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My Story

Hey everyone! I'm new to this forum and just thought I'd share my experience.
Around October 2012, I was having diarrhoea every day and I realised something wasn't right. I had to leave my job as i could no longer go to work having diarrhoea every hour. I got tablets from my doctor and was on my way. The tablets didn't help and I was still having diarrhoea. My doctor then referred me to a colorectal surgeon who suggested i have a Flexible Sigmoidoscopy.
I had the Sigmoidoscopy in April 2013 and they took some biopsies. At first they said its possible I have Colitis. Then 2 weeks later I got a call saying the biopsies showed I had Crohn's Disease.
I went into hospital the next day to get medication and was given details of a nurse I could ring if I ever need anything or have any questions. This was a huge shock for me, and after researching it, it dawned on me that ill have this forever. 😞
I was put on Metronidasole and ciprofloaxcin. I had a reaction to the tablets so i was took off them. I was getting ripping pains in my foot. I was then put on Asacol for the inflammation.
In June I had another check up in hospital, the doctor said I had lost another 5lbs. In total, I've lost 3 stone since all this started. From size 18 to size 12. I was put on steroids - Predinisolone?, Mertronidasole suppositories and calcium D3. After a week I stopped taking the Metro as it hurt when I was swallowing food and it says on the leaflet to stop straight away.
On Monday I had a colonoscopy an the report says 'Ileitis and Crohn's Disease'. What is ileitis? Is it something to do with small bowel? It also says 'few small ulcers upto hepatic flexure. Severe terminal ileitis'. Anyone understand that? I'm also having a small bowel MRI scan on Monday? I was wondering why I need to have this scan if they already know what I have. Quite worried 😣
I have a small lump near my anus and on bad days it is really painful when I'm using the toilet, the pain brings me to tears sometimes and it's feels like a throbbing pain and after it I can barely walk. I also had the most horrible pain in my stomach one night, I couldn't stand up straight I was vomiting, shaking cold sweats. It lasts for about 20 minutes, goes then comes back again. Lasting about 3 hours. Can anyone relate to this??
Donna 🌸
 
Hi DonnaM383. Welcome to the forum. Sorry about your diagnose. I am going to try to answer some of your questions as best as I can. I am not a Doctor just a Mom with some experience with my kids. First of all. it is a life long disease but that does not mean you have to suffer all your life. The Goal is to be on remission, whish can be done with the right meds. Read everything you can about the disease, but keep in mind that everybody is different. I think ileitis is inflammation in the Ileum. It can be due to many things, infection, crohn's, vasculitis, GI TB, etc etc etc. Terminal ileitis means is in the terminal ileum, is the part where the small intestine and big intestine meets,a lot of crohn's happens in that part. Mri can see a lot of thing the camera can not. So don't worry about the MRI. Tell the doctor about your lump, it may be an abscess and need to be taken care off. Again, No Doctor here. Make sure to call the nurse and tell her how you feel. Not all meds work for everybody, you need to find the right combination for you. I hope you feel better soon.
 
Thanks for the reply! Yeah I told them about the lump and a few days ago I received another letter to go for a pelvic MRI scan, which worried me at first but then I realised its because of the lump! 🌷
 
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