• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

I give up

Well I heard back from both my GI and Hematologist after my little "episode" this week.

The Hematologist is thinking that the immune globulin issue is a gut issue which I can agree with. He's researching to see if there is a test that can show I am losing protein through my bowels (there is, already looked it up but I'm not saying anything).

The GI verbatim "Your colonoscopy was clear 6 months ago, I see no reason to chase these CT results"

So in other words, I have no recourse, no treatment to speak of and I'm left hanging again. I have given up any hope of anyone ever finding out exactly what my deal is. I guess it must be Crohns .. but who the hell knows.

I'm just determined to take care of myself the best I can and hope it either gets better or gets tremendously worse so that someone will take me seriously again. I've gone back on B6, B12 and I've added Potassium supplements since I seem to be chronically low on it, I'm aware you can overdose so I'm being very careful and following the directions on the bottle as well as my dietary intake. I've switched to almost completely liquids, boost, gatorade and clear soda. I do feel somewhat better on this routine so I'm sticking with it. I have had one meal this past week and it set ok .. but caused some lovely D.

I'm going to start looking really hard for work and if I get something then I'll just have to cross that bridge when I come to it, insurance issues and everything else that will come in to play. I just can't sit here anymore hoping a doctor is going to figure it out. The only biologic I haven't tried is Remi but given the terse responses I've seen lately from my docs I doubt they'd want to even try it. I have a nearly full scrip of Aza but I don't think self medicating with it given the side effects is a good idea.

So yeah .. pretty damn depressed right now but I'll get through it just like I always have.
 
:( I'm sorry Drew....hang in there...

You may have said something about this before, but can you find a new GI? This one seems fairly uninterested in getting this solved for you, he/she is just content with letting you just live like this. I think your outlook of taking care of yourself the best you can is a good one considering your circumstances. SOMEthing has got to turn around for you here.

Try to keep your chin up.
 
Drew, I am sorry that you have been having such a tough time. Not being diagnosed but feeling like hell is extremely frustrating. I have read some of your posts and it is obvious that you are a really strong person. I hope that things turn around for you quickly and that your docs can get a grip and help you to get better.
 
I am sorry you are in this, not too uncommon position. I have been in your boat, and my wife is in a similar situation, which is why I have to treat her disease. At least in her case, I know what it is.

At least they have not blown you off. They are still looking and that is the most important thing. A determined doctor will go to the end of the Earth to figure it out.

Dan
 

My Butt Hurts

Squeals-a-lot!
You sound understandably frustrated Drew. Sorry for all the crap you're going through still. It's been too long. Hopefully the hema's protien test will figure something out. Thinkin' about ya'.
 
I'm sorry Drew... but ya gotta keep demanding answers... when you get to feeling defeated, take a few days off from it all.... but don't let whatever this is beat you. I'm only saying this because we all know how hard you have been/are fighting, I know that you can pull yourself through.

You got friends here to help you through.
 
Thank you guys. I sometimes feel like I'm just feeling sorry for myself but at the same time it's just so fscking frustrating.

I've come full circle now with the negative CVID tests that it must be Crohns, the fact that there is bowel thickening in my large bowel points more to that now too. I think I'll go back to my PCP and just explain the situation and ask if he'll do monthly or bi-monthly vitamin checks/cbc/chem panels so I can watch my levels. I think if I can get the nutritional stuff squared then I'll be doing a bit better. I'm losing my appetite again which isn't a real bad thing since I'm doing the liquids but man there are some points in the day where I just want to bite the shit out of a big ass steak.
 
> I sometimes feel like I'm just feeling sorry for myself but at the same time it's just so fscking frustrating.

Dunno about anybody else, but for me that statement characterises what Crohns does... I mean I know what's going on, and what we need to do about it, but I still feel down, depressed, right b1£$dy fed up, frustrated at how long things take. It must be magnitudes worse for you, not really sure what the heck is going on.

Keep at it!
 
I had yet another wretch episode Tuesday bleh. Chillin in line at the store talking to my dad and all of the sudden guts in a bag (fortunately) .. wasn't much there since I have been liquid up until yesterday morning. The D and fatigue are starting to come back too.

Not to mention being a crabby bastard to someone ..
 

My Butt Hurts

Squeals-a-lot!
drew_wymore said:
Not to mention being a crabby bastard to someone ..
She prolly started it - damn women. Maybe she (me) should have shut her frikin trap and realized you don't feel good and you don't need any more crap than what you're already going through, and just let shit go.
At least you made up now =)
 

farm

Captain Insaneo
If you ain't crabby sometimes, you will never get to make up!

