I don't know what kind  of pain you're experiencing but I take 2 antibiotics daily for 4 years. CIPRO which has a serious risk of tendon rupture-especially at the Achilles heel, and FLAGYL, which I just had to stop taking due to neuropathy in my feet. (Like a numb/pins &needles like feeling)

I would ask your GI, it could be random inflammation.

Your leg pain could be part of a syndrome, or something completely unrelated. Is your pain in the muscles or joints? It makes a difference. Fatigue is a common symptom and anything that causes inflammation can lead to fatigue. For example, my inflammatory arthritis causes fatigue. 

If you were not absorbing your nutrients, fatigue could be a symptom, but you'd also have trouble maintaining your weight. You could have pouchitis, which can cause fatigue. Frequent bowel movements are a hallmark symptom.

Jan

Hi Maxx,

Heavy legs, muscles pain, fatigue could all be part of dehydration as well and not just the 'water' kind. When you are dehydrated you are also low on essential electrolytes such as potassium, calcium, sodium and the rest of their buddies...that can leave you feeling like each leg weighs 1000lbs and is impossible to drag up another step.

It can also cause irritability, cold sweats, general fatigue, weakness, joint pain,  anxiety and headaches along with about a dozen other symptoms that I am forgetting.

If you check the box under at least 3 of the symptoms, start by upping your electrolyte intake...you may try drinking coconut water (I have found it useful although not everyone like the taste and beware of the sugar content...use all natural) 3xs/day...do not forget to drink a large glass of water at night before bed...We dehydrate at night too due to sweating and general bodily functions so you need to feed your body water then too. (Yes, I know, you hate getting up to pee at 3am but that is the price that we pay!)

In my opinion it is the first step...if you do not feel any relief with increased hydration and electrolytes then go to the next step of bloodwork to see if you have an underlying infection. They can make you feel 100yrs old and exhausted.

I alway try the easy fix first...it is cheaper and easier and makes me feel like I am in control. Somewhat.

Sharon

I was diagnosed with fibromyalgia a year after my UC diagnosis and my legs ache at times.

max

i also suggest hydrating.  i drink at least 3 liters of water a day and since i was just in hospital (in qatar of all places, on way home from myanmar) for dehydration i know only too well the leg pain.  cramps, tired, and the symptoms sharon mentioned.  

instead of gatorade, which has tons of sugar in it, i use a powder substance called 'electrolyte fizz' by body tech.  got it at vitamin shoppe.  great for traveling.  

planes get you dehydrated as does heat.  i up my intake whenever i fly and it hasn't been enough of late.  

it water doesn't help then of course pursue an underlying problem.  keep us posted please.

te marie--i too have fibromyalgia.  lyrica makes all the difference for me, as does daily yoga and/or pilates.  still have strange pains floating about, but that's life isn't it?

janet

Yes Janet it is life. We don't like it but it is what it is. I had problems with Lyrica and take Gabapentin for several health problems. 

I mentioned fibromyalgia because it is one school of thought that it follows a major stress in our lives. My diagnosis followed taking high doses of prednisone for UC. 

Thank you everyone for your responses, it sure helps.

As most of you mentioned, I probably have electrolyte dehydration because as soon as I started drinking electrolytes (Emergen-C) I started feeling better. Leg cramps almost gone.

That leads me to another issue that from few days, I am having very watery stools and may be I am not absorbing enough water/electrolytes. I am almost going to see my doctor if it does not get any better. Any thoughts on this?

Btw I don't usually take any Imodium/Lomotil etc because I was doing okay without it. May be its time.

Maxx

maxx--definitely a problem!  here is one thought: diuretics can alter your fluid retention/loss.  i don't understand it well enough to spew out a summary description.  try dr. google.  perhaps you can glean enough info to alter your diet.   if you get totally frustrated w net info (as i was) ask your doctor for a referral to a dietitian.  hopefully your insurance will cover a dietitian who knows about j pouches.    or consult with your pcp.  

glad the hydration helped!!  (and that our info helped you.)  isn't it amazing how quickly one responds?  the cramps are an excellent indicator that you need more fluids.  be careful as dehydration can lead to kidney failure and hospitalization to revive one--i speak from experience.  janet

I think it is time to take a bowel slower. You say you were doing OK, but in reality, you were not, since it appears you were dehydrated and electrolyte depleted. Diarrhea is the leading cause of dehydration, and you can do something about it.

I've had my j-pouch for over 20 years and have always used Imodium to reduce output. The only time I have needed electrolyte replacement was when I was sick with a virus.

Jan

I was doing good in terms of stool frequency & consistency. Dehydration is a newer problem. Do you think, taking Imodium would also help with better electrolyte absorption and dehydration?

Thanks for the help.

Maxx

Yes. Absolutely. Slowing the gut provides more time for nutrients (including water and electrolytes) to be in contact with the small bowel mucosa, improving absorption. You just have to be careful not to slow the gut too much. I took 8 Imodium a day initially, and over time have reduced it to 2 per day. It is an idividual thing, so you need to find what works best for you.

You may have been unconsciously not drinking enough in order to reduce bowel movements. It is fairly common. If you are not urinating several times a day and your urine is concentrated, you are flirting with dehydration.

Jan

Just an update:

Saw my surgeon today, he thinks I have a pouchitis because I am not retaining water. I am scheduled for a scopy for next week, will keep posted.

Thanks

Maxx

I hope your scope finds answers.

I'm assuming your BP is ok. FYI I kept needing IV fluids and was diagnosed with low blood pressure. Ever since I started LBP medication I haven't needed IV fluids.

had my pouch for 2 years.  off and on doing great, except periods when output is 10-15 times and almost debilitating because I don't want to go anywhere.  First I thought about a virus, because of weakness and just not feeling well. Even though we have a jpouch, we still can catch viruses, right?? but now I think about scary pouchitis, which I never experienced.  What are the symptoms for pouchitis.   Don't have a doctor.  Still seeing my surgeon.  I like her so much, because she saved my life, but she works out of the Emory University Hospital in Atlanta and its always a big deal seeing her.  I did look for doctors, but when they don't know what a jpouch is, I don't bother making an appointment.  thank you!

Kemp, we can still get all the GI infections and food poisoning that folks with colons get.

Pouchitis most commonly causes frequency and urgency. It's also usually easy to treat with a couple of weeks of an antibiotic. It's only a big deal if ignored or it won't stay away.