I'm a newbie...

[Paddy Holmes]

New Member


Join Date: Sep 2011
Location: Bangor N. Ireland
Posts: 2 Speedy passage after eating

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I've had Crohns for 25+ years now and have had LOTS of my small intestine and large intestine removed. I now have an Ileostomy which makes life a little easier but because of 'frequency', eating is now a problem. Within 20 minutes of eating, a sandwich for instance, my system empties itself which can take up to 15 minutes and is quite unpleasant and painful. I've been told by my surgeons that due to the quantities of adhesions resulting from previous surgery, there is no chance of any further surgery to improve my quality of life.
This must sound like a massive winge but I'm simply stating the facts.
I take imodium like sweeties, colofac, codeine phosphate, Asacol( I can't take Pentasa, it gives me migraines) and am also on anti depressants.Lots of supplements and anti-histamine which helps with skin sores. Life is difficult. Luckily I love my home and have a wonderful husband so don't worry too much about being housebound. I take our two dogs out for 30 minutes midday but that's pretty much it.
Diet is high in bread, potatoes pasta & fish but is very boring. Is there anyone out there who can relate to this and advise me? Any suggestions or understanding replies would mean a lot. I'm new here so please be gentle!!!

 

[mikeyarmo]

Welcome Paddy Holmes,

Welcome to the community! I am sorry that life is difficult for you right now. I am glad to hear that you do have a supportive husband though.

The easiest way I find to make food more interesting is through spice. You need to be very careful though as different spices can impact you differently. Red chili flakes and other very spicy/hot items are not recommended as a lot of people have trouble with them. You might find some others you tolerate better (for example: having dill with fish or oregano with pasta).

The people on the forum are really great so you should not fear being attacked! Feel free to post your questions and make sure to use the forum's Search Function as your questions may have already been answered in the past.

 

[xJillx]

Hi and welcome! It must be very difficult to deal with the frequency after eating. I have read a few members reporting the same issue. Actually, I found this recent thread and I thought it may be helpful: Click Here

I don't like to hear about the pain you're experiencing when you go. Have you doctors suggested anything to address this?

 

[glum chump]

Hi Paddy:

Welcome to the forum!

I have an ileostomy as well---got mine mid-May. My output is a lot like yours---quick and dirty. I usually have to wait about half an hour after I eat before taking the dog out, but I'm trying to figure out right now when my output is higher. I haven't had the nerve to stray too far from home, but I do carry an emergency kit with me wherever I go. How often are you emptying your bag?

There are a number of good tips that's in the thread that Jill posted. My surgeon and ET nurse both suggested that I keep sugar at a minimum. Also, I was drinking about 3 litres of water every day, and they told me to take it down to about 2 litres as a way of slowing down the output.

Have you tried soups and stews? When I had pain from strictures, my diet was very similar to yours and I tried to vary it with pancakes, crepes, french toast. I try to use as many herbs as possible in my cooking---right now, I'm trying to take advantage of all the basil we're growing and making lots of pesto. To 'dress' up my fish, I'll often use mayonnaise with a blend of herbs and slather that on the fish and then bake it. I also eat a lot of rice and rice dishes (paella, fried rice, etc.) vegetable dips and tapanade---perhaps smaller amounts of food more often might help? You might want to check out the 'Diet and Fitness' section of the forum---there's a recipe subforum there and might have some ideas for you.

If the immodium isn't working that well, is there any chance your doctor or surgeon might prescribe Lomotil and see if that works a bit better?

I hope you find some relief from the pain you're experiencing. You might want to post some specific questions over in the Stoma subforum. There's some pretty experienced folks there with lots of great ideas.

Cheers,

Kismet

 

[Paddy Holmes]

reply to glumchump

What a lovely friendly letter! I have tried Lomotil in conjunction with Imodium and coeine Phosphate. The danger is that I've had 3 major blockages now which required hospitalisation, tube up/down nose, IV and starvation until the passage is cleared. They found last time that I have adhesions growing into my large intestine and if I thicken too much, it makes the ileostomy strain. V painful!!!! So I live on fluids, peeled grapes and non fibrous fruit and cheese and fish. I used to be a chef so this has seriously dampened my enthusiasm for cooking! 100%fruit ice lollies make a nice dessert , probiotic yoghurts and chocolate in small doses. Too much and I live in the loo...

