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My story

Hello all,
I have been diagnosed with Crohns since May 2008 but have had gastro issues pretty much my entire life - my first colonoscopy was at age 6. I was hesitant to post on here - I have recently been accused of being a very private person by one of my close friends. I am aware that I tend to keep problems to myself because I want to be able to fix things myself and not burden the people I love. I believe I was in denial about how serious the Crohns was when I was first diagnosed. After a few months of trial and error with the meds I was on prednisone and started Humira in Dec. 2008. I went into a long remission period and was able to come off the prednisone in May 2009 and was thrilled.

In October 2009 my dad died unexpectedly. I was very focused on being strong for my mom and younger sister and ended up holding a lot of my grief inside. It of course set off a flare up in Feb. which I got under control with flagyll and cipro. In May 2010 I had surgery to remove what my gyn thought was a cyst in my posterior vaginal wall. It turned out to be scar tissue and what my gyn thought was a blind sinus tract. I then started having gas/discharge from my vagina. I told my gyn about it and she looked at me like I had lost my mind. It was so comforting to get on here and read that I am not the only one that has ever experienced that! So I got an infection near the surgery site and flared up again and went back on the cipro and flagyll again. The gyn did a ct scan and said it came back clean - no fistula for me. This calmed things down for about 3 weeks. At the end of July I felt a flare up coming on - I am now a master at catching the early signs of a flare up - and called my gastro to try to catch it before it started. I keep a log of my fevers which were ranging from 100.5 up to 103.1 and was told I had to have them for 10 consecutive days before they would see me. I then started having severe abdominal pain that got sharper and sharper every day. When I went in to see the gastro he did an incredibly painful exam and stated that the tissue he could feel was so diseased he believed it was past the point of responding to meds and sent me to a colo/rectal surgeon. The surgeon scheduled surgery for the next day. Turns out I had a large absess at the base of my spine and a rectovaginal fistula. He installed a seton drain that was incredibly difficult for me to adjust to but after the first week I am now handling it much better. I felt good for about a week and a half and now am flaring up AGAIN. I am bad about overdoing it when I start to feel good and am pretty sure I have contributed to the onset of this flare up.

I am on here because I need help learning how to manage my stress levels because I am horrible at that. One important lesson I have learned through my summer of sickness is to stop fighting the disease. I have been telling my family the entire summer "I refuse to let Crohns control my life!" I realize now though that this attitude does not help me in any way - if anything it hurts me. I try to work and go like I am 100% healthy and all it does is run me into the ground. I have been talking to my mom and husband and a few friends about everything but no one knows what to say - especially my poor husband who has told me it kills him to watch me suffer and not be able to fix it. So here I am - finally open to accepting the support and advice of others. Everyone's story is so touching and I am honored to be a part of this group.

Thanks for reading,
Allison
 

Crohn's 35

Inactive Account
:welcome: Allison! I am glad you found your way here and there is nothing wrong with being a private person, we have many on here. I don't do the FB thing, just don't need to let my friends know every aspect of my life. However, your family and yourself included goes a long way to let them know you are aware of this disease and tell them how you feel and they can at least support you. I would think any caring spouse feels the same way, my husband tries to move mountains for me and would do anything for me to get into remisson.

You dont have to live the disease, just don't ignore it because it will remind you and that is bigger disappointment. You do what you can when you can. Stress is hard, trust me, I don't deal with the little stuff and it mostly is little stuff. Big stuff I am good with, and I do what I am capable of. So sorry about your dad, losing a loved one really does make the symptoms arise, big time. A death, divorce and moving are the 3 main things and coping with that is hard, goes straight to our gut.

