Seeking Advice - Switching to Ileostomy for Relief from Bloating and Discomfort

In 2008, at the age of 20, I inherited a neurological disorder that caused 15 daily BMs and a constant fecal smell. Other than nerve problems of the internal sphincter, my health and fitness were excellent.

In July 2013, I got an elective sigmoid colostomy. I still smell like feces and have been severely bloated since surgery. I'm very lean and barely eating, but I have a huge stomach most of the time. It's extremely uncomfortable, to the point where I can barely sleep at night. I irrigate twice a day just to get some relief from the pressure. At this point, I'm willing to do anything to end the intense discomfort, which is so bad I almost can't sit still.

The surgeon who did the ostomy got an x-ray and said that there was no torsion/obstruction, and that constipation is common with sigmoids. I was never constipated before the ostomy, and sitz marker tests show normal motility. But basically, at this point, there's no way I can handle solid output, and can't stand the 24-hour transit time from meal to output.

I'm seriously considering going to the Mayo Clinic for a second opinion and to discuss switching to an ascending colostomy or ileo, to get liquid output. Some sources say ileos are preferable because the smaller size makes liquid easier to manage, but ascending colos are much less prone to blockages.

Can anyone recommend one or the other? Has anyone gone from left-side colo to right-side or ileo? Are any of you ileostomates severely bloated?

Please let me know. I need the pain to end.

Hi J. I'm not qualified to advise you, but there are a few things I learned from being an ostomate and communicating with so many knowledgeable folks on this forum. There's no doubt you need the pain to end, and there's no reason to have a constant odor. A second opinion would be my first suggestion. Please do this ASAP and let us know where you're going from here.

Good luck,

Mike

Hi Jpeters,

I've had my ileostomy for 50 years. I recommend an ileostomy over a colostomy any day. I have no odor whatsoever (except with certain fish or asparagus). The reason is my transit time is about 4 hours. All of us are different but the transit time is much shorter with only the 21 feet or so of small bowel in the case of ileostomy surgery. Second benefit is the average stoma for ileostomy varies from about 3/4 inch diameter to 1 1/2 or so with a protrusion of maybe 1/2 to 1 inch. My stoma is 1 1/4 inch diameter and protrusion 3/4". Colostomy stoma often visible under clothing with maybe 3" diameter and sometimes 1 1/2 to 2" protrusion. Third reason is you don't have to spend 30 or 40 minutes irrigating every day or every other day. My ileostomy appliance is worn 7 to 10 days between changes and the stool is consistency of A-1 sauce or apple sauce. With a colostomy (any percentage of large colon remaining -- there is putrefaction and build up of gas. I have virtually no gas -- but everyone is different and so is their diet. I eat everything. Very varied diet. Hope this input is helpful. Let me know if I can help with any additional information. Walt50 (new member)

Well, Walt, ileostomy over colostomy......

I am not sure if I agree with you as I have a colostomy and irrigate......have no odor and irrigation does set you free as you are not passing stool.........your intestines get used to irrigation.......and wait for it.....those who are candidates for irrigation should do it..........I have been doing it now for 14 years.....and do not even notice I have a bag attached.........ileostomy patients cannot irrigate......so they will always have a bag filling up..........

If one learns certain techniques in doing irrigation.......they will be pleased they started to do it.....it is easy and not time-consuming........and sets you free to do what you want when you want.......never having to worry about your bag filling up..........

Seems Jpeters has a problem of building up a lot of gas.....and that is the problem.....and that should be checked...........

