Bowel is never empty

[KMLxx]

I’m hoping someone can help me! This is incredibly embarrassing and I’m so frustrated and don’t know what else to do! I have a number of conditions such as fibromyalgia, erythromelalgia, pelvic floor dysfunction and other problems as well as some unknown problems! But my biggest and most problematic symptom is my constant and painful BMs. I’m newly under St marks Hospital because of my bowel issues and I’ve been prescribed Qufora irrigation as a last resort because nothing else is working to help me relieve myself properly. I’m on laxatives everyday, stool softeners, suppositories, enema and now irrigation… and even if I do all the above in a day there is still stool left in my bowel. It’s not just a feeling of me needing to go, I genuinely have to go and there is always stuff leaving my body. I’ve asked every doctor I’ve seen and no one seems to be able to answer my question! Why do I have to go soo much all the time?! I am yet to see my consultant at St Marks and have only seen a specialist nurse so far but she can’t answer my questions and neither can my gp.

Sorry for the rant and thanks for your time! Xx

[Readmeastory]

So sorry to hear how you are suffering . I feel doctors just don’t understand how hard and painful and soul destroying this illness is . So rant away I take laxatives every day for constipation and pain gets to me so much . I wish I could They could find a cure . I’ve got slow track bowel and narrowing plus scar tissue . So been told learn to live it hit . So rant all you like and I hope you get some relief 🙂

[Hidden]

Good Morning, I too use this irrigation system and have done for 3 years. If you Google and watch video’s and people’s personal stories it is my understanding that once a pattern can be established, other laxative use should be reduced. It takes a while to retrain our bowels. Laxatives clear out everything in the colon and produce several bowel movements throughout the day. I irrigate every other day and take laxatives once a week. Irrigation has it’s pluses and negatives. One big negative is dehydration. I tend to message my tummy to try to remove as much as I can in one go, but I do understand what you are saying. I also use 1000 ml of water but it takes a while to expel. Our conditions are totally debilitating and have a big impact on our physical and mental well-being and we have to make the most of it. Believe me that is easier said than done. I was under St.Marks for years, done bio feedback twice and then discharged with movicol. Now under The Royal London and had a suture rectopexy in 2019 which has failed and they want to re do with mesh which I am avoiding. I have accepted there is no cure, I am under the best team but I suspect they are at a loss too. Good luck with this it really can help but it is still a struggle😀

[Beezwax in reply to Hidden]

Hi ShazR,I replied to KMLxx but didn’t read all your reply. I would be interested to know about the Royal London & who you see there. I had most of my tests done there years ago.

Best wishes.

[b1b1b1]

I am sure you have considered this, but will mention it anyway. Is there enough fiber in your diet? Also, have you worked with a medical dietician on this at all? x

[KMLxx in reply to b1b1b1]

Yeah I’ve done and tried all that, it doesn’t seem to be what I eat or do... the issue is it’s got to come out the other end. X

[Pajarorose in reply to KMLxx]

I have IBS with constipation. It is my understanding that most IBS-C is caused by an inability to digest Fructans. I cut out fructans, and most of my problems arrest.

[Winke]

Hi there sorry to hear all about your problems i have suffered since i was 20 and now i am 82 so its like a life sentence i have passed blood from both ends on several ocasions.been in hospital several times but still suffer pains in several parts off the body when one stops hurting another one starts at the moment i get releafe using magnets it seems to ease the pain but i dont think there is any cure.I wish you all the best

[Linley]

Rant away its good to get it off your chest. St Marks is the premier hospital for bowel probs, my last colonoscopy was preformed there and it went very well but at the end of the day if there is nothing sinister showing you tend to be on your own. I thought I would get CBT sessions but alas no. Perhaps you should ask them for these sessions they may help. 🤞

[KMLxx in reply to Linley]

A lot of what’s going on with me is still unknown and whilst it might not be exactly sinister.. I can’t just live with it, cause I’m not exactly living. It’s awful! I’ve done CBT and stuff before but the problem starts with my body not my mind so until I can get my body right it doesn’t matter how I’m feeling mentally. Situation just sucks tbh.. thank you for your input though, it’s appreciated x

[Linley in reply to KMLxx]

👍Good luck

[Readmeastory in reply to KMLxx]

I was told the same nothing sinister learn to live with it . But I’m not living I’m existing in pain.I just wish that something would work . As one consultant said to me I haven’t got a magic wand to make you better .I left in tears but 2years later still learning to live with it . I hope you get some help 😊

[Beezwax]

Hi, Sorry to hear about your problems. I am in much the same situation and have been for quite a few years. I was diagnosed about 10years ago with an intersussepcion/ internal bowel prolapse and rectocele. It has gradually got worse over the years. I use the Qufora mini irrigation system with an extension tube every day and could not manage without it. I have tried a greater volume irrigation system like the persisteen, but it doesn’t work for me and causes a lot of stomach ache. I see a colorectal nurse and I used to see a consultant. There was talk of surgery, the one with mesh, but I didn’t fancy it and was concerned it could make things worse. In any case now it seems that is not so available because of the risks.I have been thinking I should try a different hospital and was actually thinking of trying to get referred to St Marks (though it is quite far from me) so I would be interested how you get on there. I think a consultant there is meant to be good for this problem- Carolyn Vaizey. However what I think I would prefer is to have a stoma - I understand it can be done for some other bowel conditions. It seems extreme but I am really tired of this problem and spending hours in the bathroom.

Any way good luck with things. Hope something helps.

[KMLxx]

I haven’t been on the Qufora long at all but I can’t seem to quite get on with it which has really upset because I don’t know what else they will offer. I’m so glad you said that you wanted a stoma cause I feel the exact same way! I know it’s extreme but this is extreme. I’m 27 and it’s robbed my entire 20s from me. I’ll happily keep you updated on my experience with St marks.. it’s not been too bad so far, the staff have been nice but I’m yet to meet and speak to my consultant and I haven’t spoken to my specialist nurse since she put my on this treatment.. I’m speaking to her in 2 weeks and I’m hoping she’ll be able to help me with this Qufora issue. And fingers crossed I actually speak to my consultant soon cause this is driving me crazy. It’s nice to know I’m not alone, thank you.