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J-Pouch Joint Pain?

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Posted 8/11/2016 3:52 PM (GMT -5)
That story is my nightmare! My Gynecologists husband has UC and had a hip replacement at 40 from prednisone use. I'm 38 and as soon as my hip started hurting her husbands story popped in my head.

I'm like Lara in that scenario, I'm in denial. I haven't gone to the Dr because I'm terrified of needing more surgery or medication. But sounds like now she is in a lot pain.

Blksteeda I sure hope stopping the antibiotics helped you! And KS I hope they have a solution to get you back on the course without surgery! ita sad when pain keeps us from doing things we love!
Posted 8/15/2016 5:47 PM (GMT -5)
Blksteeda,

How is the pouchitis and hip pain?
Posted 8/16/2016 1:06 PM (GMT -5)
it's been 8 days off of the antibiotics, while the joint pain has reduced, it's not completely gone. I definitely feel it in both hips, more on the left side. My pouchitis symptoms have crept back in as well. BM's are back to watery / mucus, some gas returned and bathroom trips have slightly in creased. The Butt Burn has come back a bit as well. I need to let my surgeon know and he'll probably want to scope my pouch
Posted 8/17/2016 7:21 PM (GMT -5)
I saw my surgeon today. We feel it's a combination of the pouchitis and antibiotics causing the joint pain, specifically the Flagyl. He has had me stop the Flagyl and trying cipro twice a day for a week and if better reduce to once a day. If it's the flagyl / pouchitis causing the joint pain, then the cipro should make both feel better.
Posted 8/18/2016 7:35 AM (GMT -5)
If you need a little extra help then Pepto does help a lot with pouchitis, I'm able to get off of antibiotics for a few weeks every time I go on Pepto Bismal.
Posted 8/18/2016 1:42 PM (GMT -5)
I can't believe you're going through all of this. Seems like long-term antibiotics are never the solution. I guess I would be trying to find something else that works, be it mesalamine enemas, humira, or whatever. :( I can't imagine dealing with this after already going through so much.
Posted 8/18/2016 8:47 PM (GMT -5)
my surgeon did bring up about long term antibiotics, specifically the Cipro and the chance of ruptured Achilles Tendons. I get the feeling if this round doesn't work it's time to scope the pouch
Posted 8/19/2016 11:33 AM (GMT -5)
I definitely think you need to have it looked at & you probably need biopsies. You need to get to the bottom of this. it's been going on too long. Plus, the more you know, the more options you have - and you can target the source of the problem. When do you see him again? What's the goal? He thinks maybe you will finish this course of Cipro and be 100% indefinitely? Seems like you've tried this already and you ended up back at the same place very quickly. why would it be different this time? I REALLY hope it is!!!
Posted 8/19/2016 11:50 AM (GMT -5)
I see him in the middle of October or if I have issues I can always see him sooner. Both antibiotics did cause the pouchitis to subside both times and both times it came back when stopping. We want to see now if one will help the horrible joint pain I'm experiencing. I have a feeling the pouchitis will come right back when done but I'll give this one more shot, especially for joint relief. I don't want prednisone to help that which my GI offered.
Posted 8/19/2016 12:55 PM (GMT -5)
That really stinks. I am so sorry. You seem like you're in good spirits about it. I guess you can figure something out after this course. Hopefully you get better and stay better for a long while - that way the joint pain will subside. I think if I were in those shoes, I'd want to try to figure something out other than antibiotics or steroids. What about Uceris or Entocort, can those help, but still they are technically steroids.. What about rectals? Is that an option?
Posted 8/29/2016 8:16 PM (GMT -5)
How are you doing G?
Posted 8/30/2016 11:14 AM (GMT -5)
I'm still on my course of Cipro, 500mg a day. I was supposed to cut it down if I started feeling better. The pouchitis for the most part is under control, virtually no nighttime accidents etc...BUT the joint pain is still horrible at times. Virtually everything from my lower back down is so sore and achy. Since the cipro isn't helping the joint pain but seems to be controlling the pouchitis, I wonder now if cipro can cause joint pain as well.
Posted 8/30/2016 8:10 PM (GMT -5)
How about trying Augmentin or Xifaxan?

I can go a couple of weeks with just Pepto Bismal tablets and no antibiotics. Might be worth a try to see if it is the pouchitis or the antibiotics.
Posted 9/13/2016 7:42 AM (GMT -5)
How are you feeling? Any improvement in your joint paints?
Posted 9/13/2016 4:43 PM (GMT -5)
I finished the latest round of cipro and as I guessed, the pouchitis symptoms have come back. BM's are very heavy with mucus and runny. The butt burn has also returned to the point my skin slightly bleeds. The only odd thing is which I'm surprised about is that the nighttime accidents have virtually disappeared. I think I had one in the last 7 days and I haven't taken any meds to control it. I still have some joint pain, mainly in my legs and more prominent in my left hip down to my left thigh. I'm trying strictly VSL3 DS now to see what happens over the next week or so then will probably have to call back my surgeon. I'll need to try the pepto bismal trick
Posted 9/16/2016 4:59 PM (GMT -5)
Ks1905 how are you doing? Did they decide if you need surgery for your hip?
Posted 9/17/2016 12:53 PM (GMT -5)
I have Osteonecrosis of my Right Hip, only thing that will fix it is a hip replacement. I have to find time to have the surgery, I'll be out of work for a few weeks and won't be able to drive for a while.

