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Hi all,

I have only just joined today and was wondering if anyone had similar problems to me.

I had a total colectomy and J Pouch construction in 2006 after years of ulcerative colitis. I am always tired and about 2 stone under weight. I never feel refreshed when I wake up in the morning and am always tired.

I suppose I am just looking for any tips from people in the same situation as me.

Currently my stools are very watery and it seems that no matter what I eat I always feel bloated. When times are good I only have to get up once in the night but recently its anything up to 5 times. There is no blood or mucus so I am not worried about that side of things.

Ross

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There are several things that you could try.
  • Taking imodium or lomotil to thicken things up.
  • Try Metamucil, Citrucel, or other bulking product.
  • Try an electrolyte replacement product because you might be dehydrated from watery stools.
  • Try gas reducers for the bloating - like Beano (best) or Gas X.
Hopefully others will be along with more advice. Welcome to the site!

kathy Big Grin
kathy smith
I just want to thank Kathy for this post as I have been recently complaining (as if I do not have enough to complain about already Smiler. about bloating myself. I am also unusually tired since jpouch surgery 2 years ago and I never look or feel rested, but I attribute this to never sleeping through the night soundly with accompanying muscle pain. I do not have watery stools and do not think I am dehydrated, but you may be. I am also going to try the gas reducers and electrolyte drinks to see if this helps.
J
Thanks for your replies. I already take loperamide (4 mg 3 times a day) but I'll take a look at the bulking products you mentioned and take on some electrolyte replacement

I've not heard of as reducers before so I'll look into that.

I tried taking yakult again but I found that this dampened my appetite - I'm not sure if I am slightly intolerant to milk.
R
Hi Ross,

Probiotics can help though I think it is important to take the best one.

VSL#3 is available in the UK and you will be able to get it on prescription if you have a kind/friendly GP. I would suggest you see your GP and explain the problems you're having and ask him/her if they would be willing to prescribe VSL#3 to see if it will help. (You might consider moving practice if they won't!!)

The loperamide should be the most helpful but if this doesn't improve it may be a sign of some other issue. How long have you had your current symptoms and do you get an annual scope?

Hope things improve soon for you
Dave
D
Re VSL in UK

It may not be the question of if your GP is willing to prescribe - local formularies exist to guide GP prescribing and in my area VSL is allowed for Adults with chronic pouchitis and children with IBD. So the advice is to get a diagnosis and it could be the underlying problem with constant watery stool? You may then have to ask that the matter is checked because the initial response is likley to be no because it is not prescribed for other conditions like irritable bowel althoungh many patients will request it. Not many GPs will know about pouches? It has to be better to discuss the issue and not simply change doctors if you are happy otherwise?
N
Also consider this will likely be a trial and error process. Story of our lives in here!

For instance, I have the same issues you do. I recently started a very consistent regimine of immodium (2 tabs/3x's per day) and GasX (2 capsules/2x's per day). I have to play with the immodium dosage as sometimes 3 times is too much, sometimes 2 times is not enough.

For me, Metamucil is a nightmare. It does wonders for some people but, for me, it causes cramping, urgency and tons to bathroom trips.

I also use a low carb diet and discovered, accidentally, that it significantly decreased my bloating and urgency. I started this as a weight loss plan, but learned I simply feel much better without "white carbs". I do eat whole wheat so I am not missing out on the joy of breads and pasta. Smiler I've seen a few other people post in here about it, too. I have also read that a low carb diet reduces bloating for people....not just us digestive-challenged folks. Therefore, I do believe there is something to it.

You probably should also look into blood work to check for deficiencies. Add vitamin and mineral supplements, as needed. You might also consider the more easily absorbed multivitamin Forvia that is specifically for people with digestive/absorption issues. There are tons of posts in here about it if you search on Forvia. And here's the link to the company's online site: http://store.inovera.com/ I will say I have not tried it myself yet, but I will be ordering it shortly. I'm new here, too, so I just learned about it recently.

I hope you find some relief soon. There is hope and the folks in here are an incredible resource. Welcome and good luck!
K
Thank you to everyone who has posted - Its comforting to get advice from people who are in the same or a similar position as me.

I'll take your advice and look into the items you suggest.

I only saw my consultant last week and he's not concerned about the loose stools. I asked if I should have a scope but he said he doesn't think its necessary (I went private so I don't think this was said due to cost). I had a full set of bloods and it came back that I was deficient in vitamin D - in his words everything else was fine. I went for a bone density scan yesterday as I was taking prednisolone for a 2 year period before my ops in 2006.

I'll see what result comes back from that scan, I am seeing my consultant next week to discuss how to up my vit D levels. Its annoying as I have had a few weeks here and there where I have felt so much better and going to the toilet less (more formed etc) and then I have had a fairly poor few months.

I am underweight, at 6ft I only weigh 9 and a half stone which is over a stone less than what I should weigh. I was wondering if most people who have had this op are also under weight (I see in Kia's post that this may not be the case). I was fairly thin before my problems so perhaps its just in my genes although I was about half a stone heavier before.

My History:
Diagnosed with Ulcerative Colitis in May 2000
Prescribed many different drugs including Pentasa, Azaphiroprene, Colifoam and Prednisolone
Total colectomy mid 2006
Pouch construction end 2006
Pouchitis a few times since
R
Easier to do quick cut and paste from wiki:

Clostridium difficile (pronunciation below) (from the Greek kloster (κλωστήρ), spindle, and Latin difficile,[1] difficult), also known as "CDF/cdf", or "C. diff", is a species of Gram-positive bacteria of the genus Clostridium that causes severe diarrhea and other intestinal disease when competing bacteria in the gut flora have been wiped out by antibiotics.

C Diff is what you hear about on the news from time to time shuting hospital wards!

Re: VSL#3 - it is possible for a GP to prescribe anything they feel is suitable for their patient on health grounds irrespective of local precscribing guidelines.- and I do think it is worth going to discuss your symptoms with your GP in any case. (The suggestion of moving practice was meant to be a little tongue in cheek).

Hope you sort things out soon
Dave
D
I had the results back from the bone scan and all is ok. I saw my consultant yesterday and he said I was very low in vitamin D so I will need an injection and then a course of tablets. I requested this in liquid form for better absorption.

I mentioned VSL3 and he said "oh yes that is something that other patients of mine take and benefit from" - I'm sitting there thinking why have you never even mentioned it then!! I have said time after time that I feel there is a bacterial issue yet I have not been offered VSL3.

He said he wants to see how I am after the course of vitamin D before prescribing me VSL3 but has no problem with me giving it a try.

I am learning that you can't just leave your care in the hands of your consultant, joining this forum and taking advice from its members and doing some research myself has made me feel a lot more confident that I can feel better than I do now.
R
The problem with starting two different treatments at the same time is that if there is improvement, you can't be sure which treatment was successful. Vitamin D is cheap and easy to provide, and it is fairly reasonable that treating it might improve fatigue and pain levels. VSL#3 is very expensive, and could even cause new symptoms (excessive gas in particular). So, unless you have a good idea it would help, it makes sense to me to wait. If there really is a bacterial issue that was significant, I would think a short course of antibiotics would rule that in or out, then you could follow up with the VSL#3.

However, if C. difficile was suspected, then only Flagyl should be prescribed. Cipro or others might make it worse.

But, I doubt that the watery stools were caused by vitamin D, so I'm not sure why the doctor thought that would help it. Seems like separate issues.

Jan Smiler
Jan Dollar
Last edited by Jan Dollar

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