Post op misery.

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Wondering if  anybody out there has multiple bowel surgeries where you didn't end up with a bag. In theory sounds great however I have not had good use of my  bowels since   And over the past few years everything has just worsened to the point that during flare ups I break big blood pressure numbers and my heart struggles through the pain. The pain is specific to the area of operation.  I have tried all meds all alternatives.  Drs seem to avoid looking you in the eye and saying any truths. They just pump me full of ondansetron and hydromorph and  fluids and hope the flare up passes. And if it doesn't seems the only tool they have to get good money fom healthcare is a colonoscopy.  Then I find they don't really believe in ibs.  Especially if post op related.  Anybody any honesty would help. I also suffered through c diph during a post op wound infection and didn't eat for months after that. Thanks for any help. 

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  • Posted

    Hi. I am so sorry you are suffering in this way. I am interested in the fact that you have surges in your blood pressure during flares. What led to your surgery? I wonder why your bowel health is so poor. I have problems with gut and intestinal issues with big hikes in bp but this is related to a form of vasculitis.

    After long treatment I am in a kind of remission now and don't get the really bad symptoms any more which I am eternally grateful for.

    Have you had thorough investigations on what might be causing the issue?

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  • Posted

    Abdominal surgery is known to cause IBS.  Doctors are perfectly aware of this but won’t admit it.  Abdominal nerves are very sensitive and can be very easily disturbed. It may also be possible that the c diff infection triggered IBS too.   You can get post infectious IBS.   Do you have change of bowel habit and does your pain move about your abdomen?  Hikes in blood pressure may be due to the stress the pain is putting on your body.

    Does eating affect your pain?  Try a food diary to see if a particular food(s) is causing problems.

    Unfortunately, there is nothing doctors can do about IBS other than give you antispasmodics and other painkillers.  Even low dose antidepressants are now given for pain.  IBS does not show on any scan because it is functional.  If you have had all the tests to rule out other causes, you will be diagnosed wirh IBS.

    Medical procedures can leave problems behind such as neuralgia as well.  I was left with permanent neuropathy after a blood test.  However, at least my doctor admitted that the blood test was the cause and the culprits were swiftly moved on.

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    • Posted

      That is what I have put together from other dept.  internal medicine has mentioned it.  I find gi drs to be very callous and non communicative.  The hospital I go too is a teaching one so their experience is limited.  I figure the heart is just struggling with the pain.  The pain stays pretty much in the same spot.  It does flare nerve pain through the inside of my leg down to the foot.  When my flares are bad the pain will spread around  the surgery site. I went through the change pain program where the inject into the nerves but it would just cause flare ups.  All eating and pooing is bad.  I eat at most once. And it needs to be very soft.  Thank you for your input.  
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  • Posted

    Hi ross sorry you have to go through all of these...but can you tell us why u hv to undergo bowel surgery? that way we can better understand that what's goin onbiggrin

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  • Posted

    Yes if is a sad tale of being young and fit and moving a lot and always dealing with a fair amount of ancient drs.  I had a necrosis in the last bend of the lower part of my large intestine.   It took 20 years for it to be found.  Which was in icu as my kidneys failed and my heart was 199 had my white count was crazy.  My white count was always fluctuating for 20 years.  But they would at me and say. "Ur fit".  

    Unfortunately it's not any specific food except the softer and less fibrous is better. Mostly I eat every second day. But rarely More  than once. I puke if I eat more.  I pooh nlood all the time.  And yes the high Bp is due to your body dealing with pain. My highest has been 200/140.  I am quite thankful to the fitness I had cause it has bought me 7 more years so far.    Thanks for listening out ther in radio land. Also for your dr who is straight up.     I knew it the whole time.  I just find Gi  drs have a certain petrified chip on their shoulder.  

    Also what do people think of an ibs cookbook called sweet and s****y.  Short read.  Very few recipes. 

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  • Posted

    Dear ross, that is a lot to take in....but you are really brave. Well, can you tell us that kidney failure and high heart rate was due to what? I mean because necrosis you hd septic shock and it affected ur kidneys or it is altogether different symptoms of one disease? As bowel necrosis is a symptom of one cause...Well, I hv heard about post op paralytic ileus where for some times due to bowel manipulation your bowel stop moving for some times, but eventually it comes back to work again by itself also some electrolytes disturbance like less potassium in the body can also add into decrease in bowel motility....Do you have diarrhea or constipation? there is always a chance where you can develop bowel adhesion after surgery, which present as intestinal obstruction. Again this is just a guess, but I really hope you get back to your life soon. Do you have any particular diagnosis that why you had the bowel necrosis? eg, any embolus or thrombus which blocked the artery or due to obstuction or any autoimmune condition?

    For c diff, you probably be knowing that it is mainly due to high antibiotics use, and it can come back if you don't take care of your gut's healthy flora...Mainly what I have seen is if u have this kind of problems then doctor gives you probiotics with antibiotics so u can still maintain the healthy gut bacteria with continuous antibiotic course.

