The Story of Me

[Elidine]

Hello, I’m Josh. A 34 year old married father of 2 boys ages 9 and 11. As a child growing up, I knew I wasn’t feeling like a “normal” kid (preteen). I had pains in my ankles and back that would make me cry when I would try to walk. My parents just chalked it up to growing pains (we were very poor and had no insurance), so it was never checked out. Jump forward to my late teens and I started to have bad and frequently painful and nauseating bowel movements. They were embarrassing to say the least, but they were generally few and far between.

Jump forward to my late mid 20’s and I’m working a high stress job that basically stresses me to the point of having to take a brief FMLA leave of absence. Around about that time I started having blood in my stool during one of the aforementioned episodes. At the time, I had insurance, so I went to the ER after one particularly bad bout. They looked me over and sent me home. No diagnoses other than stress or possibly hemorrhoids.

Jump forward to age 30 and I was at work one day when suddenly I couldn’t stand or walk. The pain in my right hip (soon to be both hips) developed rapidly and got so bad I had to be escorted to my car (I know, what were they thinking letting me drive?). Anyway, long story short, despite testing negative every single time for rheumatoid arthritis, I am diagnosed with it and began taking drugs like plaquenil and tramadol.

Then late last year I got sick. Really sick. To the point where I was unable to work for an entire month. I was unable to get out of bed most days due to pain, fatigue, nausea, etc. My doctors gave me antibiotic after antibiotic and yet they couldn’t find what was wrong. My PCP actually asked if I thought it was stress related. After about a solid month, I was starting to recover to the point I could function and work again. I continued working despite having more frequent bouts of cramps/diarrhea/fatigue.

I was able to finish out last year ok, but then this year the symptoms came back with a vengeance. Eventually, my PCP recommended that I have an endoscopy and colonoscopy to find out what was going on. He referred me to a GI. The GI found nothing on either the endoscopy or the colonoscopy. I was then scheduled for a CT scan. The CT scan came back with nothing. The GI then ran something called a Prometheus test. That came back positive for Crohn’s disease.

They then scheduled me for another CT scan, unknown why, but apparently after waiting a few weeks, they saw something on the 2nd one.
Anyway, my treatment regime consists of pentasta and steroids. They have finished testing me to start humira as the pentasta does not seem to be working.

To top it all off, due to the near constant flairs I’m having, I have been on bedrest for quite some time. I have no energy, and I am in constant pain. I’ve told my GI that I’ve also experienced what I would call “brain fog”, but he apparently doesn’t believe it is related.

This time 2 years ago I weighed 240lbs. Today I weigh about 128lbs. My blood continues to be highly anemic, but apparently not bad enough to set off their bells and whistles.

Anyway, here I sit, waiting for the insurance to see if they will pay for the humira treatments.

Overall I’m not satisfied with my GI, but I want to get on Humira before changing doctors. I just don’t believe he is taking all of my symptoms seriously. :sign0085:

 

[teeny5]

Hi Josh. I hope you get on Humira and find a better GI dr. It's important to have one that will listen to you. Thank goodness you had a positive result on the Prometheus test...who knows how long it would have taken them to figure it out without it!

 

[Elidine]

Yeah, as bad as it sounds, I was starting to believe maybe I was crazy until the positive test results came back. I was actually relieved to finally have an answer.

 

[24601]

Hi! Welcome to the forum!

I'm glad you've finally got a diagnosis. Hope Humira works well for you!

How long have you been on the steroids? Have you seen any improvement since starting those? Steroids are fast-acting for a lot of people but not everyone responds so it might be worth trying enteral nutrition as well - especially with your significant weight loss. Enteral nutrition basically refers to drinking complete nutrition drinks like Boost or Ensure instead of normal food. It can be a really helpful supportive therapy if you're not able to eat enough food but when used instead of an unrestricted normal diet it can induce remission. Studies show it's similarly as effective and fast-acting as prednisone. This may help you bridge the gap until Humira gets to therapeutic levels which can take a few months.

Best of luck. Hope you're feeling better soon. And, yes, brain fog is real!

 

[Elidine]

I've been on and off low dose steroids (10mg or less) for my RA on and off for a few years. When the Crohns kicked in, the GI gave me taper packs which jumped the dosage up to something like 60mg and then a slow taper down over the course of a week or so. I'm currently taking about 20mg daily which doesn't seem to be doing anything. My next GI visit is pending notification that the humira has been approved. Hopefully this week or next week at the latest.

I know brain fog is real, my wife especially knows its real . Unfortunately, the doctor doesn't believe it is real/related. I don't know why they think I would make something like that up. It's not like I want to forget what I'm talking about mid sentence or zone out in the middle of conversations. Oh well, just another reason I'll be searching for a replacement GI soon.

 

[Elidine]

I got my first 4 injections of Humira on Friday. Decided to take 3 in the legs and try one in the stomach. The injections in the legs I would rate a 5 or 6 on the pain scale. The one I tried in my stomach was easily the equivalent of a hornet sting. I won't be using my stomach again that's for sure. Granted, I'm currently 5'6 weighing in at about 125, so there wasn't a lot to pinch at the injection sites.

In 2 weeks I take 2 more injections then it's down to once every other week.

So far, the only negative side effect was a scary one. I was out driving today and just completely zoned out and blanked for about 5 seconds. Luckily I was in a parking lot and the only danger was to the shopping cart (that I didn't hit). First time it's ever happened. Hoping it was just due to heat and stress and lack of energy.

No swelling or redness at the injection site. All in all I think the first round went well.

 

[pjm357]

If your insurance wont pay for the Humira or if the copay is to expensive for you they have patient assistance that will help you. I use to get mine for 5 dollars a month through this program. Just contact the company and ask for the Humira protection plan Here is a helpful link http://gitract.mngastro.com/mngi.nsf/patient_education/MNGI-89BJEE.html hope this helps

 

[Elidine]

Thanks for the tip! I actually was able to get that same program at the same cost. I wouldn't have been able to afford it otherwise.

 

[Honey]

Hi there, and welcome . I am glad you have eventually had a diagnosis as it hard going through all that. I hope the Humira works for you. I was on that for sometime ,giving myself the injections. Yes, this illness does affect your thinking and emotions, naturally! I take it by brain fog you mean getting tired and switching off from thinking. When you are dealing with such a difficult illness, it is bound to affect your whole system. However, once the right treatment is found for you this will improve. Good luck and best wishes. Let me know how you are doing.:
:welcome: