Concerns about Ileostomy: Burning, Sleep, and Cost

My doctor, a colorectal surgeon, has recommended a temporary ileostomy for puborectalis contraction and constipation that have resisted other treatment for years. I'm trying to seek out all the information I can beforehand. I want to be prepared particularly for the smaller details I should expect. I want as much of the stress and shock as possible over with while I'm not sick either from a colon prep or surgical recovery.

I'm sure I'll think of more, but right now I've got three top concerns.

First is the burning caused by digestive enzymes. I've had the yellow water that burns if I go to the bathroom too much in too short a period. OUCH! With an ileostomy, is this burning and stinging as painful around the stoma as it is around the anal area? It's hard to imagine it would be. If so, is it going to be occasionally inevitable?

Second is the ability to sleep through the night. I saw one company made a gallon-sized nighttime drainage bottle with a tube for such output. As big a problem as getting up in the night would be, why is this not more common? Would this work for any ileostomy? Is anyone familiar with it in terms of how often it needs replacing or whether it has posed any other problems?

Third and finally is the cost of supplies. Most insurance, including mine, will not cover them. Even if it did, I would not want to depend on it given the nature of insurance today. So, I'm wondering how much I would need to budget per month in the worst-case scenario for supplies. I would guess I'd need to go with a two-piece system if I used that nighttime contraption.

I'm not really sure which supplies are necessary and which are used for comfort or convenience. It's hard to tell what's what looking at online stores that sell these things. I'm sure it's going to take some testing to see what works best (brands, sizes, durability, etc). However, I'm looking for a monthly price range for basic necessities assuming the maximum recommended frequency of changes just in case I were unable to catch a special deal or offer.

I've asked my doctor's office to put me in touch with the stoma nurse I'd have, though I suspect it will take some time. Until then, I'm hoping someone here might be able to offer some more information.

Thanks!

The burning is caused by digestive enzymes and/or the acid produced in the stomach to break down food.

There shouldn't be any burning on the stoma itself (no nerve endings), but the skin around it would experience it if contact were made. I suspect with the right appliance, you would not experience this.

Getting up at night to empty is a bit of a chore, but it's better to get up to empty than wake up to a mess. I don't know about that contraption, but there are high volume bags that might suit your needs.

Good luck.

I lived with a conventional ileostomy for more than 30 years. I have a continent ostomy (K Pouch) now. Getting up in the middle of the night is nothing compared to the relief of not being sick anymore. I would not bother with that contraption. You would be surprised how quickly you can fall back asleep after a quick pouch empty.
If you take good care of the skin around your stoma, you should have no problems with burning.

Thank you for the replies! It's good to know the burning can be avoided. I had looked into the continent ileostomy, but because it is permanent, it is not an option right now. My doctor said the chance of complications is also greater, though I'm not sure if that is still the case.

Whatever I end up doing at night, is there any way to estimate how much the supplies would cost me a month?

As to cost, you could probably call any of the services for pricing. Especially with a flat out, "My insurance doesn't cover it and I'll be paying out of pocket". You might need to have specific appliances in mind however.

Just guessing, the cost runs about $80 to $100.00 a month for bags, flange, paste, etc.
If you contact the different manufacturers, they give out free products for you to try. Also, make sure you ask to try a belt too. They are really good about free products. There are companies that
are cheaper than others - so you need to do your research. Also, there is a company out there
that does give away free products to people that do not have the money for these products. The problem
is that they don't have a variety to choose from. I am on Medicaid and they pay almost everything, so that is really the way to go if you qualify. Medicaid doesn't pay for extras like tape, etc., so I get those supplies through Mercy Surgical Dressing Group, Inc. They are cheaper than some of the other places. I am too young for Medicare, and even if I was of age, I probably could not afford
the monthly payment of this insurance, so Medicaid works out for me now. You can get a lot of information off the computer and or through the hospital stoma nurses. Good luck, Butterfly48.

Part of the problem is that I don't know what all I'll need and how often I'll need to replace it. I've tried looking up products, and such information is difficult to find. I'll see ones that say they need less changing but don't say how often. As for what I'll need, I'm picturing something like a thick Band-Aid with a cutout for the stoma that the bag attaches to (if two-piece). I don't know what else is needed unless there is skin irritation or difficulty in getting it to stick?

