Back pain after ileostomy surgery - anyone else experiencing this?

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tudibird

So, I posted once before about the constant back pain I now have since surgery. Well, at my second follow-up, I brought it up to my doctor who "assured" me that he's never heard of such a thing. Am I just crazy or aren't there plenty of you out there who now suffer from back pain? I should mention I have an ileostomy. Needless to say, Christmas shopping has been just about impossible because of the back pain.

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Bill
Hello tudibird. Thanks for your post.

After my first operation my surgeon 'assured' me that my problems with urination were nothing to do with what he had done. After my second op. I told him that the problem had gone away and he just acknowledged what I was asying without comment.   When people say that they have never heard of something, it surely is more to do with their own ignorance than it is to do with factual evidence.  Sometimes I think that people (particularly doctors) do not want to acknowledge that what they do can have negative side-effects.

Best wishes  Bill
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tudibird

Thanks, Bill. I think you are correct. I find it incredibly hard to believe that after all his years of performing this surgery, no one else has come to him complaining of back pain. I would have preferred to hear from him that yes, it can happen and give me some kind of idea how long this back pain could last. Instead, he denies back pain occurring at all in patients who undergo an ileostomy. All I know is that I had a "perfect" back before this surgery and now walk like a 78-year-old because of the constant pain.

Bill
Hello tudibird.  A possible explanation  is that he damaged something that was nothing to do with what he was operating on and he doesn't want to be liable for it. ( a bit like  insurance companies giving out advice to the effect that you should never admit that an accident was your fault.)  If you knew what had happened there would be a better chance of putting it right!  However, it sounds as if the surgeon probably doesn't know anything about backs so it would be not good asking him.

Back pain is such a common problem that you might get your answers by looking it up on the web.  I know that modern thinking says that you should be exercising in a controlled way to help build up muscles -- apparently not exercising makes things much worse.

I used to be crippled up with pain occasionally when I bent over to wash my face at the sink - as it would put my back out and it took weeks to heal up. In those days I had a wise old GP who advised me to do this activity standing on one leg with the other one stretched out backwards. ( he acknowledged that it makes you look ridiculous but still encourage me to try it). Apparently, if you stand in the natural position with your legs parallel and bend over  all the pressure goes into the lower back and is likely to cause problems. Standing as he suggested, puts all the strain onto the muscles in the back of the leg.  Anyway, it worked magnificently and I have never had that problem since. The moral being - to find someone who knows what they are talking about -- and then take their advice.



Best wishes  Bill
ray

Go and see a cranial osteopath and tell them you have had an ileostomy.

When the large bowel is removed, the fascia muscle in your abdomen will be altered and give less support to your back.

This can cause back and leg pains due to nerve damage.

This is what my osteopath told me. I had a couple of sessions, and no more back pain.

Good luck!

 
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Past Member

Hi guys, my back kills me. I have to use the walker to do any shopping, sitting on it at intervals to rest. Anyway, according to my GI at the Mayo Clinic (no one here had any idea how the two could be connected, a colostomy and back pain) said that 50+ years of straining from chronic constipation and the cutting of pelvic muscles during my surgery weakened my pelvic floor muscles to the point that I have little to support my bladder, uterus, vagina, and bowel. This puts tremendous strain on the lower spine. Backache is just one of the many symptoms of pelvic floor issues. Anyway, you are not crazy. A weakened pelvic floor is probably why you failed the defecating test. There is help through physiotherapy, learning how to do the exercises on your own, and not carrying excess weight.

Past Member

I have suffered with back pain for many years, but I guess it must be the bag, they don't seem to say that. Having all those operations. My pain got so bad I couldn't work for 6 months, my husband had to help me, put underwear on dressed etc. I had all the usual tests MRI and ultrasounds, they said it was in my head. I got some physio, they gave me 6, half an hour treatments. I was in so much pain I paid a chiropractor to help. 10 years later it's much much better, but never gone. I did Pilates for a while, I now do yoga very good.



