thought is to wait until I have surgery date and wean down on the pred until I am off a couple weeks before that date I am now at 12.5 started at 25 as I lived on ensure for 6 months before I started on the pred feel I can do it again. do you know at what dosage do your adrenals star to produce its own steroids I asked my family Dr she said she didn't have a clue, Shawne
Yes, you can still have problems by having a diverting ostomy and leaving the pouch in place, but you may be able to taper off the prednisone and deal with that without having to deal with your chronic pouch issues as much. Basically, it can buy you time.
http://www.nadf.us/adrenal-dis...renal-insufficiency/
You will need to get your prednisone below 5 mg before you know if your adrenals will be stimulated to produce cortisol, or if they are permanently suppressed. You cannot just taper off and have surgery a few weeks later. Surgery is a major trauma/stress to the body and you will need extra steroids in the perioperative period. They say that the adrenal recovery time is about equal to the time you were on the steroids. If you took them for a month, it takes a month to recover. I had an incisional hernia repair a full year after my colectomy And I was given extra steroids gor the surgery. I had been on prednisone for six months and tapered over a couple of months after my j-pouch surgery.
Being on prednisone for years is a big deal. I would ask for an endocrinologist referral for your taper and surgical plan. This is especially true since your primary doctor does not have a clue. I don't mean to scare you, but if you have adrenal suppression and it is not recognized, it can lead to vascular collapse during trauma.
Jan
hi jan have given much thought to your advice and although I believe you are correct in that I should do the ileo first and wait on the rest I intend to go ahead with the surgery as discussed with the surgeon I see my family Dr soon and will ask about seeing a endocrinologist in regards to a plan for the surgery and to deal with the taper. I just do not want to have two surgery,s and I am afraid of the unknown if I still have the inflammation in the pouch after the surgery I have only responded to prednisone so I will be in the same boat. I have a fistula as well which will continue to drain. I did read the arti le that you linked and will certainly bring up in the discussion what if my adrenal glands do not wake up. Thank you for taking the time to reply I do appreciate it. Shawne