Hi everyone, havenāt posted for a while. Still waiting on surgery to look at my bowels. Recently my symptoms have gotten worse, prior to moving my bowels the pain starts, excruciating is the only word I can use to describe it. I currently take fibrogel twice daily and have cream for an anal fissure. I come out in a cold sweat, feel very sick and have almost passed out a few times now with it. Can anyone else with these symptoms offer any advice or tips on how to manage this better please? I do have my hot water bottle while on the toilet but itās just such a challenge nowadays. Moving your bowels should never cause this much pain š¢
Worsening bowel symptoms š¢ā¦any advice we... - Endometriosis UK
Worsening bowel symptoms š¢ā¦any advice welcome x
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Hi
That sounds really rough to deal with. Have you tried lactulose? It softens stools. You can get the stool that sits round the base of the loo to raise legs up.
Chase up surgery as well. Hope you havenāt too long to wait.
Thanks for your kind reply, yes I have tried it in the past too, il look into that stool though as anything to help. Defo gonna chase up surgery, Iāve got a big letter with all concerns to speak about with the gp, Iāve been like this for over 3 years so just worn out by it all now. Thanks again for replying, hope youāre having a low pain day x
When you speak with GP ask them to write to surgeon to upgrade surgery to urgent, they can do this. It might help. If youāre able tell the hospital you can do cancellations and suggest you get pre op done in preparation, chances are your surgery will be quicker. You shouldnāt be waiting so long and thereās a chance you are getting pushed to the bottom.
Thank you, not too bad but havenāt done much
I feel your pain also š I have it with the bowel and endo on and in my bladder. It's awful sat there in so much pain, I have tears streaming down my face. I literally feel i have no energy after. Sorry to hear the pain you are in š I have a tens machine, when Iām on the toilet i turn it up a little to distract the pain, it doesnāt stop it, but I find itās a bit of a distraction. I have been given dihydracodine as a pain killer, although I donāt think that works either. Iām waiting for a laproscopy. Iām yet to find anything that takes the pain away. The doctor also said buscopan but that personally didnāt help me. Not sure if any of these will help you out at all. Take care x
Thanks so much for replying, itās awful isnāt it. Iāve never tried a tense so itās maybe worth a shot. Itās so draining isnāt it, it just shouldnāt be so painful to do a normal body function. Thanks for the advice and hope you donāt have to wait too long, big hugs xx
Aww no worries, Iād love to be able to help more. Mine is a Myoovi tens. I know it horrible. Mine comes in a cycle first the bowel then the bladder, so I know the painful circle each month and whatās coming. I hope you hear on your surgery soon, and it gives you some relief. Big hugs back to you too xx
Your description could have been written by myself. I'm so sorry you suffer with this too, the pain is so bad it scares me when I feel it coming. Mine comes and goes in contractions. It's like a sharp and tight sensation all over the abdomen. Cold sweats and nausea as if I've got food poisoning. I normally end up lying on my left side on the floor, because it aids digestion. And if I soil myself on the floor, I don't care because I'm that desperate for it to stop. I take laxido every other day, as it's easier when the stool passes quicker. I try to stay as still as possible, as hard as that is, because moving makes the pain worse. And I take deep breaths in through my nose and out of my mouth. Sorry I can't offer more help. I'm waiting to see a consultant about surgery, but it's a long process x
Amitriptyline helped with my bowel issues
Hi
Sorry to hear you are suffering. I have stage 4 endo and adenomyosis and recently had MDT surgery. I had a rectovaginal nodule and a para rectal lesion removed ( I addition to removing the left ovary, fallopian tube and a ureter nodule removed). Earlier this year the pain was so intense, I was defecating blood, had horrific rectal stabbing pain and eventually got the point where felt all laxatives etc seemed to be limited.
I did prior to op also see a colorectal surgeon. He was able to advise medication to manage in the mean time e.g. laxatives to use, increase doses etc. Also important is if its a motility issue too so not just softeners may also need stimulant laxatives combined. I was on laxido but dose increased then eventually this combined with bisacodyl but was a balance of not having diarrhoea.
Re pain its a catch 22 the pain could be so bad some days I resorted to opiates but these made it worse the next day by slowing bowel movements / making constipation worse. I mostly relied on paracetemol unfortunately limited response at its most severe stage so did resort to naproxen with Omeprazole. Or if horrendous Codeine every so often.
You say you are waiting on surgery to look at your bowels, is that Endometriosis surgery with a MDT / bowel surgeon etc too? Have they done any bowel imaging e.g colonoscope, mri? I had a colonoscope which was normal but had paid for an mri which found the rectal nodule etc ( not internal so not seen on colonoscope but that reassuringly ruled out cancer etc).
Ultimately post op ( 2 months ago) I have stopped passing blood. The rectal stabbing recently has stopped ( had some few weeks post op but i have a disc shave to remove the nodule and stitches). Unfortunately I still struggle with my bowels which they now suspect is nerve damage from endo affecting motility likely combined with scarring. I have been able to stop laxido etc but now have been trialling prucalopride to increase motility which is working well so far. The bloating, cramping is generally better. He did say for motility issues high fibre can make pain worse as more cramping / swelling with certain foods eg pulses. Prior I had been on a high fibre diet as advised and psyllium which but for me it actually caused more pain. However can work wonders for others. Do find no dairy, gluten, alcohol, red meat and limiting sugar, caffeine helps for me.
Ultimately maybe try and see your gp and if can't help ask for a colorectal refferal? Or if under the care of an endo specilaist ask them? I also asked to be reffered to pelvic floor physio ( pelvic floor dysfunction can also affect bowel movement and common with endo).Alot of what I have had has been trial and error of many drugs. Surgery for larger issues which medicine will have a limited effect. You should not be expected to suffer in the mean time and need medical guidance. All the best.
ā¤ļø Sabrina xx
hun Iām like you too. Iām still waiting for my bowel surgery . My symptoms have got a lot more severe I spoke to the pain dr and also asked whether they could bring the op forward but then they said that my severe diarrhoea could be something other than my severe endo but it is not like Ibs when I get constipated cronichly I fell like you cold sweats and feel extremely sick but I also get like a tingly back like I have damaged a nerve and then I struggle to push it out . But now I have more diarrhoea than constipation both annoying both painful xx sending š« xx
Anal fissures are SUPER painful. So talk to your GP and don't just try to manage it with heat. Things that have helped me: Psyllium Husk - take twice a day to keep your poo really soft and easy to pass. Also lactulose and/or fibogel. Scheriproct suppositories or cream are a lifesaver for me (put them in after you poo to reduce pain and aid healing). And if all else fails, Glyceryl trinitrate can help to heal a fissure - but be wary as it causes instant headache and can cause blood pressure to drop or have weird interactions with other medication.
thanks so much for your kind reply. I have been given the Scheriproct cream which has helped a bit. Unfortunately it heals then another hard bowel movement tears it open again so will defo start a stool softener to help x