Left Sides Colitis
Hi first time posting.
I need advice and don’t know where else to ask where people actually respond.
Background: Chronic Constipation, with bouts of Diarrhoea, Mucus and Blood. For the last 12-13 years.
Told IBS, treated with laxatives that only sometimes work.
I was admitted in October 2010 age 25 sigmoidoscopy done. Never told any results discharged told to change my lifestyle.
Skip 12 years where I had loads of Gynae issues caused by Endometriosis so ended up have a hysterectomy Age 29.
Still bowel symptoms but GP still saying IBS.
Age 33 2017 diagnosed with Bladder prolapse ( still waiting for surgery ) urinary incontinence is severe.
Bowel bleeding episodes happening every couple months.
Feb 2022 had a particularly bad episode ended up in hospital CT scan done, no results given to me.
Since this episode I’ve become faecally incontinent, whether it’s hard or loose stool.
After yet another bad bout I went to see a different GP who was very concerned and did a calprotectin test.
That was 312 and she ordered an urgent Colonoscopy.
I had that on Tuesday and was clear. They took 14 biopsies and 12 images and I have to wait 5-8 weeks for results.
They did find that I had zero tone in my anus muscles and referred me to the surgeons for repair surgery!! So now doubly incontinent, not holding out any hope for this surgery as waited years already for front end!
Anyway after Colonoscopy I got a report that stated my history:
2010 Microscopic Colitis
Feb 2022 Left Sided Colitis
Not once was I told about any of it!! I’m actually so angry…
But what is making it worse is that it doesn’t seem they are gonna do any more investigating.
Or refer me to GI to see a consultant.
And I’m convinced that if I had been treated properly right from the start I wouldn’t be 38 and faecally incontinent….
Does anyone have any advice on how to proceed?
Advice on left sided colitis and just generally answer my many questions cos no one else seems to.
I’m so upset and lonely right now.
Thanks Shiv x
Hi
. You have certainly been through a lot and know that plenty of people here understand the frustration with diagnostic difficulties and delays. Given that you now have medical history documentation of colitis you should see a gastro specialist. Don't hesitate to demand or do what you have to to make it happen. I do want to share with you some information that may be helpful moving forward. I noticed you mentioned endometriosis. This article from our editorial team looks at the connection with IBD, noting that "One study showed that women living with endometriosis may be up to 80 percent more likely than other women to develop IBD:" https://inflammatoryboweldisease.net/clinical/ibd-endometriosis-link. Also, this article looks at microscopic colitis: https://inflammatoryboweldisease.net/types-of-ibd/microscopic-colitis and this article gives an overview of treatments, with links to specifics: https://inflammatoryboweldisease.net/treatment. Concerning surgery to repair anal muscles, there are actually a few types and this article from the National Library o Medicine gives an overview: https://www.ncbi.nlm.nih.gov/books/NBK50672/. The surgeon should be able to provide specifics (demand them if they are not forthcoming). I know that this is a lot of information, so you may want to look at it in small chunks and write down questions for the doctors. You are not alone and this community is here for you. Hopefully others will provide some insight from their experiences. Feel free, if you like, to keep us posted on how things are going. Best, Richard (Team Member)
