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gringo43

gringo43

Joined
Jul 14, 2010
Messages
689
Hi. I'm 51 and was diagnosed with crohn's 06/2006 after a severe GI bleed. Needed five transfusions before they got it stopped. Put on short course of pred and Pentassa for maintenance after about a ten day hospital stay.

To be honest I really didn't take this disease seriously...I'd had heart attacks,pacemakers, back surgery,COPD, knee surgeries, meningitis...hope you see my point. I always just dealt with stuff as it came up and moved on. Refused to be limited by an illness. So much for my best thinking. Needless to say, Mr. Crohn's had other plans.

Fastforward to 06/2010 after a relatively mild four years of flare/remission I found myself in the hospital bleeding seriously again..another four transfusions..lots of steroids and antibiotics..budesonide as an added medicine along with plenty of vitamins. Discharge diagnosis was Moderate to severe crohn's.

Long story short..I'm sitting here hurting{have plenty of pain meds} whining because nothing seems to be working. Still bloating,cramping , and in pain. The big D has never really been a problem. I guess because for now the crohn's seems to be only in the right and transverse colon. They suspect it is in the small intestine but not sure. Since I got out of the hospital in June I've had near constant pain...more than I've ever experienced from the crohn's. It now seems to have spread into my rectum...what a pain in the ass...pun intended. Things have gotten worse not better...damn disease sucks.

I'm scheduled for a CT scan wednesday and Gastro docs friday. They have already done all blood work...TB test..xrays...and depending on CT scan will be discussing aza and or one of the biologics if tests show I can take them. They did tell me they may want to do another scope before starting new meds. I think it depends on what the CT shows.

Anywayyyy...that's my story. I do want to say I've been lurking here since I got out of the hospital and you folks are ....simply put...AMAZING. I've never used a forum before and I hope this post wasn't too long..thanks for taking the time to read this and I hope I'll be able to contribute something positive.

Jerry
 
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Welcome to the forum Jerry.

I am the king of long posts, so until you get more wordy than me, I think you are doing fine.

The CT scan should help clarify everything. It is an amazing tool that really helped my diagnosis.

Let us know what they find out. I hope it turns out OK.

Dan
 
I have logged in several times to this website, but joined it today... I already feel welcomed and finally with people who understand what I say...

I am currently on Pred and on friday I am too, scheduled for a Gastro, Colono & Ileo scopes all together... I have already passed 9 yrs with CD & gone through a lot of medications... it might be time for surgery in my case...

I am afraid most of us go the same road, embrace the fact that you are still subject to 5-ASA, they might work good for you, and might give you a push for remission.

I wish you the best of luck this week! We both have an interesting week ahead!!
 
Hi Jerry,
You sure have been through quite a bit! Wanted to say good luck on your colonoscopy on Weds, and your Fri apt! And best wishes! You have def found a wonderful forum full of awesome ppl who really understand and care. :)
 
Hi Jerry Welcome! :bigwave: I know how you feel but right now my Crohns for the most part is at bay cause I know what I can take, and in between gi's and appts. I don't bleed so I cant help you there, but most likely you could have it in the Ileum, popular spot there. Remicade seems to help alot of people, so maybe that is your drug. If that isnt working they may look into surgery which could be a big help. I know about other surgeries, I am healthy just have had other problems not related to Crohns and I hate surgery more than I realize, so I avoid it to but then again..... pain sucks, relief is our main goal.

Yes, we have an amazing community and we fight to keep it that way. This is a place where people should feel comfortable to talk or vent or laugh, goodness knows we all need help from time to time. I have seen your posts and so far, you have done justice here as well, so glad you joined us!!!! :welcome:!
 
Hi Jerry
and welcome

so sorry you're in a lot of pain right now, it certainly sucks!
Once the CT scan reveals something, hopefully then you'll get approved a biologic, like Remicade or Humira, we have clubs/threads on these, with lots of success stories.
Glad you found us, welcome aboard!
lotsa luv
Joan xxx
 
What a welcome!

I feel like I know several of you and catch myself feeling playful...hmmm...thinking I made the right choice to step out here....My mind is racing with all the posts I've read on here..I wish all of you could see the smile/grin dancing in my heart...Damn..it feels good to find a place to be me...and not worry about having said too much or been too reticent about details...you are truly amazing people...

I'm still trying to sort out how to respond...every reply...all as a whole...forgive me if I screw up during this learning process and know each and every reply has been appreciated more than you know...Damn....feels fun...thanks!