Hi WAB,

You have raised a lot of very valid points. I am pleased with your satisfaction of your colostomy management. All of our bodies are different and likewise our diets. I'm able to eat everything and hope that you also enjoy a varied diet. My surgery was emergency at 2 am to save my life from fulminating ulcerative colitis. Sick only for 3 months from 150 lbs to 83 lbs. Had no choice on the type of surgery but fully adjusted to 50 years of ostomy management. I agree that gas can be a problem and I learned to chew my food well and not to gulp food or drink so as not to force trapped air between gulps down the esophagus. Appreciate your post and hope that you will stay in touch. Best regards, Walt50

My Ostomy Journey: Ryan | Hollister

I read both of the posts from WAB and Walt. I have an ileostomy... I am used to it and I do pretty much eat whatever I feel like it, except raw food and I truly miss my salads, so I am sort of envious of WAB because he doesn't really have to deal with the constant emptying several times a day. If I had the choice, I believe I would have the colostomy if I could irrigate and make everything move at a certain time and pretty much wearing the pouch would be empty most of the time, I am guessing.... I think the question for JPeters is what kind of colostomy do you have WAB? I don't know that much about that part...

JPeters, so sorry you are going through such a hard time... I hope you have resolve soon...

Hi Janada,

I've changed appliances and now go only 3 days between changes but reduced my change time to less than 10 minutes. Empty the appliance about 5 times per day and it only takes 3 minutes each time. Colostomy irrigation can take 30 minutes or more and usually the colostomate must be more careful on food and diet selections. You might want to try small portions of salad and chew very well. Salads should be eaten along with starches and other cooked foods to minimize any tendency to loosen the stool. An ascending colostomy has a more liquid stool, sigmoid and descending colostomies will generally present more of a solid output.

Hope you are doing well,

Walt50

What appliances do you use? I am able to go 5 to 7 days without changing the wafer, but I change the pouch 2 to 3 times during that 5 to 7 days. I agree that it is only about 3 minutes to empty, but sometimes when I am working, it is not always convenient. Then I start with slow anxiety... In my purse, I make sure that the purse itself has a decent size center compartment with zipper. In there is where I have my supplies... wafer, pouch, small travel size spray of Lysol, empty water bottle. If I have to, I will just empty it and wipe the closure end, but only if I am without water. Otherwise, I fill the bottle with water and use it to help empty the contents by pouring it into the bottom of the pouch and swishing. I do that a couple of times for a couple of reasons. One of the reasons is that I do not like it if my stoma is caked. When it gets caked, which is not very often because mostly it's liquid, that is when it will cause a "blowout". So I do try to keep it somewhat cleared off. The other reason is that by not having at least a rinsed pouch, I feel like it's like a baby walking around in a poopy diaper... Ew! I do worry about odors and sometimes, I believe I smell something even after rinsing... and change that pouch immediately...

Oh, I use Hollister 2-piece system...

Janada

Hi Janada,

For 49 years, I used the same 3-piece appliance that I used after ileostomy surgery. The Feather-Lite 3-piece system by United Surgical - - later bought out by Smith & Nephew. My wear time was always 10 days plus with a change of the vinyl opaque pouch after about 6 days to replenish the karaya pastes (very deep) barrier I placed between the lip of the faceplate and the stoma base. I switched some months ago to the Convatec Natura 401501 since I was spending almost $80.00 per month that insurance would not cover. My copay per month is now ZERO, and I am using the same unique techniques that I initiated many decades ago. I do not use any soap or cleaner whatsoever (None) (leaves a residue). Just a tiny amount of karaya powder at the very base (1/8" band of the stoma circumference where the skin might be slightly red). I apply the stomahesive baseplate and then insert a 1/4-inch "bead" of Stomahesive paste. This "bead" in the "Moat Around the Castle" needs to be pressed down with a Q-tip - but only after applying generous Karaya Powder to the top so that the paste doesn't follow the Q-tip as you lift it. This presses the paste to all corners of the skin and inside of the disc opening so it lasts longer. Wait 2 minutes for the karaya powder to dry out the paste somewhat, and you have great protection for the skin. I should remove the pouch after 2 days and repeat karaya application once or twice, but I'm lazy and just make a full change every 3 or sometimes 4 days!

