I was diagnosed with fibro in March. Have had a few years of debilitating pain in various guises and have also suffered terrribly with my bowels. I have irritable bowel so discomfort has become the norm and also have a rectocele which is very unpleasant. This basically means my bowel wall is weak and often balloons into my bladder area which means I have to physically push it back again.
I have managed this pretty well really but lately I have been sosososoos bad - absolute agony. I am almost a week at a time without going and the pain when I do go is excruciating - sends the pain and numbness right down my legs and I feel sick and want to pass out.
I have been taking two laxatives every evening - aloe ones that are very natural and usually fantastic but it is not working.
Any ideas and does anybody else with fibro suffer like this with their bowels - don't want to go to the doc in case he changes my pain medication which is currently working reasonably well and is enabling to keep working
Thanks xx
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landslider
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I am so genuinely sorry to read this and I am sincerely sorry to read of your suffering in this matter. I have never been through anything of this nature, and I would definitely discuss this with your GP to ascertain what your options are? I want to genuinely wish you all the best of luck.
Hi, I'm sorry to hear that you are suffering so badly. I cannot even begin to imagine how distressing this must be for you. Like Ken has said, you really need to go see your GP, you shouldn't be suffering like this. Explain your concerns about your fear of your meds being changed etc; I'm sure he will understand and will do his best to make sure you get the proper care that you need. Wishing you well, take care & let us know how you get on. Mags x
Morning sorry to hear of your problem - very difficult very painful - yes have had problems to it is not helped by pain killers which make the problems worse. It is very important you do not strain your self when pushing . A dangerous occupation.
now what
Can you go down or ring the dispencsing chemist you use and ask their advice. They will know what you can take with your medication. They may suggest a daily does of fibre to bulk up your stools . Any way go chat that is your best bet, Eat lots of prunes my Dad always swore by them.
I see your quandary as often it is the pain meds themselves that cause constipation/ IBS. It certainly is with me with NST,mTramadol and Oramorph makes it unbearable some times the stomach cramps very painful. I spoke to my dr who put me on a tablet called Doucoutose which taken twice daily helps a lot. As mentioned prune juice helps as does mint tea and plenty of fluids and roughage in the diet.
Moving about if you can't exercise aids digestion and movement through the body, I have even given my self tummy rubs! I have styled into a regular routine as I used to enjoy starting the day with a clear out not end it, but it is great progress, eat lightly and graze rather than one or two big meals and don't eat too late at night or before lying down as you can get acid. I would go to chemist or trust Dr not to alter something thaat is working. But not going for three days and over is something you must get sorted.
Prune juice!! of course, why didn't I think of that - I love it too - it is the Scottish blood I think hee hee.
I do actually do the massage thing too - thought I was the only crazy person to rub my intestine before I get up in the morning. Does help a bit with moving it down - I can actually feel the lumps hahaha
The exercise is a big problem - used to be very active - rock climbing, cycling, mountaineering - but this blummin thing called FMG stole it away from me grrr. I try to do bits but it is so difficult - even had to buy a super light weight hoover and even that is hard work.
It looks like I am gonna have to chat with my GP ;-(
Feel like a right moaning minnie - I am never away from the place
Thanks for the info though - I shall definitely get me some prunes. I haven't been eating breakfast lately as I feel horrid in the morning but OJ is good and the prunes will finish it off xx
I am really sorry to hear about your bowels, I too have this problem & it is completely debilitating! I started out just like you, I started having constipation more & more & the pain meds were definitely to blame but my doc never considered changing them. Instead, she started trying to cure it by prescribing all sorts of laxatives, none of which worked! It eventually reached the point where I had to manually evacuate my bowels, which was truly excruciating, the pain made me sick, very hot & in tears every time I had to do it, which was about every three weeks.
I attend a continence clinic because of bladder problems & I happened to mention my bowel problems, which they immediately tried to help me with. They prescribed me a laxative called bysicodyl, which helped a little but then stopped working after a while. I was then prescribed a system called qufora, which I had to manually carry out, it involved putting a plastic cone up my bottom, which was attached to a flexible, oval shaped container, full of water. I then had to squeeze the container & it sent water into my bottom, which is supposed to clean the bowel out, so normal function could begin again. I was supposed to do this everyday but, unfortunately, the first time I tried it my anus shut so tightly that I just could not insert the cone!
