Day in Day out- forever flare

[countrycoffeehouse]

Hi guys,
I am a mom to 4 kids ( 16,11,7,5) and a wife of 18 years. I am 36. I have been sick for almost 5 years. My story is kind of weird compared to most and I will be as brief as possible My youngest was 4 months old and I was nursing her.
Feb 24 of 2006 noticed a hemoroid ( first one ever and I had no idea why, never constipated no natural child birth) so weird.
Feb 27 crazy diarrhea started I thought I must have a virus.
Feb 27-March 29th I lost 38 pounds ( I was nursing a baby and had some post PG weight to loose) due to diarrhea over 15 times a day. Everything I ate cranked out in like less then an hour or so and looked not even digested. YUCK and crazy. at this point I had tried my mom bag of tricks. Brat diet, Diarrhea meds etc. I was dreading going to the doctor for this in fear of the tests..etc.
March 30 went to Doc, was referred to a GI who told me it would be about 4 weeks to get me in, told her my symptoms she called back with prep info for a colonoscopy in 24 hrs. Had the test, woke up to severe crohns disease- one of the worst cases my doc had ever seen. How does one go from healthy to super sick in 2 months! Crazy
So fast forward almost 5 years.. and I am still super sick. Only relief came from remicade which worked great until I missed a treatment, then on the restart I had a severe reaction and stopped breathing.. Humria, and Cimza didn't work.. I am now with no insurance and no meds.. and dropping weight pretty quickly. hopefully my husband will have insurance with in 3 months.. I have huge fissurers and hemroids from the diarrhea and only sleep about 2 hrs at a time before that mad dash to the potty!
I am SICK and sick of it!

 

[Crohn's 35]

Hey there, glad you made it here!! My 4 kids is trying enough without having this horrid disease, I dont know you survived. Crohns is very tricky to diagnose and can creep on you, that is why it is a very unpredictable disease. Being on a Low Residue diet and no diary can help to some degree, stick to bland foods, so it goes through, and eat homemade applesauce it slows down the D a bit. I only thing that is cheap but still need a script is Prednisone...I know it is a rotten drug but will hold you til you can get insurance and have medication to kick in and help you. I have been on all the biologics too except Cimzia , it is not in Canada. Methotrexate shots could be an option for you but pricy. You really need sleep, it is so important to a Crohnie. Stress is hard on us too, with young kids that has to be rough.

Lots of people here to help you, hope you feel better soon and get the help you need. Glad you joined our community!

 

[TMos]

cch, welcome, and I feel horrible for you. I know with this economy that times are tough, but you can now get coverage without pre-existing condition exclusions if you're uninsured for 6 months. If you can beg, borrow or steal the money for the premium you need to do that asap so you can get treated. Your state's departmen of insurance web site should have info on how to go about that.

This is a terrific site with alot of great people on it, but right now you need to see a doctor. This is a nasty disease and not something to delay treatment of when you're in a flare as you describe.

 

[Astra]

Hi cch
and welcome

Gosh, you've got a lot on your plate right now, no wonder you're feeling rough!

I don't know how your system works with meds and insurance, but I'm so glad I don't live there! Good old NHS!
I have to agree with Pen, Prednisolone might be the best you can do for now, plus the low residue diet. Also a script for Codeine Phoshate from your doc will slow D down and help you to sleep too.
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[countrycoffeehouse]

your all so sweet...

Its just the way life is for me. I have learned to function and really if I didn't have 4 kids I think I would lay in bed all day. But life marches on with or without me and I force myself sometimes to choose the march I didn't mention that I am super anemic so much so that I have been hospitalized for it 2 times.. I can not absorb Iron and that means no red blood cells which are kinda handy little things for carrying O2 around to say you brain.. I am used to the constant trips to the bathrooms.. the constant pain that starts within the first 10 min of eating.. the pooping my underwear the knowing I need to know where each bathroom is, the freaking out about a traffic jam on the freeway. I tend to stay dehydrated most days to slow down the trips to the potty.. gatoraid is my friend ( diluted)
I will not take predz. unless I am in ICU.. it makes me worse every time I come off of it and I feel crazy on it.. not something I am willing to do. I will take the weighloss/nightsweats/and zillion trips to the bathroom over the drug side effects. It would have to be IV anyways or injection due to not absorbing pills or oral meds.. my GI tract is a mess so I have had zero luck with any oral meds. I know what is coming and I know that I am getting sicker. I am just praying that we get insurance sooner then later. Getting coverage for me is way to $ so its not an option if I want my family to remain in our house. I think the thing that scares me most is that I know I am dropping my iron again and they only could get me to a LL rating when I did my last iron infusion. So as this creeps up on me I am dreading it. I am pretty sure it will place me in the hospital again.. hoping to keep it at bay until at least november.. we will see though. The reason the anemia is so bad is because I have issues with absorption and I have a perpetual GI bleed that haunts me.. good times. But I am still so thankful for each day and I have an amazing family that loves me so it isn't all bad

 

[lseibert]

:welcome: CCH,
I wanted to say this is a great forum with tons of information and wonderful, helpful people.
You sure have a lot to deal with and I'll be praying for you to get the insurance as soon as possible!! You're lucky to have a great family for support.

I'm sending you a big ((( hug )))
:hug::hug::hug::hug:


:getwell::getwell:

 

[Scifimom]

Welcome CCH I am having severe Crohns too and I went from being healthy (July 2nd 2009) to being tottaly sick, in a coma in ICU (July 3rd 2009) I also have a family that keeps me up and running most of the days but still... I know its freakin difficult. There are tons of info available here. And if you need any additional info just ask.

Scifimom

 

[DustyKat]

Hi cch and :welcome:

Well I gotta say, I'm glad you found your way and wow what a time of it you've had and are having!!! Where is your Crohns located and do you take supplements or do you not have them because you don't have insurance??

My daughter has had 60cms bowel removed (primarily small bowel) and she has all the absorption issues associated with that as well as short bowel syndrome but she is still able to absorb a certain amount of oral medication. Good luck with getting onto insurance and I hope more than anything you can treatment and relief soon!

Take care, :hug:
Dusty

 

[Dexky]

Hi CCH, welcome!! I see our healthcare system is taking another bashing!! Well deserved??? Perhaps!!! I am equally unimpressed with the long waits I read about for tests and appts. by many of my foreign friends on here!! Hopefully, you can use Tmos's advice to find coverage quickly. I think the "pre-existing" clause is a good, common-sense fix that will improve our system a great deal!! Good luck!!

 

[countrycoffeehouse]

I find I can deal with the pain and frequent trips to the bathroom. But the hemoroids and fissures are AWFUL and make me want to scream when I have to go.. which is often.
My Crohns is widespread and these are my doctors words.. " I have never seen a case where its so wide spread.. its like every 8-14 inches there is disease and those are the long stretches of good tissue." so darn encouraging last year when I was in the hospital I begged the doctor to just cut it out and he said there is no way it would help due to it being so scattered throughout.. oh happy day I just tell myself that it could be stage 4 cancer or something.. but that is not much of a comfort Its nice to know I am not alone

 

[Dexky]

I'm not sure how you ...but I'm glad you do!!

 

[countrycoffeehouse]

Well has better side effects for my kids and I keep telling myself it will get better one day...