Worn Down (Mini Rant)

[Angee]

I guess I need to vent for a min with others that know what I am feeling.
For the past few weeks I feel so worn down, It is a effort to get out of bed (when I do sleep) I went to my GI for a few things, first I have not slept more then four hours a night for over a month, So I ask Him if there is anything he can do to help me, He Says---(don't take naps) but offers no other help, I WISH I could nap, but I just cant sleep, So its not helping matters any, I have no energy, It is a effort just to eat. Not that it hurts to eat, It just sometimes feels like its to much effort, I have been having mini flares. I told the GI, that I have bad pinching and cramping about where they reconnected everything from my last surgery, He did a colonoscopy and said that its narrowing there but not enough for surgery yet, He says there is some inflammation there, But offers no other help...I am on 6mp but I think its giving up on me, He wont put me on remicade, He feels that is a very last resort, well I don't understand how much I have to hurt before it becomes "last" resort with him, I get this burning in my stomach ALL the time, it comes in waves, about every ten min or so, and it feels like someone is setting my stomach on fire, it lasts for a few min then goes away. He says he doesn't think its the Crohns, So he gives me Zantac, Been taking it over a month now and it does nothing for it, Yet I only get the burning when I am flaring...I live in a pretty small town, and with my insurance there are only two GI's here I can go to, Him and one other one, but the other one has been sued for malpractice a few times, so I feel mine is the better of two evils. He doesn't believe in giving meds for pain with Crohns, He feels the 6mp should work, the only way I got him to give me something for the pain a few months back was I threatened him I would go home and start eating ibuprofen by the handfuls ( I know not a good thing to take) until the pain went away, and he kinda freaked and wrote a prescription for "6" Darvecet. because 6 is supposed to cure all :ybatty: So anyway, thanks everyone for letting me vent, and if anyone has any suggestions please feel free.

 

[Peaches]

awww (HUGS) Angee!!! Is there *any* way for you to travel within an hour's time to a bigger place (maybe a teaching hospital) that would give you access to better GI's? It may be super worth the drive. My twin lives about 2 hours East of me here in NC in the STICKS. She tried a GI close to her and he sucked!! So - she has made an appointment to set up with my GI - even though that means she will have to drive a bit over 2 hours to see her.

If my doc saw activity in my gut (which mine almost always shows up at my resection site) she'd have me on steroids to get it calmed back down. What is he waiting for with the Remi?? Is he waiting for you to need another stinking surgery?? I've been on Remi for over 6 years and it has worked wonders fo rme - not perfect - but MUCH better than I was before. Good luck - I hope you feel better soon!

 

[Nyx]

How close is the nearest GI, maybe in another city? Sounds like this clown doesn't want to help you at all! Sorry to hear that....it's hard enough having to suffer through this damn disease, but having a doctor that won't help just compounds it.

Hope it gets better for you..

 

[Angee]

Thanks everyone. I had a GI that is 3 hours away from where I am now, And I LOVED him, he seem to always understand what was going on, and always willing to try different things to help, He suggested the Remicade back a year ago, But I was flaring really bad then and with all the tests I was having to drive there once a week, that is 6 hours round trip once a week and it was taking to much out of me so I switched to this GI and From the very first visit i knoew I would NOT like him, He made me feel like I had no clue what I was talking about when it came to how I felt or what I was going through, He does not seem to understand that after having this disease for almost 5 years now I kinda know whats going on inside my body, My husband and myself have been talking about me going back to my old GI, but like I said, 6 hours round trip is hard on me and gas, But I really feel like if something does not happen soon, I will end up back under the knife again and I have already had 3 surgeries from this, I am not looking forward to a forth.

 

[Angee]

Hello Angee!

What you are going through sounds so frustrating!! I am on Imuran, just started, but already feeling the sleep disturbances and lethargy! Xanax helps me get some quality sleep!

