Getting over emergency surgery, i feel like i will never get there :(

I was diagnosed with crohns in 2006, age 15. Up until this year i have been relatively ok...not well but ok.

In october of this year I went to cyprus with my boyfriend, it was an amazing 2weeks and i was really well. On the plane coming home i started to get pains, in my tranverse colon (where i have always suffered) i felt a popping sensation and after that i was in the most horrific pain i have ever felt. back in england my mum called the ambulance, i was taken to brighton royal sussex hospital. It took 2 days, an ultra sound, xray and finally ct scan to diagnose a perferated bowel. 15mins after my ct scan i had surgeons and anethatists crowding around me in bed. it was then i was told i had to have an op or i would die.

after being sedated for 36hours in intensive care, moved to high dependancy unit and finally up to a ward (this is where i can remember stuff from, my memory of itu and hdu is zero which is probably a good thing) i got my head around the fact i had an illeostomy. it is reversable.
i started doing quite well and was discharged one week after op. only to be readmitted the same day with an over active stoma, i was extremely dehydrated.
i stayed in hospital for just over a week, this was when i had my staples taken out. my tummy opened back up which was just awful and it transpired i had a wound infection. it was packed and i was told it had to heal from the inside out.
i was discharged once again with district nurses coming daily to redress the wound. my poor mum would spend the whole night up with my mopping up all of the horrible ooze that was seeping from the dressing justt as quickly as we were mopping it up. my gp came round and said i def needed to go back to hospital.

so there i was back in hospital again. i needed another op to clean out the wound and put a tube into the wound and into the rest of my colon as the rest of my colon had attached itself to the top of the wound. the tube will stay there until my reversal and my wound will have to heal around it.

i was discharged from the hospital yesterday for the 3rd time and although i feel well in myself and definately better than the other times i have been discharged i am still so scared. my wound is not yet healed and i woke up this morning and it had leaked through the dressing. i am so worried i will get another infection.

if anyone has any advice for me please please pleaseeeee share. i am very anxious and just scared about everything. i want the old me back

amy xxx

Amy you poor thing you have been through so much....:hug:

Sorry i don't have no advice...just wanted to wish you all the best with your recovery and i pray you don't get another infection.

thank you, its nice to know people care.

amy x

Hang in there Amy.
Recovery can sometimes be a very slow process and a bumpy ride.
Sounds like yours has been rough.
It can really test your resilience.
You will get better.
It just takes time. So be patient.

Hello Amy and welcome to the forum.

I am sorry to hear that have had such a tough time of things I have not had this type of op or complications thereafter so could not advise, we do have a stoma sub forum however this is worth having a look at as the folks here may be able to assist: http://www.crohnsforum.com/forumdisplay.php?f=46.

Please keep us updated on how you are getting on.

AB
xx

thanks guys, funnily enough samboi i have just been reading your thread about all youve been through this year. i guess we just have to stay strong and positive.

how is the more natural approach going for you?

amy x

Hi Amy
I have only just started the natural approach - so no obvious change yet.
I'm giving it a month or so to see if there is any discernible difference.
I'm hopeful.
And as long as we have hope - things are a-ok!
Good luck with your recovery. I hope it goes well.

Hi Amy,

I can't offer much in the way of advice but just wanted to let you know that I too am treated at the Royal Sussex Hospital. You're actually the first person i've seen on this forum living in Brighton so nice to know we're not alone!

Wish you well

hey Amy, i suffered from a perforated bowel to, i underwent life saving emergency surgery. i know your pain. you will get back up on your feet. i had my surgery 1 year ago and at one point i thought id never get back to normal, now im back to work doing 16 hour shifts....you just have to take it as it comes!!! hope all goes well for you. chris x

Hi Amy I too suffered from a perforated bowel and had to have life saving surgery. It took me three months to recover from it and three months before I could do anything for myself. You will get there but it's just slow. Mine was a yr ago and I too thought I would never get there. But now I'm bk to working 16hrs. Keep us posted on your recovery and thinking of you. Take it easy just rest rest rest xx

Hi Amy, I'm sorry that I can't offer any advise but wanted to let you know I will be sending prayers and healing thoughts your way. You will get through this and feel much better afterwards.

I wish you all the best and a speedy recovery :hug:

Hi samboi how's things I've not been about much lately

jam300, thanks i havnt met anyone with crohns around here either..the surgeons were amazing but im not sure about the medical consultants as i see mine in tunbridge wells and he is really good. have you had much support?

thanks hornby its good to know i will get there eventually...still got my reversal surgery to go yet...but im sure it wont be anywhere near as bad

cheerbear12 thank you, im feeling slightly more positive now as i am getting more energy back and still seeing nurses everyday so i feel like im being kept an eye on lol...did you end up with a stoma? im having a reversal feb/march i think as i have a foley catheter (acting as a plug) in my remaining colon and they have to take that out also. i have been reassured it wont be anything like emergency surgery tho

stressed mom thank you so much, support always makes things seem better and i hope your son is well

amy xxx

Do they have you on any kind of antibiotics?

Dan

Hi Amy I ended up with a stoma which saved my life. I'm getting my rectum and anus removed in may so not looking forward to it the only good thing I can say is at least they will do it when I'm healthy and not at death's door. I wished I could have a reversal but I got a diagnosis of indeterminate colitis which means they don't know whether I have crohns or colitis. I so wish it was a different story but nothing I can do just gotta make the best of what I've got.. So this is the best option for me. Good luck with the reversal hope it goes well and keep us posted. Glad your feeling a little better keep us posted xx

D Bergy I am not on anti biotics at the moment but was on iv anti biotics for 12 days 3x daily when i was in hospital. how come?

Cheerbear12 was it your decision to get your next operation or did docs say you have to? also will this mean you are symptom free? I really hope everything goes ok for you. op's will always end better when we're not at deaths door to begin with lol.

amy xxx

I was on IV antibiotics for many weeks while in the hospital and long after I was discharged. I had a bad infection and surgery and the long course of antibiotics took care of it all.

I was curious if possibly they did not use the antibiotics long enough. The main one I used was Invanz.

I hope you heal up proper this time.

Dan

Hi Amy it was mine coz I'm so much better with it and I don't want the risk of cancer down there. I just want it over with tbh but don't want to have to go through it again. The reversal has never been an option for me sadly I've only got nearly 5 months till it lol:/ and that's true lol. I will be if its uc but if its Crohn's could come bk. I'm thinking its more uc than crohns coz I've been fine since but what do I know lol. I still daren't take the risk with my diagnosis of indeterminate colitis. The reason they can't tell is he said my bowel was the worst he had ever seen and even sent it off for second opinion and they couldn't tell what I had so got that diagnosis. They sent it to the best bowel pathologists in country so that says something I can't believe how quick it got so bad had only suffered 4 months. It probs started off with antibiotics and the Imodium won't have helped either. But I'm still here and can't thank surgeons enough. It's the same surgeon performing my next one. Good luck xx

I just wanted to add my support to everyone else's. I too had emergency bowel resection. I didn't end up with a stoma, but I know how exhausting the recovery can be. But, I also know that you will feel better. Give yourself some time.