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Hi everyone. I've been reading the forum for a little while, and decided its time to introduce myself. I'm JC and I'm 31. I guess I'll start at the beginning.

In high school, I was diagnosed with IBS and Acid Reflux. I always had stomach issues, but I just chalked it up to having bad nerves.

In my early 20's, I didn't experience much in the way of symptoms. I'm glad I didn't. It would have gotten in the way of my "fun" during that time!

Starting at about age 27, one night, I began feeling sharp, stabbing pains in my abdomen. I went back to see the GI doc that I had seen in high school, and he ran several tests over several weeks, mixed in with a visit to the ER and a few nights of wondering of I was having a heart attack, they discovered that I needed to have my gall bladder removed. So, two days before Thanksgiving, I did (My surgeon said I'd be fine by Thanksgiving dinner. Lies! All lies!). I recovered from surgery mostly fine, but now with symptoms that were all too familiar. I thought they were the common "digestive issues" associated with gall bladder surgery. I was wrong. They persisted.

After another year of dealing with cramping, alternating constipation and diarrhea, reflux, and more and more and more tests, my trusty old GI doc decided I needed to have a Nissen Fundoplication. If you're not familiar with a Nissen, they basically twist your stomach into an origami funnel that is supposed to solve your GERD. So, the day after Christmas I had surgery. I was supposed to go home the same day, but had a little reaction to the anesthesia, and had to stay in the hospital for three days. After about 6 weeks off work, I was well enough to go back.

My symptoms never really changed, and I lost faith in my GI doc who put me through batteries of tests, and a surgery without seeing any improvement in my symptoms. So, in the Spring of 2013, I switched to a new GI doc, who also is my mother's GI doc and we started all over again with a new barrage of tests.

In the summer of 2013, I was tentatively diagnosed with Crohns after having the Prometheus Test (which, by the way, my insurance company refused to cover, and denied my on all of my appeals). None of my scopes, or other tests have indicated Crohns. However, I have other symptoms that I think correlate to this diagnosis: inflammation of my GI tract, alternating between constipation and diarrhea, occasional sores in my mouth, skin irregularities, etc. that lead me to a few new medications. One of them, Pentasa, I believe, gave me incredible headaches and I had to stop it.

Fast forward to the 18th of February (about a month ago), I woke up in the morning feeling ill. I was so tired I couldn't move, had incredible headaches, my digestive system was a mess, and my mind was in a fog. I've had every blood test imaginable, an MRI on my brain, and am scheduled for a sleep study. I'm not really sure what's going on with me at the moment, but I know my brain isn't working properly, my head hurts, and I don't have nearly the energy I normally do. I haven't been able to work since the 18th, even though I have an office job, and dealing with all the hoops I've had to jump through for FMLA and STD (short-term disability) haven't lessened the burden much (especially when the STD folks start calling every day to ask if you're back at work that day). My boss is working with me (thankfully) to get me set up to work from home (at least short-term, hopefully long-term), which will definitely help financially, and should help physically.

Thanks for reading! I'm a little stressed, anxious, not feeling great, and needed to vent!

Here's what I'm currently taking:
Multi-vitamins
Pro-biotics
Flexiril 10mg, Once per Day (At Night)
Bentyl 20mg, As Needed (Usually Once Per Day)
Lomotil 2.5mg, Twice per Day
Ranitidine 300mg, Once per Day
Zoloft 50mg, Once per Day
Sulfasalazine 500mg, 3 Times per Day
Vicodin, 5mg, Once per Day for Headaches
 
Hi and welcome to the Forum
Sounds like you have been through a lot over the last few years . I can imagine it's very frustrating indeed with on going issues like this. You say you have been diagnosed with Crohns, is this specific to any particular part of you GI tract or is it a shot in the dark diagnosis ?
Doctors aren't very good at this stuff are they but I believe we need to push a little harder to get anywhere. Its really good that your employeer is working with you on this as thats a big plus. I almost lost my job because I wasn't diagnosed and they just thought I was EATING THE WRONG STUFF.
I think sometimes you just have to weigh up the medication and the side effects for your illness. I too get headaches and only since ive been on Asacol. Im prepared to do put up with it as it lessens my bowel symptoms and enables me to stay at work.
I try to break each part down to a manegable task.
I too had lots of scopes and multiple bloods tests and never came up with anything so I was given Asacol to see if I improved. Over a period of time I didi and if I come off it I get worse so they believe it is taking care of inflammation now of the Ileum ( close to my appendix).
I try to stay as fit as I can as this has many benefits to the mind and body and does I feel raise your tolerance level.
I have accepted that I have this illness now and I try to just work with what i got each day , it aint perfect but I can handle it most days.
Hope you get some relief soon

Peter
 
Thanks Peter. The only test so far that has pointed to Crohn's is the Prometheus Test. None of the scopes or other blood tests have shown much of anything. I know how I feel though (not to mention the noises my system makes! lol).

I've always tried to be an active person as well. I love playing sports, being outside, and traveling. Right before my gall bladder issues, I had just gotten in the best shape of my life. I was working out twice a day, lost about 50 lbs. of fat, quit drinking, and improved my diet vastly. That's been tough to maintain over the last couple years of not feeling well. I feel like if I could get to a point where I could exercise regularly that would help out quite a bit!

I've been close to losing my job as well because of regular absences, and not putting in the usual overtime I'm expected to. But, it appears they're trying to accommodate me this time. We'll see how long that lasts!

I just got off the phone with my GI doc's office, and the medical assistant was borderline rude to me. Apparently they don't have any appointments available for two months, and they're not communicating the information I'm telling them to my doc properly. So I'm pretty frustrated with that in addition to feeling like my head is in a vice and being too tired to do much of anything.

On the bright side, my hometown Flyers just beat my other favorite team, the Buckeyes. So I guess I can lay around and watch some basketball today.

JC
 
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