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 polyps 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.Questions: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 gassy, 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!Edit/Update:Today marks 5 weeks since my ileostomy surgery. I 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 a total of 14 pounds. 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 guarantee, 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 a while. 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.

Seeking Advice On Transitioning From Colostomy To Ileostomy - Need Tips And Insights

kbd

Apr 19, 2017 8:38 pm

Honestabe,

Did you have a temporary ileostomy and then get your colostomy?

Glad to hear you are doing well! I will get my location for the stoma marked next week, then surgery on May 1st for ileostomy.

Best wishes.

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Hermit

Apr 19, 2017 10:54 pm

Hi there KBD. Diagnosed 3 years ago, rectal cancer with tumor. Same old procedure. Surgery, chemo etc. Had temp ileostomy for 8 months. No problems whatsoever. Wanted to keep it. Family, friends and surgeon said I should go back to normal. Mistake. Reconnection failed. Scar tissue created complete blockage where tumor was removed. 3 weeks with complete blockage. Had PEs etc. would bore you. Anyway, ileostomy hernia prolapsed. Blockage was still in colon and could not do a colonoscopy, so kill 2 birds with one stone. Did away with 6" stoma and removed blockage and went to permanent colostomy. Confusing! Sorry? My new looks good. With mesh, maybe it won't hernia. Tks.

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kbd

Apr 19, 2017 11:08 pm

Sorry to hear you went through all that, but it sounds like you are moving into a more stable situation with it now.

Surgeon asked me 6 years ago if I would want my surgery reversed in the future and I told him "no". I knew what Crohn's had done to me and I didn't want to go through it again. Good call as 6 years later my entire colon is being removed because of Crohn's.

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After Ostomy Surgery: 6 Ways To Settle Into A Routine

Hollister

Resuming your personal and work life after ostomy surgery can be challenging to adjust to a new life.

Learn ways to adjust to life after ostomy surgery.

Hermit

Apr 20, 2017 2:06 am

Evidently you don't have cancer. That's good. What an experience!

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kbd

Apr 20, 2017 2:23 pm

Yes, I was spared that. Sorry you have had to deal with it.

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How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hermit

Apr 20, 2017 2:36 pm

I have no intention of it coming back. Take numerous supplements, stopped using smokeless tobacco, changed my diet, drink Essiac tea, walk, the other diet consisting of cottage cheese, flaxseed oil, avocado everyday. Take a lot of curcumin and drink reverse osmosis water with real organic lemon all day. D3 etc!

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kbd

Apr 20, 2017 2:50 pm

Good stuff. D3 is a big one, I think. I notice a difference using it for the past year.

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Hermit

Apr 20, 2017 3:44 pm

Go to PubMed and research curcumin. Thousands of tests done on it! Doctors use this site.

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GraphX12

Apr 20, 2017 10:34 pm

Hi honestable,

What was your trick for kicking the habit?

I have used smokeless tobacco for 40 years. I was diagnosed with ulcerative colitis (UC) some 25 years ago and a few years thereafter went to the Mayo Clinic for consultation. The doctor there saw my history and asked if I had tried to quit tobacco recently. (I hadn't) He told me that their research showed a high rate of UC in people who have quit smoking and a low rate in people who continue to smoke. At that time, their studies couldn't clarify what the link was with tobacco/nicotine and lower rates of UC.

He also told me that as a doctor he ethically can't tell me not to quit, but off the record he would advise not to.

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Hermit

Apr 20, 2017 10:51 pm

What I am about to tell you, I told two nurses today at the hospital before being discharged. In 2014, I was diagnosed with rectal cancer. I couldn't even spell it? What a shock. Anyway, my first surgeon read on my charts that I used Copenhagen for 50 years. He continued to chew me out and said today was my last time. I told him, this is harder to get off than heroin. On the way home, I thought I could trick my brain. Use a regular can and put in either organic coconut or almond flour. Of course, it takes some willpower, but it works. The first thing in the morning and the last thing before bed! I have not used the real thing in 3 years! Good luck! Still in remission.

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Tips For Managing An Ostomy At School

Hollister

As a student, there are easy ways you can prepare ahead and manage an ostomy while you are at school.

Read answers to frequently asked questions about how to change your pouch and participate in activities.

GraphX12

Apr 21, 2017 4:41 am

May have to look into this. No patch? No gum? ...Wow! Congratulations! (I agree with your heroin analogy).

I am week 3 post-op following hernia surgery #2. Hoping this one will hold.

My best to you, honestable!

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kbd

Jun 05, 2017 3:48 pm

Note: I have updated the first post in this thread to share my experience after 5 weeks with the ileostomy in case anyone is interested in my experience so far with the ileostomy compared to the colostomy.

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freedancer

Aug 17, 2018 6:45 am

Yep, food goes through you faster for sure. There might be things you won't be able to eat but through experimentation, you will learn. Some people lose weight and some gain. I lost a lot in my legs and bottom but my tummy didn't lose a lot, mostly because it had the crap kicked out of it with two cesarean sections, a hysterectomy, and then two emergency bowel surgeries, the initial trauma surgery in June 2017 and the redo because of a stricture in February 2018. So poor tummy has some pretty significant scars! You will have to empty more and I think the gas issue is less than the other but foods can give you gas. You just learn to burp the bag and if you want to torture the grandkids....ha! ha!...do it when they aren't looking and blame it on the dog if you have one. Anyway, you will get used to it. Good luck to you! Pamela

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Seeking Advice on Transitioning from Colostomy to Ileostomy - Need Tips and Insights

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

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