From what I've read, I would guess $1000 a year looks to be a safe amount to budget. Unfortunately, my condition has left me unable to work reliable full-time hours since college graduation (of all times) four years ago. As a result, I've been dependent on my parents. My hope is that the surgery would allow me to work reliable routine hours and be able to pay for the supplies (or get insurance that does). However, I'm wondering if that will be possible with my history (or lack thereof) and today's job market.

Thanks for the tips and advice. I'll be asking the nurse about everything I can before I schedule the procedure.

I'm guessing when you have an ileostomy, you will be a completely new person, fit, healthy, and have a new lease of life... you may even work again... therefore, don't worry too much about cost, your well-being is more important... good luck.

What Celtic said.

But if you are feeling better, that might translate as confidence in the interview and at least there would be work and quite possibly health insurance. Your history shouldn't be an obstacle should health insurance be on the table.

Are you really sure that you need a temporary ileostomy? Have you tried other things to do?
Like eating different foods - using more fiber in your diet? Colon hydrotherapy to balance
out the constipation? Any of the detox pills in a vitamin or herb shop, etc.? Have you talked to an herbalist or even a naturopath? In California, naturopaths are considered doctors - so maybe you can locate a naturopath before you go through this surgery.
I only had my surgery because I exhausted all avenues and was able to keep my colon cancer at bay for approximately 20 years by doing all of the above. Good luck, Butterfly48.

I wish anything else could help. I do not want to do this. But as I've said, I've been trying everything for the past 14 years, and things have only gotten worse! I've tried fiber and every diet combination and exclusion I can think of, all the drugs, herbal remedies, probiotics, antibiotics, and exercises. They don't do much for a nonrelaxing puborectalis. I have been to physical therapists and tried biofeedback for several months as well as had Botox injections.

The last physical therapist said that anything that might help would take so long that the continuing problems I'm having and my low weight probably warranted the "temporary" surgery. I've even got burn marks from a heating pad to relax my abdomen and rough spots on the skin from trying to squeeze things out. What I have to do to pass gas is long and painful.

My doctor would be willing to do a lower colostomy just to address the pelvic floor issue, but it's not clear if there are problems higher up, and we don't want to risk needing a second surgery. A second colorectal surgeon concurred. I had considered it since colostomies, especially lower ones, are easier to manage. However, I decided it's not worth the risk.

I spoke to another stoma nurse (not one I would have), and she said supplies run at least $100 a month and up to $300. She was also telling me I could not eat anything I could see undigested now. I'd read about that, and it didn't concern me too much except that I'd hate to have to give up whole tomatoes. Both the chewed up peels and those tiny seeds do come out whole though.

McKinney - Have you tried alkaline (high pH water)? You may be surprised as to how much better you will feel. It will help with too much acid in your system - maybe that is why it burns when releasing. Also, you said you have tried fiber (not all fiber is the same). Also, digestive enzymes are not all the same. I am simply saying even if you have corrective surgery and not sure it will work - you still may have to try other sources once again. The alkaline water has helped me. You have probably guessed I own a health and detox center, so I know first hand that not all products are the same. Right now, you need to be positive. I wish there was a magic pill out there. For your pain - what worked for me in the past is a magnet - place it on the part of the body that hurts. Try a refrigerator magnet (they're not too strong). You may want to go to Home Depot for a square magnet that costs $2.00 and is very strong. I am using a pocket polarizer now. It works so great for pain - it has helped my bowel movements so I am not in the bathroom all night and I sleep better at night. Eventually, I will stop taking sleeping pills because they are not working 100%.
You can research all this information on the internet to see if these ideas would fall in line with your needs. Good luck - please don't give up - there is an answer out there for you - you just have to figure it out. Butterfly 48

I don't know what the pH of the water I drink is, and I've used several sources over the years, but I know there is not a relationship with the acidity of what I consume. Regardless, it's only a minor issue at this point. Different types of fiber actually do have different effects, but none ultimately help.

I've talked to an ostomy nurse. She said there are bags big enough to not need emptying during 7-8 hours of sleep.

