Ok so I had a TC early 2012, thank you Ulcerative Colitis. Never had back pain before this and shortly after the surgeries it hit me. The pain goes through stages. For a while it will be moderate, stiff and achy. Then it gets worse, to the point of feeling like i'm 95 years old. Can't bend over w/o putting my hand on my knee, walk hunched over, takes 10 minutes to get out of bed, hurts to roll over, get stuck trying to move sometimes, constant pain with a sharp stabbing pain when moving just right. The sharp pain feels like what a sciatic is described as without the shooting down to my calf. The pain lasts anywhere from a week to a couple months. There had been sometimes where i had no pain at all for a month or two, then it hits again out of nowhere. After lots of research online, I have noticed that many people have the same problem. No back pain, colectomy, then chronic back pain. I am going back to see a GI on Oct 6th but I was hoping to get some information about what could be the cause just in case he hasn't seen this or treated this problem yet.
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I have had the same lower back pain for a year now since my TC. All over pain too. Yep... It goes away for awhile and comes back. No explanation from anyone... Yet. I am going through a bout of it now. It's no fun. I used to be strong and be able to do things myself but now I have to ask the guys at work to put a propane tank on my lift truck. I can't do it anymore.
I think a lot of us that went thru this have that back pain. I think it's from digging around in there. You can tell I am no doctor. But I do remember two softball sized black marks... I would say black and blue but it was black on both sides of my spine or side... It was 3-5 inches away from my back. Something to do with it?
I don't know. I just deal with it now.
Richard.
I think a lot of us that went thru this have that back pain. I think it's from digging around in there. You can tell I am no doctor. But I do remember two softball sized black marks... I would say black and blue but it was black on both sides of my spine or side... It was 3-5 inches away from my back. Something to do with it?
I don't know. I just deal with it now.
Richard.
I tend to think (and I am no doctor) that the inflamation that I had in my colon is now spread throughout my spine. Got rid of the colon but not the inflamation. Yes, you never know what was pushed around, stuck together with adhesions, inflamed, snipped,...etc.
I have chronic sacroilitis with what feels like sciatic pain on the right side (always the right side???) where my pouch is.
When I was still young my female parts suffered with chronic cysts too.
Is it the disease or is it the results of the TC?
Don't know but I try to control it with physiotherapy, constant exercise (the more you keep it moving the less it hurts, at least for a while after the exercise) and kilo-tons of anti-inflamatory meds.
I have tried some homeopathic remedies but they just don't touch it...next step, I have a brand new script for Lyrica that I will fill tomorrow in the hopes that it will help.
I hate to reach this point but I am not willing to give up on life and activities so I will give it a 6 month trial.
I have noticed that when my pouch is full (like in the morning when I wake up) it hurts more but that may just be the sleeping in the same position all night long that has things rusted into place.
yes, I look 50 but feel about 95 when I get up in the mornings.
Sharon
I have chronic sacroilitis with what feels like sciatic pain on the right side (always the right side???) where my pouch is.
When I was still young my female parts suffered with chronic cysts too.
Is it the disease or is it the results of the TC?
Don't know but I try to control it with physiotherapy, constant exercise (the more you keep it moving the less it hurts, at least for a while after the exercise) and kilo-tons of anti-inflamatory meds.
I have tried some homeopathic remedies but they just don't touch it...next step, I have a brand new script for Lyrica that I will fill tomorrow in the hopes that it will help.
I hate to reach this point but I am not willing to give up on life and activities so I will give it a 6 month trial.
I have noticed that when my pouch is full (like in the morning when I wake up) it hurts more but that may just be the sleeping in the same position all night long that has things rusted into place.
yes, I look 50 but feel about 95 when I get up in the mornings.
Sharon
FWIW, My surgery in July lasted over 5 hours. I have a history of back pain (degenerative something or other in the lower back). It was fine before the surgery, but after 5 hours of contortions, this aggravated it markedly not helped by the crappy hospital beds. I was taking a fair bit of endone (until I started seeing signs of dependency - so gave that away). It is only now, after nearly three months, that my back is starting to settle down.
Standing was OK, lying down was a PITA, well a PITB so sleep was difficult. It is something that will go after time, but is annoying and painful in the interim.
And backs are hard to treat, as noted, I'm a long time sufferer. Once there is an issue, it will probably recur. I have had drugs, steroid injections in the spine (did nothing), physio (mildly successful) etc etc. The pain seems to come and go almost at will.
Standing was OK, lying down was a PITA, well a PITB so sleep was difficult. It is something that will go after time, but is annoying and painful in the interim.
And backs are hard to treat, as noted, I'm a long time sufferer. Once there is an issue, it will probably recur. I have had drugs, steroid injections in the spine (did nothing), physio (mildly successful) etc etc. The pain seems to come and go almost at will.
My j-pouch reaches up around my tailbone area where I also have arthritis. Plus they moved things all around when performing our surgeries and who knows which nerves could have been misplaced? My lower back pain gets worse when my j-pouch is inflamed. I've worn out several heating pads since getting my j-pouch almost 4 years ago.....Drugs don't help, at least any I've taken....... It's better than right after the surgeries but I still have "flares" of pain.
Yep - have been dealing with back pain now for years, but it didn't seem to start until several years post-surgery. There can be multiple reasons for these issues.
The most commonly investigated issues for IBD patients focuses on inflammatory arthritis issues. Seems we are prone to inflammation anywhere in our bodies. Ankylosing Spondylitis and Enteropathic Arthritis are possibilities. Some of us have received diagnoses of Fibromyalgia - pain the docs can't really explain any other way. Then there is plain old osteoarthritis (thanks Mom!) that can play a role, scar tissue that might be pulling on things inside your abdomen, you could have disc issues or bone spurs, or who knows what else.
My suggestion is to start with a good rheumatologist if you can. They will help you determine inflammatory arthhritis issues if they exist. MRIs can be useful in diagnosing back pain as well.
I am beginning to wonder about other possibilities. So many of us have been on high doses of Flagyl and / or Cipro (which is a flouroquinolone). Flagyl is known to potentially cause neuropathy, and Cipro is now a well known cause of nerve problems (flouroquinolone toxicity). When we were sick and in the hospital, high doses of these antibiotics were surely justified. However, I am wondering if we are now paying the price for their use.
Steve
The most commonly investigated issues for IBD patients focuses on inflammatory arthritis issues. Seems we are prone to inflammation anywhere in our bodies. Ankylosing Spondylitis and Enteropathic Arthritis are possibilities. Some of us have received diagnoses of Fibromyalgia - pain the docs can't really explain any other way. Then there is plain old osteoarthritis (thanks Mom!) that can play a role, scar tissue that might be pulling on things inside your abdomen, you could have disc issues or bone spurs, or who knows what else.
My suggestion is to start with a good rheumatologist if you can. They will help you determine inflammatory arthhritis issues if they exist. MRIs can be useful in diagnosing back pain as well.
I am beginning to wonder about other possibilities. So many of us have been on high doses of Flagyl and / or Cipro (which is a flouroquinolone). Flagyl is known to potentially cause neuropathy, and Cipro is now a well known cause of nerve problems (flouroquinolone toxicity). When we were sick and in the hospital, high doses of these antibiotics were surely justified. However, I am wondering if we are now paying the price for their use.
Steve