Just curious if anyone has any type of leg pains that they could associate with pouchitis?

I'm not sure what you mean by leg pains.

But I get achy, esp in my hips and almost feel like a restless leg syndrome. This is occasional- I was under the belief that it was the arthritis like symptoms because our body still has an autoimmune disease.

I have an odd leg pain in my thigh, but I think mine is associated to having a fistula.

What is your leg pain like? Where is it?

Oh boy, yes! Look at my General Discussion thread "my achey breaky...body! Anyone else feel like they're 110 years old?" Yowch - I ache.
I got lots of interesting feedback and tips there.

HI Mindi,

Yeah I get them. If you have been on steroids for a long time it is probably due to that

Take fish oils. I take twelve a day and my sore joints have nearly gone

hope that helps

Does anyone get a feeling that part of your leg has gone numb every now and then? It is as if it is freezing cold and you can't get it warm.

12 fish oil capsules a day?! Blimey!! Isn't that poisonous? I thought you could OD on it. I just bought super-strength ones today, and the dosage there is 1-2 a day, or twice the dosage for "specific needs". Well, if it has cured your joint pains I'm tempted to join you and just guzzle the things! Here a lot of people take seal oil and claim it's even better than fish oil. A friend of mine who has MS swears by the stuff. But I can't see many people outside northern Scandinavia being comfortable with consuming seal products.

Hi All.

Could anyone advise me here?

I take Boots brand high strength cod liver oil 1000 mg capsules once per day. I'm going through a praticularly nasty flare of fibromyalgia (which I'm sure is connected to the gut problems I'm having at the moment) and wondered about whether I could double the dose? I would welcome anything that would get me moving without pain again because the pain meds I have don't even touch it!

I also take OTC probiotics because when I was taking VSL#3 for my pouchitis I found out quite by chance that it also helped to control my fibromyalgia, but I'm not sure how effective probiotics are now that I don't have anywhere for them to colonise?

Any ideas out there?

Shell

Hi Shell, The cod liver oil bottle in my fridge says 2500 mg per day as the max dose. Are you taking 2 x 500 mg? If they're 500mg capsules like the super strength ones I'm taking, you can up the dosage to 5 capsules a day.
BTW, I was tidying up old paperwork at home, and found some notes I took at a course on coping with UC. My GI doc there recommended seal oil. I'd forgotten that. Maybe I'll start on some when I finish the ones I just bought. As for probiotics, I thought they were effective for ostomates as well since some strains release in the stomach while others survive to the intestines. I take Bio-Life's Bio-Dophilus ones and there's no doubt in my mind that they work.

If you are on Cipro for the pouchitis, that could be the cause of the leg aches. Back in the day when I was sure I could get off Cipro and tried every six months or so, I always got horrid leg cramps the first two weeks back on it. They got so bad I couldn't sleep (and I can sleep next to a jackhammer) and had to take hot baths to relieve them.

Thanks Soph,

Actually the capsules are 1000 mg of cod liver oil in each one, so I could double the dose as that would give me 2000 mg per day. Would you recommend taking the full dose at once or splitting into two doses ie: one in the morning and one at night?

I am taking a multi-billion probiotic (claims to have at least 5 billion live bacteria) that has 4 different strains in it at the moment, which I know is just a drop in the ocean to the VSL that I was on when I had my j-pouch, but it's comforting to know that they may be doing some good even though I have no "storage space" for them to colonise any more!

Thanks again.

Shell

Hi Shell,
I don't think it makes any difference whether you take the tablets all in one go or spread out. And I reackon you could get away with 3 capsules so you get the full dose. It's only 500 more than the extra dosage recommended on my bottle. I'm convinced that probiotics are good for your whole system, not just the colon. And when they're not as expensive as VSL, we may as well take them - it's not like we're throwing lots of money out of the window.

I would actually split up the dosage. I was told by a doctor that vitamins and the like can go through your body quickly and that's why it's a good idea to take a couple dosages throughout the day and keep it in your body better. Just a thought.

Yes, I have leg pains and have had them basically since surgery, 1994. The pain is in both legs but not always both at the same time. Could be left or right leg, or both legs. Feels like they are heavy and feels like they are swollen, but they are not swollen. Pain is in the soft tissue on top of the upper legs and can go all the way down to calves and ankles. Seems to be a pre-cursor to dehydration. This is something that is very difficult to explain to a doctor since it makes no sense to them. Have been told, after explaining the above, "Don't know what that is, good luck with that." Hence, never gone back to that doctor. Yes, I was on heavy steroids before surgery. Does anyone recommend a web site to visit regarding the side effects of Predisone?