I’m 2 months post treatment and I’m really struggling with my bowels
I did have lots of upset tums during the treatment and lived on loperamide for a while. After I finished it did seem to improve but the last couple of weeks have been horrendous. Also suffering from really awful trapped and not! Wind… It’s affecting me going out etc and I’ve just started back at work so it’s not ideal.
Has anyone else had this issue? I am seeing the nurse tomo for the dilator chat! (Joy) so will ask but thought I might get some 1st hand advice too
Although I have problems with my bowel because of my surgery, it's not in the same way as it manifests in those who have had the treatment that you've had, so I'm afraid I can't offer any first-hand advice. However, what I do know is that you DEFINITELY not on your own!! This is an incredibly common side effect of the treatment that you've had and I think it's not unusual for women to have to try several solutions before they find one that works best for them. Was the appointment today useful? I hope so.
I'm not surprised it's affecting other things for you - you poor thing - it must make you feel very vulnerable. There are other women here who will be able to tell you what worked for them, but in the meantime I just want to send you my love and hope you can resolve it to some extent soon.
Love, Annabel. x
Have you thought about asking your GP for a referral to a gastroenterologist specialising in pelvic radiation disease (PRD)?. You could also look up the pelvic radiation disease association online. If you are on facebook, there is a support page for PRD (I am one of the admin) which you could send a request to join. We do send out a standard message to check that it is the right place for you and that you actually might have PRD...it does sound as if you might have though. If I don't get back to you, one of the other admin will...just say that Ceri sent you! xx
yes I suffer and am 6 months since treatment end!! The good news is that I have more better days than bad these days. Sorry if this is TMI but some days I have lots of wind and mucous and feel as you say "vulnerable". Its awful being at work when its like this but I definitely feel its getting better than it was but its taken time. In the earlier days I was taking lots of imodium but haven't used it for some time. I ate lots of starchy stuff to begin with but have slowly re-introduced my normal, balanced diet although I cant overdo the veg as this makes me worse. I am not joking when I say I was going to the toilet to have a bowel movement at least 8 times per day. Wasn't always loads to pass and sometimes just mucous but the urge was there. On the bad days this can still happend but I cant always link it to anything specific. My motions were also soft and unformed or loose but gradually they have become more formed which also has its problems for me as I have an external hemorrhoid so its sometimes quite uncomfortable (oh the joys!). Anything you want to ask, dont be shy!! Here to help. Hope it soon gets a bit better xxx
Ceri - just read your post - will look at the FB page
Hey everyone. Thanks so much for the responses!
It’s good to know I’m not alone. Yup the wind and mucous are ever present at the moment. Today is a particularly bad day, been about 10 times already and know it going to continue long into the night.! Have now also got piles as well I think due to the constant visits to the loo !
I saw the nurse yesterday who is referring me to the dietician as a first option. Not sure how that will help but will go with it for now, she has said that there’s a lot we can do but this is the 1st stop. Am seeing my GP tomo so will ask about the gastroenterologist too
Have sent a request to the Facebook group.
Thanks so much everyone.
I know you're having an awful time, but it's still very early days and things will most likely improve. Stressing out over it doesn't help, but you can't stop yourself from panicking if you don't know where the nearest loo is. I know, I've been there ....
Andreac - I was very much like that, (with untrustworthy f***s as a bonus) but now I'm two years out of treatment and can eat just about anything I want - apart from beetroot for some reason. I even managed to do the cabbage soup diet with no major ill effects!
Charcoal/clay based medecines are really good for wind as are caraway seeds - I add these to my cabbage soup!
Hope you're feeling better soon.
Hi all - so sorry to hear about your troubles. Sounds ghastly. As Annabel says, those of us who were treated surgically often seem to have sluggish bowel/constipation issues (totally at random in my case) which bring their own challenges but we do sympathise.
I just wanted to mention that my nurse told me about a card you can carry that indicates that you might need to use the toilet at short notice. It should mean that you can get help while you are out and about, for example to access a staff loo or generally queue jump. Kind of embarrassing to have to ask, but not as embarrassing as not making it.
I have had a quick web search and think she might mean this, unless there's something else that people know about? http://www.bladderandbowelfoundation.org/resources/toilet-card.asp
The card is called a 'Just can't wait' card and costs about £5, though I have had problems in shops with getting them to let me use their loo as it is not a card that carries any legal requirement. You can also get a radar key for £5...
I am a Women's Health physiotherapist. Get a referral into your local NHS Women's Health physio team or suss out if any private WH Physios near you. They will do a full assessment of your pelvic floor muscles and try to address your bowel and bladder issues. Im based in Belfast and work NHS/private. Physio isn;t just about sore backs and sore shoulders!!!
If you have problems controlling bowel/bladder get it assessed, don't ignore it! You don't have to live with/put up with such destressing symptoms!!!