• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Crohn's story

Back in 2013 (August) I started developing loose BM as well as some pain in my stomach. After about 2 months of these symptoms, I thought it was finally time to go to the doctor and find out what was wrong I was then sent for a ultra sound of my abdomen as well as an xray. My doctor then said I had Faecal loading and told me to take Metamucil and a fruit laxative called Nulax every day. I started taking those as then another month down the tract nothing had changed and the pain was getting worse. It was now January-feb 2014 and I went back to the doctor to do some more tests and more X-rays. My doctor then said I didn't have Faecal loading and that there might be some this wrong with my bowel. It was now mid march 2014 an mg doctor finally decided to check my blood work and send me to do a blood test as well as check my thyroid. My bloods came back horribly and showed that I was anaemic (which he then told me to start taking iron tablets) as well as some sort of inflammation. I went and did another blood test to check for celiac disease which then came back negative and he referred me to a GI specialist. The pain was literally unbearable and I couldn't leave my house. I then saw the specialist and was admitted to hospital that day. The next day I had a colonoscopy and gastroscopy which showed inflammation in my small intestines (ileum) and a biopsy was taken. I then also did a MRE on my bowel which then confirmed and I was diagnosed with Crohn's disease. I was then sent home after 3 days in hospital and started taking Imuran (for the Crohn's) as well as Pentasa and steroids (for the inflammation). After about 1.5 weeks out of hospital I started developing even worse lower back pain and could hardly stand or even sit. I went to the physio (which I had Been visiting on and off about this pain for months) and he sent me of to have a CT scan of my lower back. The scan showed that there was fluid in my lower back and was then again admitted to hospital that day to do more tests. A CT scan (with contrast) was done the next day and that showed an abscess (collection) in that area. A drain tube was put into my lower back to drain the fluid out. This was left in for about 7 days and then another 2 CT scans were done and that showed that the fluid was still there and that there were pockets in my ileum (small intestines) which were leaking into my back. My surgeon (which I met for the first time a few days prior incase I needed surgery) then decided that surgery was the best way to go to fix this issue. I then had the surgery the next day and the ileum was removed out of my small bowel resulting in a resection. I was told that I may of needed a stoma temporarily for 6 weeks but my surgeon thought it wasn't necessary and luckily didn't need one. 1 week after the opp I was out of hospital and doing amazing. It took me about 3 weeks until I was feeling fine and could move around like I used too prior to the pains. 1 days before I was out of hospital I was told I needed to still be on intravenous antibiotics to make sure that all of the abscess was gone. They then put a PICC line in my left arm and I was visited by a nurse daily at home and given the antibiotics which were given to me through little automated pumps which I carried around with me. Now it has been 2 months post opp and I feel amazing. I am still on a course of oral antibiotics for the next 6 months and then a MRI will a done at the end of that course. This operation has literally saved my life and I could not be happier. I am only 19 years old but I have been through a lot the past 3-8 months.
 

DJW

Forum Monitor
Hi Crohnsgirl and welcome. You have been through quite a journey. So happy to hear you doing well.
 

valleysangel92

Moderator
Staff member
Hello, welcome to the forum

You've certainly had quite a journey so far. I was diagnosed at age 19 too, Im 21 now. I'm so glad to hear that you are feeling so much better :). Have you discussed long term treatment with maintenance medications with your doctors yet? If not this might be something to bring up when you see them next.

I hope you find this place helpful, its definitely helped me a lot, everyone is very friendly and we all know what this disease can do. I hope that you keep feeling better, but if there is anything you need then just let us know and we will do everything we can to help you.
 
Hi valleys angel ,

My GI and I have discussed long term treatment and she has advised me that in order to reduce my chances of a flare up that It would be best to stay on my Crohn's medication and take it regularly everyday. To me this isn't an issue and I would personally rather take it everyday if this is going to reduce my chances of a flare up in the future.
Thankyou, I really do appreciate that and I guess it's just time to take it day by day. :)
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome to the community.

Thank you for taking the time to share your story. You sure have been through a lot!

Please keep us updated as to how you're doing and let us know if there's anything we can do for you.

All my best to you :)
 
Hello! Welcome!

I had a similar issue to you, and also had surgery on my ileum. *high five* haha
I'm glad your doctors decided surgery was best as sometimes they are very reluctant too, they knew I needed surgery in Easter last year and I didn't get it until December. I hope you recover well and fingers crossed for long term remission!

Also I'm on imuran too! If you ever have any questions let me know! Xx
 
Hi Crohn'sgirl19 :)

I am 22 years old and was diagnosed when I was 4, so I completely understand how you feel being a young with girl crohns and going through so much! Sounds like you've had quite a journey and it's amazing that you're feeling so much better. I hope your recovery is as quick and as painless as poss and you are feeling back to your bright self ASAP!

I've been on most meds/had a lot of surgery during my time so let me know if you have any questions/want to chat!

Bee xx
 
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