I had them also x-ray my left hip because it is hurting. No structural issues with the left hip, so that's good. The left hip is hurting because I'm putting extra pressure on it compensating for my bad hip; also my knees are hurting because of it. I'm walking with a pretty bad limp.

I'm kind of happy because it's not RA or my pouchitis isn't causing the pain so if I get the surgery done than it's over and done with, hopefully a 1-time thing and not an ongoing issues.
Posted 10/11/2016 10:12 AM (GMT -5)
Just thought I would update, I'm in the middle of another antibiotic treatment. My surgeon had me do two weeks of 2 cipro pills (500mg total). Now I'm taking one pill a day for two weeks and I'm about one week into that. After I will be doing one pill every other day for two more weeks then we will be scoping the pouch to see what's going on in there. I do feel good on the cipro and issues are minimal at best. Maybe a nighttime leak here or there but nothing major. I still do have bad hip pain on my left side. Sometimes it will lock up so bad I really have to limp till it gets loosened up a bit but still hurts regardless. Every step I take the impact goes right to the sore area. I have an appointment with my GP next week to see what he can do for it. Just sitting here in a chair typing this, if I move that leg even the slightest I feel the pain right in the joint and down my left thigh. I'm hoping we get the scope down sooner than later so I know what's really going on in there.
Posted 10/11/2016 11:52 AM (GMT -5)
Gordon,

I'd recommend making an appointment with an Rheumatoid Arthritis doc to check out your hips, you'll need X-rays to diagnose what is going on.

My GI convinced me to go to an RA due to pain in my hip and it occasionally locking up. The RA said it wasn't arthritis and it was necrosis of my hip so he sent me to a surgeon and now I'm just waiting on getting my hip replaced. But you could be having a reaction to medication or arthritis but you need to get this diagnosed. I waited too long and now I'm in a lot of pain and other parts of my body are starting to hurt. I'm dreading another surgery and recovery time but I can't keep living like this.
Posted 10/11/2016 3:57 PM (GMT -5)

ks1905 said...
Gordon,

I'd recommend making an appointment with an Rheumatoid Arthritis doc to check out your hips, you'll need X-rays to diagnose what is going on.

My GI convinced me to go to an RA due to pain in my hip and it occasionally locking up. The RA said it wasn't arthritis and it was necrosis of my hip so he sent me to a surgeon and now I'm just waiting on getting my hip replaced. But you could be having a reaction to medication or arthritis but you need to get this diagnosed. I waited too long and now I'm in a lot of pain and other parts of my body are starting to hurt. I'm dreading another surgery and recovery time but I can't keep living like this.

I've seen an RA long long ago and I can't even remember what for honestly. I'll see what my GP says. The pain has become very localized and is definitely in the joint itself.
Posted 10/11/2016 4:06 PM (GMT -5)
The ongoing ramifications of what our bodies went through seems never ending to me some days! appears to be my hip pain was osteoarthritis, they think. I also now have osteopenia so I started osteogenic loading exercises to help the osteopenia and it turns out it has really helped my hip! It had gotten so bad I was having trouble getting in and out of the car and couldn't sit crossed legged on the floor. My pain is 99 % gone and my range of motion has greatly improved.

I know in Keith's case this wouldn't help at this point but for others depending what your diagnosis for hip or knee pain is this has really helped me a lot. Only bummer is you have to find a clinic or center that has the machines for these types of exercises.
Posted 10/11/2016 4:18 PM (GMT -5)
I have some good days and some awful days, the surgeon told me that the good days are from my bone wearing off and creating less friction in the joint but the bad days are getting worse.

My hip has become so immobile that I can't even cross my leg over my knee to tie my shoe.

I've heard that much of risks decrease as we get about 36 months from the last dose of steroids (prednisone). It's been 3 years this month since my colectomy and I tapered off Prednisone completely 4 months later.
Posted 10/11/2016 7:38 PM (GMT -5)
That is interesting about the 36 months. I was wondering about that because I was trying to decide how long I would need to keep my appointments with this osteogenic center. I'm at 18 mos since my last dose.
Posted 10/20/2016 5:46 PM (GMT -5)
saw my GP today, he'll be sending me for an MRI on my left hip since that's the one joint that's painful every day to some extent
Posted 10/21/2016 12:46 PM (GMT -5)

cupcakespinkgal said...
That is interesting about the 36 months. I was wondering about that because I was trying to decide how long I would need to keep my appointments with this osteogenic center. I'm at 18 mos since my last dose.

CCG,

My aunt is a discharge nurse at a hospital that does orthopedic surgeries and she asked one of the surgeons but this is something that I want to get a definitive answer from my Orthopedic surgeon.

I'm still waiting to find out when I can get my surgery scheduled. I am 6 weeks out from my last dose of Stelara. They told me that I need to wait from 8-12 weeks from my last dose. I am waiting for some clarification from them since I take a double dose of Stelara and would the larger dose increase the length of time that I need to wait before surgery.
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