The worst few months of my life!!

the worst few months of my life!!

At the beginig of october last year i woke with pain in my stomach which slowly got worse then the vomitting started i was told by my doctor it was a bug that was going round, it lasted a week n then i was back to normal so accepted that it was a bug.
Two weeks later the pains started again followed by the vomitting at this point i couldnt even keep water down so i went to the A&E department who said yet again it was a bug and sent me home. over the following two weeks the pain and vomiting got worse, i had various trips to my doctors and A&E department but noone would listen.
At this point i became distressed that noone was helping. yet again i went to A&E i saw a lovely nurse who realised something was'nt right and was finally admitted into hospital.
Two days of nil by mouth and various tests discovered i had a gal stone and a abnormality on my bowel, i was then sent home with nothing, no help and no medication. I then spent the following 2 months in and out of hospital as i was unable to eat and drink due to the massive pain and vomitting but atleast someone was finally listening i was finally diognoised with crohns and sent home to meet with a specialist with a massive amount of steriods and antibiotics.
I met with the specialist on wed 30th december who really didnt do or say much, late that night the pain got really bad so yet again i ended up back in hospital i dnt really remember much of what happend on thur and fri they kept giving me morphine for the pain. I was told on the sat that i needed surgery to remove a small part of my bowel by keyhole this was going to be done on monday 5th.
Monday came all my medication was stopped and i was prepped for surgery unfortunatly my surgery was cancelled at the last min. that evening was the worst of my life the pain was horiffic i has never felt anything like it i had a panic attack and was no longer able to sit up i dnt really remember much after that, i woke up in recovery my bowel had perferated i spent the next 4 days unable to move i was pumped with that much medication on the fri i was taken off all my medication and left to suffer in aggony. I had a massive dressing across the whole of my stomach which was never changed everytime i asked a question they were "to busy" to answer. I was sent home the following tue a week after my surgery with no information and yet again no help.
I had my staples removed by a nurse at my doctors surgery a week later to my suprised i had a massive incision down the centre of my stomach which noone had told me about yet again. once these we removed parts of my wound opened up and puss and blood came pouring out i had a massive infection. i was put on 3 diferent types of antibiotics and ive spent the last few weeks getting my dressings changed daily by a nurse my wound opened so far they started talking about more surgery to remove the infection which i refused my wound is finally starting to heal.
I still have no interest in food and have lost over 3 stone in weight and im still in a lot of pain, the thought of going anywhere scares me i darent leave the house. Im just glad i have an amazing boyfriend to help me get through all this. Im now waiting again to see the specialist.
My family have a long history with crohns but i am the first to need surgery.


Well i had my MRI results good news no fistula, but bad news is the crohn's has spread i have a few sites that are "enlarged" but i have been warned of a really bad bit, i have also been told its in my mouth which explains a lot. My appointment with the specialist has been brought forward to this week so i can get started on medication ASAP.

hi jk86
WOW your going through it at the moment my heart goes out to you.
so glad you have an amazing boyfriend seeing you through all this dont know what i would do with out my loving hubby and children .
sending hugggs your way .xx


shazamataz85

Thank you xx
It's so nice to know there's people out there who are going through the same.
Even tho I have other family members im still finding hard as I dnt know what to expect after surgery.

Hi jk86 and welcome! Oh boy, you certainly have been through a lot in such a short period of time. Thank goodness you have such a wonderful support system. That is key.

How are you feeling at the moment? Any improvement? Are you going to take a maintenance drug to try to keep the inflammation from returning?

I hope you feel better and better each day and you have much, much better days ahead!

Hello
I'm still in a lot of pain I had a MRI scan yesterday the doctors are concerned I may have a fistula if thats how you spell it yet again noone will give me any stright answers they said 2 wait the results before they will discus it with me.
Im nt on any medication at the moment but I've been asked to join a drugs trial I'm still unsure.

whereabouts in the UK are you?
i had a distressing time last september too, but nowhere near as severe as you.
i had been in hospital and was told i had crohns - given IV steroid/antibiotics and sent home. (i had several tests cancelled on me - barium xray, mri etc) the pain then came back, and went back to hospital. transferred to another hospital for exploratory surgery. i was prepped for surgery, then it was cancelled.. and was given a high dose of steroids that morning - and ended up with massive roid rage haha! eventually i had the surgery and they removed my appendix and told i just had IBS

HOWEVER.. my pains are still there, and my diarrheoa/appetite loss/nausea/urgency are worse than ever. but now i have really bad joint pain too
so finally im booked for a colonoscopy.. and an xray and blood tests to check for arthritis

the JOYS of the NHS, being fobbed off and passed from pillar to post!

i really hope you feel better soon x

I'm from a little town in county Durham. My crohns was finally diagnosed by a simple stool sample.

