Food and stoma pain

[UnXmas]

Some of you will know from my posts that my stoma blocks very easy if I eat anything containing much fibre. I've learned the symptoms of blockage very well, and recognise it easily.

But now I've eaten a bit more fibre than I normally would over the last day or so. It's not been enough to cause a blockage, but today the stoma output is hurting as it comes out - the pain feels like it's from the stoma itself. Basically, as the bits of food that aren't broken down are coming out, it's hurting, as if the stoma opening is having to stretch as the output's being forced out, and it's making it feel very sore.

Does anyone else have this pain? I know my stoma blocks exceptionally easily, and I've never been able to tolerate fibre well. But my stoma nurses have told me that too much fibre can give people with ileostomies watery output, but I don't remember ever being told it would cause pain.

I'm sure this is a sign I should minimise my fibre intake if I want to avoid another blockage; I've been having a lot of trouble with food at the moment besides stoma issues (very long thread on it here: http://www.crohnsforum.com/showthread.php?t=66680 ) so I've struggled finding things to eat. I'm not really asking for advice - it's pretty obvious that certain foods aren't agreeing with me -but I'm just curious if it hurts anyone else like this.

 

[DJW]

Sorry you're having troubles. One thing you may try to reduce pain during these episodes I'd cut the hole of the flange a bit larger.

I don't get stoma pain, thankfully.

 

[2thFairy]

I do get stoma pain every now and then. Some people say they never know when their stoma is active, but I always feel when it is doing its thing. Most times it is not painful, but other times it does hurt. I haven't found a connection with what is passing, though. Doesn't seem to matter whether it is high-fiber foods or not...just sometimes it hurts and sometimes it doesn't.

Fiber doesn't give me watery output; it does the opposite. High sugar foods, including sugary fruit, will give me very watery output.

 

[UnXmas]

I always know when my stoma's active too, but like you say, it's not normally painful. The pain this time isn't bad, I was worried for a moment I was getting a blockage again, but the ouput's coming out properly now, so it seems fine.

 

[cleuger]

I am learning so much from you guys. Unxmas hope your pain is easing. I hope one day I can offer others on here help. I didnt know Fiber was an issue I thought you could eat anything you want after colen removal with an ostamy. When you have a blockage are you able to get things going again by yourself? How do you manage?

 

[DJW]

Mine usually clear on their own. Its easy to get dehydrated so sometimes I need a trip to the ER for iffluids and pain meds . A lot depends on the cause of the blockage. Scare tissue, inflammation, or eating something I shouldn'thave eaten .

 

[2thFairy]

Most times blockages clear by themselves. You can massage the area, take a warm bath, rock yourself, or use a heating pad at home to get it to clear. If that still doesn't work, go to the emergency room and they can manually clear it. If it is really bad, surgery my be needed, but this rarely happens. Just don't ever stick anything in your stoma yourself to try to clear it---only a medical professional should do that. These are things that your stoma nurse should tell you in the hospital before you go home. If not, definitely ask them before you leave.

 

[Susan2]

Also drink warm liquids to help clear a blockage. As 2thFairy said, these are things that your stoma nurse should talk to you about. I gave myself a bad blockage by eating a large slice of lemon cake made with ground almonds and semolina. I knew when I was eating it that it was the wrong thing to do but there was nothing else that was any better. Wouldn't do it again; I'd rather go hungry!

As my GI said to me after my proctocolectomy, there was no need for me to eat fibre ever again. In fact, he said that I would be better off to puree all my food, as I would get more nutrition from it that way - although he did understand that I might find it a bit texturally boring.

The stoma nurse should also talk to you about the other functions of the colon that you will need to adjust for, once yours has gone. The most important of these is that the colon re-absorbs all the liquids that your digestive system puts out to help you digest and absorb food. Without a colon, this liquid gets excreted through your stoma, so you need to drink more fluids to replace it. Eventually what's left of your intestines should take over some of this function but dehydration is always a danger and you need to watch for it.

Don't be backward in asking any questions that you have, either here or of your stoma nurse. The more prepared you are, the better. :ghug:

 

[UnXmas]

I am learning so much from you guys. Unxmas hope your pain is easing. I hope one day I can offer others on here help. I didnt know Fiber was an issue I thought you could eat anything you want after colen removal with an ostamy. When you have a blockage are you able to get things going again by yourself? How do you manage?

If it's a full blockage, you should go to hospital. Partial blockages I manage at home on my own. My stoma blocks very easily. I can't eat more than one portion of fruit or veg a day (with a few exceptions of low-fibre fruit and veg), I can't eat nuts, seeds, wholegrains, dried fruit, etc., though the amount I eat is important besides just individual foods.

There are a few tricks I've learned to shift blockages myself: eating, drinking a hot or fizzy drink can stimulate the bowel, resulting in increase in pain but can get things moving.
A hot bath or hot water bottle held on the stomach relaxes the muscles and can help.
Lying on the floor on one side then rolling to the other, and lying on your front with your knees drawn up to your chest can help (I spend a lot of time rolling around on the floor, lol... I don't get blockages often, as I'm careful with what I eat usually now, but for some reason my stoma just generally has difficulty getting things out, and the lying on the floor, changing positions and lying on my front helps).
You can also try massaging around the stoma, or even putting your finger in (carefully!) to shift the blockage that way.