Glad you found us, hope to see you around the forum, whether to vent or laugh or just plain information, there are many to help you out! :hang:
 
Allison, I am so sorry to hear your struggleing with this disease. I think it is hard to accept that we are sick...and we tend to ignore it. You sound like me, we can take care of ourselves and fix ourselves. WRONG! Take things easy, its okay to feel bad and be taken care of by the ones we love. Take your medication and let yourself heal and try not to be so hard on yourself. Peace, Sue
 

Astra

Moderator
Hi Allison
and welcome

I'm not like that, the world and his wife know all my problems now! lol
I've had death, divorce and moving house this year!
sorry to hear about your Dad, I totally empathise. It suddenly hits you months later, yeah? you've hit the deck, yeah?
Ok, now it's time to get some help with this, you can not do it alone.
Firstly, tell your GP, he/she will help by a short course of anti depressants, secondly, inform your employers about what's going on, they have a duty of care to ensure you're well. Thirdly, make a list, chunk this list into priorities. Then sit down with family and delegate and deploy. You are not superwoman, you need help, so demand it!
This will alleviate your stress levels, help you to remain calm and most importantly, help you to rest, this is crucial for healing. Time to stop fighting it, and go with it.
I've been there, I know all about it!
any questions, lots of people here for you, you're no longer alone with this.
lotsa luv
Joan xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hello Allison, welcome!! Wow Joan!! I'd say that Joan's advice is about perfect!! Good luck Allison!! Hope you stick around!!
 
Welcome Allison,
I can really relate to how you feel about wanting to try and fix everything yourself. I have had a really hard time accepting that, I have went from a very mild disease (I felt fairly normal) to having a severe case, I have had so much pain, I never knew others were suffering so.
Being on this forum has helped me more than I can say. I have a very support husband, but it is a comfort to me that I am not alone.
Hope you find what you need here.....:rosette2:
As for stress I have been trying to meditate some everyday with deep breathing, seems to help some.
:hang:
 
Hi and welcome Allison. I am new on here, too. I am not private about some things, but am about my Crohn's. I think it is nice to have a place to come to talk about where we are not judged and get thoughts and advice from people who are actually living it : ) Hope you find some new friends and some good information. Doris
 
I can completely relate to how you say you try to live life like you're 100% healthy.
I'm constantly comparing myself to people who aren't sick which makes me feel like a failure when I'm too unwell or tired to do things that other people take for granted.
We need to realise that we do have this disease and that it's going to have a toll on almost all aspects of our life. The key is finding a balance between being aware of it and acknowledging it and not letting it rule your life.
Put yourself first for awhile and focus on getting better before you tackle other things, your mind and body with thank you for it :D
 
Hi Allison and WELCOME !!!! I am glad that you found the forum and I am sure it will help you out. there is alot of support here. I know it has helped myself and many others.
 
Hi Allison, welcome to the forum. I hope you are able to get some good advice on here for yourself and that you start to feel better. It is full of wonderful, caring people, most of whom are going through or are living with someone with Crohn's...

Take care,
 

DustyKat

Super Moderator
Hi Allison and :welcome:

Good to see you here. I can't add to the excellent you've already received but I will say that this is a fab place for support, understanding and info so please stick 'cause you will be a most welcome addition to the forum.

Take care, :)
Dusty
 
Thanks yall!

Thanks so much everyone for all your advice and support - it has definitely helped lighten the load I've been carrying. I saw my nurse practitioner (who I LOVE) at the gastro office yesterday for my flare up. I'm back on flagyll and cipro and felt pretty good yesterday and so far today. She actually suggested I switch to a different doc in the practice as I don't really connect with mine. After this last round where he let me get sicker by the day she was not the only one with that opinion. I met with her supervising dr and he is fabulous! He came in and said "let start by all saying this together, 'Crohns sucks, Crohns sucks, Crohns sucks." That's what I'm talking about!! I'm excited about switching.

Joan - thanks so much for all your advice. My employer is aware of my situation as I have missed a good deal of work this summer. I've been out on FMLA as I used up all my accrued leave. They've been supportive so far. Also, after I boo-hooed all through my appointment yesterday, my NP suggested I talk to someone too - as I can not handle all this stress on my own. So I've emailed a grief counselor in my area for a consultation and am feeling good about taking steps to address things. It's so much easier sharing the stress! Who knew?! This is what I get for being so stubborn and hard-headed! :) Needless to say I am feeling better and grateful for every good day I have. I hope all yall have a great weekend!
 

Astra

Moderator
Aw Allison, that's great news that you're gonna talk this through with someone, it will defo help!
It also helps that you have understanding bosses.
good luck with everything, don't suffer in silence, lots of peeps here for you!
xxxx
 
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