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I Don't Want to Hide Anymore

Wow, where do I start? I'll start from the beginning..

I've been sick all of my life. My earliest memory is in a hospital bed looking up at my IV bag. I was born with an abscess on my chest for which they had to remove surgically. After that I remember my mothers alcoholism while constantly being around her in a horrific state. In the midst of this, I was always getting high fevers and strep infections... as well as skin infections like Impetigo. It was always something!

When my family moved us across the country to a new town and new school is when I began getting even more sick. The doctor thought I had leukemia because my WBC was so high... Still can't believe doctors say these things without absolute surety! Anyway, I started having ungodly chills and fever. I had them for 2 months before we finally went to the hospital. I couldn't even walk to the bathroom without fainting. My mom once carried me to the living room and put me down to fast and I doubled over in pain so severe I started crying. I was tired of feeling this way!! I had an appt scheduled with a hematologist and while in there, I fainted on my from the hospital bed to the weight bench. They admitted me right away.

Turns out I had an abscess, fistulas, and a skin tag. It was a brutal process... I wouldn't wish it on anyone. Oila, I got my diagnosis.

When I was 20-23, I had no health insurance. I went from hospital to hospital. Because I had no health insurance, I did the only thing I knew I could for my pain: I took opiates. Didn't get addicted right away, but eventually did. I am drug free today and happy to say it, but I keep waking up in pain every morning and I'm tired of it. I can't sleep and when I finally do fall asleep, I wake up in brutal pain.

Recently got out of rehab and am living a much better life, but it's lonely. I feel I can't talk to anyone about this. Back in Ohio when it came up, my friends got upset at me and told me I was making excuses. So, now I am very guarded about it. I feel like a burden to everyone and have often felt like nothing more than a disease.

Now I attend AA meetings, ironically, though I don't drink. I never thought I'd end up in one like my mother and her mother before her. A doctor told me according to that pattern I shouldn't feel bad, but it doesn't help. Working the 12-steps has helped my self-esteem, but I still can't open up about my illness with anyone. I can't take it anymore!!

I feel like I'm going to explode!!! Though I may have begun my first 24 years incredibly ill, I want to build a better life. Now I am here. My drug addiction was cured/helped with the help of other addicts, so now I am going to apply that to my Crohn's.

Feel free to reach out to me.

Kayla L:poo::poo::poo:
 
I'm so glad you found us, Kayla-from your story your screen name should be powerful! You have been through so much and you are an inspiration. Your experience with your family is one shared by many of us here; that's why the support you get here is so important.

Opening up about Crohn's is very hard; something that helped me was keeping a journal. I was able to get all my feelings out and feel some relief. You can journal on here if you want, and many here have blogs. Just know that here you can open up about EVERYTHING-lots of people to help and there's no such thing as judgement or TMI on this forum lol!
 
Hi, welcome to the forum. I am so glad to hear you completed rehab and are drug free. That is really an incredible accomplishment that you should be proud of. I don't think that can be emphasized enough.

This forum is always here to listen anytime you want to talk. I hope we can help you feel a bit less lonely. I can really understand where you're coming from.
 

xJillx

Your Story Forum Monitor
Hi Kayla and welcome! It sounds like you are on the right path. I am sure it isn't easy, but stick with it! You ARE building a better life.

I think we all feel lonely at times. It's hard battling a chronic illness, and sometimes we feel no one understands. However, we do! We are all in the same boat here. I have found this forum so helpful. I am more educated about IBD, and I have made some great friends in the process. I hope you'll find it as helpful.
 

Astra

Moderator
Hiya Kayla
and welcome

I hope you find some comfort here with us. I also hope you find the strength to open up to your AA meetings about the illness. Do you have a sponsor you could confide in?
Have faith in your 12 step programme, I know a lot of people who have been helped with it.
Good luck and know we're all here for you, anytime
Joan xxx
 
Thank you guys for your warm welcomes! It means a lot to me to have found a place where I can talk about these things. I think it's really important to me to be able to open up about this and this seems like a good place to start. I can't keep it all in anymore! That just wasn't working for me... So, thank you all for making me instantly feel so apart of something. :)
 

David

Co-Founder
Location
Naples, Florida
Hi Kayla, a most hearty and sincere welcome to you :) If you're ready to take another step forward, would you be interested in sharing some more info? If not, no worries but here's the questions just in case :)

1. Are you under the care of a GI at present for your Crohn's Disease?
2. Are you taking any medications or supplements?
3. How are you feeling other than the pain you mentioned?
4. Where exactly is the pain?

Again, welcome! It's great to have you here :)
 
I'm so sorry I never responded. Life kind of took over in the new city I'm in and I hadn't been spending too much time on the internet.

However, now that I am in the hospital I have far too much time to spend on the internet! I hope you can forgive me for my super late response!

1.) I am now under the care of a GI for my Crohn's.
2.) I have been taking a multi-vitamin supplement for women (http://www.amazon.com/Garden-Life-Women-vegan-capsules/dp/B002IRXMN0). They're made from Garden of Life from raw ingredients. & I just got prescribed to Humira.
3.) Very low on energy and really tired. I had been having fevers & chills and general signs of infection for the last few weeks.
4.) Pain is around small intestine and to the right of my belly button where my ileum is.