Your GI ---------Hmmmmmm, he sounds rather unenlightened as far as IBD goes! Is there a way you could see another Doc in a different town???

This disease is so difficult....and having excellent medical treatment and support makes all the difference!

Good luck hun! xxx

I asked him about something like Xanax or some other sleeping aide and he told me that he would rather I get sleep naturally....But I am getting so tired and exhausted that I find myself getting snappy with my kids and husband and that is NOT good.

 

[Peaches]

You need to switch!! This guy isn't good for you! Were the tests you were doing blood tests? I live 45 minutes away from my doc and they fax in blood tests to a blood draw place that is 2 minutes from me. Obviously I have to do scopes and stuff up there - but easy stuff like blood draws they may be able to do "remotely" in your area. I'd figure it out - you need to be able to hold on to your gut as long as you can - no reason to set yourself up for needing a surgery if you can avoid it. See if you can go to your GP for the sleeping pills......

 

[Angee]

You need to switch!! This guy isn't good for you! Were the tests you were doing blood tests? I live 45 minutes away from my doc and they fax in blood tests to a blood draw place that is 2 minutes from me. Obviously I have to do scopes and stuff up there - but easy stuff like blood draws they may be able to do "remotely" in your area. I'd figure it out - you need to be able to hold on to your gut as long as you can - no reason to set yourself up for needing a surgery if you can avoid it. See if you can go to your GP for the sleeping pills......

the blood test I was able to do here and them fax the results, but everytime I turned around there was xrays, ct scans, stool sample tests, and colonoscopy so I was having to go there for those, but like I was saying, its getting to the point that my health is demanding I travel there, I mean mashed potatoes make my stomach hurt so thats saying alot.

 

[shazamataz]

It is so HARD being heard sometimes with this disease!!! So sorry you are having such a bad time. I totally relate on the sleep thing - I sleep so badly it's no wonder I feel so worn out.
My GP is generally very helpful but when I was there last week I said my sleep was a disaster and the pills she had given me weren't really working and all she said was 'best stop taking them then.'
I was too tired to remember to ask for anything else as also had other things to discuss in the stupid 15 minutes you only get. So now I still have sleep issues but no help!!! URGH!!

 

[Astra]

hiya Angee
yes I agree with what others have said too,
feel cross too
go easy on the Ibuprofen hun, that's worrying me a bit, I believe it's why I ended up in A&E last month, I was hammering it
Hope you feel better soon

 

[Tan]

OMG Angee your GI sounds like a real tool.. he obviously has no bed side manner or knows how to deal with people as he is treating you like crap. I agree that in the best interest of your health and sanity be best to go back to your old GI even if it does mean driving hours. Can you possible do the CT scans, xrays etc in your home town but just have the colonoscopy procedures in the other town?? At least that way you might not have to travel all the time just for the major things.
I can totally relate to being rundown I too feel like this at the moment everything just seems too hard and eating my god its the last thing on my mind everytime I try to eat just can't stomach anything and start to gag.. I know it will only last until I start to feel better but I hate not eating as I know its not doing me any good. I also get hearthurn and burning in my stomach but I seem to find the somac works well however do notice when Im not feeling good that it tends to get worse.
I really hope you can get back to your old GI and start to get on top of it all as it doesn't sound like you are getting very far with the one you have at present. Good luck with the sleeping issue hopefully you can get some good sleeping tablets I did while I was on pred and they work magic with helping me sleep, I also tried natural sleeping tablets which did seem to help a bit but not nearly as well as the prescription ones. Also have you spoken to your chemist cause they may have an over the counter brand you can try?

 

[farm]

Hey Angee,
I'm sorry you are having such a hard time. Sometimes there is no such thing as "natural sleep" and I believe it would suite you well to find a GI who understands that. Chronic fatigue AND insomnia go along with Crohns, but sometimes it's hard to find a GI who will help treat that as a symptom.
I hope you find an answer soon. Everyone deserves to sleep well.