New here..my story.

[bwinder925]

Hello all, I am new to the forum!

My story goes as follows:
Back in Dec. 2011 I went to visit some family and started to have what I thought was gas pain, it quickly turned into a horrible pain I had never felt before, along with intense growling. This happened the entire week I was there (I thought at one point I would literally drop dead from the pain!). Anyways, it went away for a few weeks and kept returning just not as bad.

March comes along and I start getting the pain again except it's constant and I can't take it anymore. I go to the ER where they run many tests and come back to tell me I have colitis. They didn't know if it was an infection or Crohn's so we scheduled an appointment with the digestive health doctors.
At the beginning of April I had my colonoscopy done (and the findings were not pretty!) I was put on Prednisone and Asacol, that worked out well for a while until I started to have severe pain again. Back into the hospital I went on Father's Day, my colon was so swollen they thought I had a horrible case of appendicitis, in reality they couldn't even see my appendix because it was so inflamed in there! I was quickly given a high dose of medications via IV and also given oral meds. At that point I couldn't drink or even lick a popsicle without the pain coming on full force. Finally, the swelling went down and I was able to function again after a lengthy stay at the hospital.

I went back to the digestive health specialists and they upped my prednisone dosage and now I am on Lialda. The prednisone is doing a number on my body and as soon as I taper off completely we will be starting Remicade infusions.

Everyday is painful and embarrassing (my belly makes SO much loud noise!). I was FINALLY officially diagnosed with Crohn's Disease in June at age 21. If these infusions I will be getting do not work they will need to operate and as they put it .. make my colon "start over" by scraping out the crud in there. I'm crossing my fingers hoping it won't come to that. It is so weird to me that not even a year ago I was perfectly fine..and out of nowhere all of this happened and now I can hardly even function without some sort of medication.

I'm hoping to get lots of support on this forum because no one I know understands...even I don't really understand. Tonight I'm having some pain so I figured since I can't sleep why not come here and say hello!

Bree

 

[CheerBear12]

Hello and welcome I'm so sorry your in so much pain hope they sort you out soon. I'm praying that some of miracle will happen for you and that you don't need to undergo that. I was like you had a really bad flare up for 4 months before I done anything about it. It just wouldn't stop tho it was an extreme case. I was in hospital for 6 wks treatment wasn't working I was on pred, pentasa, extremely strong steroids via drip and one infliximab. Nothing worked I was getting sicker and sicker. I had to have an emergency total colectomy with ileostomy. My large bowel could of burst and at any which could of killed me. I'm feeling so much better now. It is weird how it's does come on suddenly coz I was fine before all of this started. I know this doesn't really help you but I just wanted you to share my experience. Big hugs and keep me informed it what they do your in my thoughts x

 

[bwinder925]

Oh my goodness, I'm glad that you are okay and that you're feeling better. And yes, it's so strange how one day it just hits out of nowhere.

We called the doc this morning because I've been extremely shaky and my hands have been swelling (along with my face but I heard that is normal). Were guessing it has something to do with the prednisone...they haven't called me back yet.

 

[CheerBear12]

Are you ok now? I would say its the steroids as well the only time I felt shaky and drugged up was the first time I had taken but I had all sorts of awful side effects depression don't know whether that was to do with steroids or coz of what was happening to me or both. When you say swollen face do you mean moon shape that happened to me as well. I was on them for 5 months. Hope your feeling better soon with everything and get the answers you need x

 

[David]

Hi Bree and welcome to the community I'm glad you found your way here and appreciate you sharing your story.

First off, we have a Remicade forum that you may want to check out if you haven't already so you can connect with others on it.

That they're talking surgery already tells me you should hit your Crohn's from every angle. In addition to the Remicade, you may want to consider discussing the following with your GI or dietician:

- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can you a lot.
- Lifestyle changes - stress reduction
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin F, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.