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Hello everybody! I am new to the site. I had my surgeries for UC in the spring (Colon remove with bag) and summer (take down) of 2017. I have a J pouch and I’ve experienced Poichitis ever since.

I’m still struggling every day. I wake up anywhere from 3 to 7 times a night to go to the bathroom. During The day I have to go at least 10 to 15 times. I have pelvic pain, The urge to go and push, bleeding, “dry heaves”, followed by severe pain in my lower back to feet.

I’m currently on Cinzia 400 per month, prednisone five MG per day to manage it. It’s not seeming to help and I’m miserable.

It seems that the Pouchist symptoms and the joint/leg pain are going hand-in-hand. After going to the bathroom I experience intense joint and leg pain. Also with severe rectal pain, itching and burning. 

does anybody else experienced this? If so do you have any tips or tricks suggestions?

currently I found that lidocaine cream 5% helps a little bit.

Thank  you I appreciate your response!

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I’ve tried Remicade, but after becoming pregnant I had to stop at trimester 3. After delivery, I tried again but became unresponsive to it.

I also tried Canassa, a suppository.

I have been diagnosed with RA, the doctors told me it was probably  caused collaterally from the UC.

Im on a bunch of other meds as well, but those are for other problems.

I had developed rheumatoid arthritis after my final surgery in my hands/wrists/fingers. Totally horrible but I have been on Humira for a few years now. It helps with both Crone’s and RA. It doesn’t cure but stops it from getting worse. But.. I know how you feel, I would also get those horrible cramps in my legs to the point of having to be carried out of bed. My ass doctor would put me on a small does of prednisone which instantly helped. Just make sure if you take them it’s a quick dose and you keep some handy in case it happens again.

I am sorry to hear about your suffering! Joint pain is pretty common in the IBD community, although the colon is gone the disease is still in us, there is no cure yet. I believe the IBD is attacking your joints since its pretty common in the IBD community.

There are other biologics to try, maybe Stelara next? I would definitely recommend to do stretch exercises, I find that helps a lot with just about everything. And definitely reduce stress; some tactics I do with that are: making a list in my head or writing down the things i am grateful for and I think about my accomplishments; that helps me reduce stress, it adds light in you.

@Pooper posted:

I had developed rheumatoid arthritis after my final surgery in my hands/wrists/fingers. Totally horrible but I have been on Humira for a few years now. It helps with both Crone’s and RA. It doesn’t cure but stops it from getting worse. But.. I know how you feel, I would also get those horrible cramps in my legs to the point of having to be carried out of bed. My ass doctor would put me on a small does of prednisone which instantly helped. Just make sure if you take them it’s a quick dose and you keep some handy in case it happens again.

Ass doctor?! You are soo funny! I love it! I have never heard that XD I love your humor!!! XD

Pooper & Lauren of Emerald City:

Thank you so much for your advice! It’s comforting to know I’m not alone! For the last 2 weeks I’ve been up and out of bed during the night around 20x’s! It’s so exhausting.

I recently started taking a probiotic and Magnesium. Next time I’m at the doctor, I’m going to ask about looking in to my Potassium levels. I recall they have been low for quite a while. Unfortunately, you can only get it by prescription, at least that is what a Pharmacist told me.

One other thing I started to take again is Kratom (Maeng Da, Red Vein) definitely helps with just about every symptom I have. Tastes like shit, but sooooo worth. it’s tolerable if taken with apple juice. My pain is highly deminshed, gut cramps and urges are lessened exponentially, and my energy and Arthritis pain are so much better. And I have very little of that strange joint/muscle pain. I can actually live a Little bit normal.

Of course the other thing that helps is a Jacuzzi bath with essential oils.

@JPouch_2016 posted:

Pooper & Lauren of Emerald City:

Thank you so much for your advice! It’s comforting to know I’m not alone! For the last 2 weeks I’ve been up and out of bed during the night around 20x’s! It’s so exhausting.

I recently started taking a probiotic and Magnesium. Next time I’m at the doctor, I’m going to ask about looking in to my Potassium levels. I recall they have been low for quite a while. Unfortunately, you can only get it by prescription, at least that is what a Pharmacist told me.

One other thing I started to take again is Kratom (Maeng Da, Red Vein) definitely helps with just about every symptom I have. Tastes like shit, but sooooo worth. it’s tolerable if taken with apple juice. My pain is highly deminshed, gut cramps and urges are lessened exponentially, and my energy and Arthritis pain are so much better. And I have very little of that strange joint/muscle pain. I can actually live a Little bit normal.

Of course the other thing that helps is a Jacuzzi bath with essential oils.

No problem I definitely know what that is like and so does other 9 percenters lol. I love my 9 percenters, we gotta stick together

For Potassium: Some low dose pottasium medications are over the counter, they are supplements in the vitamin section.

Potassium Food and Drinks: potatoes, orange juice, pedialyte, gatorade, potato chips. fruit juices, vegetables/fruits.

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