However... about 2 weeks ago I ended up in the hospital because I was having a burning pain in my stomach area right under my left ribcage toward my midsection and stabbing/cramping pain where my ileum is. They did a CT scan and found I have a tiny abscess. The day before I went to the ER I had just seen my GI doc for the first time where I had absolutely no symptoms (go figure)... So, he didn't put me on anything cuz he didn't know what to do if I wasn't having any symptoms. After being admitted to the hospital they consulted with a completely different GI even though I told them I wanted to see mine who works out of this hospital... before doing any other treatment or going over any treatment options or even counseling me on the risks, my gi decided to put me on Humira despite the abscess and antibiotics I am on right now. There's a little more info here:

http://www.crohnsforum.com/showthread.php?p=386870#post386870

once again, sorry for taking so long to respond. Thanks for the welcome :)
 
Location
Kirkwood,
Welcome Kayla!

:) Hey Kayla--what an incredible person you are. I admire your strength and honesty. You have faced your addiction and have the bravery to keep going with the process. Sorry about your continued problems with the bowel. This is an excellent place to talk, vent, and get advice. Knowing that Crohns is different in everyone--we still can empathize with what you are experiencing. It's an evil disease--but we will all stick together to hit it hard! Praying that they will find the right combo of meds for you and that you can feel better soon. Just remember that you aren't alone in this! Stay in touch.:soledance: Dana
 

David

Co-Founder
Location
Naples, Florida
Hi Kayla,

You have nothing to apologize for :) I hope the move to the new area has been a positive one though I know you're currently in the hospital :(

Since it sounds like you probably have ileal CD and are always tired, I would request that they test your vitamin B12 levels (post the results here). People with CD, especially in the ileum, are often deficient and that can lead to fatigue.

*hugs*
 

Angrybird

Moderator
Location
Hertfordshire
Hi Kayla and welcome :hug: I think you have done incredibly well to overcome what you have already. It is definetly hard to talk about this disease with new people - there is nothing pretty about about having a ticky tummy and it never smells of roses :) This is definitly the right place to be as everyone gets it and if you have an embarrasing moment you can bet there is someone here who has experienced something worse. I agree with David about getting your B12 checked, I always feel better after I have had my jab.
 
Hi Kayla, thanks for sharing your story. I'm new to this site and you stood out to me, being a mid-20s female like myself. Although I can't relate to having an opiate addiction, I can relate to a lot of other things you said...I also feel very alone at times and feel like I'm being a burden on those around me. It might not feel like it, but I can sense you are a very strong person. You have been through a lot and I admire you for it. I am also searching for a better life for myself and am in the process of making some serious changes. Please continue to keep us updated and feel free to message me if you would like :)

Kyra
 

Jessi

Moderator
Welcome Kayla! :hug:

I agree with Kyra. You do seem like a very strong person.

Hang in there cuz the hospital can be a bit lonesome at times. Just come visit the forum for a good chat with some friends. :)

Oh and Kyra...and anyone else who feels like a burden on other people, please read this thread. It makes my day to read it. :D
 
Thanks for sharing that link Jessi :) It made me cry but that's nothing new these days... I can already tell this site is going to be very helpful for me :)
 
Thank you

Hi Kayla, thanks for sharing your story. I'm new to this site and you stood out to me, being a mid-20s female like myself. Although I can't relate to having an opiate addiction, I can relate to a lot of other things you said...I also feel very alone at times and feel like I'm being a burden on those around me. It might not feel like it, but I can sense you are a very strong person. You have been through a lot and I admire you for it. I am also searching for a better life for myself and am in the process of making some serious changes. Please continue to keep us updated and feel free to message me if you would like :)

Kyra
Thank you so much for that. It's really wonderful to not feel so alone. I have been told that I am a very strong person in the last couple days, but you're right, it doesn't always feel like it. I would love to get in touch with you and will message you very soon :) Thanks for responding! Your response brought up a lot of good emotions... almost had some happy tears :)

I hope you find what you need in the process of change. It's not always easy, but remember there is a light at the end of the tunnel. <3
 
Powerless, I was feeling very bad and in a bad place when I read your post and it changed my outlook straight away. You're amazing, keep it up and remember nothing stays the same forever
 
My sister also has chronic stomach pain like yourself, ironically she looks like you. She stays positive in life, maintains a high self esteem and does her best to associate with others and make appointments with friends in order to keep going. Best of luck Girl!
 
Powerless, I was feeling very bad and in a bad place when I read your post and it changed my outlook straight away. You're amazing, keep it up and remember nothing stays the same forever
That made my day! I'm so glad there was something you got from what I said that took you out of your bad place. In the 12 step program we say there is no one who can help you more than another addict and I think it's the same for people who suffer from chronic illnesses as well... there's nothing that can help you feel more understood than another sufferer of the same illness. So, I'm so glad you got something from what I had to say. It makes all of that shit I had to go through worthwhile :)
 
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