Liz Story

Hi everyone
Well I am glad that I found this forum. I have learned allot in the short time I have been reading. I was just diagnosed with crohns two weeks ago. I had been having bleeding for months, had a colonoscopy, said it was normal except for hemorrhoids, Then the bleeding got worse and worse as did the pain. I went to the er 2 times and my Primary doc who brushed me off. So I finally after a month of constant bleeding found a new doc went and was admitted to the hosp. Had to have 7 blood transfusions had another colonoscopy and was diagnosed. I am now about to have my second round of remicade. I am still in pain and have a really hard time sleeping... The diet part is hard. I know low fiber, low fat. Anyone have any advice. It is good to know that there are others out there like me.

Liz

:welcome: to the forum Liz! You have been through a rough time, and we all know too well how you know how you are feeling with pain and bleeding. It isnt fair when no one takes you seriously...the pass it off as IBS or hemmies, and that is just not right. Many people have done amazing on Remicade and there is a remicade club on this forum and they can help you more. Light coloured blood is usually not the colour to worry about it is the dark red or black that is the one to keep an eye on it. I know this sounds gross but alot of people have taken pictures of the bm with blood. THAT usually gets the docs attention.

There are many newbies here in the same boat, so many to help you and support you. Keep in mind we are all different but we try to help out one another. :hang: Hope you join the community!

Hi Liz
and welcome

Poor you, you've been thro the mill!
Really hope the Remi starts kicking in soon to give you some relief. Did the doc give you pain relief? I can recommend Codeine Phosphate, I was given it in hospital, it's a pain killer but also stops diarrhea, it can be habit forming tho, so I only take it when absolutely necessary, it makes you drowsy too.
glad you found us, lots of friends here, all paddling in the same boat!
lotsa luv
Joan xxx

Hi Liz, welcome!! I'm a little surprised they didn't start off with prednisone to knock you into remission. It seems to be the standard practice for most. I hope the Remi works for you. Good luck!!

Hi Liz and :welcome:

I'm glad you found it too! Oh wow Liz what a scary and rough time you've had and only just being diagnosed your head must whizzing!

Where is your Crohns located and is Remicade the only medication you are on?

You have found the right place here for support and info so please stick around 'cause we would love to have you. Good luck and welcome aboard!

Take care,
Dusty

Hi,

I am on Prednisone as well. I was on solumedral in the hospital and now am on a prednisone taper. I am also on Asicol?? 3 times a day. I had 7 open lesions when they did the colonoscopy. I think he said it was chrons colitis and IBS? I am still learning and do not see my GI doc again until November. I will have had the Remicade every 2 weeks then move to 4 weeks by then. It is overwhelming.
They have me on dilodid for pain so I feel like I am in space. I see a nutritionist Friday to help me on the food piece. You will have to excuse my spelling it is horrible.

Liz

Let us know what the nutritionist says Liz. It's always interesting to hear as it seems no two get the same advice!! Seems diet is as much an individual thing as crohns itself!!