I think I'm just looking to get this down somewhere and have a general whinge.
I had a total colectomy due to ulcerative colitis in 2017, emergency surgery due to a flare up, nearly died and ended up with an end ileostomy. When I was well, I decided to try a jpouch, tbh for no other reason than vanity and hey, if you don't try you will never know. I had the jpouch formed and rectum removed in April 2019, left with a loop ileostomy to heal and the jpouch was finally connected in December 2019. Due to the lockdown in March 2020, I never got my check up.
In May 2020, I developed an abscess that was diagnosed as a Bartholin cyst, got very infected and made me very ill, ended up being admitted for IV antibiotics and for it to be drained. I did query at the time if this could be a fistula, told them about my history with my jpouch but because I was admitted under gynae as opposed to GI they were more focused on the gynae issue.
A few weeks after this, I started passing gas and faecal matter out of my vagina. I went to my GP who referred me back to gynae, and to be fair they were fantastic. Listened to my concerns, and the consultant insisted on getting my GI consultant who formed my jpouch involved, and also referred me for a fluroscopy. I got the fluroscopy pretty quickly (in October last year), and an appointment to finally see my GI consultant was scheduled for December. This was, however cancelled, and wasnt rearranged until July this year after I had to push.
At the appointment in July, I was told that they could not see any evidence of a fistula, and I had to push for further investigation, which he eventually agreed to under GA.
I had an examination under GA at the start of October this year, and lo and behold they found the fistula and inserted a seton stitch. I was just kind of left to figure that out on my own and sent on my way.
Saw my GI consultant today, and he discussed next steps, further surgery to repair the fistula, however he was very clear about the slim rates of success and the possible consequences, faecal incontinence being one of them. I asked if I could just go back to my end ileostomy, which could he done however the fistula would still need to be repaired. He then followed this up by informing me that as of today all his surgeries from now up until February were being cancelled due to resources being diverted because of covid. The earliest I am likely to have surgery is sometime next summer.
I am so tired and fed up. I 100% acknowledge the difficulties the NHS have faced over the past couple of years. But I feel so.....despairing of it all. I feel guilty for being upset about passing gas and faecal matter out of my vagina when there is no risk to my life, and there are people there who do need life saving procedures and these must be prioritised. But.....I'm still going to be shitting out of my vagina in the meantime .
I feel dirty all the time, I feel like I've lost my sexuality, I feel like I've lost control of my body. On top of trying to hold a full time job down, do a part time degree and be a single mum to two teenage girls who have also been through the mill watching their mum go through this. And my DP, who I got together with after my first surgery, he didn't sign up for this (he is my absolute rock though).
If you have got this far, thank you. I think I'm just having a massive pity party tonight and needed to vent in relative anonymity. I'm normally so positive about things, and I WILL pull myself together. Tonight, I just need to despair a bit I think. I have counselling tomorrow, so that will be helpful too.