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    • Posted

      Ur good.  Yes to all that.  Kidney s failed due to septic shock. Post op I was drying heaving heavily and the staples popped and an infection set in the antibiotics gave me a 3 month run of c diff.   As far as bowels.  They run the full gambit of many hard bloody stools. Diarrhea for days  and constipation.  It's all over.  When the flare ups get bad I present in my blood that I have blockages but I don't.    When I go for walks or try to do chores the pain in the lower left quadrant gets so bad it contorts my body till I am the crooked man.  My Bp spikes. Heart rate is high with palpitations and seizures.  It's a good time, and I don't see how it can get better    I have tried many alternatives.  Went through the change pain program a variety of different ibs meds.   Thanks for asking 

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  • Posted

    Yes,  ur all over it.  The necrosis caused septic shock.  They don't know why the necrosis happened. But it was old.  Post op I continued to heave heavily and the staples popped out  got an infection then c diff from the antibiotics.    My stools are multiple a day. Very small and bloody.  That will go on for a while then I will break into diarrhea for a few days.   When I get constipated the pain increases in post op area and I present as being blocked but I am not. The white cell spikes. They fill me with I've drugs and fluids till I bounce back then it's back to the couch.  My walks make me crippled in the left lower quadrant and pulls my body into a contorted mess.   Thanks agin 

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  • Posted

    Dear Ross, You are a fighter...And i know it is difficult for you right now but you will come out of this suffering...Have faith and be patient...Well As we talk till now What I could conclude is initially you got bowel necrosis and septic shock due to that, after that u underwent bowel resection and your staples popped out with infection at surgery site and you were put on antibiotics and that gave you c diff infection... now your symptoms are altering diarrhea with blood and constipation, abdominal pain at surgery site, with that you get spike in ur blood pressure and heart rate and seizures. You go to the hospital during your flare ups and they find that your white blood cells count is high, but they couldn't find any obstruction...So they gave you some medicine and you felt better, But again everything repeat again...I could understand  that much, please tell me if I am wrong.

    Well I am a med student suffering with IBSrolleyes but I am yet to be a doctor, But what I could figure out is that your case is very special, And what I realize is that you are still suffering with your bowel thing...Can you tell us that how long is it now from your surgery? As as far as i know IBS does not give you blood in the stool, another thing I would want to know that did they check for your healing of your bowel with anything? did they do any imaging tests to rule out post op adhesions? Increase in white blood cell count suggest any infection, inflammatory process or many other things...Do you have fever with that? do you have bleeding or bruises from other sites?

    Well as far as I know there must be a cause of your bowel necrosis, spike in bp and seizures...And if we know the cause then it becomes easier to treat, So did your medicine doctor checked your blood for every possibl causes? did you have you hd the sonography of your heart? well regarding your bowel problem I think they might want to check if your surgery site is ok or not? and I would suggest please bring back your healthy gut bacteria which died by eating probiotics, but ask your doctor for that, Gut bacteria helps you to make vitamin k which essential to make clotting factors, deficiency of vitamin k can give you bruises...well surgery unit cannot find out the exact cause of your necrosis but the medicine doctor can help you and also rheumatologist too if your physician can not...

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    • Posted

      Thank you for your encouraging words. That is what I feel like everyday. Fighting silently mostly alone.   Fortunately I came from a heavy sports background where my living was based on fake fights.   Ur correct with everything.  My first op was 2012.  They did a second because of adhesions  a year later.  Still I bled and had problems.  They found epiblotic appendigitis  in following imaging but nothing else.  In my colonoscopy they would explain away the bleeding saying it was hemorrhoid s in the colon.  But 6 years later I still bleed lots.  When I first came out I would continue my heavy sports behaviour but my flare ups would be huge.  And now I am basically couch ridden. I suffer through the most basic chores and never know when a flare will happen except that it will be soon. I am afraid of eating now

      Funny though I find it's only drs who also are sick that are the only sympathetic ones.  Like friends , all the healthy ones are gone.   Thank you again for your help.  

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    • Posted

      Hey Ross, Sorry for replying late, was caught up in some stuff...Well, now I think I can understand better given your occupation history...Well Ross may be because you are in this profession only because of that you can fight this hard...people like me would hv  given up...I appreciate your courage and encourage you to have faith that you will be ok / you are ok ( Law of attractionwink

      Well it is quite a long time after your surgery and If they couldn't find any cause in colonoscopy other than hemorrhoids, in a way is a good sign, But symptoms wise you are more miserable than what could they find out...Well did they have your all autoimmune profile checked, Just in case, to rule out every possible causes..given the history of high blood pressure, seizures...Abdominal pain can be one of the symptoms...Well I assume your physician might have done it..and if those profiles are also normal then,

      I would suggest you should check for any AUTHENTIC naturopath...It helped me a lot when it was a time where even allopathic could not explain my symptoms but my alternative medicine doctor could give me all the answers i wanted for my symptoms and not only that could help me to improve my condition significantly.well I didn't have typical symptoms and had to suffer a lot...So there is a always hope...biggrin 

      And Thank you for acknowledging that not all doctors are same, Well one of the reasons for me being like that is my encounter with my Alternative medicine doctor, The way she could explain and helped me that even my allopathic doctor also could not help...and I thought what are we? we just treat symptoms and here are the people who treat the person as whole not just the symptoms...So anyone who realized that can't ignore even one person's suffering, who come across their way...People just need to realize....

      Another thing is I think you should be more careful for your diet , electrolytes and vitamins levels and get it checked every year..As these are the things which provides you energy and keep you get goin.. If you can then just let me know if they have done all the blood work for autoimmunity.

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