hi guys

i don’t even know if this is a jpouch / colectomy related problem however I’m desperate for any help/ advice.

im in the UK. Had colectomy with jpouch created 16 yrs ago.  Ongoing pain due to adhesions which has resulted in several small intestine obstructions requiring emergency surgery over the years.

I’m a 51 yr old female, no menopausal symptoms, period still regular etc.

i have have had 3 haemorrhagic ovarian cysts  in the past 10 yrs, luckily slowly dissolving without need for surgery.

thats very basic summary, now to current issue; approx 10 days ago I started with general abdominal pain, this increased over a week until Thursday 4 days ago. The pain is severe and has settled in low abdomen especially right hand side and radiating through to lower back. I can barely walk, when I do move, the pain shoots down both my thighs as far as my knees. I can barely stand straight, therefore when I have to move I’m slouched over, bent over like an old lady! The back pain is in spasms. When I lie down on my back the pain eventually settles. 

Nits so bad at times I find myself whimpering like an injured animal - not good!

on Saturday evening I called NHS 24 who sent me to their out of hours clinic. Luckily I was seen by a GP from my own doctors surgery who I kind of know. My temp was slightly raised but not alarming and my BP and heart rate also high likely due to pain. He examined me and couldn’t find any obvious cause for pain. He gave me options - 1. He would take bloods and have them analysed by lab and results within a few hours, he would call me at home with results and if necessary get me back up to hospital or 2. Admit me and get better pain relief and and an ultrasound scan faster than if he referred me to have scan done via outpatient appointment. 

I should state that I live within 4 miles of hospital. So I chose first option as like most of us I hate being a hospital patient. So he did call me within 2 hours telling me all he bloods he ordered are within normal range = nothing urgently wrong with me. So obviously great relief, however no solution. 24 hrs later and pain has not subsided at all, I still whimper and moan. I will eventually get an appointment for abdominal ultrasound as GP agrees it may be another ovarian cyst which has perhaps twisted my ovary. 

So - please, please, can anyone give me any advice? Im

at wits end. I should also say I have FAP, and take OxyContin both modified and immediate release, Buscopan, ibuprofen and paracetamol . The Oxy is zero use as I have taken way more than prescription dose over the past few days and it hasn’t helped the pain at all. Obviously I told the GP about the extra I was taking as I was at wits end. Now I’m lying in bed with hot water bottles surrounding me for relief/ comfort. 

Any advice gratefully received! 

Many thanks

kindest regards

sylvia

Original Post

I’m sorry you’re in such pain, Sylvia. It’s probably not pouch-related, especially if it doesn’t feel like an obstruction, which you are all too familiar with. They’ll just have to start looking for the source, whether it’s ovarian or something else. It could be something like a herniated spinal disc, which can feel like pain in whatever body part the compressed nerves are carrying signals from. There are lots of other possibilities that they’ll have to consider in turn. Good luck!

Thanks for your reply Scott. I was eventually admitted to hospital on Monday June 17th. Spent 4 nights as inpatient came home last night.

My pain has reduced significantly since last weekend, my usual dose of OxyContin is 40mg twice a day (slow release) and additional 10mg immediate release for breakthrough pain. In the short term until the pain is more manageable I’ve been increased to 40mg immediate release every 4 hours. 

I had an ultrasound and CT scabs which showed nothing significant, however my consultant, based on past medical history and the fact I have substantial adhesions has diagnosed that I probably had a twisted small intestine, he thinks the gradual increase of pain ending in the intense, acute pain was the bowel beginning to twist. By the time I had my scans- 3 days after admission to hospital the acute  pain was more bearable and the twisting of the bowel had most likely resolved itself. I’m not convinced, however short of any other suggestion I will just go with it! I’ve been advised it may well re-occur and on that occasion I should go straight to A&E (that goes against my ethics - as I always feel a bit of a fraud just presenting myself there - I would prefer to speak To GP first and only go to hospital if he advised it as I hate to think I am using the NHS services unnecessarily- in the UK we kind of get it drummed into us to ONLY go to A&E if a true matter of life or death!) however ole ty folk still present themselves looking for urgent help for basic cough, earache, stomach upsets. Anyway I digress, so I will go straight to hospital if I ever have the misfortune to experience the same pain as at least I’ll be able to report what has occurred this time and hopefully get the correct treatment sooner - especially if I got there early enough for a scan to detect the bowel when it was still fully twisted. 

I’m hopeful to start reducing the dosage of OxyContin tomorrow and be back to my usual dose by next weekend.

Now I just have to hope it never happens again and get my stamina back up so I can return to work - I’ve had several supportive messages from my manager advising me that she ind one of my coworkers have been attempting to clear some of my “in-tray” oh dear - although I appreciate the sentiment I kind of wish they’d just left well alone as I think I’m going to be faced with a mess of epic proportions upon my return 😀. 

Mall the best to you and kindest regards xxx

 

 

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