My crohns

[Karen g]

Hi my name is Karen I now 40,at 16 I was diagnoised with Crohn's disease, I went for a long time in so much pain I lost 3 stone couldn't eat constantly sick And diarrhea.After being diagnosed and but on a course of medication I responded well.I went 7years before I needed surgery after that I went another 6 years pain free,then things started up again and I've been battling it ever since I have seen really good doctors but the medication just wasn't working so I have recently had more surgery which unfortunately didn't go to well and was rushed back to theatre after losing a lot of blood,I now have a colostomy bag which is reversible and hopefully I won't have for to long.I found it very hard to come to terms with it,but every day it gets easier and looking back it saved my life.

 

[Judith]

Karen,
I just wanted to welcome you to CrohnsForum. I am sorry you had to have such drastic measures taken but am glad your life was saved. I hope you are feeling better soon.
CrohnsForum members are wonderful and are a wealth of information and advice.

Here are a couple items that might be of interest to your situation:
Your Surgery Story

Surgery Subforum

Thank you for your post.
Welcome! and I hope you feel better!

 

[Angrybird]

Hello Karen and welcome to the forum

I am sorry to hear you have had such a tough time of it with the recent surgery, I do hope that you are starting to feel better now? Out of interest what was the med that you were on? Are you on anything now? We do have a stoma sub forum as well that is worth checking out if you want to chat with others who have these: http://www.crohnsforum.com/forumdisplay.php?f=46.

Wishing you all the best.

AB
xx

 

[David]

Hi Karen and welcome.

I'm sorry your recent surgery didn't go as well as we would hope Hopefully they are able to reverse the ileostomy soon and you'll be back into remission for a long, long time

Definitely check out the links posted above. We're here for you any time you need us!

 

[EllenB]

Hi Karen sorry to hear about your recent surgery not going too well. I hope they can reverse it soon and that you will go back into remission.

Only just joined the forum but finding it helpful as was only diagnosed with the disease just under three years ago had such a rocky time managed to be in remission for just under a year but seems it is back again.

Thinking of you and wishing you the best. X

 

[Karen g]

Thanks Ellen I have only just joined myself ,I've been pretty lucky when I was younger i seemed to go for years without any flare ups.Over the last 3or4 years its been getting worse.I know it's easy to say but after things went so wrong during surgery and seeing how my family nearly lost me I'm thankful for everyday now. if you need to talk about anything I'm here ,take care karen

 

[Sarahkk]

Hi and sorry to hear about all the surgeries. You've probably heard of treatment with diet at this point, have you ever tried?

 

[Karen g]

Hi no I've never tryed nothing like that , have u ?

 

[Sarahkk]

Yes I use it. It's actually the only treatment that ever worked for me. I was diagnosed when I was 7 and went through every treatment available at the time pretty much. They never really considered surgery for me though because I had it throughout my whole digestive tract so even surgery wouldn't really be beneficial. I have a post (or maybe two) about like diet and my specific diet you should check it out. Because eating healthy benefits your health as a whole anyway, not just helping your Crohn's

 

[highlandsrock]

Hello Karen

Just caught sight of your post from a few weeks back. How are you doing now? Are you coping OK with the bag? It does take a while to get used to. I know what you're going through and hopefully you'll get a date set for your reversal. Since having my op two years ago and the subsequent reversal my quality of life is pretty much back to normal and I'm currently taking no medication for Crohn's except Loperamide.

Nigel

 

[Karen g]

Hi I'm doing good thanks quite used to the bag,it's not as bad as I imagined ,it was always my worst fear having a bag, I never thought I could look at my stoma,I can't stand it when my daughter twiddled here belly bar,so it's amazing how can overcome things.Hoping to have a reversal in few months ,how we're you after and did u recover quick,I'm so worried thing will go wrong after last time when I ended up in icu.Just reading about what you ave had done what's a variceal banding.Hope your doing well xx

 

[highlandsrock]

It helps if you have a good stoma nurse and Fiona at St.Thomas' was so calm and understanding that she made it easy to deal with. I will be eternally grateful to her. After my reversal I found it did take a while for my digestive system to get back to some semblance of normal. The Loperamide helps with that.

Variceal banding (I've got another session tomorrow morning) is the placing of rubber bands around the varices in the eosophagus using an endoscope. The varices are varicose veins that have formed on the surface of my oesophagus as a result of raised blood pressure in my portal vein. This was due to a clot that has formed in my liver which my consultant believes can be traced back to an emergency operation I had in 1979. By banding the varices the hope is that they will wither away and then they won't be there to burst. You can imagine what that looks like! Once that happens you have a finite time to get to hospital before it's curtains.

 

[Karen g]

Oh that sounds serious ,wishing you all the best for that xx

 

[highlandsrock]

Thanks for your good wishes. Had my session yesterday, which I hoped would be the last one needed, but have now got another one booked for end of November.

It does sound serious and googling it can be worrying. I asked my consultant which would finish me off first the Crohn's or the varices to which he replied "with Crohn's it will be a slow process!" (It was said slightly tongue in cheek)