I can't believe they have put you through all that and your still no further forward. when are you having the colonoscopy I got lucky and missed that part out haha.

I had all your symptoms for about a year but they weren't to bad I did go to the docs and they said it was a dairy intolerance I also have suffered from painful hips which they now put down to the crohns I wasn't aware that It caused such pain.
Even through all the pain these last few weeks I'm so glad I gad the surgery it really does help I'm just looking forward to getting on with my life although i no Its going to be hard to find a job i lost my job due to too much Illness x

that sucks big time about your job. fingers crossed you can get a new one.. although even harder in this economy.
im dreading the scope.. got my bowel prep stuff through the post yesterday. yay! :-/
ive also got an appointment now for an xray of my knees and more blood tests

i do think, if i do have an IBD - i must only have a mild case - because ive got no weight loss (although my appetite loss is becoming more frequent)

oh well... hopefully ill find out soon x

Oh jk86 what a time you have had! It sucks about your job and not being funny but this smacks of descrimination to me. Your employer obviously had not heard of the DDA - yes crohns is classed as a disability. I also realise that I am incredibly lucky with where I live, I am only 20 mins away from Addenbrooke's hospital which is a huge teaching hospital and 'specialises' in lots of area's, therefore I have not had to deal with cancelled tests etc and I had a great team sort me out with my surgery. Do they at least still have you on something for the pain? What info do you have about this trial? You never know someone else might know something about it and can give some advice.

NB Welcome to the forum, I am glad you have found us

Thank you all so much its great being able to talk to others ive been so down lately.
The syptoms your describing is what i had for a year I was always in pain but learnt to live with it da only part I didn't have was weight loss i actually put weight on until the massive flare ups i now look such a mess.

All my pain relief was stopped the fri after my surgery the only pain relief I've been given paracetamol I went to see my normal doctor who has given me omeprazole and dicycloverine hydrochloride to stop the spasms.

I was sent an information leaflet about the trial its nt a new drug but its neva been used after surgery I'm still unsure I don't even know if I'm going to be started on any medication for the crohns I do know that I'm going to be started on B12 injections.

Hi jk86 - am SO sorry you've been through the mill so much in such little time.
When my crohns was so bad I was taking that many steroids that I looked like a fat frog - luckily as you recover that extra weight will go as your steroids decrease.
I too lost my job a couple of years ago due to being off with crohns and depression, and I was covered by the DDA. I worked as a civil servant and they treat DDA people with contempt believe me.
I really hope that all goes super well for you - keep us all posted
Big gentle hugs from Kernow
xxxx

Hello hexie
unfortunately I can't do anthing about loosing my job as I had just started and on the 13 wk probation although I dnt think they believed I was Ill they were pretty rude to me I'm glad i dnt work at that place if that's how they treat people.
I was pretty lucky with the steroids Infact I lost weight and Im still struggling to gain weight when I do leave the house everyone comments how awful I look haha xx

What is the dda? I have missed 3 weeks of work now due to y Crohns. I have been rally worried about losing my job. I am scheduled for surgery Friday to remove my gall bladder and am hoping I will feel well enough to go to work Monday.

I'm so sorry you have been through so much. I hope things get better.

I'd been working at the same office for almost 15 years and the new boss knew I suffered from stress and depression so she played on it which kicked up my Crohns as well. I ended up having lots of time off work due to her and she was the one who sacked me just before my 15 year anniversary. That meant they screwed me on my compensation aswell - had less than half of what I should've got. I just had to take it and keep quiet.
DDA is the Disability Discrimination Act - I was covered by that and I still lost my job - in all honesty it doesn't cover your butt (scuse the pun) that much - well it didn't work for me
jk86 - you'll begin to look alot better when things settle down a bit more - hang in there and things will get better. I was told I'd be dead by the time I was 30 - I've passed that and I'm still going so it shows things improve.

Sorry if this is ignorant but I'm in the us, dO we have the dda?

oh...my...god! Sounds like you have the worst medical treatment in the country. Those Docs were so careless. Hope you feel better :hug:

Hi gabismommy, I think the US equivalent of the DDA is the Americans with Disabilities Act of 1990 (ADA). Also look into the ADAAA which was passed in 2008

Thank you! I will look in to that!

Wow, what a story. I really hope you can get a plan going that can help you and your Crohn's goes in remission. A prayer is being sent your way! Kudos to your boyfriend!
Kit

Well good news my wound is pretty much closed up now yey
My doctor wants me to try 6-MP I've been reading some horror stories on here now im really unsure help.......