Worsening bowel symptoms 😢…any advice welcome x

[endowarrior12]

Hi everyone, haven’t 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 it’s just such a challenge nowadays. Moving your bowels should never cause this much pain 😢

[Moon_maiden]

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 haven’t too long to wait.

[endowarrior12 in reply to Moon_maiden]

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, I’ve got a big letter with all concerns to speak about with the gp, I’ve been like this for over 3 years so just worn out by it all now. Thanks again for replying, hope you’re having a low pain day x

[Moon_maiden in reply to endowarrior12]

When you speak with GP ask them to write to surgeon to upgrade surgery to urgent, they can do this. It might help. If you’re 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 shouldn’t be waiting so long and there’s a chance you are getting pushed to the bottom.

Thank you, not too bad but haven’t done much

[endowarrior12 in reply to Moon_maiden]

Thank you that’s great advice xx

[Country-Girl100]

I feel your pain also 😓 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 😓 I have a tens machine, when I’m on the toilet i turn it up a little to distract the pain, it doesn’t stop it, but I find it’s a bit of a distraction. I have been given dihydracodine as a pain killer, although I don’t think that works either. I’m waiting for a laproscopy. I’m yet to find anything that takes the pain away. The doctor also said buscopan but that personally didn’t help me. Not sure if any of these will help you out at all. Take care x

[endowarrior12 in reply to Country-Girl100]

Thanks so much for replying, it’s awful isn’t it. I’ve never tried a tense so it’s maybe worth a shot. It’s so draining isn’t it, it just shouldn’t be so painful to do a normal body function. Thanks for the advice and hope you don’t have to wait too long, big hugs xx

[Country-Girl100 in reply to endowarrior12]

Aww no worries, I’d 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 what’s coming. I hope you hear on your surgery soon, and it gives you some relief. Big hugs back to you too xx

[Jess96]

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

[endowarrior12 in reply to Jess96]

Thanks so much for replying, I’m just so sorry you know how awful this feels. I’m a right one for wandering about when it’s bad as I struggle to stay still but I might give it a go the next time (god the thought of it coming back fills me with such dread 😢 xxx

[Tired73]

Amitriptyline helped with my bowel issues

[endowarrior12 in reply to Tired73]

I’m actually on amitriptyline also, it has helped me get some sleep but not done too much pain wise unfortunately. I’m glad it’s helped with yours though xx

[Sabrinacolada]

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.

❤️ Sabrina xx

[Cocoacupid]

hun I’m like you too. I’m 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 🫂 xx

[mavenmi]

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.

[endowarrior12]

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