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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 🌸
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Hi and welcome to the forum! :welcome:

I'm sorry to hear all that you're going through. Especially all the medical tests you've been having so soon after diagnosis. I'm thinking though, that all these tests are for them to be sure of what you have and will help your doctors how to best treat/help you. Not necessarily that there's anything wrong, mainly just to be sure.

My new doctor put me through a few tests himself this year. I was a new patient of his and he said that he wanted to be sure. Even though he received the records, he's a touch it and feel it kind of guy.

A great place to look is our wiki section on here. But, I also did a little research for you on terminal ileitis. I encourage you to take a look around here! Please let me know if you have any questions. :hug:

www.medterms.com/script/main/art.asp?articlekey=5741

www.webmd.com/ibd-crohns-disease/crohns-disease/5-types-crohns-disease
 
Ahh thank you for your reply! I will have a look at the link. He did mention I'd be starting treatment soon which is great! I also got another letter today to go for a pelvic MRI scan the week after i have the small bowel MRI. I don't know if its because I mentioned the lump or if they have seen anything from my colonoscopy! 🌺
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
No problem :) I'm sure they're just doing the tests to make sure all is well and how to better take care of you. Doctors seem to like doing that especially if you're a new patient of theirs. Although, I know sometimes it feels like they're putting you through the ringer!

I'm glad that these sites helped! No, I haven't had a fistula before. But, there are a few on here who have that you can ask. I can't think of names right now. But, I'm sure others will see this posting as well. Good luck on your tests. :hug:
 
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