I should probably introduce myself

[Lucinda]

Hi everyone. I've posted so much in the past few days that I guess I should properly introduce myself even though I doubt my story is really that interesting.

I am a 40 year old woman in Oregon who has Crohn's disease. It took three different doctors telling me that before I believed it for good. I'm slow that way. Or stubborn. You decide. I have also been diagnosed with Celiac.

All my life I've had stomach aches but it didn't come to a head until I was 24 and about to get married. Apparently getting married, taking 12 graduate credits, looking for a new job, moving, and spending a week in Texas for training all in one summer is stressful. Who knew? Anyway, I developed Erethyma Nodosum (aka painful, swollen bumps) on my legs that summer. It was freaky because the same thing happened to my mom right before she got married.

For the next two years I had all the usual suspects--pain, diarrhea, gas (gotta love when a girl can clear a room faster than her husband), etc. but no blood. Told me I had IBS and it should fade. It didn't.

In 1998 I was diagnosed for the first time after a hospitalization and colonoscopy.

In 2001 sent to a GI for first time and told not to get pregnant. Too late. Had daughter in 2001 and son in 2003. (Once we figured out how to get pregnant, we got really good at it. )

By 2005 I was a wreck and put on Remicade because nothing else was working.

By 2007 I was pissed because I wasn't any better. So I went to a naturopath who checked for food intolerances. Gave up gluten, egg, dairy, and was diagnosed with Celiac by my General Doc. Stopped taking my meds because Remicade SUCKS. Felt better than I had in years. Believed my Crohn's had been misdiagnosed. In actuality, it was probably in remission and I didn't know. Maybe.

2009 second colonoscopy. Told again I probably have Crohn's still but refuse to believe it. Try Asacol and it doesn't help. Stop taking it.

2010 End up in the hospital with my first abscess. (And a month later my 2nd and 3rd). Third doctor tells me I have Crohn's. We argue. He wins. (I hate when that happens but I really love this doc.)

Currently on Humira (with my very own sharps container and specialty pharmacy), Pentasa (which is making me CRAZY), and various vitamins, blah blah blah.

So there it is. If you made it through all of this, good for you. You have a larger attention span than I do. Clearly I try to keep a sense of humor in all of this. The reality is I have a lot of days where I'm in pain. No real serious damage (Thank God), but lots of pain. It sucks to not be able to always be there for my kids in the way I would like but they are learning other important lessons when I'm sick. My Crohn's is in my small intestine near the illeum (hence never seeing blood). I've shown you mine. Wanna show me yours?

All jokes aside, this place is the most positive forum I have seen so far. I'm happy to have found you all.

 

[NancyHany]

Hello there, I'm sorry about all you had to go through. Humor is essential in our disease, personally I have a self defense mechanism when I'm really stressed or scared,I laugh and I try to make everyone around me to laugh or smile too. It's hard to accept you have this disease, even harder to live with it but at one point you realize that its chronic so you better enjoy what you can get away with.

I'm on Remicade (Just had my second infusion, second serum sickness but for the first time I can see slight improvement in my condition) and Pentasa ( My GI is forcing me to take it for the second year though there's no improvement whatsoever with it). I didn't try Humira but it seems to be working well with a lot of people here. I hope you find what makes you feel better soon and keep us updated

 

[Keepingfaith]

Welcome to the forum! You've deffinately come to the right place. Good for you for finding the humor in Crohn's, it will take you a long way :thumright:

Crohn's, however mild or severe is deffinately something that needs to be treated. If not, it could cause serious life long damages.

Good luck with the Humira, it was the only drug that offered me some relief other than Prednisone.



Take care! :heart:

 

[Astrid]

Hi, welcome. I'm so sorry you had to deal with all this. I am gla dyou see the humor through it all though.

 

[Pen Pen]

Hi Lucinda. I just wanted to say thank you for taking the time to reply to my question about whether or not to have a second child. It was very much appreciated. x

 

[Angrybird]

Hello Lucinda and welcome to the forum, am really glad you have decided to join:ybiggrin:

How long have you now been on the Humira? Are you doing well on it or is the tum still unsettled?

AB
xx

 

[Lucinda]

Angrybird (love that name!). I started Humira last October and have been on it since. We added Pentasa in May because I still kept needing Prednisone. I've tolerated the Humira much better than I did the Remicade but I think it's probably due to being smaller doses more often instead of one big shot every 8 weeks. I was wiped out by the Remicade for a good day so I really hated it.

Things are certainly better than last summer. Not perfect but I have more good days than bad. I do a lot with diet and vitamins and stress management so when I slip on that I end up back in bed for a day or two but even that is milder than it was.

 

[David]

Hi Lucinda and welcome It's great to have you here. I'm glad you jumped right in and have been enjoying your posts.

Out of curiosity, which vitamins are you taking?

See you around!

 

[Lucinda]

Nothing very consistent admittedly. I take Calcium and Vit. D. A multi and a B complex. When I feel really wonky I take a thyroid support supplement to balance out the moods. Slippery Elm for tummy aches and occasionally activated charcoal to control gas.

I don't know that I've found someone I trust to give me an accurate analysis of what vitamins I need because most I have worked with seem intent on selling me hundreds of dollars of vitamins they personally sell. So I go with the basics and the things I have been told more often than not and how my body seems to feel at the time.

 

[David]

So now is a bad time to try and sell you David Brand Vitamin D?



In seriousness, my suggestions would be to get your vitamin B12, vitamin D, folate, and magnesium levels tested. Those are the most commonly deficient vitamins people with Crohn's Disease are deficient in. That way you aren't guessing or listening to anyone, you instead have hard data that you can then utilize to help choose proper dosing and dose method if you are indeed deficient.

 

[Lucinda]

I'm pretty sure my GI tested some of that in the past year. I need to talk to him about it again and get the actual levels from him. He's pretty good about testing things if I ask him too. But it's only been in the past few months where my mind has been clear enough again and my energy high enough to actually start following through on some of that stuff. Thanks for the tips. I will learn what I can and then ask you more questions since you appear to be abundantly knowledgeable. Maybe I'll even buy some David Brand Vit D. :ylol:

 

[LaLaNapa]

I love your humor and your fighting spirit! Also love to hear from another 40-year-old woman fighting the fight. And I totally identify with denial. I still go off on venting sprees about just how stupid this Crohn's is - it makes no sense and I feel like if I don't believe it in it will go away. But what I am thinking? It's Tinkerbell?!

Anyway, all the best to you!!

 

[David]

I will learn what I can and then ask you more questions since you appear to be abundantly knowledgeable.

As much as I'd love to believe I am, and appreciate the kind words, I'm really not. I'm just trying to help, but no doubt get it wrong sometimes, so implore people to do their own research and of course discuss everything with their care provider.