Scenes From A Hospital Bed

27th Feb 2011 It’s been 6 weeks since my diagnoses of Crohn's disease, although I have been suffering for many months prior to that. What is Crohn’s: an ongoing disorder that causes inflammation of the digestive tract, also referred to as the gastrointestinal (GI) tract. Crohn’s disease can affect any area of the GI tract, from the mouth to the anus, but it most commonly affects the lower part of the small intestine, called the ileum. The swelling extends deep into the lining of the affected organ. Ref: The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK Crohn’s has decided to “invade” my ileum and the inflammation has almost blocked that part of my small intestine, secondarily resulting in a fistula (hole in the intestine wall.) I’ve been having the standard medical treatment of steroids etc but unfortunately they have not worked to reduce the inflammation so the only option left is surgery. With this blog I aim to chart my progress through pre-treatment, surgery to remove infected bowel, post surgery recovery, a second operation, stoma corrective surgery and finally my inclusion in new two year drug trial which is meant to stop Crohn’s returning once surgery has removed the infected bowel.

[matthewpowell17]

The story starts here

First full day back at home, amazing how just being home can make you feel a whole lot better, anyway as promised here's a bit more detail of what I've been through over the past fortnight. I will try keeping posts short so as not to bombard you with every detail all at once so following isn't a reading nightmare 

I was admitted on the 10th for surgery the following day, Day 1 had a visit from the anaesthetist who explained fully what he was going to do regarding anaesthesia and pain relief. He offered intravenous epidural as the preferred method and the best method of post op pain relief, the other option being self administering morphine via a PCA, I elected for the epidural and thank the lord for it, but more about that later. After that came the usual consent form filling along with a visit from the surgeon, (right here and now is where I take my hat off to a fantastic man, I couldn't have been in better hands) explaining the procedure and of course any number of things that could go wrong. However he didn't leave me in any doubt that everything would be ok. That just left me with an evening of reading and nil by mouth till the following afternoon when surgery would take place. That's where I'll pick it up from next time, and that’s where it starts to get interesting, well for me anyway.  

[matthewpowell17]

Recovery

Day 10 after operation, still in hospital, have found this hard to update as have had to do it from my iPhone using a very unreliable 3G signal. As soon as am home will update fully from day of operation

[matthewpowell17]

Hospital food

Well I never thought I'd say this and to be honest am slightly loathed to admit it, but have just eaten a very palatable hospital meal, I'm not kidding, macaroni cheese with mustard seeds, yeah I know hard to go wrong making something so simple but we are talking hospital food anything could have happened. My very best complements go out to the warmer upper, thank you for my first clean plate, was getting tired of just pushing the food around with my fork up look like I'd eaten something, maybe I'll start putting on some of the 10 kilos I've lost in weight x

[matthewpowell17]

There is hope

I've found the only thing abrasive enough to remove the residue left behind by 3M hospital tape, and that's the comfort softness of an NHS towel

[matthewpowell17]

Operation

Sorry have been to ill after operation to keep this updated. However I'm off the emergency care unit and back into a normal ward so as long as my 3G signal hold out I'll begin updating you on the past few days

[matthewpowell17]

Operation day

Well today's the day for my operation, just sat on my bed waiting to go to theatre.

[matthewpowell17]

Admitted

Well here we go again back in the care of our glorious NHS, been here a couple of hours and they haven't managed to come and put any sheets on the bed yet

[matthewpowell17]

Final Countdown

This is it the last few hours at home before heading of to hospital, expect to be in for about 10 days providing op goes well

[matthewpowell17]

Drug trial

I've volunteered to go on a post op drugs trial. The trial last 2 years and is meant to stop any recurrence if Crohn's after an operation to removed infected area which under normal circumstances will inevitably return at some point in the future. Will keep you posted as to it progress as and when. Can't remember what the drug is called at the moment but will update when I do

[matthewpowell17]

Why do i feel better this week than last week

Does it have anything to do with what happens when you go to the doctors? You know how it is, you feel rougher than a badgers backside so you finally convince yourself you need to go to the Doctors, the minute you sit down in the waiting room the symptoms you presented seem to miraculously disappear and you feel like a fraud 

[matthewpowell17]

Prednisolone

Have got the steroids down to 10mg as of today, when I reduced to 20mg the other week symptoms returned sending worse than ever putting back in hospital, the fact that in less than 2 weeks after coming out of hospital I've managed to reduce the dose from 40mg down to 10mg without to much in the way of pain is encouraging. Doubt that's going to stop them opening me up though, still can live in hope.

[matthewpowell17]

Should I eat a big meal

Just wondering whether I should eat something really nice for tea tonight, am meant to be surviving on high energy drinks and a low residue. The thought of starting back on hospital food is almost enough to make me not want to turn up there tomorrow. 

[matthewpowell17]

Pre-anesthetic Assessment Clinic

Just been to the PAAC for assessment, all good for admittance to UCHW tomorrrow

[matthewpowell17]

The dreaded call

Well was hoping that just maybe they had forgotten about me, no such luck though. Just had the phone call, in Thursday, under the knife Friday

[matthewpowell17]

Not gone in today, at least another 24hour grace period, thank you very much, while you're making wait why not push pieces of bamboo under my fingernails to add to the torment

[matthewpowell17]

Steroids and sleep

Not two words that should be in the same sentence, not unless it's to complain about the lack of shut eye. Since starting on the steroids (about 5 weeks ago) the maximum amount of sleep I've managed has be roughly 3 hours a night. Not sure but the dog is getting so many late night and  early morning walks I could swear her legs are getting shorter...!!

[matthewpowell17]

Weekend at home

Have been let out of University Hospital Coventry for a couple of days, back in next week for operation. Won't start panicing until the night before, maybe 2 nights alright panic starts now ok....!