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I've had MS since diagnosis in June of 1986. It's only been really demanding in the last 15 years putting me at an 8 on the EDS Scale. Recently I've encountered a new problem which I not sure is MS related. I experience this constant urge to do a bowel movement, and even after going the feeling returns almost immediately. I have to take laxatives but sometimes although feeling the need nothing is there. I have to use suppositories and have for sometime and I know long time use can lead to some of the symptoms mentioned. I used to think UTI'S where the cause, as I use a catheter and usually run into this problem 2 or 3 times a year. Now I'm thinking IBS may be contributing to the problem? My apologies for bringing up such a wonderful subject but I find this almost as debilitating as the MS.

Hi,

You're in a completely different place to me so forgive me if I ask some obvious questions.

Apart from the suppositories and other laxatives do you ever have a colonic irrigation to clear any obstructions? If there is some impacted stuff high up, you can still have movements but it stays there. If you are worried about IBS someone should do an investigation to see what is happening anyway.

Do you use a probiotic?

What does your diet normally consist of?

Regards,

I tried to find someone about the colon cleansing but no one wants to do it with a disabled person. I think the reasons are obvious. Diet is fair. Don't eat deserts or anything with sugar. Tried the gluten wheat free thing for awhile but it didn't seem to accomplish anything.

Hi,

Perhaps ask the question another way. Talk about the obvious constipation and the sensation you have of needing to go. Then ask to be investigated for the risk of impacted faeces and the danger of untreated polyps. Don't ask for a clean out, ask for an investigation of the risks of continuing on this path. A colonoscopy requires that you have a good clean out or they can't see anything.
Usually the treatment to fully empty the bowel involves satchets of an oral lavage that will not be absorbed and clean out most of the matter. Don't move a long way from the toilet whilst that happens. You can treat it as an inconvenience or plan ahead and just relax about it. https://books.google.com.au/books?id=ju ... ge&f=false

I would definitely get a clean out, use probiotics and go back to that gluten free diet. Pears, Avocado, figs,pomegranate seeds etc will all keep the bulk moving through you. I doubt the value of grain based roughage given what you described. Fruit works well but not so well when gluten (and in some circumstances dairy and pulses) is involved.
Your disability should encourage people to investigate so perhaps you need to review your advisor group.

Regards,

Colonoscopy is probably is a good idea for alot of reasons. Altering your diet as you suggest would likely help. Thankyou for your suggestions and any person 50+ probably something you should do too!

Given your level of disability, normally the preparation for a colonoscopy will involve an overnight stay in hospital where the 'clean out' will be managed by the nursing staff.

I have been diagnosed since 1997 but I may have had MS much longer. I believe I started with a clinically isolated attack in 1982. So I may be farther along than you. I am on no drugs for MS except the occasional single tablet of baclofen.

When the results of the biotin trial in France were first announced (I have a secondary progressive course) I bought some medical grade biotin and started making my own capsules. Needing a filler, I used rice bran, which is very cheap due to the North American preference for white rice. The bran has all the vitamin B.

I have been on it since 2 years ago last May. It did affect my thyroid test results, but I did another thyroid test after going off biotin for a week. Watch out with temporarily stopping your biotin dose, because you may trigger a relapse!

I have always taken 300 mg medical grade 100% biotin, at first without filler. That is how I know my gut result is from the biotin.

The result, for my guts, is that I have not had bad constipation for the entire two years, even when I have taken number 3 codeine or dilaudid, for pain. Now, the worst problem I get from codeine is withdrawal if I take it for more than a couple of days. I also had a collar bone reconstruction where I had to take dilaudid, with no constipation problem. Please don't pass this information to any opiate addicts. I don't want anyone taking opiates, or biotin because of anything I said. They'd have to be pretty big risk-takers, but addicts are prone to that.

Most recently my MS neurologist has prescribed biotin 3 per day 100 mg doses, that I have to have compounded by a pharmacy. Because it is not on any drug plan yet, I will keep taking my own caps till further notice.

This stuff really works. For me, it completely solves my gut problems.

My own speculation is that because many bacteria thrive on and make their own biotin, my taking it is very good for whatever my gut currently holds in terms of varieties of bacteria. I have not had a microbiome transplant because it is not available in Canada, except for experiments with cases of hospital borne diseases. If it does become available it would be done by the same person who does colonoscopies. BTW the gut population is wiped out by a dose of antibiotics, and this antibiotic-driven ablation of the gut population may accompany microbiome transplants. It is hard to know what you are getting with someone else's microbiome, but it is probably not as tricky as donor matching for marrow transplants. Make sure the donor is healthy and not overweight, is what I would think.