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Hi,

I too suffer from a terrible back ache which I am convinced is related to my pouch.

I have not had much luck in treating this problem.

The main problem surrounding this issue (in my case) is the majority of doctors do not believe there to be a connection to my pouch, even though all tests for a physical problem (herniated disk, etc.) have been negative.

The only medication that has worked for me is prednisone.

I would also like to see how others deal with it.

Thanks,

Solomin
Pain can be perceived in some crazy places. I think the key is trying to find a more specific cause (e.g. pouchitis or a sinus) so it can be properly treated. This is easier if your doc is convinced of the relationship between the back pain and your pouch, since back pain is extremely common in the general population. What seems to indicate the connection to your pouch?
Count me in this issue

I am convinced mine is pouch related.100 %

I do have medical back history but this pain is not Disc related.I do reflexolgy and my pain points to my pouch but here is a Thought also
Adhesions.Adhesions will NOt always show on film.

I have from what I was told because of passed surgeries bad adhesions.

My pain ia bad esp in AM Passing stool relieves it.
I do also have history of fistula.

going steady with my heat pack
Cassiecass
My chronic low back pain is sort of pouch related, but more specifically, IBD related. It took 20 years of various symptoms that were treated individually, but then my primary doctor finally sent me to a rheumatologist after 6 months or so of chronic low back/upper buttock pain that was worse during the night and in the morning, or after sitting still for an hour or more. Diagnosis: enteropathic arthritis, a spondylitis related disease, similar to ankylosing spondylitis. I responded well to NSAIDs but could not take them anymore due to side effects. I am much better now that I am on biologics (now Simponi).

It is tough to diagnose because everything (I mean EVERYTHING) was negative.

Jan Smiler
After investigating my back pain over the years when I had UC and after I have found out the following. I have regular arthritis in my lower back, have fibromyalgia, when my UC and IBS flared plus now when I have j-pouch problems all cause me lower back pain. This has been verified by my my rheumatologist, chiropractor, x-rays and many years of having back pain. My back pain gets worse when I have j-pouch problems.

We are all different but one thing we have in common is they did a lot inside our abdominal cavity while we were under the knife. If you are having problems where you didn't have them before I would guess that they are related to the surgeries. First you need to see your doctor to investigate the reason(s) you are having back pain. There can be one cause or multiple causes. It does seem coincidental that your pain started after the surgeries so I bet you are right in making the connection to them. I hope you find relief.
TE Marie - sounds extremely familiar. I too have verified osteoarthritis in my lower back, and am being treated for fibromyalgia. Jan and I have talked extensively about the possibility of enteropathic arthritis because tests are negative for all but the mechanical arthritis, but my rheumy will not go along with it. In the meantime, occasional NSAIDs, activity, stretching, and Lyrica (for the FM) have really helped.

Steve

I'm suffering with a back ache too and wondering if it is pouch related. I was up most of the night last night with a deep ache that starts in the lower back and radiates upwards. It's not a pain, it's an ache and it will wake me up, that's if I can fall asleep.  

When I woke up this morning most of the ache was gone, but it's now coming back again.

What kind of doctor should I "start" with and any idea what it could be other than arthritis?

I have, had and have back pain again...Blinding pain to the point of vomiting and tears...I had been able to manage it with Nsaids (Ibprophene, naproxin and Robaxin), muscle relaxants and prescription pain meds (Tramadol, codeine..) but nothing touches the pain, it just makes me woozy...

I have 2 kinds...1 is the chronic sacroiliitis that my rheumy says cannot be 'fixed' only managed. For that I get 1700mg of Nsaids, Tramadol and a gun to shoot myself with if it gets any worse! (water pistol only)

The other is the darned result of a slip and fall last August...I did a massive, flying spitz...ended up landing with one leg bent backward under my body and the other out straight...dislocated everything from hip down to big toe.

Now my knee refuses to stay in, the tibia pops out and there is something in the hip area that is out and pinching something else...darn, I needed this like a hole in the head. I have dreams of hanging upside down by the ankles and getting everything to pop back in...just don't know how to get it all to stay put once it is all back in...

Emptying my pouch helps certain pains but not all...I am wondering if the surgery, adhesions and trauma have something to do with all of our pain...inflamation? 

When you find and answer to it all, let me know.

Sharon

Thank you both for replying back to me. I'm hoping that it's not a leak in my pouch, that's all I need now.

You're so funny, Sharon, at least you haven't lost your sense of humor! 

My back pain doesn't sound as painful as yours, but it's not fun especially when I'm trying to sleep. 

What's worse for me, is the horribly sharp and searing gas pains that makes me run to the bathroom for relief. I was at the movies today and my stomach started to growl so loud I'm sure that the entire movie theater heard it. Then I have to wait to get at least five terribly painful stabs and at that time I can be somewhat sure that it's time to go to the bathroom. I hate this so much and don't know what to do about it. 

OMG Sharon!  You had a horrible fall.  I fell too many times, on concrete, that my doctor is making me use a cane.  I hope you aren't going to make falling a habit!

 

Mema,

Have you ever tried a chiropractor?  I have several causes of lower back pain, including arthritis, and my chiro helps when things get really bad. I take hydrocodone and tylenol every day so am sure it is helping there too.

I am emotionally attached to my Ethiopath at the moment...he has golden hands and has managed to put things back in that I didn't know were out...or that could even move...(fine, he is cute as a button too and he smells nice...added bonus )

Some days I can actually walk strait and without most of the limp after I see him...I am just terrified that he is more habit-forming that Tramadol

Chiro, Ethio, Osteopath...they are crackers...and I need them all...

Mema, if you do not have osteoperosis or osteopenia then you can be cracked...if not, it is not advised...wouldn't want you to hurt yourself more.

Does your pain respond to massage? Heat? Cold? Stretching...sometimes the things that help to relieve the pain are indicators of what our pain is...

Try heat and massage first or a hot bath or hot water bottle...if it helps then it may be muscular, cold helps with inflammation.

Worst case senario, find yourself a good looking massage therapist! If he doesn't help the pain at least he gives you something else to think about for a while.

Sharon

 

Mema,

I have a grain-filled "snake"...or it looks like one...it has 3 compartments filled with what feels like dried chickpeas or cherry pits...I put it in the microwave for 3 minutes...it gets nice and hot (over 4 minutes and it burns) and I place it on my mattress vertically and lay down with my spine over it...the heat spreads along the whole spine and feels wonderful...if it gets too hot I switch it to the other direction across the kidneys or lower...lovely.

So much better than hot water bottles...not exploding or leakage possible...

Sharon

You can make them yourself out of old sports socks (must be cotton...synthetics can melt and give off funky odors in the microwave!) and a couple of pounds of Raw rice or beans or chickpeas...Wander around the bulk store and see what there is available...the chunkier the better, it sort of massages you.

I am wondering if you couldn't use those ceramic beads that they put into planters to retain the humidity...Ceramic holds heat and they are about the right size too...might be worth a try...

Just sew up the top of the sock once you have filled it and pop into the mic...make sure that it is dry (do not use popcorn for this or you may have a problem!)....you may wish to 'quilt' it with a few stitches in the middle to avoid all of the gains from slipping down to one side or another...

Mine stays warm for about 1hr but in bed, under my body it can stay hot longer...I use it on my neck, to warm my feet, on my tummy when it aches...just about anywhere I get cold....

Under the spine is pure heaven...I make sure that I am wearing a nighty because it can burn the skin if applied directly when too hot. 

Apparently, it is a godsend for earaches as well... 

Enjoy

Sharon 

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