For me, blockages mean cramping and nausea every time output is coming out (or trying to come out) of the stoma. This goes on for a few day, gradually decreasing, but the area is sore for a while.

You do have to be careful with what you eat. There may be a few foods you can't tolerate at all. Usually you can start introducing more fibrous foods six to eight weeks after surgery, as the swelling goes down, which means the stoma opening is wider. I don't know why I block so incredibly easily. Most people with stomas don't seem to have to be nearly as careful with diet as I do. (I have an ileostomy, btw. It may be very different with a colostomy.)

 

[UnXmas]

I’ve noticed that the official guides for diet with an ileostomy all begin by saying you can have a normal diet, then go on to tell you which foods will make you ill! One section on what may cause a blockage, one on what will cause watery output, one on what may cause the output to smell more.

But it’s like they don’t want to discourage people from eating a healthy diet, since the foods likely to cause blockage or watery output are all the “healthy” ones – fruit, veg, whole grains, and then you’re told to increase your salt intake too, so it’s all like the complete opposite of what is mainly thought of as healthy eating. Except fluid intake, I’ve been told contradictory advice there – that you must drink more and that you must drink less.

My experience has been that the official advice of returning to a full diet once healing is over is wildly wrong – I have to be very careful with what I eat.

My stoma’s still feeling very sore!

 

[cleuger]

Hi Unxmas is your Stoma feeling better this afternoon? I was under the impression that once someone had a had the total proctocolectomy that they could eat whatever they want. I've never had a blockage which I'm grateful for since I do have 2 strictures. They will be removed with the colon. I was told about the fluid intake by the Stoma nurse. I do hope you fell better and I hope that im able to offer help once I have my Stoma. 20 days and counting.

 

[2thFairy]

The diet depends on whatever health issues you have. Since your strictures are in your colon, I suspect you won't have many restrictions, if any, after your proctocolectomy.

 

[UnXmas]

Well the day after the pain, my intestine perforated. A loop of bowel had become blocked, and the surgeon thought the blockage had probably been building up over many weeks (since they started stuffing me with food in hospital). The pain was because the blockage was pressed up against the stoma, with only a little room for everything to squeeze through. The next day - :sign0085: .

So I guess the moral of the story is don't ignore stoma pain. It was weird because it didn't feel serious at all, or maybe my intuition is just way off. I only knew it was serious, and knew very suddenly, after my intestine perforated. That I knew about.

 

[Susan2]

Oh dear.:eek2: Thank goodness you are still with us! That is really serious - you could have ended up with peritonitis. How are you feeling now?

 

[cleuger]

Well the day after the pain, my intestine perforated. A loop of bowel had become blocked, and the surgeon thought the blockage had probably been building up over many weeks (since they started stuffing me with food in hospital). The pain was because the blockage was pressed up against the stoma, with only a little room for everything to squeeze through. The next day - :sign0085: .

So I guess the moral of the story is don't ignore stoma pain. It was weird because it didn't feel serious at all, or maybe my intuition is just way off. I only knew it was serious, and knew very suddenly, after my intestine perforated. That I knew about.

This sounds serious what causes something like this to happan? is it common? Im glad to hear everything is ok now. Did you have to have surgery again?

 

[2thFairy]

It is not common to have a perforation like this.

 

[Susan2]

2thFairy is right. It is very uncommon.

 

[cleuger]

Ok so Unxmas you had pain in your Stoma I thought there were no nerves in the Stoma. How did they unblock you? You poor thing Ive never had a blockage or perferation and I have a lot of sympathy for those that have I could never imagine your pain. You've been very kind to me I hope I can return the kindness. : )

 

[DJW]

The nerves aren't on the inside of the intestine they're on the outside.

 

[2thFairy]

Some people feel nothing, others feel everything. I always feel when my stoma is active and sometimes it is painful. Not bad or anything, but I am ultra sensitive, I guess.

 

[Nyx]

I would just like to point out that perforation pain and active stoma pain are two VERY different things! When my bowel perforated I thought I was going to die with the pain...and definitely knew that something was wrong! Stoma pain when it's active is more like pressure than pain, and it's certainly not anything to be worried about. On a scale of 1 to 10, stoma output pain is a .5...perforation pain is about 135688654433. Not sure if this has been helpful or not....lol

 

[UnXmas]

It's a very uncommon type of perforation. I read that there is no actual feeling inside the intestine, but I perceive it as if there is.

I had an awful night with my stoma and everything else last night, and I'd been getting better so quickly until now.

 

[UnXmas]

I would just like to point out that perforation pain and active stoma pain are two VERY different things! When my bowel perforated I thought I was going to die with the pain...and definitely knew that something was wrong! Stoma pain when it's active is more like pressure than pain, and it's certainly not anything to be worried about. On a scale of 1 to 10, stoma output pain is a .5...perforation pain is about 135688654433. Not sure if this has been helpful or not....lol

Very true. I mistook blockage pain for stoma pain. I definitely knew perforation pain was something very bad! I didn't know what, but I knew it was bad!