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

Hi Lady ... We are practically neighbors as I am in the southeast valley. I noticed you said you go through about 10 bags a week and I was wondering ... you are using a drainable bag aren't you? Just curious.

Paula

Hi GraphX12 ... I am sure you already know all of this, but have you tried a waffle cushion for sitting? I had everything removed from the small intestine too and the waffle cushion was a blessing ... I have not had any issues from about 6 weeks out from my surgery so I definitely am fortunate! Also, if you are sore and need something soothing ... try Preparation H wipes with Aloe! I still use those occasionally just for a clean feeling during the day ... just a thought!

Paula

GggraphX12, thanks for sharing your experience!

I also use an electric razor for hair removal and find it useful.

I have worried about hernias from the start as I have a pot belly and weight goes right to my middle. I have luckily avoided hernias. Sorry to hear you have to deal with that. I wear an ostomy belt religiously, a 4" belt and even sleep with it on. I also have a 6" belt that I wear occasionally if I am going to be actively doing something that involves any lifting.

Sorry to hear that about your muscle mass loss. I know that in serious weight loss eventually the body starts on the muscles when the fat is gone.

Thanks again for sharing your experience. I had not thought about mashed baked potatoes and such to thicken the output.

Good luck to you too!

Hi Paula,

I was given a very nice cushion immediately after my 1st surgery that has been by my side ever since. Couldn't have gotten by without it. Actually, these days, I generally keep it in my car for longer drives. The pain "down there" has generally resolved but occasionally creeps up from time to time. Thanks for the tips!

Best to you!

So glad you have been spared hernia trouble, KBD.

I also have hernia belts of various widths and fabrics, actually 4 of them. Still got the hernias. My 1st one required emergency surgery as 8 inches of my small intestine had pushed out through the "hole" and got kinked. I have to say the pain was the worst I have ever experienced. Passed out on the floor and woke up in the emergency room. The surgeon told me once he got in there the hole was big enough to put his fist through. I was extremely lucky that portion of the small intestine didn't die.

This 2nd hernia surgery was not emergency, but rather better to fix it now than later. It had grown to the size of a grapefruit and my surgeon told me it was a matter of time until the same thing would happen as the previous one. Mesh was used this time to try to reinforce the area so hopefully this will help to prevent further ones. To say that I will be extremely cautious from here on out is an understatement!

Best of luck to you, KBD!

No problem, GraphX12 -- I know my waffle cushion has been a tried and true friend over this past 1-1/2 years! I think many people make the mistake of getting a donut cushion and that is about the worst thing you can do. I have had no issues on long flights or anything else, so I am, again, quite fortunate! Take care!

Morning KBD... I have thought about getting a hernia belt and did not know if I should get the 4" or 6". Could you give me the info on them? I know they are generally purchased through Nu-Hope or through my supplier for my ostomy supplies. I would love to ramp up my workout (for lack of a better word as it is only walking)... but did not want to risk a hernia. In fact, I do not even know what a hernia would feel like or look like, the latter being a bulge? Thanks for the info!

Paula

GraphX12, sadly, some people are prone to hernias. I worked with a lady years ago, she did not have an ostomy, but she constantly had hernias needing operations.

Sorry you have struggled with hernias and I know the ostomy cannot be helping that situation :(

Best wishes.

Paula,

You could just get a 1" ostomy belt for general use. Perhaps a 4" belt for exercise and workouts. Depending on your insurance, the belts are covered. My 4-6 inch belts are Nu-Hope. For the 4 and 6 inch belts, you need to order them according to your appliance size opening. For instance, I think mine is a 2 and 1/4 inch diameter opening.

I have Crohn's and an ileostomy. Ileostomies dry you out, Crohn's is throughout your small intestine too so getting rid of your entire bowel will not matter as far as Crohn's goes. Your bowel siphons out the water from your waste, you need that. If I had it to do over again I would have kept as much of my colon as I could. I am always dehydrated which makes me dizzy and sick to my stomach. I have no bowel. My food does not digest well and I can only take gummy or chewable vitamins as the other type seem to pass right through me. With my ileostomy I get a lot of blockages as the small intestine is much smaller than a large intestine and when they sew the end of it to the front of your stomach the scar tissue constricts the opening even more. Since the food does not digest all the way the acid in the liquid output corrodes your skin and gives you a diaper rash-like wound that can ulcerate and make painful bleeding holes in your stomach skin. I have to watch what I eat, no almonds, coconut, watch out for popcorn. Potato skins and other fruit skins block your gut, I can't eat many raw veggies, too much fiber blocks your gut. When I get a blockage I drink Phillips Milk of Magnesia and water, a lot of water. I have an ileostomy because med students cut holes in my bowel taking biopsy pieces during a colonoscopy. The holes leaked sewage into my body cavity and I went septic. That was 7 years ago. I don't know what it is like to have a colostomy but an ileostomy has affected my whole life. I can do almost nothing that I did before the surgery. Be super careful of hernias, don't lift anything. It will hurt you if you do. I get vitamin deficient because I don't digest my food, I am so exhausted always and my gut stump always bleeds. My gut stump keeps trying to tear free of my stomach I believe because of the corrosive acids eating away at it. If you have a choice to keep any part of your bowel, keep it. I believe God put us together the way we are for a pretty good reason. We need all of our body parts, they all do a certain job. Good luck to you.

Hi Paula,

Just to add to Kbd's info: Seeing that you live in Arizona, you may want to check out the cooler fabric belts Nu-Hope has to offer. In my experience, the belts can get a little warm. The cooler fabric ones are more breathable. Good luck!

Sorchia,

Sorry to hear you have an ileostomy due to such reasons. Thank you for sharing your experience and offering ideas. I'm not sure if every last bit of my colon will be removed, but since they found polyps further back as well as a stricture, it does not sound like much, if any, will be left. I take several meds that dry me out now due to asthma and allergies, so I am concerned about all the feedback about dehydration and electrolyte problems. I drink fluids all day the way it is.

Thanks again for your thoughts.

Hi, just as Paula said, I think your only major issue is the medication. Anything you swallow will go through very quickly, so make sure to work out a plan with your doctor(s) about the adjustments. You will probably need supplements too.

Very best wishes and don't be worried. Check out the recommendation regarding diet and maybe start changing now; it makes it easier.

Thanks Shona!

Yes, I figure I will have to use regular Metformin and drop the extended release pill. I take chewable acidophilus, chewable multivitamins, and chewable Vitamin C. And will try the Powerade Zero that Paula mentioned. Am I missing anything on the supplement front? Should I plan on a low residue diet?

Thanks for your thoughts!

Laying in hospital bed typing this. Went from ileostomy to colostomy yesterday. Starting to pass gas. Of course, this is what we were waiting on. Let me have breakfast. Waiting on surgeon making his rounds. Very little pain. All seems good! Steve

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.

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.

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.

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

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

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!

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

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

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.

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.

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!

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.

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