Looking for feedback from those who have ileostomies and especially anyone who had a colostomy that was changed to an ileostomy.
A little over 6 years ago I got a permanent colostomy. But now my gastro doctor said because of a bad stricture and polops in my bowel he is recommending to my colon surgeon that it be made into an ileostomy with most of my bowel removed--right now I have about 40% of my bowel left.
Anything in particular, any suggestions or ideas you have that will help me adjust to an ileostomy?
In particular I also want to know:
Am I likely to lose weight with more of my bowel removed?
Will the ileostomy be less noisy, less gassey, than the colostomy?
Will I have trouble with medication, pills, not fully digesting with less bowel?
Will I have more skin issues, leaking and such with the ileostomy?
I have Crohn's Disease with no signs of the disease in my small bowel. By getting rid of most of my large bowel am I less likely to have Crohn's issues in the future?
Anything else I should know?
Much thanks for your thoughts and feedback!
Today marks 5 weeks since my ileostomy surgery. Will answer a few of my own questions from above in case anyone is interested in my experience now with both a colostomy and an ileostomy.
Weight loss: I lost 7 pounds during my first week after surgery and an additional 7 pounds in the two weeks following for 14 pounds total. Most of this was due to terrible nausea after my surgery. But even now at 5 weeks I am still 12 pounds lighter after my surgery. I don't expect to gain more than a couple more pounds because my gut is more sensitive to what I eat now than when I had the colostomy.
Ileostomy noise: at times it has been worse than with the colostomy. I think it is more touchy about certain foods now, but when I am very careful about what I eat I would say it does not create more noise.
Medication: timed release medications are definitely out. Everything moves through my system much faster because of no colon.
Length of wear time for appliance: I can go 5 days with some leaking next to the stoma. 4 days is probably ideal. I went 5 days with the colostomy with a tiny amount of leaking onto the skin next to the stoma. So I'm not talking about leaking outside of the wafer. Probably the ileostomy gets about 1 day less wear overall compared to the colostomy.
Crohn's Disease: the surgeon and I are hopeful that the Crohn's Disease will no longer plague me since scans of my small bowel showed no damage and the Crohn's appeared limited to the large bowel. There is no guarrantee and time will tell.
Other observations: on the positive side the bag is much easier to empty/clean with the watery output compared to the colostomy. Yet I'm emptying the bag almost twice as much. Learning to adjust to my bag being on my left side compared to the right side with my colostomy has been a big adjustment, bigger than I would have imagined. During my first week home I caught my stoma on a door latch as I was leaving a room and had some serious bleeding for awhile. I'm still adjusting to the stoma being on the opposite side. Yet being right handed I think it will be an advantage having the stoma on the left. Water/Fluids is a huge deal. With the colostomy I was drinking lots of fluids, but drinking much more now and constantly waking up being dried out at night and having to keep at least two bottles of water by my bed. I have also noticed that medications can get more concentrated in your system if you are not drinking enough water. Hydration is one of the biggest issues so far. My gut seems more sensitive to foods now, and nausea still creeps up on me at times. That may disappear over time or it may be a symptom of a more sensitive gut.
Ileostomy better or worse than a Colostomy?
In my particular case the ileostomy will prove much better if it keeps me free of Crohn's. Yet there is no doubt you are generally better off with a colostomy than an ileostomy. My salt levels have gotten very low, and I had to have a magnesium infusion. I begin the day now drinking gatorade. Loss of electrolytes is a huge deal with the ileostomy. I never worried about that with the colostomy. I wore an ostomy belt with my colostomy. With the ileostomy I have no idea how one can avoid wearing an ostomy belt. That mostly fluid output from an ileostomy puts huge pressure on the skin and area around the ostomy. Of course we have no choice in whether we get an ileostomy or colostomy, but there are notable differences.
Last edited by kbd on Mon Jun 05, 2017 10:41 am; edited 1 time in total