I'm still worried about having supplies on hand if the hospital doesn't send me home with enough (and I know that some don't). I'd like to be prepared ahead of time. I'd also like to have something with adequately high volume to sleep in the first few nights. I wish I could have some sort of recommendation on what particular product(s) to maybe order to have on hand just in case.

Anyway, I'll probably have the surgery in about a month or so. I'll have a visit with my doctor a few days before, and I've been advised to let him know that I want the stoma to protrude at least an inch for easier management.

There are a lot of other small details that concern me (a bloody mess rather than another kind of mess; something the hospital uses called a catheter - they'd better not plan to put that thing in before I'm put to sleep!). Still, I keep coming to the thought this has to be at least marginally better than the status quo.

Acidity is a low pH. High pH are alkalis like bleach.

When I left the hospital, they gave me a bunch of samples to take home. You can contact
Hollister - and Coloplast to explain the situation, and they will send free samples for you to try.
You could probably do this before you go into surgery - the nurse should be able to give all
the info and phone numbers for these free supplies. I purchase my supplies from Byram, they are really good at mailing out supplies if you have insurance. If you don't have insurance, I get some of my supplies from Mercy Surgical Dressing Group Inc, 1-888-637-2912 X1921. They're very nice and they deal with charging and mailing out quickly - there are many others out there, just research on the internet. They have a lot of knowledge, and this lady (Kim) has really helped me with a lot of my questions. Also, this company deals with people that don't have insurance, so it
is cheaper to purchase.
Just remember, it's very important to watch what you eat because that is what the flow of the bag is about. So that's why I mentioned the high pH water. It is very important to balance your
body correctly when eating, or you may have problems. It's very important to keep your body
alkaline, not acidic. Good luck, everything will work out. Butterfly48

Thanks, I probably will try to get some samples to have on hand. I have insurance but it explicitly excludes "medical supplies" and "durable medical equipment." It's a cheap policy, so I don't expect it. My father is willing to cover the cost of supplies though. The first thing I'm going to look for are specialty large-volume bags or bottles. I want to be able to sleep without the need to empty, and I don't want to avoid eating for 8 hours before bed. That's why I started off asking about that. If there are any particular recommendations anyone here has, please let me know!

I don't know who "my" nurse will be since those arrangements are made by the hospital, not my surgeon. My surgery is scheduled for the 16th of June, tentatively.

The water I drink is probably more on the acidic side because it's distilled. I'm not sure how I'd safely "alkalize" it. Still, I find it hard to imagine the acids in my stomach and the rest of my digestive system would not make that irrelevant.

That does raise a question for me though as to about how long after surgery I can lift a gallon jug of water. I already can't lift more than 25 pounds (and only for a few seconds), but I regularly lift 5-10 just to prepare food.

Hi AD ~ You can supposedly alkalize water with inexpensive alkaline mineral drops available in some health food stores. Here's an article on what some believe happens when alkaline water reaches the stomach; however, whether or not this information is correct is open to debate (I have a friend who gives lectures on health around the world. I showed the article to him, and he said it was partially correct).


Alkaline Water and Stomach Acid: an article by Sang Whang
Among the people who question the validity of alkaline water, the biggest question is, "What happens to the alkaline water once it reaches the stomach, which is highly acidic?" People who have some knowledge of the human body, including medical doctors, ask this question. Let me answer that question once and for all to erase any doubts about the health benefits of alkaline water.

In order to digest food and kill the kinds of bacteria and viruses that come with the food, the inside of our stomach is acidic. The stomach pH value is maintained at around 4. When we eat food and drink water, especially alkaline water, the pH value inside the stomach goes up. When this happens, there is a feedback mechanism in our stomach to detect this and commands the stomach wall to secrete more hydrochloric acid into the stomach to bring the pH value back to 4. So the stomach becomes acidic again. When we drink more alkaline water, more hydrochloric acid is secreted to maintain the stomach pH value. It seems like a losing battle.

