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Digestive paralysis. Anyone else??

Hi y'all. I've been on Percocet for 3+ years and as my nerve pain progresses it is of course less effective. I've tried injections, PT, pool therapy and everything in between. I'm at the point I I'm ready to give in and go to a stronger pain med. Problem is my digestion has slowed to the point that I have to eat tiny amounts of food, bland food at that, and my body still has a hard time digesting. My neurosurgeon told me long ago that narcotics can slow peristalsis and eventually your body stops responding. I have to take laxatives every day and still get constipated, then take stronger laxatives and deal with the opposite! I've tried everything and can't get a balance. I've had to cut back on my pain meds which has been pretty awful at a time when I need more. I'm losing way too much weight. 


I've been to a GI doc and he just gives me drugs I can't afford that give me diarrhea. Life without pain meds seems impossible but that's where I'm headed, ugh. My pain doc wants me to try Tramodol, says it's not as hard on the body. I had it right after surgery and it did nothing for the pain. If anyone has dealt with this problem I'd love to hear from you. 

Joanne

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Comments

  • MikethepikeMMikethepike MIchiganPosts: 473

    I feel for you Joanne, for a while there about three months I was using more MiraLAX and stool softeners, now I need to go back to also using suppositories. I am the same as you eating very small amounts all day long, if I eat anything close to a meal my stomach hurts so bad. I don’t know what the answer is Just  my input take care and God bless

  • memerainboltmemerainbolt IndianaPosts: 4,137

    Joanne

    I am so sorry, with all of us, it is always something else piled on top of what we normally have to deal with. A lot of mornings I get up and have diarrhea, for hours. Or will be constipated for days. Like you, I can only eat a little at a time. I've kept list of what make me sick but that changes often. My GI doctor has tried everything. A few years ago I had a huge ulcer, all caused by the drugs. Now, the damage has been done and will have to live with it.

    My metabolism is so high it just spits all the nutrients out. Plus I have mesenteric ischemia, which does not help. 
    Sandra

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  • Thanks for responding Mike and Sandra. I'm sorry you have the same type of issues (and more!) but I appreciate you being there. I guess there aren't a lot of answers except our faith and to persevere one day at a time. My system seems to be calming a bit since I cut back on the pain meds and stopped eating, lol, not pleasant but I don't know what else to do. It's so hard to be cooped up especially this time of year but spring WILL come! There's always hope, right? Keep on keeping' on! 

    Joanne 

  • memerainboltmemerainbolt IndianaPosts: 4,137

    Joanne

    I don't get out except to go to the doctor. One reason is I can't afford to get sick with the flu or worse from crowds of people.
    I use stool softners, anti-diarrhea, Tums, whatever it takes to keep my system going on my own. We do have to persevere and take care of ourselves. This forum is a good place for this kind of information, what works for you.

    What would we do without hope? Hope and pray.
    Sandra

  • Hi Joanne

    I know you read about my weaing off opiates finally last March prompted mainly due to Gastrointerology ‘issues’.  That didn’t help my symptoms, however being off opioids and benzos for a while sharpened my brain slightly.  Now I’m on to trying to eliminate Gabapentin which has lots of the same side effects.  You said you were losing weight, I gained.  And now on prednisone for better parts of 3 months, I’m heavier than I’ve ever been in my life.  And neck and thoracic pain have returned after 6 years ugh.  But here at 23 months post op, I finally got regular after months of thinking my digestive system was damaged for good .  I still have bloating and lethargic spells, but the movements are predictable normal not painful and the big D diarrhea and hemroids  have all but disappeared. I was sure I had IBS or colitis.    I still take one ducosate 100 daily with my coffee and constipation is minimal as I am back to controlling sciatic; arthritis and broken rib pain with 1-2 5mg OxyCodone about 5 out of 7 days a week    

     Is there a specific test for digestive paralysis or just a diagnosis based on symptoms ?  Prognosis? , treatment? is it reversible?     

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  • Hi Joel, that's encouraging you got your system back to almost normal. I too am thinking I damaged my digestive system beyond repair. I did have an upper GI scope a couple of months ago and he said everything looked good but didn't help in going forward. I should go back to talk to him but I know he'll want to do a colonoscopy and I don't think my body could stand that. I know it's the narcotics and you're probably right about the gabapentin. I would love to cut back on the 3600 mg I take per day!! I'm back to 2-5mg of oxy per day and 1 Tizanidine which barely keeps me functioning. After a week of the BRAT diet things are starting to settle down a bit. I still have to eat small amounts or I just bloat up and it's painful. I have this awful fear of constipation (wonder if there is a phobia name for that, lol). 


    I know it's the narcotics and gabapentin so I guess I have a choice to make if I can't find some kind of balance. If I can get by on the pain meds I'm taking I'll try to slowly start cutting back on the gabapentin, last time I did that it was awful but I don't know what else to do. It's so depressing not to be able to take enough to function but I can't live like this and just keep losing weight. I also would like my brain back! I'm always so sleepy and can't remember anything. Not that many years ago, I loved to write and read and be with people, all that is gone. Oh how we all would love to live without drugs! I hear ya about the prednisone! It works but has so many side effects. I'll be praying for you and we'll all just keep on keepin' on and focussing on the joys in life. I'm going to take a step forward and make an appointment with my pain management counselor today, he's always so positive. Again, thanks for your reply. I so need all of you! 


    Joanne 



  • memerainboltmemerainbolt IndianaPosts: 4,137

    I had an endoscopy done, twice, that's when they found the ulcer and other gastro issues. The most I have ever weighed is 110 lbs. but when I had the test done I was down to 83 lbs. I have struggled to gain weight and have, a whole 6 lbs!! 
    It's always something, isn't it?

  • Always.  When I got my upper Endo in the summer I should have scheduled the colonoscopy to be performed at the same time.  Both cam back ‘negative’ for major things or anything that would be causing bloating lethargy.  One small diverticular pocket.  

     If you can and especially ifit’s time to do it anyway I’d get the colonoscopy for piece of mind.  My blood instool was enough for me.   The day before prep is much harder than the procedure itself. 

    Fear of constipation - Coprastasophobia

    I can’t believe this is a thing, but it is. 

  • MikethepikeMMikethepike MIchiganPosts: 473

    Hi Joel, does the bloating show up on your stomach from your breastbone to your groin? and do your stomach muscles feel weak? That’s the feeling that I have. I am planning on having a scope done because I cannot eat very much. I have to eat small amounts all day long. Such a small sandwiches, grapes, hard-boiled eggs, even drinks like boost I can only drink a half a bottle at a time. Otherwise I have pain. Take care and God bless and thank you for all your help.

  • memerainboltmemerainbolt IndianaPosts: 4,137

    Joel

    I forgot to tell you, they also did a colonoscopy and did not find anything.

    Mike, I can't eat very much at one time because my stomach has shrunk. That's one reason, keep that in mind.

    Sandra

  • Hey Mike.  I feel ‘bloated’ from the line between both previous inguinal hernias all the way to the top of my rib cage.  I also look like I’ve drank beer and nothing but for decades , that’s not me.  

    It’s changed in the past year, Previously it was more Gastro feeling but now it just feels like I ate too much and my muscles hurt regardless what I do  

    Sandra I think the best part about a colonoscopy, second to a clean report, is a clean start with your gut.  Silver lining 

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