HealingWell
Search Close Search
☰

just venting

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/15/2011 2:24 AM (GMT 0)

I had my appointment last week with my GP, my gastro, and surgeon...I've been having trouble the last 6 months or so...constant pain, weakness, etc, etc, blah blah blah...so my gastro and surgeon want me to have everything left removed and I won't so they've written me off, or in their words...'either have the surgery or get your affairs in order'...After they left my GP wrote me a script for a vial of morphine and told me "I wouldn't go out the way your going to go"...ok fine, I have my stuff in order and to be honest, cant believe that death is all that bad.  I hurt constantly, and if and when I eat the pain is cosmic...have meds for pain, but none really touch it.  Ok, can deal with pain, have since I was 6 years old...so that's 40 years....I'm good with that...the last couple of weeks, I've been passing out...no warning, no nothing, just the usual epic pain and then black til I come too.  They (my illustrious docs) assume that it's my bodys way of reacting to the pain level...too many nerve endings firing all at once so it just shuts down.  Ok, I can't figure a way of working around that...all my life I've 'dealt' with this DD as best I could...this part is new and bothersome.

my parents dropped me off at the hospital when I was 11 when my insides first ruptured, and came and got me 6 months later when they were told I'd made it through...most all my surgeries have been solo affairs and that's ok...my ex wife lasted for 7 surgeries, a fiance, 3  I've done it pretty much alone and still do, so I'm not really good at 'sharing' my emotions.  The passing out stuff has me concerned...do you suppose 'they' are right? and if so...what was the point? I mean I'm not a bad guy, but my ENTIRE life has been ruled by this. I don't know...just venting and wondering aloud.  Not a religious guy by any stretch, but if there is a higher power or whatever...I'm going to punch him in the mouth..I figure he owes me that much...headed to bed here...so very very tired.

(by the way...haven't filled the morphine script...IF its going to get me...IT has to do it...I won't)

Posted 4/15/2011 2:58 AM (GMT 0)
Where there is Life there is always Hope! Illigitimus no carborundum... Dont let the Bas---ds get you down.
kisses and good wishes
H
Posted 4/15/2011 3:12 AM (GMT 0)
I was very concerned when I read your post - concerned about your state of mind. Then I read the last part -
"(by the way...haven't filled the morphine script...IF its going to get me...IT has to do it...I won't)"

That's how I feel about all my medical problems. I'm not giving up.

In regards to your blacking out. Have you considered that it is something other than your pain causing these episodes? Could it be a neurological condition? Could it be something like dehydration? Just because your surgeon and GI "think" the episodes are pain related, doesn't mean they are. Have you ever considered a pain management specialist?

Sorry for all the questions. I know you are were hurt by them and are hurting now. Hang in there....
Posted 4/15/2011 12:21 PM (GMT 0)
No worries, my state of mind is pretty positive :)  I was thinking last night, and I've had Crohns since age 6, so I really don't have any memories of life with out it.  Like I said, pain has always been a companion, and I have gotten used to it and can pretty much ignore it until it gets too the point where it demands attention, but the passing out has me...I can't ignore it and just push through.  I did have tests done, cat scan and an mri...both showed normal brain activity...blood work showed normal electrolyte and passable nutrition levels. 

I guess I just needed to let someone out there know whats going on...I really don't have anyone close I can talk about this stuff with (not that I'm big on talking about it...most of my life was spent trying to hide my crohns from the world)

anyway...headed to work...thanks for listening

Posted 4/15/2011 1:43 PM (GMT 0)
Wow, Frosty, you are very brave. I wish I could be more like that at times. Thanks for sharing and hope the passing out stops for you, best wishes,
Betty
Posted 4/15/2011 2:05 PM (GMT 0)
Hi Frosty. I had bouts where I passed out for about two years. Docs were convinced it was crohns related . Just when I was about to give up because I was fed up with test after test, my pcp did a test called a calcium score. Long story short this led to a heart doctor and bypass surgery . I had blockage on the left main coronary artery for so long that the heart was doing its own bypass through the tissue around the blockage. Sometimes doctors fixate on one illness and you have to keep asking until they look elsewhere . Hope you find out something soon.....
Posted 4/15/2011 10:46 PM (GMT 0)
Wow I can't even imagine and I have lived my whole life around this DD (Mom had it and I was undiagnosed at 13ish). Have you considered (maybe you have already done this, but maybe try again), going to Mayo or Cleveland. From everything posted here they don't seem to let any option or body part go un-discussed. They seem to be the best of the best.

