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Crohn's Disease Forum » Your Story » In the process of getting diagnosed


05-03-2014, 09:55 AM   #1
gemling
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In the process of getting diagnosed

Hello everyone,

I've been reading the forums for a few days and thought I'd introduce myself.

I've had abdominal cramps for about 2 and a half years. But my pain really escalated in November and I started loosing a lot of weight. I've been experiencing a "flare up" ever since. I was referred urgently to a GI in January, but had to wait until March for a gastroscopy and colonoscopy. During the colonoscopy the doctor (and myself) saw damage to the end of my small intestines, but it was too painful for me for them to look any further. This week I had an MRI so that they can get a better look, now I'm just in limbo waiting for my results.

I hope they diagnose me soon. As everyone here knows, it's so tough being in pain every day and not being able to do what you want to be able to do.
05-05-2014, 10:38 AM   #2
Jessi
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Hello and welcome to the forum, gemling.

Waiting is hard, as we all know. I really hope you get some answers.
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~Jessica

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
05-05-2014, 01:40 PM   #3
gemling
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Thanks, Jessica. It is tough. It's so tiring never really getting a break from the pain. I am still working full time, but that never seems to get easier.

I hope I don't have to wait too much longer.
05-05-2014, 04:50 PM   #4
Jessi
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Me too gemling!
05-05-2014, 05:49 PM   #5
FrozenGirl
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Welcome!
Waiting for a diagnosis was honestly likely the hardest part. Knowing you just have to wait and do testing while trying to life your life in pain. I hope you get a diagnosis asap. All I can say is just keep holding on. It will get better.

Hugs
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Dx: Ulcerative Colitis, Nov 2013
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05-23-2014, 06:37 AM   #6
gemling
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Thank you guys for all your support. I really appreciate how supportive everyone is here.

I am posting back in this thread to update you all. Last Thursday night from about 3am onwards, I started suffering from intense, constant pain across my abdomen. Couldn't sleep at all. I think I might have finally drifted off for about half an hour at some point, but was soon awake again.

I ended up taking Friday off work as I was still in so much pain. It was a lot worse when sitting so I was curled up in bed all day (pain was a bit more tolerable laying on my left hand side). I told my hubby when he called to see how I was, that if the pain continued I didn't see how I was going to get through the weekend with going to A&E, so he had me call my GPs office to speak with them. They were really fantastic and had me into the office before they closed for the day to be examined. The GP said they didn't like how my abdomen felt and told me to go to a specific hospital (further than the closest A&E), because they "have an on-call surgical team there".

We headed off to A&E and had a long wait to see the assessment nurse and then another hour after that to see the doctor. But as soon as I saw the doctor things speeded along quite quickly. He could see my MRI results that had been back for 2 weeks at this point and could see the inflammation of my small intestines and my colonoscopy biopsies also showed inflammation. He immediately diagnosed me with Crohns and said he was going to talk to the medical team because he wanted me admitted to start IV steriods ASAP and because of how long I had had symptoms and my 3 stone weight loss he wanted me to be seen by a Dietician.

I was admitted and was kept in for 4 days while I got steroids and we worked on a treatment plan to be followed once I was released. I have to admit, while it was horrible to be admitted, it was such a relief to start getting treatment, within 48 hours I was feeling (and looking) SO much better than I can remember in a long time.

I just got released on Tuesday with a course of Pred and Pentasa to be my maintenance drug (to be monitored for effectiveness, of course), as well as three other vitamin supplements to replenish my body's supply.

I'm heading back on Tuesday to see the IBD Pharmacist to discuss how things are going and sort out follow up appointments. I am so lucky to be treated at the hospital I was sent to, they seem have a good specialty in digestive diseases. They are also a teaching hospital, which I think helps out.
05-23-2014, 09:56 AM   #7
FrozenGirl
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I'm sorry you were so ill but glad you have what sounds like a great doc and now a diagnosis. Hope you keep getting and feeling better!
05-23-2014, 11:47 AM   #8
gemling
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Thanks, FrozenGirl. So do I. I did a blood test at my GPs yesterday and gave them a copy of my discharge paper as they didn't have it yet, then my GP called me in the evening to make sure that I was okay and check if I needed any prescriptions renewed and talked through what to put on re-fill, but said I could ask for any of the medications they prescribed if I ran out and should need it (they gave me more domperidone because before I went into the hospital I had been suffering from nausea). It was just so nice of him.
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