I believe you are changing the pouch and rinsing much too often. I don't rinse at all. Usually, ileostomy does not present significant odor problems because the transit time from ingestion to effluent is 2 to 5 hours and no time for putrefaction and odor development. Get a 1 oz tiny bottle from your pharmacist for a dollar if you insist on flushing the pouch, but I have never done that in 50 years, and I believe you are carrying a lot of excess baggage in your purse for a busy professional lady! Caking around the stoma is inconsequential and can't possibly cause or contribute to a "blowout". I am sensitive to odors, and believe me, there is no need to rinse the appliance. You can always use an aspirin tablet to totally kill any odor. Avoid garlic, asparagus, and maybe one or two other foods, and you should not have any detectable odor.

I hope this helps, and I am open to any criticism on my response because I know we are all very different. I would like to help you advance your ostomy management as much as possible, but it seems like you are doing very well so far. Reverting to a colostomy or a Jpouch should NOT be an option.

Walt50

I haven't heard of Karaya powder but am guessing it is the same as the stoma powder you can get from Hollister or other companies. Would I be right on that? I did have a sample of the paste and only tried it 2 times and didn't like it so much.

I never had a problem with skin irritations until recently...it's almost like I became allergic to the product. My normal application goes like this...

Adhesive remover wipe and wipe all around the stoma and area that will come in contact with sticky stuff.
Skin barrier protective wipes over same area and now, some powder on top of the little sore areas.
Brava moldable ring (thin) goes on next, around base of stoma.
If I'm home, my hair dryer on low on my skin, ring and wafer before I put the wafer on.
Wafer
Press and hold...then
Pouch
Stomaplex guard and belt to protect me and so I can wear a support belt.
Support belt over it all! (have a hernia)

Works pretty well for me.

I tried the hernia belts that come with the cut out area for the stoma. Our support group had a colorectal surgeon in to speak and she said the circular area or opening around the stoma lent itself to the creation of hernias...So I stopped using that kind.

I have developed one of my own, works amazingly well and causes no discomfort. It really supports and holds my belly and hernia in place. Feels great too!

By the way, our support group is having a meeting with VENDORS on October 14th. FM group is invited and now you are also. I may not be able to make it as I am hoping that I will be recovering from my surgery at that time...

Hi Janada,

Karaya powder is the same as Stoma Powder. It was discovered by accident on a hot summer day in the un-air conditioned Cleveland Clinic storeroom by accident on Dr. Turnbull's sweating arm on a spilled food item (ice cream is made of karaya powder). He wondered if the paste might protect the skin! It not only protected the skin but also healed any excoriation rapidly! What a blessing from the Karaya Gum Tree in South America. It was discovered several years before my surgery 50 years ago and taught to me by an old Army nurse that was active in the local Ostomy Groups. The Karaya Washer (which is what you use -- was made about 48 years ago by Hollister and mainly karaya, glycerin, and water. The Karaya Washer expands as it absorbs moisture and I invented a way for the expanded product to move towards the base of the stoma instead of towards the edge of the disc. Fresh supply to stoma base for protection and less chance of peripheral leakage. The Stomahesive Wafer that I use is pectin-based (apples) and seems to resist yeast infections: which might be what you are experiencing from the heat. I have found the stomahesive to be more secure and durable. The Stomahesive paste is what you need to try -- not for adhesion necessarily -- but for filling up that "Moat of Protection" around the stoma.

Why do you need adhesive remover if you are not using an adhesive? I'm not a vendor but may be interested in the Oct meeting, thank you. I'm thinking of writing a book on Ostomy Care. What kind of surgery are you having? Ileostomy revision? Jpouch internal. Back to colostomy with a remaining large bowel segment that was bypassed? Hope this info is helping.

Walt50

Hi Walt. Do you put the aspirin in the pouch or swallow it?

Hi Three,

The aspirin is placed in the pouch after emptying. Most aspirin tablets are coated, so it helps to scratch the side of the tablet with your fingernail to improve the distribution in the pouch. Most ileostomates don't even need the aspirin. The stool needs to be the consistency of ketchup or applesauce for the aspirin to dissolve properly. If a person has a thicker outflow and suffers from odor challenges, they may want to dissolve an aspirin in an ounce of water and pour it into the pouch. Aspirin is a very cheap deodorant!

Walt50

Thanks, Walt. I'll give it a try!