However, when you understand how the stomach wall makes hydrochloric acid, your concerns will disappear. A pathologist friend of mine gave me the following explanation. There is no hydrochloric acid pouch in our body. If there were, it would burn a hole in our body. The cells in our stomach wall must produce it on an instantly-as-needed basis. The ingredients in the stomach cell that make hydrochloric acid (HCl) are carbon dioxide (CO2), water (H2O), and sodium chloride (NaCl) or potassium chloride (KCl).
NaCl + H2O + CO2 = HCl + NaHCO3, or
KCl + H2O + CO2 = HCl + KHCO3
As we can see, the byproduct of making hydrochloric acid is sodium bicarbonate (NaHCO3) or potassium bicarbonate (KHCO3), which goes into the bloodstream. These bicarbonates are the alkaline buffers that neutralize excess acids in the blood; they dissolve solid acid wastes into liquid form. As they neutralize the solid acidic wastes, extra carbon dioxide is released, which is discharged through the lungs. As our body gets old, these alkaline buffers get low; this phenomenon is called acidosis. This is a natural occurrence as our body accumulates more acidic waste products. There is, therefore, a relationship between the aging process and the accumulation of acids.

By looking at the pH value of the stomach alone, it seems that alkaline water never reaches the body. But when you look at the whole body, there is a net gain of alkalinity as we drink alkaline water. Our body cells are slightly alkaline. In order for them to produce acid, they must also produce alkaline, and vice versa; just as a water ionizer cannot produce alkaline water without producing acid water, since tap water is almost neutral.

When the stomach pH value gets higher than 4, the stomach knows what to do to lower it. However, if the pH value goes below 4, for any reason, the stomach doesn't know what to do. That's why we take Alka-Seltzer, which is alkaline, to relieve acidic stomach gas pain. In this case, hydrochloric acid is not produced by the stomach wall, therefore, no alkaline buffer is being added to the bloodstream.

Let me give you another example of a body organ that produces acid in order to produce alkaline. After the food in the stomach is digested, it must come out to the small intestine. The food at this point is so acidic that it will damage the intestine wall. In order to avoid this problem, the pancreas makes alkaline juice (known as pancreatic juice). This juice is sodium bicarbonate, and is mixed with the acidic food coming out of the stomach. From the above formulas, in order to produce bicarbonates, the pancreas must make hydrochloric acid, which goes into our bloodstream.

We experience sleepiness after a big meal (not during the meal or while the food is being digested in the stomach), when the digested food is coming out of the stomach; that's the time when hydrochloric acid goes into our blood. Hydrochloric acid is the main ingredient in antihistamines that causes drowsiness.

Alkaline or acid produced by the body must have an equal and opposite acid or alkaline produced by the body; therefore, there is no net gain. However, alkaline supplied from outside the body, like drinking alkaline water, results in a net gain of alkalinity in our body.

A brief response to your question about what you can expect to leave the hospital with in terms of supplies. The hospital where I have had my surgeries is a Convatec hospital. By which the stoma nurses (WOCN) teach and send you home with Convatec. I expect there is some kind of fiscal arrangement here. I got home health care and the nurse who came to the house called all the companies to get me samples. I got calls from all of them offering me their support services. They want your business. You can ask the hospital if they deal with one of the ostomy companies. And, I left the hospital with a giant bag full of supplies...enough for a couple of months.

This is Zack from Michigan. It's been a long time (1977), but my experience with "ostomy nurses" was to send me home with 16" Hollister bags with Karaya seals. Awful. Karaya melts at body temperature!

When ileo is new, there's much more to drain and maybe more frequently, so get the bigger volume bags at first to last through the night. And limit what you eat and drink late in the day at first. In a few months, maybe weeks, the gut will stabilize and a smaller appliance will be fine.

Don't worry, that's how our guts got that way, they say. When you're ready, search out the appliance makers; start your search right on this website. They all sell direct and have local dealers. Local dealers I found often have a very limited inventory, but large sources like mine (Express Medical Supply- www.exmed.net) sell most makers and can give advice and free samples.

My one-piece drainable Cymed lasts about a week. Let's see: my Cymeds are relatively expensive; 10 to a box, $68.95 a box. So around 7 dollars a week. Other supplies might be adhesive tape, drainable bag clamps, and extra sealing ostomy paste, but way less than $7.00 a week.

I know there are much less expensive appliances, so work with sources like mine above. As Cee wrote above, they will want your business and want you to be satisfied.