- Location
- Cheshire England
Hi all
I dint actually know where to start with this post as I'm new
After nearly 18 months of horrific tests and three long hospital stays and two consultants, I was eventually diagnosed with severe Crohn's disease by having a capsule endoscopy in June 2011. I was then put on a concoction of drugs, steroids, infliximab infusions. Nothing worked.
I then had a right hemicolectomy in January 2012. I was well for only 3 months. I then had another colonoscopy and was told the devastating news in September last year that the Crohns had returned and was severe. I took to my bed for two days and didn't feel like I could go on but with two sons, a husband and a good job I picked myself up again. I had another two week's stay in hospital last October. Life was unbearable yet again.
On my son's 16th birthday on 13 May this year and the first day of his gcse's I was admitted yet again to hospital. I was totally devastated. :worthy:
My normal consultant was on holiday and I was asked whether I would see another one. I really didn't care at this point so said yes.
As soon as the new consultant came into the room he was upbeat and positive. He said he had read all my notes which must have taken some going!
He said if I didn't have any objection he would like to put me on a liquid diet called modulen. I had heard of people going on this but my other consultant preferred the drugs route - all failed.
Anyhow I was so poorly I said yes as I thought it was my only chance of being near normal ever again.
I had arrived at hospital on 20 tablets a day and left with just tins of modulen and nothing else.
I am not going to lie the first two weeks of taking it was the hardest of my life. I had the severest of headaches, I craved food and had the shakes. I suppose it was a bit like cold turkey.
After three weeks I woke up one morning and felt weller for the first time in years. Every day it just got better and better. I just couldn't believe it!
It was very hard cooking tea for everyone and it was summer so the smell of bbqs was intolerable. At tea time I would take myself off so I couldn't smell the food! It was the hardest thing I have ever had to do but I did it for a total of 10 weeks and up to this very day I am still supplemented by modulen and if, like this week, I have a flare I just go back on 5 shakes a day.
I have had a wonderful summer of concerts and theatre outings, a cruise. I took my shakes everywhere and did have comments but I wouldn't care if people said "oh I couldn't do that" my reply is always "well you have never been as ill as me then"!!
I eventually reintroduced foods with my dietician. I mainly eat organic food, no wheat, no gluten, no diary and no processed foods with preservatives in. No spices and garlic. Although my diet is very limited I am happy that I am well and can actually live my life as best I can. I know I am never fully well but as my new consultant says - if you can be at 85% well that's as much as a person with Crohn's disease can expect and hope for!
What I really wanted to say in this post is never give up and be ready to try anything. I was ready for more surgery but I am clinging onto the rest of my colon for dear life now!
The support of my friends, family and work colleagues has been outstanding. I just couldn't have got through it without them. They were there for every bad time and hospital stay and for the good times when I eventually got into remission.
Modulen has truly saved my life and I now call it my magic powder!
Inflammatory bowel disease is debilitating, disgusting and painful so I am sending my thoughts to all who have it and here's to someone someday finding a cure!:hug::kiss:
I dint actually know where to start with this post as I'm new
After nearly 18 months of horrific tests and three long hospital stays and two consultants, I was eventually diagnosed with severe Crohn's disease by having a capsule endoscopy in June 2011. I was then put on a concoction of drugs, steroids, infliximab infusions. Nothing worked.
I then had a right hemicolectomy in January 2012. I was well for only 3 months. I then had another colonoscopy and was told the devastating news in September last year that the Crohns had returned and was severe. I took to my bed for two days and didn't feel like I could go on but with two sons, a husband and a good job I picked myself up again. I had another two week's stay in hospital last October. Life was unbearable yet again.
On my son's 16th birthday on 13 May this year and the first day of his gcse's I was admitted yet again to hospital. I was totally devastated. :worthy:
My normal consultant was on holiday and I was asked whether I would see another one. I really didn't care at this point so said yes.
As soon as the new consultant came into the room he was upbeat and positive. He said he had read all my notes which must have taken some going!
He said if I didn't have any objection he would like to put me on a liquid diet called modulen. I had heard of people going on this but my other consultant preferred the drugs route - all failed.
Anyhow I was so poorly I said yes as I thought it was my only chance of being near normal ever again.
I had arrived at hospital on 20 tablets a day and left with just tins of modulen and nothing else.
I am not going to lie the first two weeks of taking it was the hardest of my life. I had the severest of headaches, I craved food and had the shakes. I suppose it was a bit like cold turkey.
After three weeks I woke up one morning and felt weller for the first time in years. Every day it just got better and better. I just couldn't believe it!
It was very hard cooking tea for everyone and it was summer so the smell of bbqs was intolerable. At tea time I would take myself off so I couldn't smell the food! It was the hardest thing I have ever had to do but I did it for a total of 10 weeks and up to this very day I am still supplemented by modulen and if, like this week, I have a flare I just go back on 5 shakes a day.
I have had a wonderful summer of concerts and theatre outings, a cruise. I took my shakes everywhere and did have comments but I wouldn't care if people said "oh I couldn't do that" my reply is always "well you have never been as ill as me then"!!
I eventually reintroduced foods with my dietician. I mainly eat organic food, no wheat, no gluten, no diary and no processed foods with preservatives in. No spices and garlic. Although my diet is very limited I am happy that I am well and can actually live my life as best I can. I know I am never fully well but as my new consultant says - if you can be at 85% well that's as much as a person with Crohn's disease can expect and hope for!
What I really wanted to say in this post is never give up and be ready to try anything. I was ready for more surgery but I am clinging onto the rest of my colon for dear life now!
The support of my friends, family and work colleagues has been outstanding. I just couldn't have got through it without them. They were there for every bad time and hospital stay and for the good times when I eventually got into remission.
Modulen has truly saved my life and I now call it my magic powder!
Inflammatory bowel disease is debilitating, disgusting and painful so I am sending my thoughts to all who have it and here's to someone someday finding a cure!:hug::kiss:
