Hi, I’ve had ms for over 40 years they’ve said that it’s benign as although I am numb all over my symptoms haven’t got any worse. Having said that my bowel movement is not existent. I’ve tried movical, lactulose and senna etc all that does is give me chronic stomach pain. I’ve also been using peristeen for 4 years, but as I have very large prolapsing piles this is also not working. I find it very uncomfortable and after an hour on the loo my piles swell and I end up having to lie on the bed for about 2 hours until the swelling goes down. Has anyone had an ileostomy and if so how are they getting on with it? It’s been suggested to me and I keep thinking about it but it’s a huge decision to make. Thanks
I read two different thing in this post 1. You have piles, they can be treated - surgery if needs be. 2. Bowels - I can sympathise with the pain and discomfort that causes, I remember it well. I say remember because I went through everything you describe. Then I started looking at my diet, I’m now on Gluten free and Lactose free milk. I don’t know how it happens but it has Less stomach pain, less rancid wind, less bloating. I don’t believe your bowel movements are non existent but may be less frequent - twice a week is an improvement for me. Get plenty roughage (I use Grenola) and easy peel oranges/satsumas. If I need any help a microlax (buy at Chemist) and, you won’t be waistline two hours on the toilet. Try not to get into the realms of Iliostimy without one last go - experimenting like I did. I don’t know your medical history and I’ve never had anything close to Iliostomy so you might decides to disregard all this but good luck.
Hello Steffy
Both you and Charlie are right, ileostomy is a massive step to take. But I disagree to some extent with Charlie.
I was completely unable to open my bowels naturally so was doing digital stimulation in order to empty my bowels before having a colostomy 4 years ago. So yes, it is possible to have non existent bowel movements. I haven’t had a bowel movement as such for about 12 years.
I had horrible piles, had them banded, treated by the nurse at my GP surgery time after time. I didn’t have prolapsed piles, but honestly, it was very, very unpleasant. I had a horrible nappy type rash and was having to apply thick gloopy ointment to my anus as well as barrier cream.
I couldn’t make Peristeen work, equally, all laxatives, dietary changes and other measures failed. Basically, in addition to slow transit through the bowel, my sphincters just did not / do not work. At all. My bladder is the same, I cannot pass urine either, so have to use ISC and have done for 10 years.
The colostomy was a big step to take. But I felt at the time that there was no choice. Digistim was difficult and not a perfect solution.
However, since the colostomy, over time I have learnt a hell of a lot about my bowels, and many things about which I was clueless before colostomy.
First, I had no idea what dietary changes I would need to make. No one ever spelt out what I should or shouldn’t eat. I now can’t eat any fruit or vegetable skin. I can’t eat wholemeal or high fibre products. I can’t eat mushrooms, nuts, or most raw food. Large amounts of meat are liable to cause blockages. A lot of salad (just leaves as most other salad items are indigestible) can cause blockages. Anything like a stir fry is a bit of a no-no (imagine pulling long strings of onion, pepper etc from a stoma?).
I’ve had severe constipation and severe diarrhoea. One tends to follow the other.
I also have a problem with mucus in my ‘stump’ of rectum. This forms into solid waxy balls if left alone. Mostly people who have an ‘ostomy’ are able to pass the mucus, but just as I was unable to open my sphincters to empty my bowel, I can’t pass the mucus either. The situation re this mucus has reached the stage where I have to have enemas administered by the community nurses. These were initially twice per week, reduced to once and are done a minimum of fortnightly now. Even the enemas aren’t enough to rid the majority of the mucus, so I’m still doing digital stimulation after each enema. This then leads to significant bleeding.
Honestly Steffy, if you find you have to take the serious step of ileostomy or colostomy, make sure you’ve asked all the questions you can before hand. Make sure you’ve exhausted all other options first. It’s really not an easy option.
I can’t say I regret the colostomy exactly, life was pretty miserable before it, but it’s not massively easy now.
Feel free to PM me Steffy if you want to know anything else, or just want to share your experiences with someone who understands.
Sue
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Thanks you for your reply. I will message you.
In response to your disbelief about my condition, you’re right you don’t know my medical conditions. I have prolapsing piles, some have been banded others can’t be, surgery is not possible due to positioning.
The second thing is it is, and I and others will tell you that it is possible to have no bowel movement or even sensation to go to the toilet. I use peristeen and just recently I decided I’d have enough of it and tried to manage with movicol, senna etc, after 3 weeks of nothing I decided there was no option other than go back to peristeen which then took best part of another week to start to clear me. So, trust me when I tell you ms can totally disrupt your bowel movement and your life. I can honestly say.
I’m glad that you find your diet works for you. But along with my ms I also suffer badly with eosphagitis so can’t drink or eat lots of things that might help my bowel but not my eosophagitis. I would certainly be pretty ill drinking orange juice. So you see things aren’t quite so cut and dried like you think.
I came on here for help, support and advice from people that have had the operation that I’m speaking about, not to be told that it’s not possible to not have bowel movements and to change my diet. How that possibly will help my question beats me.
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I suspect we share several of the same problems Steffy. I have oesophagitis too. Always have to have liquid Gaviscon near to hand in case of sudden severe pain! It’s a misery to be added to all the others. MS bloody stinks.
Sue
Steffy - I am sorry to have caused you upset, it wasn’t my intention. Spontaneous deification can be a problem for some people and the side effects of medication are a nightmare - I know and can appreciate it can be seen as the lesser of two evils. Again apologies for the offence I caused.
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Thank for your apology