Like Sniper said it could be something that no one is looking at and just. You know a can't see the forest for the trees thing.
Posted 4/15/2011 11:27 PM (GMT 0)
I know you said you are not a religious person. I just wanted to add that through Him and Prayer that is the only thing that has gotten me through this horrible experience for the last 10 years. I am so sorry for what you have been through. It would probably help if you would talk to a minister or priest. You don't really have to believe in anything just to talk. You are a very strong person but doing it alone is never fun. I tend to keep my feelings in as well and this causes more stress. So the doctors are advising you to remove the rest of your intestines? I really didn't understand from your post. Would this leave your skin open? You will be in my thoughts and prayers.
Posted 4/15/2011 11:44 PM (GMT 0)
Frosty You were one of the first to leave a message for me when I signed on here last month.. I shows you are a caring person. Please if you need someone to talk to Im on here alot. It would be my pleasure to be friends. I know I could learn alot about this ailment from you. Just let me know when you are around.
Hugs and kisses
H
Posted 4/15/2011 11:56 PM (GMT 0)
Yeah...the higher power and prayer route and I had a split in '95 when I had 11 surgeries over seven months...there was a time then that I couldn't get out of ICU with out another surgery...have one, and scartissue would close off intestines...have another, and a day or so later, another, same reason...a few weeks go by...they're thinking maybe I'm ok...nope...had another...danced to this tune for seven months...one of the surgeons at that time was the cutest little brunette...couldn't have weighed 100 pounds, she said she straddled my chest during surgery and couldnt pull intestines apart...she did the last 6 or 7 of the surgeries that summer...me and my guts aged that poor girl 20 years...she had to be around my age at the time, I was 31...she didn't dare leave the hospital...slept in my room for the longest time...she quit surgery after my guts finally started working and stayed that way...went into pediatric medicine.  Always felt bad for her. 

But hey, if it works for you...fantastic.

Never made the trip to mayo...been to boston, burlington and hanover (dartmouth)

Was in a clinical trial when I was little sponsored by the docs at mayo...turned my skin a really cool orange color, just like a pumpkin...think I was 9 or 10 then...didn't help the crohns but it was cool.

and finally, if the passing out is something else, I don't want to know...the guts are supposed to get me soon enough, really don't want to have to worry about heart, head, or anything else. :)

Posted 4/16/2011 12:01 AM (GMT 0)
And Heather1959...can always use another friend, but I may not be a good example of how this DD works...I'm kinda rare, one of the lucky 3 to 7% who never respond to meds...I may scare you more than help you and wouldn't ever want to do that...really never had a good experience as far as crohns is concerned...lived through a lot, but it was hell
Posted 4/16/2011 1:31 AM (GMT 0)
Fear Not I dont frighten easily! Come to the Crohns Room Next Thursday! We are going to start meeting from 6 til 9 on Thursday. I think you are more inspirational than scarry!
This is all new to me.. I was bullet proof unitl last July when the Perirectal Abscess popped up.. then fistula in Aug/Sept.. then the second one in Nov/Dec. Jan/Feb the pain in my side and diarrhea started... At least the surgeon I had was clever and after that he started suspecting what was really going on. Some folk go so long and thru so many Dr befor someone figures out what is happening to them. Its just a miserable disease.. and of course misery loves company! So here we all are! Its a honor and pleasure to get to know you Frosty!
Posted 4/16/2011 1:39 AM (GMT 0)
Ok...I will try...:)
Posted 4/16/2011 3:44 PM (GMT 0)
FrostyinVT I am so sorry to hear of your struggles. You got one crappy plate to deal with. I know you are not a praying person, but I hope you don't mind if those of us who are keep you in our prayers. I sure hope someone figures out whats going on and causing the fainting. I hear you on not wanting to hear something else is wrong. I have had this darn disease for almost 36 yrs myself, and the list of my diagnoses keeps growing and I don't like it either. Good luck!
Posted 4/16/2011 5:24 PM (GMT 0)
I don't mind...but don't link yourself too tight to me...It may bring you unwanted attention from fate or what ever is running this show :)
✚ New Topic ✚ Reply