Dealing with a Very Active Stoma - Seeking Advice

Hi, I can't see any other questions here relating to mine so just want to ask my own. I just wondered if anyone else suffers from a VERY active stoma?

I am 32 years old and have had an ileostomy since 2005, which has always been a bit active. I am generally quite a nervous person, which I am guessing makes it worse anyway, but I have had a bit of a stressful time the last couple of years and am getting a bit worried about just how active it has been. I eat very healthy, so I have always had quite a loose output and a lot of activity.

In the last few months or so, I have had a pretty horrendous blockage (I've had a few before which I have managed to sort out, but this time I was hospitalized), a consistently loose output, and a few episodes of pain-ish feelings in my gut (mainly due to worry, I think).

Last night, I had what was probably a very healthy dinner of homemade veggie burgers and salad and was woken in the night with a bag full of air and ...well ...pretty much foam(!?) and then the same again this morning. Stoma has also been embarrassingly active and noisy in my lovely quiet office this morning!

I am just a bit worried about the effect my recent stress has had on my bowel and would be interested to hear from anyone who suffers the same or indeed has had an ileostomy and (god forbid!) has had their IBD return - which I am getting kinda worried about :/

Also, the foam thing!! ..has anyone else experienced this under normal circumstances?

Thanks!

Hello, I also get the foam thing not sure what causes it probably the raw veggies in the salad. I often will have a lot of gas, did your veggie burger contain beans? No, don't laugh!!! That would do it! Anyway, hope this helps. I have both things often. Sometimes the ileo just decides to get noisy, who knows!

Good luck, Eddie

Hi, I have had a similar experience. My ileo was done in 2005, and at that time, I could eat almost anything and it wouldn't affect me gut-wise, though my stoma would be pretty active. As time has gone on, that has changed - I didn't have an ileo because of a bowel problem; however, I think I now have one, irritable bowel or something ....?

More recently, I have been having trouble with high-fiber stuff, and I have had it 'foamy' too. Stress definitely has an impact, but also I believe my large hernia and the fact that I wear a tight belt to support the hernia and my back. At the moment, I am so tired I really cannot be bothered to eat properly, which in itself I know is putting me in a cycle of doom .... If I ever won the lottery, the first thing I would have is a cook! xx

My ileostomy is always active as I have less than a foot of small bowel. I've found that the BRAT diet (bananas, rice, applesauce, toast) helps to thicken my output. I very seldom eat raw veggies even though I love them because I've found they give me gas, don't digest well, come out the same way they went in, and cause the foam you're referring to.

Inca,

I hate to come across hard. If you have an illo, keep away from the raw veggies. Almost all of them will not digest in the small intestine. You are really opening yourself up for blockages.

We all are different. As a general rule, the veggie thing applies. One of the worst things can be popcorn.

I found life with an illo was much easier if I stuck to proteins. No food bags at night.
No leaking bags at night. Little to no gas during the day. I take lutein and beta-carotene capsules and drink light amounts of veggie juice.

I have never had a blockage. I think it's because I take very small bites, chew well, and stay away from fiber. And I am lucky.

I think the most important part is the luck!

Good luck
Rick.....

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

I have to echo 'junopete's' advice. Raw veggies don't digest well, and it is probably better to get your vegetable nourishment from other valid sources. For myself, I never eat salads because back when I did (at the beginning of dealing with an ostomy) I would eventually wind up getting blockage, as I tend to eat salads almost with every dinner back then. I have controlled blockages by taking the advice I got from forums such as these, and one involved drinking grapefruit juice (no pulp) when you suspect a blockage coming on, stooping with your knees to your chest, soaking in a hot bath, and walking a bit (being immobile is not good). I do most of the things that junopete mentioned, and that seems to help keep me blockage-free.

I also have MS as well as the Ileo and swallowing has always been a major problem, so I have always mashed up everything before I eat it. It doesn't look pretty, but tastes the same! I have never had a blockage in 5 years though. Bananas do a wonderful job for me in thickening up output - at least one banana a day, and I don't eat raw vegetables at all, apart from a bit of lettuce, which comes out the same as it went in.

Hi,
I suffered blockages before from popcorn and nuts. I have given up eating popcorn for a year or so now. Last week I ate numerous almonds without really being aware of how many I had eaten. I ended up in outpatients with a stoma flushing that lasted almost 2 hours. Almonds are also off my list now. I have never had problems with raw vegetables so far, anyway.

Janice

Hi Inca: Just replying about the active stoma. Yes, I have had plenty of days and nights where the pouch nearly blew off. Just got to the bathroom in time to change it. Gas can be a big culprit too. So, I do not know if it is because I am wearing a disposable pouch or what...I know that the other kind of pouch holds more stool but the liquid part can cause a leak very easily. Trial and error is what I say. There is so much out there to try now that I am sure there is a right product for all of us.

Let me know how you make out with the other product...I do like the 2-piece system and only tried the one-piece for a week. By then I had had it. My ostomy nurse came over and fitted me with the 2-piece Hollister set. If it isn't broken don't fix it.....

But, whatever has happened to my system, it has knocked the heck out of it. Weight loss, poor absorption, little food because I have NO appetite. Nauseous all the time and a lot of vomiting.