Cruxy and Pen I hope if surgery turns out to be the best option ... it provides the relief I believe we all are looking for..

Dan and Girlygirl...thank you again for the warm welcome.

Joan...you don't know me...but your brand of humor...well...leaves me looking for the next fix...lmao....still roflmao...been a while...thanks

Just feel a need to tell you all how much I'm smiling typing this..it's been a long summer!

Jerry
 
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BTW I keep forgetting to say I LOVE your avatar...looks like me in the morning lol!!! Dont worry you are doing fine here, just when I got the hang of things here, they go and change it on me :yfaint: :lol:. Smiling is allowed ;)
 
Pen I'm not sure where I kidnapped the little guy from....hope whoever created him is forgiving if they come to collect him..
 
Welcome to the forum, Jerry! We may not be able to help with your physical ailments but just having a place to commiserate, share your stories and laugh while reading some of the funny threads may go a long way toward your recovery!

Good luck with your upcoming tests.

- Amy
 
Welcome Jerry,

I recently join this forum and couldn't agree with you more about what a great place this is.

Good luck with all the "wonderful" test you are going to have this week, I had them all about 5 weeks ago. That is when my doctor decided it was time to try Remicade, which I started a week ago. I was very scared, it was a comfort to read all the postings in the Remicade Club on here. I'm very hopeful it will work for me.

You'll be in my prayers and thoughts.......:rosette2:

:getwell::hug:
 
Hi Jerry and :welcome:

Aha!!! one of my sparring partners from word association. :lol2:

It's good to meet you Jerry and I'm glad you have found your way here. Sorry to hear about all the crap you are going through. Wishing you all the luck in the world with your upcoming tests and appointment and I hope things turn out for you....................

:goodluck::goodluck::goodluck:

Welcome aboard!

Take care, :)
Dusty
 
Jerry-

Welcome to the forum. I have recently joined the forum myself and it has proven to me that laughter and good people make a world of difference in how I feel and the things that are OK to share. TOP NOTCH FORUM!!!! Happy to have you here.

Hang Tough
 
Dusty

DustyKat said:
Hi Jerry and :welcome:

Aha!!! one of my sparring partners from word association. :lol2:

It's good to meet you Jerry and I'm glad you have found your way here. Sorry to hear about all the crap you are going through. Wishing you all the luck in the world with your upcoming tests and appointment and I hope things turn out for you....................

:goodluck::goodluck::goodluck:

Welcome aboard!

Take care, :)
Dusty
Click to expand...

No way I'm gettin' between you and Desky....you folks would just chew me up and spit me out...:}

Jerry
 
No way I'm gettin' between you and Desky....you folks would just chew me up and spit me out...:}
Click to expand...

LMAO!!! All you have to remember Jerry is he's the nasty one and I'm the nice one. ;)

Dusty. :)
 
welcome~! sorry to hear your going through so much pain. i certainly can relate to that. the docs just seem to wanna dope me up on pain meds, which doesn't solve the problems. i think you'll grow to love this place. everyone here is so helpful and supportive. keep us updated on how youre doing.
 
xoxava said:
welcome~! sorry to hear your going through so much pain. i certainly can relate to that. the docs just seem to wanna dope me up on pain meds, which doesn't solve the problems. i think you'll grow to love this place. everyone here is so helpful and supportive. keep us updated on how youre doing.
Click to expand...

Thanks....I know you've been going through your own rough patch...no fun...hope they will get you on the road to remission soon.

In my case ..I'm lucky to have a PCP and GI that leave pain meds up to me...they know I'm hyper alert to covering up symptoms and won't leave me in pain waiting on complete answers...some people just have to hurt...seems soooo cruel.

Good luck to you again and wishes for positive change headed your way!

Jerry
 
Hiya Jerry

I'm happy if you're laughing! it's the best medicine alright!
keep smiling!
xxxxx
 
Astra101 said:
Hiya Jerry

I'm happy if you're laughing! it's the best medicine alright!
keep smiling!
xxxxx
Click to expand...

Thanks Joan....just got home from CT scan and more lab work today. I'll know how things turned out friday...hope you're doing better with ole ugly Mr. Pred....know you'll be glad when you can give him the boot again.

Sending good vibes your way!

Jerry
 
Hope all goes well tomorrow (wait, time difference, so in 2 days... hehe)

your a character and a comedian! it's so good to be able to come to a place where there's NO competition of who's sicker then who, and we're not judged and can rant and rave and say poop, fart and vomit, without people going 'ewwww'

Good Luck with everything and keep us posted :)
 
Good luck with your appointment tomorrow Jerry!!! Keep us posted!!!