The next time I went to the clinic, I explained what had happened & at that point, I was referred to the nurse specialist practitioner. I had been told I would be given an anal examination, so I was dreading going to see her but I'm really glad I did! She asked me to tell her, from the very beginning, how I'd got to the point I was at & she was lovely & understanding. She said she would examine me from the outside first, so she pressed my tum in certain places, then she started tapping me where my bowels are. When she finished, she turned to me & said "it doesn't get much worse than this" then she told me I was full of poo ( not the first time I've been told that, just not as politely ☺️) & that it was probably impacted! I said I didn't think it was because I have occasional bouts of shocking diorrea & she said that's a symptom of impaction, as the matter further up the bowel squeezes past the impacted poo. She also told me that 20/30% of fibro sufferers have an extremely sensitive anus!
As I no longer get the sensation that I need to go, she has given me some exercises to do every day until I see her again in June. I have to sit on the toilet every morning for ten minutes whilst blowing up a balloon! This makes you use your muscles to try & get some sensation back & to sort of kick-start my bowels into working again. I take bysicodyl every night & I also take Docusate Sodium every night & every morning. I have started taking 30 mls of lactulose every three days or so, which does seem to help.
I strongly suggest you see your GP & explain the problem, as what works for me may not work for you. If it's your first visit, he will probably prescribe some oral laxatives & it may be a bit of a waiting game to see what works. If you find you're not getting anywhere, maybe suggest a referral to the continence clinic. Please don't take matters into your own hands, as taking too many laxatives is very dangerous. I wish you all the luck in the world with this & believe me when I say I can feel your pain.
I really hope I've helped you in some way & at least you,know you are not on your own 😊
Thanks for your advice Tracy. Firstly I was not sure if it could be fibro connected, but from what you say there is 30% chance it is.
Secondly, I have been to the GP and mentioned it a couple of times but not in much detail (it is rather embarrassing talking about bowel problems). We put it down to the cocodamol which I now don't take at all.
I already know that Ibuprofen and paracetomol cause me the same problems so I don't take them.
The Targinact which I now take has something in it to help with constipation but I am worse than I have ever been.
Like you, I don't think I get the sensation to go until my bowel is so full it is "just about popping out the end" by the time I get the urge (if that makes sense).
It doesn't help that I used to be very active and now it is as much as I can muster to walk the dogs.
I already have an appointment booked at GP tomorrow - 3 week check on an increase in the Targinact - so I guess I am going to have to find a way to talk about it. I never mentioned it at my last visit. I was just so relieved at finally being able to get some decent sleep. I think sometimes there are so many different things going on with my body that it is the one I am struggling with most that I concentrate on. When I am that tired it takes me to remember what day it is never mind anything else and I seem to remember when I went last time it was a Tuesday and I had had a particularly bad weekend where I could hardly walk.
I seem to manage for 4 days in work and then when I am off my body just seems to say "right that's it, I am not going to play this game any more" and I just either constantly sleep or don't sleep but feel absolutely wiped - if that makes sense.
Anyway thanks for your advice. It is very much appreciated xx
Hi Landslider, so sorry to read u r going through so much pain and discomfort. Has ur GP tried u with some biofeedback which some very easy steps to follow retrain ur sphincter to act differently worked at first for me, but then due to infection the consultant said needed a resection, gave me back my dignity and less pain when going to bathroom, unsure if issues with my bowels linked to my fibro. I had my rectocele repaired in Oct 2012. I needed a part of my bowel removed as said it was in bad way and they completed a resection. After op have had no issues with bowel until recently. Was hit with severe viral infection at end of year and body still not recovered. A lot of my tests are now coming back positive showing inflammation in my colon, digestive system. Before getting the rectocele constantly told issues were due to my fibro, took a lot of tests and getting an understanding consultant to realise how bad it was. Sending love hope things settle down for u, at present I'm undergoing some extensive tests as now believe me to have colitis or crohn's or other bowel issues praying nothing more sinister. Always go with ur gut instinct as u know ur own body and if something don't feel right don't let them fob u off. Far too easy for them to link everything back to fibro. Luckily I have an excellent gp and consultant who are leaving no stones unturned xx
Thanks to all who have replied and kindly offered me advice and support. Although I probably knew deep down I should go back to the GP, it is so good to hear from people who understand. Sometimes just talking about it makes it more clear in your head and when this is reinforced by others it makes things so much easier.