I like my morning coffee with real cream and will always drink it no matter what they say. All the pleasures have been taken away from me. I enjoyed a hot bath at night for years and now it is a hot shower without any appliances on. It feels good to have the water cover my whole body. And yes, it can be very messy in the shower if the stoma is putting out. I just clean it when I am finished. Most people shower with their appliances on. Not me though, I take everything off and put a clean flange and pouch on.

Well enough about me, I am looking forward to your next post.

Many thanks, Lisa

Hi Belinda:

So good to hear from you on the forum. We have not talked for a long time. I just had surgery on my arm last Thursday. Do you remember me telling you my right hand was numb? Well, it has taken almost 2 years to get this surgery done. More damage was done by the waiting, so the doctor said. I blame him for that because the hospital called me and said that I was on the priority list and had been for some time. The hospital thought maybe I had had my surgery already. I was not pleased at all. So it was done on Mar. 11th and in 10 days, I can have the stitches out. It will be a slow recovery period as well. I just must keep my fingers mobile as much as possible. Last night was difficult, and I just sat in the rocker all night. Had a pillow supporting under my arm. I am not comfortable in my bed. The last time they rushed me to the hospital, they asked me if I had DNR...I said No, and they looked at me like I was crazy. Maybe I am, but if there is a chance to live past 60, then I would appreciate it. Just because I have an ostomy does not give them the right to let me die.. Right?

Will B, I shall look forward to hearing from you too.........
Love, Lisa

I'm very active too. I thought it was just part of having an ileus. It also hurts quite a bit - is that normal? My ileus sits in the bottom of a large scar and I have a real problem just getting my wafers to stick. Any suggestions out there? I've tried the usual glues, cements, and benzoin.
I usually don't manage holding a wafer more than a day. Is anything out there a surefire way
of keeping a wafer in position? I need help.

Hi, thanks so much to everyone for your answers. They are all so full of information! I am very grateful. Unfortunately, I enjoy an almost vegetarian diet, including quite a lot of - yes Eddie, they were in there - beans! And raw veggies, etc. I can see I am going to have to make some changes, which is kind of depressing :/

Lottagelady - I know exactly what you mean. I've been very lucky in that I've always just carried on my life as normal, but I seem to be becoming increasingly aware of my situation. I have indeed been worrying too about IBD symptoms. I guess this is the pace of life these days for everyone! I am sorry to hear you're so down. It is hard, but making sure you have nutritious meals on the go is so important. I too lose my appetite first when I am down, but I have recently started planning my week's evening meals off the internet at the weekend and making sure I have all the food in so that I can make them. It is tough when it becomes an effort just to feed yourself properly! I have been using an American website, Eatingwell.com, for my meals and it's great. It gives you healthy, quick, entertaining recipes.. whatever you need so you don't get bored. If I win the lottery myself, I will get us both one!

I have so many other people I'd like to reply to, but I am on my lunch break and the sun is beating down, which doesn't happen too often in Scotland! So I am going to for now. Just want to say thanks again. I am definitely thinking I should have been using a forum like this a long time ago.

Cheers

I used to love popcorn!

Every piece of literature I received from the hospital and ET nurse mentioned absolutely no popcorn or nuts. And raw vegetables in small amounts or not at all.

I was a huge raw vegetable eater prior to the operation -- I have only tried a bit of lettuce which came out as it went in. It doesn't work for me.

I tried some chocolate last evening and I am sure paying for it today -- very active and watery output. The 'little voice' was telling me to stop while I was eating ... why didn't I listen?

I've had a very active stoma since day 1, and 2 blockages in which I took care of myself. Lots of water and lots of walking. Rice gets me to flowing and kernel corn, I still eat whatever I have an inclination for just in moderation. No more almonds (which help to lower cholesterol) I even chewed them up very small... not a good idea. I still eat popcorn, just a handful and chew up very, very well. (Popcorn makes you have gas in pouch)
The main thing about having an ileostomy is chew, chew, chew... Oh and did I say chew????

I am not an ostomate, and I have the same problem. Chocolate always trumps my free will, it seems!

I love raw vegetables and fruits--it was a bit of a shock to find out that my healthy eating habits were the worst way to handle my ileus. I did find a solution and I'm passing it on. Montel has an infomercial about a food chopper called a Healthmaster. I bought one--it's a bit pricey but when it gets through with a pitcher of raw vegetables, you don't have to worry about blockages. The thing could grind up a rock. It ain't your ordinary blender--it's nearly as tall as I am and weighs as much as a microwave--LOL--not as overstated as you would think! For those of you who can't bear the thought of no raw vegetables or fruits for the rest of your lives--it does work.

Hon, maybe eat slower. Veggie burger I found. Any food can set it off. Do you have gas suppressants? If so, use them. Even Ileogel, which the water hits, it takes out that slushy water gunk and makes it better to manage. Please, please watch out for nuts. Who am I to talk? Drink booze, have fun times, mainly eat anything, but I do pay the price. Oh, and good old marshmallows. I check mine even in bed when I turn over and get up to go to the loo. If you eat smaller meals (I am told 2 as well), but don't hope this or any info can help anyone on this site. Chow, Mare - Mooza XXXX