:goodluck::goodluck::goodluck:

Dusty. :):):)
 
Thanks to all of you!!

I gotta get off of here and try to get some sleep...someone inside this damn body of mine is probably gonna have to make some decisions tomorrow...{sure as hell hope it's not me}..:ybatty:

Jerry
 
Welcome Jerry....who the hell is desky...sounds like some book-worm nerd to me!!!

Good luck today!!!
 
Update....azathiprine

The GI doc decided to put me on Azathioprine friday.....still haven't started it because I haven't felt real well...and because for the first time in my life I'm scared of a damn pill....

Doc told me I'm definately TPMT deficient and there is a much higher chance of serious side effects....did some reading about TPMT...shouldn't have done that!....scared the crap otta me. He still wants me to try a 50mg dose and check labs once a week for a month..I see him again in two weeks if this damn medicine doesn't make me sick...I HATE this damn disease.

We discussed Remicade and he told me because of my medical history he didn't want to go there unless we run out of other options. I guess I'll start the Aza after dinner tonight and hope for the best.

Meanwhile back at the funny farm....I guess I'll just keep poppin' pain meds and try to convince myself he knows what he's talkin' about...jeez...frappin' disease....thanks for listening!

Jerry

...forgot to mention the daily Rowasa enema he also added...the fun never stops
 
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Hey Jerry, I know what you mean about alot of pill popping. In 1992 when I had all these problems I was on 26 pills a day! :eek: and still ended up with surgery.

Aza, helps many and some are great on it for many years. But like I always say we are all like snowflakes...no two are exactly alike. Who knows for how long...those darn snowflakes melt too fast lol.

I found when I was on a new drug I usually on was on that drug to see how it reacts. Been on everything now, just waiting to see if Cimzia ever comes to light here and see if it is worth trying after failed Remicade and Humira... oh joy oh bliss..
 
Pen said:
Hey Jerry, I know what you mean about alot of pill popping. In 1992 when I had all these problems I was on 26 pills a day! :eek: and still ended up with surgery.

Aza, helps many and some are great on it for many years. But like I always say we are all like snowflakes...no two are exactly alike. Who knows for how long...those darn snowflakes melt too fast lol.

I found when I was on a new drug I usually on was on that drug to see how it reacts. Been on everything now, just waiting to see if Cimzia ever comes to light here and see if it is worth trying after failed Remicade and Humira... oh joy oh bliss..
Click to expand...

Hi Pen
Hope you're about done with your pred taper....know it's no fun...I know what you mean about this diseas...one of those that just keeps on giving{and taking}...hope you're having a good day!

Jerry
 
Yes, I am done with Pred tomorrow but flaring and spastic colon on the left is getting bothersome, but tolerable. Still waiting for a new Gi appt, but our system here is very slow. Strange how we have to live with some discomfort. Some are doing well but I have tons of meds here, just hate what they do.

Glad you are eating with AZA, is helps to drink alot of water to , to flush your liver and other places too. Keep us posted on how you do :smile:
 
Oh Jerry I hope the Imuran works for you. It scared the crap out of me when Roo was prescribed it but in her case it has had no side effects and has helped to keep her in remission for 4 years. Best of luck mate!

:goodluck:

Take care, :)
Dusty
 
Thanks Pen and Dusty

Guess I'm just gonna take the damn stuff...even with the deficient TPMT levels and hope the doc knows what he's doin'.....still scares the crap out of me.

Jerry
 
Just make sure they keep on top of your blood work Jerry. If your liver enzymes go haywire, they'll catch it soon enough. Good luck!!
 
Thanks Mark

Yep...they've got labs scheduled every friday for a month....see the doc on the second friday...guess they've got it covered...feel like someone dropped me off in the woods to hunt bears with a bb gun in my shorts....sound scared to you?....lol..hope you folks had a good day with EJ.

Jerry
 
Jerry,

I hope it works for you, I got pancreatitis and put in the hospital from it. I got a very high fever and horrible weakness, just watch careful for side effects.

:goodluck::goodluck:
 
Dexky said:
Have you seen this thread Jerry?

http://www.crohnsforum.com/showthread.php?t=12599

Some had bad experiences, but not all!! It's recent so all the posters are still around for advice!

PS: EJ's doing great!!! Thanks!!
Click to expand...

Thanks Mark....been reading the heck outta the link...never really been scared of much in my life that affected just me....this is a new feeling and I'm not liking it alot...