Littleloo
61smiles

An idea you might not have thought of is having a doctor check to see if you have osteoporosis. Having an ileostomy can lead to malnutrition. I am anemic and have osteoporosis because my food goes through my small intestine too quickly and it does not pick up all the nutrients. The doctor has me taking iron, vitamin B, and calcium supplements.

tudibird

Thank you all for the responses. Lots of things to think about. I did call and schedule an appointment with pain management to discuss this. This doctor also specializes in acupuncture so I figure it's worth a visit to hear him out. I'll let you all know what he has to say since my surgeon acts like I am crazy to suggest this surgery caused the back pain.

Past Member

I agree with you entirely. I have suffered long-term sciatica since my ileostomy. I was on life support for a time, and afterwards, my family told me how I kept stretching out my legs. This was obviously because of the pain in my leg! I have had constant nerve pain from my lower back down my left leg and, at times, a completely numb left foot! I can joke, but it isn't funny at all. I am on strong painkillers which make me a bit of a zombie.

lorraine-cooper1960

Hi Bill and also Turdibird. You hit the nail on the head. I didn't have back pain before but I do now. The doctor was quite condescending at first but I insisted on an MRI scan which gives excellent pictures in very detailed format. I opened them, and looked myself before I went back so that I was forewarned. He scarcely looked at the pictures and when I pointed out that L5 wasn't sitting correctly and was prolapsed (lumbar spine), he scoffed and asked me if I felt qualified to answer. To which I replied that if he had taken the time to read my referral, he would realize I am a nurse practitioner, so yes, I am qualified. It certainly took the wind out of his sails but on reexamination of both the MRI and me, I was sent to a surgeon who specializes in backs only but he very quickly added that I should realize all nurses have bad backs!
Utter BS because we now encourage patients to help move themselves and have hoists etc. I didn't have pain before, I do now. It's not hard to work out (and no, I didn't want extra time off of work, I love my job). So I will see the specialist who may have non-surgical approaches to my situation, I hope you all get answers and soon. I understand how debilitating and painful it is.
Also, Octobersunrise is absolutely correct, it is a process of elimination, and could definitely be caused by a collapse of the vaginal vault.

spinbot

I know this is an older topic, but I also had tremendous back pain as soon as I woke up from my total colectomy. It was so bad that I didn't care about any pain related to my stomach being cut open and the bowel removed, all I wanted was medication to deal with my back. I always figured the pain was a result of the surgeon having my body bend back too much during the surgery for the 6 hours it took. When you combine that with the weaker than normal bones (due to osteoporosis from long-term prednisone use), it makes sense.

Flash forward 25 years and I still have chronic back pain which I take narcotics to slightly reduce the pain, but I have to avoid lifting anything moderately heavy as when I do, my back hurts way more after it. Sadly, I went through my 20's and 30's with this issue and not lifting just became impossible not to do. Life goes on and I've had to move, get groceries, etc., so I end up causing greater pain at times, completely knowingly, but I couldn't always depend on others to do everything for me.

I hate my body. Not because of what it looks like, but the fact that it never feels comfortable. The few times in the past decade that I recall feeling good are when I've got a shot of morphine directly in my IV at the hospital. I don't do street drugs, as much as I think about wanting to, for the reason that I am almost 100% certain I will like the feeling (or lack of feeling) and I would become addicted so easily. Pretty sad reason, I know, but it's the truth. Fortunately, I live in my cage (my home) and rarely socialize outside of it, so my chances of bumping into people with drugs is virtually 0.

Just to stay on topic, I am certain the surgical procedure can cause back damage/pain as I too suffer it only since my big surgery decades ago.

looking forward

Hi, I have the same and also UTI, since my surgery. What do you do for your back?

spinbot


 I've been taking Cymbalta and trying to be more active (strengthen the muscles to put less stress on the spine).   I also keep my weight under control (175 lbs, 6'1").    

DenDen
Reply to tudibird

I've had back surgery 15 years ago. I've never had a problem since. Now I'm 5 weeks in from ileostomy. The back pain is awful. I don't know what to take anymore. It's between my shoulder blades then at the bottom of my back. The only thing that works is a hot water bottle. Standing too long is awful. Is this what you experienced?

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