So thanks guys and I hope one day I will be able to offer a shoulder for one of you xx
I used to be a very active guy too and hate going to doctors but I have good working relationship now. I usually book a double appointment which gives 20 mins or drop him a note beforehand so he can think about it. I always write a list down of what I want to cover before I go so everything gets done and it prompts me to talk about the bits I don't want to! But Ducotose twice a day, hydration, peppermint tea and watching what I eat has brought it within reasonable limits for me. The ladies above sound much more experienced. One friend recommended colonic irrigation another a teaspoon of olive oil a day apparently an old Roman treatment!
Sounds like you have a really good relationship with your doctor. Mine is lovely, it is me that is the problem lol
However, I did mention as I was about to leave today that my bowels are not very happy and that I have been going 7 days without relief.
He has given me fibogel twice a day and said that if I don't start to go at least every 3 days, I have to go back and see him.
Took 2 this evening to try and give myself a kick start so fingers crossed
I used to drink peppermint tea when my IBS gave me the 6 months pregnant look hahaha
I seem to have gone off all my fruit teas and all the nice things I used to eat such as fruit for breakfast - makes me feel sick at the moment - seem to crave fizzy drinks like Tango or Fanta - and I have always hated them - full of sugar and disgusting additives but I can't help it.
Tea makes me feel sick nowadays and often coffee too. I am okay with OJ in the morning but I have to be careful because I have impaired glucose tolerance and shouldn't have sugar.
I am always thirsty at the moment - especially in the morning - probably my medication
Mmm I am insulin diabetic and sugary drinks are bad news. If your dehydrated then your body will extract more fluid from your poo as it passes through you trying to claw back water. Constant thirst is linked with Diabeties have you checked your sugars lately should be about 6. Chemists often check them to save nurse appointment. I think it's all linked up somehow. I'm no Dr but up your fluid intake perhaps room temperature water see if that helps. Glad you spoke to Dr about it 👍
I hadn't given the sugar thing a thought - doh. Had 6 month tests done last week so maybe they will show something.
I hear what you are saying about the fluids and I am drinking loads - I have a large OJ and a cup of tea first thing, then i have another 2 (usually coffee) before 10 to help me wake up and quench first.
I drink water and squash in between - just can't get rid of the dry throat and thirst - got to be the meds I think.
I actually have a little machine for my sugars but haven't checked it lately.
Will do at intervals over the next few days and see what comes up.
Hi Margret, OJ is good for you but has fructose a type of sugar in it but a glass in the morning will do you good. Coffee is actually a diaretic and increase thirst! Lol lots of people with FIbro seem to have dry throats, I think there was a post on here yesterday about it, your right it might very well be MEDs causing it. It never sits still Fibro it moves around giving you different problems, bonkers really. My a main problem at the moment is chronic fatigue from doing very little. My wife turned up with a wheelchair from a friend for free very nice folds up have to be pushed. Not sure I am quite ready yet but I know the day is coming !
boo, I feel like that some days too - it is horrid isn't it. Do not give up. I was nearly crying this morning, i felt so wiped and drained and I felt really sick too. I was on my hands and knees in the hall with my head on the floor and having a word with myself - must have looked absolutely ridiculous hahaha
Anyway I forced myself to get dressed for work - didn't even wash - decided my armpits smelled okay - bit of fresh roll on, cleaned my teeth and off I went.
I don't do make up and I just tied my hair in a bun so nobody was any the wiser hahaha
After about 3 hours, I started to feel human again. I think being in work just gives me something to focus on - although sometimes I could just cry - it is really frustrating when you can't remember anything. I have little secret notes in my drawers in work with memory joggers on them heeheeheehee
I dread the day when I am not able to manage it - and I do feel it is coming - but it is gonna have a whopping great fight on its hands lol xx
Let me know if you let loose on the wheelchair - you can get sat nav's for them now you know hee hee
I did my bloods before bed last night - 8.2, then at 5.30pm before dinner - 4.6, then 7pm tonight after a light meal and taking dogs out - 10.6 - what is that all about???
Hi, I had my retrocele surgically put back in place about 7-8 months ago. Then my bladder was also pushed back up surgically. I haven't had problems in that regard since. I to have really bad IBS and understand your discomfort. I can't afford to buy herbal over otc medicine so I get perscribed medicine. I take miralax and fiber, colace and amitza to help me have a bowel movement.
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Eat lots of prunes my Dad always swore by them.
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