I can't imagine what parents like you and Dusty go through in deciding these things for your children....you guys are truly inspiring in the courage you show the rest of us...thanks again!

Jerry
 
Jerry,

I didn't take it very long, within 2 weeks I started to get a fever and pain in my upper left side, under my ribs, a couple hours after taking a dose in the morning. The fever and weakness would start to go away in the afternoon, I'd take another dose, and it came back. I started to make the connection, doc said keep taking it, then pain became unbearable and I went to the ER, funny thing is no one would tell me what pancreatitis was?? I googled it when I got home......ewwww!

Good luck hope it works, I just had my second Remicade and I'm see very slow improvement. I'm so sick of hurting, wish it would hurry up and work!!

:goodluck:
 
lseibert said:
Jerry,

I didn't take it very long, within 2 weeks I started to get a fever and pain in my upper left side, under my ribs, a couple hours after taking a dose in the morning. The fever and weakness would start to go away in the afternoon, I'd take another dose, and it came back. I started to make the connection, doc said keep taking it, then pain became unbearable and I went to the ER, funny thing is no one would tell me what pancreatitis was?? I googled it when I got home......ewwww!

Good luck hope it works, I just had my second Remicade and I'm see very slow improvement. I'm so sick of hurting, wish it would hurry up and work!!

:goodluck:
Click to expand...

I hope the Remicade works for you Linda...I do know what you mean about the pain...I'ts been making me a little crazy! ...good luck and hope you feel better soon.

Jerry
 
Hey Jerry-
If you are going to get pancreatitis, it usually happens with in 3 weeks, and you are never to take Imuran or 6 mp again. I took 6MP for about 3-4 years when my blood counts started to drop. I ended up getting 3 blood transfusions within a 6 week time. (2 units each time) They did the genetics test on me and found that I could only take half the does that was recommended. So after I was off the 6MP for about 4-6 weeks, they started me on Imuran at half the recommended dose and I had no issues at all.

You Dr. seems to be on top of doing the labs/testing. If it is causing any issues with pancreatitis, the blood work will show. Amylase (the pancreatic enzyme responsible for digesting carbohydrates) is the most common blood test for acute pancreatitis. It increases from 2 to 12 hours after the beginning of symptoms and peaks at 12 to 72 hours. It may rise to 5 to 10 times the normal level and will usually return to normal within a week. Amylase also may be monitored with chronic pancreatitis, it will often be moderately elevated until the cells that produce it are destroyed.

http://www.labtestsonline.org/understanding/conditions/pancreatitis-3.html

Hope all goes well and it gives you some much deserved and needed relief.

Keep smiling when ya can, and hang tough
Brindle
 
Brindle said:
Hey Jerry-
If you are going to get pancreatitis, it usually happens with in 3 weeks, and you are never to take Imuran or 6 mp again. I took 6MP for about 3-4 years when my blood counts started to drop. I ended up getting 3 blood transfusions within a 6 week time. (2 units each time) They did the genetics test on me and found that I could only take half the does that was recommended. So after I was off the 6MP for about 4-6 weeks, they started me on Imuran at half the recommended dose and I had no issues at all.

You Dr. seems to be on top of doing the labs/testing. If it is causing any issues with pancreatitis, the blood work will show. Amylase (the pancreatic enzyme responsible for digesting carbohydrates) is the most common blood test for acute pancreatitis. It increases from 2 to 12 hours after the beginning of symptoms and peaks at 12 to 72 hours. It may rise to 5 to 10 times the normal level and will usually return to normal within a week. Amylase also may be monitored with chronic pancreatitis, it will often be moderately elevated until the cells that produce it are destroyed.

http://www.labtestsonline.org/understanding/conditions/pancreatitis-3.html

Hope all goes well and it gives you some much deserved and needed relief.

Keep smiling when ya can, and hang tough
Brindle
Click to expand...

Thanks Brindle...i appreciate the infor info...hope you're doing well now...it's strange how i've had many surgeries,disease processes and the at 51 the one I never took serious is the one scaring the hell outta me...really more so the meds scare me...thanks again for your response.

Jerry
 
AWWW Gringo, I really feel for you! :(

I have a phobia to medications, kind of not a good disease to have when you have that phobia (we won't get into the needle phobia's etc etc LOL)

I really wish you luck and I'm sure if we think positively and somewhat rationally, a doctor wouldn't prescribe us anything they would think would make us sick or harm us MORE then our disease is already.

I really wish you luck and let us know how you go <3
 

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