ulcerative colitis full bowel removal operation

bridetobeone

I am posting this because after 4 years of suffering with uc and trying every medication doctors have given, my sister has had no other option but to have a full bowel removal operation only today. I guess I am wondering if anyone else has had the operation and had a stoma fitted. She has found it increasingly difficult to get in contact with any UC sufferers and has a long road ahead of her. Is there anyone who might be willing to discuss post OP problems, infections, side effects of having no bowel. I guess I'm worrying about her healing time,depression, intake of foods now etc. she is a young mother of 2 in her thirties and I just want her to realise that she isn't the only sufferer and that theirs light at the end of the tunnel. She is an amazing and courageous person who suffered in silence over the last 4 years and who never said no to any advice given to her by doctors, she tried all the medication but unfortunately had severe reactions to all of them. Sorry for waffling on, but if she could have someone to relate to I think her healing journey could be that much more manageable.

Thanks

bluebell1

Has your sister heard of the ISCC? www.iscc.ie
They are the Irish society for colitis and crohns disease. They are extremely helpful and their phone is manned 3 days a week. They also provide help, support and guidance to family members of those suffering with crohns or colitis. I would recommend that you contact them. Also there is a Facebook page for Ireland (search crohns and colitis).

I also have a stoma. I have crohns disease. My stoma is temporary at the moment but i can relate to how your sister is feeling at the moment. Please feel free to PM if you have any questions or if i can be of any help.... What i will say is that i was completely devestated in 2011 when my stoma was made, it was following an emergency operation so i had no time to prepare for it.... but i have to say i have accepted it now and i enjoy having the freedom it gives me.

I am also in my early thirties and have a very active lifestyle. Your sister will need all your support over the next few months but she will come out the other side...

layviae

There's a big tread here on crohn's a few pages back that quite supportive also there's a very supportive Facebook page called crohn's and uc Ireland. I can't link at the moment as im on my phone but if she has trouble finding it post back and I'll get to a computer and link it.
I don't have a stoma myself but I have inflamitary issues so I know it's a very strong probability

paulaa

This is a link to the Facebook page. It's very helpful and full of [people only too willing to help with any questions your sister may have


https://www.facebook.com/groups/crohnsandulcerativecolitisireland/

thegreengoblin

bridetobeone wrote: »

I am posting this because after 4 years of suffering with uc and trying every medication doctors have given, my sister has had no other option but to have a full bowel removal operation only today. I guess I am wondering if anyone else has had the operation and had a stoma fitted. She has found it increasingly difficult to get in contact with any UC sufferers and has a long road ahead of her. Is there anyone who might be willing to discuss post OP problems, infections, side effects of having no bowel. I guess I'm worrying about her healing time,depression, intake of foods now etc. she is a young mother of 2 in her thirties and I just want her to realise that she isn't the only sufferer and that theirs light at the end of the tunnel. She is an amazing and courageous person who suffered in silence over the last 4 years and who never said no to any advice given to her by doctors, she tried all the medication but unfortunately had severe reactions to all of them. Sorry for waffling on, but if she could have someone to relate to I think her healing journey could be that much more manageable.

Thanks

Hi there,
Hope your sister is doing well after her surgery.
I had UC in the late 90s and eventually had to have my bowel removed. I had a j-pouch operation which meant I could live a life free from UC and with no stoma. I had the operation over 13 years ago and it was the best decision I could have made. Do you know if your sister was/is a candidate for this type of op, as I'm not sure everyone is suitable for it.
Anyway, if you want to pm me I can give you my contact details if she wants to get in touch for a chat. Likewise, anyone else who has/is going through a similar situation.

All the best.

lorebringer

OP, I have UC and totally understand how your sister feels like she is the only one - the facebook page linked above is a great resource to get in touch with people in the same situation as your sister, and everyone is very nice!

Janedoe10

He there . Your sis is going to be fine as u are thinking about what extra help she can get . Emotionally it's a huge hurdle . It does get easier - but it takes time . There will be hiccups"" along the way .

And believe me changing that bag will become easier .
Have sent u a PM