Drew here's to hoping all returns to normal (normal normal; not crohine normal) by tomorrow!!:beerchug:
 
drew_wymore said:
Well I heard back from both my GI and Hematologist after my little "episode" this week.

The Hematologist is thinking that the immune globulin issue is a gut issue which I can agree with. He's researching to see if there is a test that can show I am losing protein through my bowels (there is, already looked it up but I'm not saying anything).

The GI verbatim "Your colonoscopy was clear 6 months ago, I see no reason to chase these CT results"

So in other words, I have no recourse, no treatment to speak of and I'm left hanging again. I have given up any hope of anyone ever finding out exactly what my deal is. I guess it must be Crohns .. but who the hell knows.

I'm just determined to take care of myself the best I can and hope it either gets better or gets tremendously worse so that someone will take me seriously again. I've gone back on B6, B12 and I've added Potassium supplements since I seem to be chronically low on it, I'm aware you can overdose so I'm being very careful and following the directions on the bottle as well as my dietary intake. I've switched to almost completely liquids, boost, gatorade and clear soda. I do feel somewhat better on this routine so I'm sticking with it. I have had one meal this past week and it set ok .. but caused some lovely D.

I'm going to start looking really hard for work and if I get something then I'll just have to cross that bridge when I come to it, insurance issues and everything else that will come in to play. I just can't sit here anymore hoping a doctor is going to figure it out. The only biologic I haven't tried is Remi but given the terse responses I've seen lately from my docs I doubt they'd want to even try it. I have a nearly full scrip of Aza but I don't think self medicating with it given the side effects is a good idea.

So yeah .. pretty damn depressed right now but I'll get through it just like I always have.

What's up Drew. A lot of us are on the same boat here.. I feel like my doctor has given up on me. Every time I go to him he tells me the same thing and tries to prescribe me other medications that don't do anything for me. It's really frustrating. But you know, sometimes when we dwell on these issues, I think it just makes it worse for us, and it further deteriorates our health. For the longest time my doctor thought I just have GERD, which is an acid reflux disease.. but i just didn't believe that GERD would screw me up like this and make me feel the way I do. So finally I got a colonoscopy done, and he saw some inflammation in my ileum where my colon connects to my small intestine. He didn't rule out it was crohn's or colitis, he just said maybe it could be those, but you probably have some autoimmune disease. I feel like I want to throw up everyday. Especially after I eat. I get depressed and I don't even go out anymore because I fear that I'm going to feel sick and throw up and be a party pooper. Anyways, what I'm trying to get at is... sometimes maybe we just gotta be strong and try to be happy. I know it's hard but sometimes when I try to relax and be happy, I feel like I am getting a little better. A lot of times doctors are too busy, they have so many patients they have to see and tend to... so it's hard sometimes for them to give you an answer. I'm going to try and maybe get into meditation and tai chi... might sound stupid to some people but hey it doesn't hurt to try u know? gotta learn to relax and maybe these flare ups will calm down a bit. Good luck to you... and hopefully they will find a cure one day... always have hope.
 
As keeps getting said, Drew, if you know what it is, half the battle is won, at least you can attack it. This enigma you keep trying to fight is wearing you down, because it's nebulous and ever-changing....something will give one day, just keep going so it's not you. :)
 
Thank you everyone for the kind words and encouragement and support. I really don't know what I'd do with out my CF family. I guess I get overly emotional and even overly dramatic at times but I just feel like this has been a roller coaster of ups and downs. It's not as if I'm going to die or anything but sometimes it feels like I just keep coming up with dead ends and there has to be an answer somewhere, anywhere out there for me.

I want to get back to *my life* as it was previously and it just feels like that will never happen. I've decided my next course of action is to get my medical lab tests as far back as the old clinic I used to go to has them for so I can plot them all in an excel spreadsheet and see if I can find anything out of the ordinary that might be useful. I think I'm at the point of submitting to Occam's Razor though .. in the absence of any other evidence the most obvious answer is the correct one.
 

forum contributor

Captain Obvious
You're not being overly emotional or over dramatic, Drew - what you have, whatEVER you have, kinda sucks the life out of you.

You can't give up as long as we're all here for you. We won't let you :)
 
I don't get it .. the throw up thing happened again last night. I was in the car driving with my mom and just talk normally and out of no where I got this weird feeling in the back of my throat and BAM vomit in my mouth ftw ..

I emailed my GI and was like look put me back on Imuran and see what happens, doing something rather than nothing works for me and if you're not being responsive because I haven't paid ALL my bills then .. figure out what's wrong so I can actually work ..

Her nurse apologized for the lack of communication =p
 
Hey Drew,

I hope that you are feeling better really soon. It is so friggin hard to be stuck in limbo for so long. Hang tough bud.
 
Top