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Crohn's Disease Forum » Your Story » Hello Everyone! (New and learning)


07-16-2015, 11:07 AM   #1
Lenah
 
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Hello Everyone! (New and learning)

Hello! How is everyone today?

You can call me Lenah. I'm 23 years old and live in Ontario, Canada.

So I am fairly new to this. I might as well just jump right in to my story.

In 2013, out of the blue, I started seeing blood on and off in my stool. This went on for a few months without any pain, and I was hoping it would resolve itself and just go away. When it didn't, I went to my doctor who, after some tests, referred me to a GI.

March 2014, at 22 years old, I was diagnosed with Ulcerative Colitis. I remember waking up after the colonoscopy, and the GI let me know while I was still groggy. I cried a little bit. When she told me I should be careful of having dairy, I started bawling. Looking back, it's hilarious that her warning against cheese is what got me so upset! (Can't blame me though, I'm Italian and looooove good cheese! ...or anything dairy for that matter )

We caught the disease fairly early. She told me to make a follow-up appointment for as soon as I could after the colonoscopy. But I was in shock from the diagnosis and never did. I felt blind-sided and there was a lot of "why me, why this, why now?" running through my head. Heck, there still is.

So I took the prescription that my GI gave me of Pentasa for a month, and started to flare again. I was in denial for about a year, hoping it would get better and thinking I could take care of myself, or that maybe it would just go away.

April 2015, it got to the point where I was too tired to function properly. I'd be out of breath walking from the bedroom to the living room (a pretty short distance), and my legs would cramp up after standing for only a few minutes. I'd managed to get my hands on a refill of Pentasa, and had a horrible reaction to it - severe cramps for 24 hours straight, nausea, vomiting and diarrhea. I finally admitted I needed professional help. I called my GI, and the receptionist told me the soonest she could get me in was in a month. My mom took me to Emergency at the hospital. The hospital did some blood work and x-rays, and after 6 hours of waiting told me to go home and take more of the Pentasa...and some gravol for the cramps.

I did as the ER doctor said, and it didn't work - I had the exact same reaction. Managed to get an appointment with my GI two days after that incident. She put me on prednisone and informed me that I was pretty darn close to getting a blood transfusion.

I was on a six week course of the prednisone, along with continuing the Pentasa. At the end of the steroids, I started flaring up again just a week after I was off them. And then I landed myself back in the hospital with a kidney infection - hot damn that was painful!!

My GI put me back on the steroids again two weeks ago, and I'm just starting to taper at this point. She also switched me over to Salofalk 500mg pills which I'm finding easier to take than Pentasa.

I just got back from an appointment with her, and I requested a colonoscopy to see where I am at this point, since I wasted a year in denial. She wants to start me on Imuran because it doesn't seem like the 5-asa medication is helping as well as it should. I am a little bit nervous/scared about taking it. The side effects don't seem pleasant at all. I let her know I would be more willing to try it after I have the colonoscopy to see where I'm at.

And that's where I am to date! I'm definitely doing a lot of learning. I have to say, its difficult trying to re-learn my body after having innately trusted it my whole life. But I'm doing okay so far
07-16-2015, 11:36 AM   #2
DJW
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Hi and welcome to the community.
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Crohn's Disease
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Visit Crohn's and Colitis Canada:
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Dave
07-16-2015, 02:24 PM   #3
worriedboy
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Hi and Welcome,

You remind me myself at about your age, your stage. Diagnosed with Crohns and got some Pentasa (they were still prescribing it for Crohns back then), which I felt was not working (and was right about that, as we know today), and pretty much tried to manage and hoped it would go away.
In a way, it worked. But in the long run, denial is a huge mistake. Do NOT go down that path. If your disease is aggresive enough to come back once you taper off the steroids, you should consider some maintainance therapy (assuming you would like to manage a normal life as much as possible).

It's good news that you contacted your doctor and that you are going to have a routine colonoscopy to check up what's going on. Don't give up; you dont have to suffer like this.


Hope you have some relief soon.
07-16-2015, 03:01 PM   #4
Lenah
 
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Hi and Welcome,

You remind me myself at about your age, your stage. Diagnosed with Crohns and got some Pentasa (they were still prescribing it for Crohns back then), which I felt was not working (and was right about that, as we know today), and pretty much tried to manage and hoped it would go away.
In a way, it worked. But in the long run, denial is a huge mistake. Do NOT go down that path. If your disease is aggresive enough to come back once you taper off the steroids, you should consider some maintainance therapy (assuming you would like to manage a normal life as much as possible).

It's good news that you contacted your doctor and that you are going to have a routine colonoscopy to check up what's going on. Don't give up; you dont have to suffer like this.


Hope you have some relief soon.
Thank you for your kind words.

I feel like I am waking up at this point, with a lot of "what the hell was I thinking?!" going on in my brain. When I came back to my GI after not seeing her for a year, she said she wasn't surprised about my denial, and that its fairly common for people to want to believe they are healthy...even when they are not. I am looking forward to being updated on where my disease stands at this point and finding a way to get back to living a normal life.

My aunt has been dealing with colitis for nearly 20 years now. So I have to say in a certain way I am "lucky", as she has been a fantastic guide in helping me navigate UC.
07-16-2015, 08:48 PM   #5
dave13
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Welcome to the forum Lenah. Happy to hear your working with your GI to navigate your journey with UC. Being in denial is understandable,IBD is a tough diagnosis to take.I'm glad your GI talked about it with you. I've always liked the term 'new normal' that,to me,describes our day to day dealing with this disease.

I agree with you,you are fortunate to have an Aunt to be a guide.Information she may provide will be helpful and to have support from family is awesome.

What has your GI suggested?
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07-16-2015, 08:55 PM   #6
teeny5
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Welcome to the forum Lenah!
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
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