Defying Gravity: My Story

[rapid_reader]

Let me rewind eleven years. So I was first diagnosed at the age of eight, looking back though I had been sick awhile. At the time I was suffering from terrible C diff, so much so I was anemic.

Let me stress the fact that I was eight and thought that it was normal for there to be blood when I went to the bathroom. I was naive and thought everyone else experienced that like me.

If I had known I would have done something sooner.

So I'm sent to the hospital. I'm pretty sure most of you know the drill from there. They put me on a ton of medication, including the steroids that made me crazy. I would go into detail but this post is going to be long enough as it is.

Even after all these years they still can't determine whether or not I have Crohn's or U.C. The last few years we've been leaning towards U.C.

I had such a tough time through the years. I was having constant flares and all the treatments would stop working within a year most of the time. At one point there was nothing more I could do, or so I was told. Did I listen, no I didn't.

I went to my doctor and negotiated with him. My only hope was left with feeding tubes. It had worked in the past and I was getting desperate.

No way I was doing the NG tube, that thing hurt. Well he made me use the NG tube for two weeks to see if the feeds made me feel better before planning to give me something more permanent. Much to my delight I did get relief and soon after that I had them insert a G tube.

It was able to hold me over until I turned 18. At this point my IBD seemed to have settled down.

Now my doctor told me that it sometimes gets better with age, but I never believed that. I know there are so many out there that this doesn't hold true for. Luckily it did for me.

Now I didn't join with the intent of getting support, I joined with the intention of giving it to others. Well, I do have trouble accepting what treating my IBD has done to my body in the long run. It would be nice to talk with others that can relate.

I like to consider myself a veteran when it comes IBD. You name it I've probably done it.

Hopefully what I've taken away from my hardships can help someone new to this. I'm living proof that IBD isn't as cut and dry as some doctors have you believe and I think people need that kind of hope.

In light of one of my new diagnosis I had been contemplating whether I really had IBD to begin with. I do though and there are biopsies to prove it.

Little fact about myself, I tend to be a bit of a control freak. As you can imagine that totally clashes with the nature of my illness, er ilnesses...

Besides the IBD there's the Osteopena, CFS. I have POTS a specific form of Dysautonomia, I was just diagnosed with FI two weeks ago, and for years I've had a sleep disorder we're still trying to put a name to. That's everything off the top of my head. Again I'm not going into detail, if i did I'd be typing all night.

So while I do have a handle on my IBD, I'm still fighting the good fight with all my other medical issues.

 

[Dexky]

Welcome RR!! I'm reading your posts thinking an 8 yr old sure seems to be making a lot of calls as to her treatment!! Turns out, you're a control freak and apparently you've always been! I hope you stick around as I'm sure your years of experience would be a great asset around here. Good luck!!

 

[xJillx]

Hi and welcome! I am glad your have your IBD under control, but I am sorry to hear about your other health issues. I sure hope things level out for you soon.

You really have been through a lot and at such a young age. You will be a valuable member around here with all of your IBD experience. I look forward to seeing you around!

 

[Jer's Girl]

Welcome Reader! Wow, you sure have been through it! but it sounds like you have a good attitude, which is half the battle! Thanks for joining us and sharing your experience. Looking forward to seeing you around the forum!

 

[David]

Greetings and welcome. IBD is terrible at any age, but no child should have to experience such a thing. I'm sorry you had to go through that at such an early age

Have you tried any of the biologicals such as Remicade out of curiosity?

I wish you well.

*hugs*

 

[rapid_reader]

I hate how complicated my medical issues are. So as far as the U.C. goes or maybe we're back to Crohn's...well it's my body and I've been leaning towards U.C. for years so there *sticks tongue out like a child*

I've had the upper hand in this battle for a while now, sure it's still a huge pain in the ass, right now I have bigger fish to fry. The Dysautonomia, P.O.T.S. to be specific, is the current bane of my existence *bangs head repeatedly on the desk*

Side note we think GI is bad let me tell you Cardiology is heartless, no pun intended.
Lucky for me I found someone close by who treats P.O.T.S. It was also lucky because his daughter suffered from CFS so not only could he look at as a doctor but a human being to boot. (damn it's times like these I wish there was a sarcasm font)

I later came to find out that a ton of illnesses seemingly tie into the monster that is known Dysautonomia, it's mind blowing. No but seriously go check it out, in fact if you plan to just message me and I'll get you to the right website.

Yes I'm shamelessly raising awareness for this illness and all those like it. Here's the thing IBD is actually very well known in society, it just may not seem that way cause it's not usually something you bring up at dinner let alone at all for people such as myself who don't like to acknowledge it.

For anyone who want to argue this just for the sake of it I'm nipping that the bud with the example that Crohn's was mentioned in passing on Glee.

Back on point Dysautonomia isn't as well know, in in fact it's still being debated whether or not it's even an illness, which it is. It has got to be the trickiest illness I have ever had the fortune of knowing. It just so happens that it's diagnosed as something else before anyone can really look at the patient from all angles, and most doctors are writing it off as the usual (and by that I mean (stress, anxiety, all in your head, a kid just seeking special attention, ect.)

Rant aside I can't stop beating myself up over everything. I keep coming back to the idea that I should have been able to avoid this, last week I couldn't stop wondering if by taking humaria and Remicade I made my chances of recorery worse. When I had been taking these biologics they weren't even on the market, I was one in select few to in the US to take Humira under the age of 18. Remicade I had to stop take a few years previous to that as it stopped heping and started amking things worse, same went for the Humira.

I'm under the constant belief that I should be able to think myself out of this mess. If I just see the right doctor take the right medicine ... I never get anywhere doing this, more distressed than I started out if anything. I know it won't help anything but I can't help it and I go to think about something else for 15 minutes and the circle completes as I'm right back where I started. Disengaging from my screwed up thought process.

Most all of my other medical issues are kicking my ass. It's just not fair as soon as one thing calms down something ten times worse introduces itself. The only thing that keeps me from crying every time I contemplate my medical situation these days is the knowledge that I have overcome my U.C. and I can't dwell on this victory too long or in my head I logically reduce it to a moot point, have I mentioned how screwed up my thought processes are?

this really blows. I mean is everything over for me before it's really had the chance to begin. I keep thinking about everything I've envisioned for my future and it's gut wrenching. If I type out specifics I'll burst into fits of hysterics.

I thought I'd share my most recent contemplations, if for nothing more than to give someone who feels they have hit rock bottom some new level of perspective.

 

[David]

I totally understand feeling that we can think our way out of IBD. I'm still stuck in that thought process for sure.

One thing, so often depression is co-morbid with IBD. Have you thought about talking about how you're feeling with your doctors? You DO have a future, and very likely a bright one at that. But sometimes we need a helping hand to get on the right track, and there's nothing wrong with that!

*hugs* to you my dear.