When I make stews, I eat bread with the gravy, which is lovely. Nursery food and rice pudding but it's very much a case of grazing...little and often. A whole sandwich would cause a problem.
You asked how often I empty my bag, it varies depending on stress levels and what I've eaten. Whilst herbs and spices are lovely, I've now discovered that cloves are a no no. I'd say overnight, on average I have to empty a 3/4 full bag 4 or 5 times. On a bad night , if the system is very fluid, It could be double. During the day it's only about 6 or 7 times. Depends on mood and food!!!!
Thank you for getting in touch. I'd be happy to be a 'shoulder to lean on ' if you need one

 

[Astra]

Hiya Paddy
and welcome

So sorry you're going thro this, hopefully you'll find comfort here with us!
Those 3 blockages? Hope it's not the Imodium and Codeine. Too much of these and there's a high risk of constipation and obstructions.
Anyway, any questions, just shout, always someone here!
Lotsa luv
Joan xxx

 

[glum chump]

That's a lot of bag changing---you must be so tired in the morning.

And the NG tube is AWFUL! How I hate that thing.

I'm not sure that this is an appropriate drug for those with an ileostomy, but have you tried Cholestyramine? Before surgery, this drug worked far better than Lomotil and Immodium.

I actually had just posted a question on the Stoma subforum about adhesions. My nurse told me that it seems I have a build up of scar tissue and is having me try to 'massage' it out. I'm sorry that the adhesions are so aggressive in your body and the limits it's placing in your life.

Keep eating those sweets!

Kismet

 

[Paddy Holmes]

Thanks for your your replies.My adhesions are caused by the multitude of abdominal surgery I've had over the years.The docs say no question of any further surgery- I could have told them that!!! The scar tissue apparently is like tentacles which can penetrate internal organs.Doesn't bear thinking about...
I self medicate to a certain extent. I was put on a dru that I had to self inject 3 times a day in my abdomen. It was meant to dry up the gastric juices. Shortly after starting it I had a blockage and decided to stop the treatment, apart from anything else it was SO painful. Like a wasp sting!

 

[David]

Hi Paddy and welcome!

1. Regarding those supplements, would you be willing to share which you take?

2. Have you ever looked into psyllium husks? I know one well respected member here speaks highly of them for short bowel issues.

All my best to you

 

[yeags]

I don't do well with potatoes as I flare up if I have too much of them. I just started the specific carbohydrate diet which is a very low carb diet. It's tough for me because I love bread and pasta! I'm only on day four, but I'm optimistic because I've heard so many good things about it from other people in the same boat.
Give it a try. It may lessen your intake of imodium.

 

[Paddy Holmes]

Paddy Holmes supplements

Thank you all for your kind messages. The supplements I use regularly are, Calcium; I'm post menopausal; 50+ multivitamins, Lactase Enzyme, and Aloe Vera. I found a place on the web that sold a VERY strong version of the Aloe Vera and it did seem to help but it cost over £100 per month. Wish I could afford it as it did help.
The medication which is prescribed for the Crohns is Asacol- Pantasa and I don't get on though it is more effective; Imodium,Codeine Phosphate,Colofac,and because I get 'the blues', Effexor and Diazepam. I take antihistamine which helps with itchy skin.
As I now have a Ileostomy, I can't go overboard on the thickening agents as that can cause problems. Luckily I love my home but would like to be able to have a holiday some time. We've lost money three times on holidays due to flare ups which have caused hospitalisation. No question of getting refunds due to existing condition so sometimes it just doesn't seem worth the travel insurance for me, just my husband!
Loving the contacts and friendliness of the forum. Many thanks.

 

[Paddy Holmes]

I haven't found a doctor I would want to recommend yet, but if one exists, I'll be sure to add thier name.