Liz's Story

[xBlove7]

Hey guys! I stumbled onto this site when researching something for Crohn's. Anyway, I'm glad I found it and here is my story.

My name is Liz and I was diagnosed with Crohn's Disease on April 23, 2009 at 22 years old.

Before I was diagnosed I didn't really have that many symptoms. Just a lump in the lower left quadrant of my abdomen around 2008. I went to the dr about it. It was an "emergency work in" appt so I wasn't able to see my regular dr. The person I did see sent me for an ultrasound and when the tech didn't see anything there the dr told me that if it ended up hurting at anytime I should go to the ED because it had ruptured and was hemorrhaging. She made me feel like an idiot for going in.

A year later I had the same lump with a little bit of pain. I was able to see my primary that time and he was a little concerned so he sent me for a CT scan. He called me the afternoon of the CT scan and told me that it wasn't what he had originally thought it was but it looked like I had Crohn's Disease. I had only heard of Crohn's so I wasn't very familiar with it. He referred me to a GI dr for later that month.

I was scheduled for a colonoscopy on April 23 and an upper GI on April 24. I had the colon and was diagnosed that day. Leading up to the colon was about a month of diarrhea with pain that was getting worse as the weeks wore on. Once the colon was over he took me into the consult room with my dad and told me that he was able to get into a couple of inches of my small intestine and it was "mad and angry looking from the inflammation and there were erosions that were characteristic of Crohn's." He handed me a prescription for Entocort EC and sent me on my way.

I am currently in my 2nd flare and literally just looked down at my forearms and found a wicked rash on them. I've never had this before so I'm not sure if it's Crohn's related but it's the only think I can think that has caused it. My "attacks of the Crohn's" (the painful diarrhea) as I like to call it, have been pretty bad the last 2 days.

Ever since I was like... 12, I've had bad joint pain in my knees. Never knew it was probably Crohn's related. If it wasn't then it definitely is now.

Anyway, that's my story and I'm sticking to it. :ybiggrin:

 

[Angrybird]

Hello and :welcome: The rash could definetly be crohns related, when I was first diagnosed I had a rash that came up all over my legs that looked like big round purple welts. When are you due to see your doc? What are they doing currently to sort out this flare?

 

[xBlove7]

Thanks! I see my GI on 27 Jan. So not too long to wait. I woke up this morning and it had spread down one of my hands and to the upper parts of my arm. Maybe I should call the dr? I dunno, they aren't open and I don't want to call the dr on call simply because it isn't really an emergency.

I'm currently on 9mgs of Entocort EC. It seems to be helping for the most part. It's all I've ever taken.

 

[Angrybird]

Hi, would your docs be about tomorrow? Or perhaps your GP? I would say this rash needs to be looked at before the 27th, this could be a sign that more than the Entocort is needed as a treatment.

 

[xBlove7]

They should be open tomorrow. If it gets worse or spreads more I will definitely call. I'm only talking about my GP... I'm not a HUGE fan of my GI so I stick with my GP for most things especially since he was the one who found the Crohn's to start with. I'm not sure if it IS Crohn's related. If my GP says it is, I'll call my GI. And I didn't think about maybe needing more Entocort, I already take 3. Eek!

 

[David]

Hi Liz and welcome! I'm so glad you stumbled across our little community!

First off, if you're not a HUGE fan of your GI, find another one. Keep trying new ones until you feel like purchasing a skywriter over the next Superbowl that says, "Dr X is the best GI EVER!" It's that important to have a good damn good GI for a Crohnie.

Second, I think you maybe misread what angrybird said. Don't take more entocort, angrybird said maybe something else in addition to the entocort

For the record, I agree with them 100%. My guess is that you need some sort of vitamin or mineral supplementation. If you become a regular here (I hope you do) you'll come to know me as that guy who nags everyone about their vitamins and minerals I do so because Crohnies are chronically deficient in various vitamins and minerals. These deficiencies cause a wide range of extraintestinal manifestations including...

*drumroll*

Rashes.

Next time you see your doctor, I would request (at the very least) that your vitamin B12, vitamin D, Vitamin K, and folate levels be tested. Crohnies are very often deficient in these and proper supplementation can make a world of difference not only now, but will help you avoid complications in the future.

I wish you all the best!

 

[xJillx]

Hi and welcome! I don't like the sound of these rashes. I would certainly phone your GI or GP. It's better safe than sorry.

Do you have plans to start a maintenance drug in addition to Entocort? Though milder than pred, Entocort is a steroid and shouldn't be taken long term. It does a good job of addressing the inflammation quickly, but most need a maintenance med to keep the inflammation away. I suggest checking out the Treatment forum to get familiar with the different options available.

Please let us know if you contact your doctor regarding the rashes and what he says.

 

[xBlove7]

Went to my GP, he has no idea what the rash is and is sending me to the derm dr.

There is no way I'd ever self medicate and just randomly start taking more of any medication. I kinda have a hard time taking just what I'm prescribed. :-/

The first time I was on Entocort I took it for a year and 2 months.

I have no plan for anything right now; I'm just riding this flare out.

I go back to my GI on the 27th so I'll talk to him then and see what he thinks.

 

[Snap]

:wink: Hey Liz--glad you found this site. I agree with the others---the 27th is quite a long time to wait. AND--if you don't like your GI Dr. definately find another. Obviously you know this is a lifetime thing--so trusting and thinking your GI totally rocks it is definately in order! My Crohnie Dr. is absolutely positively fantastic--and I am grateful to have found him. Crohnies have a variety of skin issues---I fought welts and hives and erythema nodosum for years before my colon went WHAMMO! Strange. Well, hang in there-I hope you get help soon--this site is awesome and the people are a huge help.
:ghug: Dana

 

[xBlove7]

Thanks Dana! I'm really enjoying it here so far. My rash is almost completely gone so I'm not going to worry about it too much right now. If it comes back I'll worry about it then.

It's just a couple weeks... If I tried to reschedule I wouldn't be able to get an appt. My dr is so super busy; add that to the list of why I should really probably find another GI.

 

[xJillx]

Good luck with the dermatologist. I hope he can provide some answers.

Keep us posted.