New, so here's where I'm at!

[evescott]

Hey there!

I'm 18 years old & was diagnosed with Crohn's disease at GOSH in 2006 after a period of about 2 years of inconclusive back & forth trips to the doctors and A&E and me getting gradually more & more ill.

I've had just about every treatment going, Modulen diet firstly paired with Azathioprine, Infliximab, Methotrexate & Mesalazine.

In Summer '09 I had an emergency surgery after following a procedure originally intended to solve some problems I had with fistulas. I ended up with an ileostomy, which has really, really improved my quality of life! I can get to college every day now & after re-sitting my first year of college, have just resat my AS levels in Chemistry, biology, maths & history. I'm hoping one day to be part of a team similar to the ones who have tried so hard to fix me!

The ileostomy however has not done it's original job & after multiple MRI scans it's obvious my large intestine still hasn't healed, fistulas continue to be a problem and so I'm due more surgery at the start of September at UCH.

I had horrible problems with the Methotrexate I was taking, having a couple of days after taking it being horribly sick & not feeling physically able to leave the house.

The surgeons have decided I need a proctectomy, of course meaning my ileostomy is now a permanent thing, something which as an 18 year old,seems daunting at first but most definitely something I've come to terms with.

I saw the surgeon last week to talk about this surgery & honestly I'm a little worried, I had never heard of the procedure before & it turns out to be a lot more complicated than I had anticipated!

If anyone has had this surgery or any other similar experience I would absolutely love to talk about it even to just put my mind at rest a little

 

[EthanPSU]

Hey. I have not had any surgerys for my crohns so I can't comment on that part but I can relate to you in the college aspect with crohns. It's great that you're doing so well and you know what you want to do! That takes alot with having crohns. Anyways welcome to the forums!

 

[Susan2]

Hi Eve. :welcome:

There is an entry in the Wiki on Proctectomy; this might help. Just click on the word in the previous sentence.

I have had a proctocolectomy, with all the large intestine (and a bit of the small) rectum and anus removed. I took a fair while to heal, but that was because I had left it so long that a large area around the rectum and anus was in very bad condition. So the lesson is that it is better to have it done sooner than later if it looks as though it is inevitable.

It was done 13 years ago and, since it healed, I have had no trouble with that area.

 

[KazT17]

Hi evescott,

I had a proctectomy 4 weeks ago. It went really well. My wounds are all healed already. It was nowhere near as difficult as the last op, which was a subtotal colectomy and formation of the ileostomy. I was home on the fourth day on paracetamol only. You are right that it is a complicated procedure and crohns can delay healing. But in my case I have had no problems so far, it is great to be rid of the horrible things that were happening before the op.

I hope things go just as well for you. Ask me anything else you need to know, I would be glad to help.

Kaz xxx

 

[Angrybird]

Hi there, I have not had this particular op but I did just want to say 'hi' and :welcome:to the forum, there is a lot of helpful info and support here for you. What meds are you on currently and what is being done to help with symptoms whilst you wait for the surgery?

Wishing you all the best

AB
xx