Perhaps pouch related. Or possibly IBD related. Chronic low back /upper buttock pain that is worse at rest and improves with activity could be spondylitis. I have the form called enteropathic arthritis. I got a lot of relief with biologics. All my labs were negative for RA or other diagnoses. More info here:

http://www.spondylitis.org/Could-I-Have-Spondylitis

Jan

Thanks Jan for the information. I took the quiz and it doesn't seem that I have IBD.  I'm sure that seeing a doctor would be a better indicator of what the problem is. I'm on remicade and have been for over a year now, so much for that. Funny, last night I couldn't find a position that didn't make my back ache and some time during the night the ache went away. Getting ready for bed now....I'm dreading it, but hope that I can get some much needed sleep. So I'm guessing that the next step is to see a doc but hoping that this new thing will go away on it's own. No such luck, right? 

Back pain is incredibly common with or without a J-pouch. Sometimes it's very treatable, sometimes it's more challenging, and sometimes it turns out to be pouch-related. Yes, it's probably time to visit the doctor. 

Curious, do you have any idea of how they would treat it if it is my pouch, and also, do I go to a GI or an orthopedist? This morning and during the night I was absolutely fine. 

I wouldn't start out assuming the pain is pouch-related (or IBD-related, which is different). A good internist (or a great gastroenterologist) could help get an assessment started, rule out some things, and make appropriate referrals. I'd be surprised if an orthopedist turned out to be a good choice, unless you need a vertebral fusion. A neurosurgeon may be a reasonable consultation, once a medical evaluation has been done. Good luck!

Yeah, I saw my primary MD first after more than 4 months of this pain while sitting and at night. I could not even roll over in bed. I had to sit up in bed in order to turn. He ordered x-rays of the lumbar spine and sacroiliac joints, then put a referral ot rheumatology. In the past, I had seen an orthopedic surgeon and a podiatrist for knee, hip, elbow, and heel pain. Turns out they were all related to my IBD related disease. Now I also have spinal stenosis in my neck.

But, the thing is that low back pain is exceptionally common in the general population and it is mostly due to poor posture and/or poor lifting mechanics causing muscle strain. The difference is that this sort of thing generally improves over time. Inflammatory spinal arthritis does not improve without treatment.

Jan

Thanks, Jan, sounds like you've been through a lot and I'm sure that you always have a smile on your face.

Today, I didn't have one bit of pain and I was sitting a lot. Let's see what happens tonight. I think that I'll wait a bit before going to see my doctor, how much worse could it get, right? Of course if the pain becomes intolerable, I'll go sooner rather then later.

Sounds like a good plan. I try to avoid the doctor as much as possible!

Jan

Hi Mema, 

Seems that when we get rid of the pain in our guts we receive a pain in our backs...not fair.

Have you seen a chiropractor? Or something similar? 

A couple of years ago I was in excruciating pain, couldn't even climb the stairs to my hotel room (annual vacation with hubby was a weeping misery...Went to Greece and the whole hotel was on a hillside!) or make it to the dining room. I was icing my knee (first ever knee pain), couldn't swim etc...horrors...after dinner, a young guy took pity on me, gave me a seat by the bar and asked me what was wrong (I had ice packs on both knees)...told him that I didn't know.

He introduced himself as an Ethiopath on vacation...the next day, he came to my room, turned me into a pretzel, cracked my sacroiliac back into place and the pain in my back, knees and miraculously disappeared. 

I see him here whenever it gets bad. Sometimes, especially if the pain comes on suddenly, it is a  displaced vertebra which usually throws my alignment out and my knees suffer...I have learned to sleep with a body pillow on my right side with my arm and leg thrown over it to reduce the tension on my lower back. 

I have a personal checklist. 

Starts with chiro or Ethiopath first, if that doesn't help then x-rays or scans, a rheumatologist if needed and finally tears and meds.

Have you tried floating in a hot bath? Does it give you any relief if you do?

Exercise is my friend. The more I do the less I hurt but that is not for acute pain but chronic inflammation...acute pain needs to be diagnosed before you start exercise.

Evidently, there are always the internal causes with us, inflammation, pouchitis, various gut problems etc...if you are coming down with a flu it could also cause severe back pain...

Just throwing ideas out here...

Let us know

Sharon

Thanks, Sharon, for all your suggestions, I do appreciate your caring and support.

The pain that I have is not the typical pain. When I  have a back problem it's usually low back pain around my hips, similar but not as bad as the pain you described, and usually lasts for a few days and then it's gone. This pain is different, it's a radiating soreness that doesn't affect me like the above. It's more of a nagging and very uncomfortable feeling that might start during the day or at night. It will wake me up in the middle of the night, or if I go to bed with it I can't find a place for myself it's so uncomfortable, and it's not in one spot it radiates up towards my arm pits. I didn't have it last night and very little during the day. 

I'm in a wait and see mode right now. I'll definitely keep  you posted.

Judy

Mema,

I am going to ask a few 'tough' questions...here goes;

When did this pain start? Had you ever experienced it before?

Does the pain go past your armpits to your arms?

Does your jaw hurt when it happens?

Are you out of breath or exhausted lately? (I know with us that is a trick question)?

Do you get the 'dizzies'?

Any nausea? 

Any pressure on your chest or difficulty breathing?

If you answer yes to 2 or more of these questions, please go to ER. Do not hesitate to call someone to come with you. 

I do not want to scare you, but for us girls, very often, we miss the warning sign of what could become a cardiac issue...it is the words 'nagging', "wakes me up in the middle of the night", "armpits", "comes and goes"...etc that have my antennas up.

When was the last time that you had an EKG done? Now may very well be a good time to do one. 

You are right that back pain radiating up, is less common for us than back pain radiating down or through the hips...

Like I said, I am not trying to scare you but I would rather you rule out the slight possibility than miss something important.

PM me or let us know if or when you have it checked out.

Sharon

Thanks so much for caring, but I'm pretty sure that it is not my heart. When I said that the pain is up to my armpits, I was trying to give you an example of how far the pain went, not necessarily under my arms. 

I had an EKG not too long ago and it was fine. I work out 3 days a week, and I have not had any problems losing my breath or getting dizzy. 

I will definitely let you know what the doctor says when I go to see her. As yet I have not made an appointment, but I will eventually. 

Thanks again for your list of questions, you're sweet.

Ok, so sorry for the sudden panic, I realized afterward that I may have been a bit 'too much' but the armpit comment scared me...especially since over here, there is a huge campaign going on to sensitize the public to cardiac problems in women and the fact that we do not have the same sort of warning signs as men...(the most recent commercial shows a healthy young woman in her 30's dancing with an older, obese man who is sweating and out of breath while she looks great...the voice over talks about the % of heart attacks, warning signs etc...and then you see the young woman hit the floor...which is when they tell you about 'women's' heart attacks and the warning signs...One was the pain in the armpits, up the side of the neck to the jaw...)

So relieved that that is not the case.

Just keep us posted.

Sharon

Not a problem, Sharon, I appreciate your kindness and sensitivity. 

You know, strange, but I haven't had a back ache for a few days now. I will definitely keep my eye on it though. Thanks again.

Judy