Getting correct support from surgeons

[cw77]

Hi there

I'm a 38 year old female- June 2014 I had a rather bad perianal abscess -4 days in hospital,deep, 2 months of daily dressings changes, fistula and consequently Seton stitch inserted December 2014. Left with a good bit of scar tissue in that area.
On top of this... a separate issue developed month or two earlier to abscess -bowel incontinence. After months of investigations/tests they've said I have basically got IBS of the rectum, so the waiting time for the loo is minimal. The blessing is in general I only go to loo the same amount of times each day, but there are variations to this and using that chart detailing the 'types' of poo (sorry) looser stools happen and make me housebound.
I've been really keen on exercise and walking at pace a lot. I had an incident in October where two GP's wanted me back to hospital as the area around abscess filled up.
After this happening yet again, I ended up spending a lot of time indoors, and to me there seems to be a direct correlation between exercising, flare up of the scar tissue with pus, and real agony.
GP's help the best they can but are unable to move things forward-having previously been under 2 surgeons (1 for fistula, 1 for abscess/seton stitch) I was getting two different points of views, and I feel as if they're not addressing the impact exercise has on the area, or indeed the incontinence flare ups themselves impact it too.
I've another hospital appointment coming up soon-please can anyone offer anything who may have had similar experiences. I feel as if the lifestyle issues aren't too important when I go to the hospital, maybe saying 'well it is going to interfere in that area'
Anyone give any support in light of similar experiences?

 

[EvieBaby]

I had a seton put in about 18 months ago but I think I was quite lucky that I never had a problem with it and even now I forget that it's there. It sounds like you've had a really bad time with that area and it may just be that if it's really sensitive any extra movement may just cause rubbing or soreness.

I know this doesn't really help you but it's so hard to get doctors to listen. I've had real problems with leakages and accidents but no one will address it no matter what I say. I'm not really quite sure what it is I'm meant to do.

Have you tried exercising but perhaps covering that area with some gauze or dressing so the skin doesn't rub and cause irritation?

 

[cw77]

Thank you-I didn't know my anxiety would reduce when somebody echoes the words that I feel regarding the issues.
I tend to find that gauze/towels irritate the area, leakage and urge as well, I'm sorry about leakage for you-Its hard isn't it? frustrating and difficult when you don't feel like they 'hear' you at the surgery.

 

[cw77]

Well-A little update-got to have exploratory surgery soon...I was told a risk of all this is proper incontinence because of the location of the fistula. its hard because I feel at the time of appointments I cant process the information quick enough to ask further questions about what stuff means... and think of the questions afterwards.
I think the surgeon was saying that he has options of removing Seton/slicing out fistula (Why now, when I've had this for so long?But he thinks that the Seton has moved into a 'wrong' place and is causing me pain.
As I've IBS of the rectum-and sphincter muscles are 'okay' I felt as if I was being told to expect urge incontinence- and that itd be worse and impacted by the fistula and Seton stitch.
Sigh... Any experiences anyone?

 

[Lisa]

cw - have you been diagnosed with anything other than the IBS and fistula? Any cause for the fistula/abscess to have formed in the first place? There are medications that have helped lots of people, myself included, with fistulas. However, if you don't have any diagnosis other than IBS I would want to look further into why you are having these other issues.

 

[cw77]

No, thank you I appreciate your reply-I haven't anything else just the rectal IBS which is different to normal IBS apparently. I hope people do not mind me using this forum as I know those diagnosed with Crohn's have unfortunately fistula issues.
I may be being sensitive or super sensitive but feel surgeons are saying its natural to have urge incontinence with these issues....loperimide I think prescribed today but doesn't that just help if you've looser stools which is only occasional to me?Time will tell.Thanks very much