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View Full Version : Life Update on my Crohn's journey


Gracie Dean
06-02-2010, 01:54 PM
Next summer (or sooner if the need arises) I could be losing part of my colon. This is in part scary for me but at the same time, if it made me feel better and took away this constant pain I have, I would welcome it and say lets do it tomorrow.

Part of the complication is that I can not take the "standard" meds that have been proven to help others ie asachol or asephex type of meds.

I have been taking Chemo, but even that is not proving to be as responsive as the doc would like. (additionally, this last go made me sick for 4 days) He wants to go a full year and see how I respond, but he is thinking that I have a stubborn disease that is fighting to keep going no matter how hard we fight to get rid of it.

Starting tomorrow, I am keeping a diary with every little thing to account...restroom issues, fatigue, pain, stress, stressors, everything about my life onto a spread sheet...


Thank you all for your prayers and well wishes. Please continue to keep them coming. I have truly felt the envelope of prayer this last year!

Detoxing
06-02-2010, 02:00 PM
Holy fuck dude, that sucks. GL to you my friend.

Gracie Dean
06-02-2010, 02:30 PM
Holy **** dude, that sucks. GL to you my friend.

Thanks. All the prayers here have truly helped.

I get pancreatitis when I take all the standard meds that have helped others. I should have died back in November.

This has been a long uphill battle that I can think all the CP prayers for helping!

kc rush
06-02-2010, 03:01 PM
Sorry to hear it. One of my best friends has Crohns and had to have his entire colon removed. The thing was so bad that it actually burst while they were removing it.

While he has to wear a colostomy bag now, his quality of life is much better, and the pain he had had has gone away.

This sucks, but it is probably for the best considering all that you have gone through.

Good luck to you. Prayers sent your direction.

seclark
06-02-2010, 03:03 PM
i had a colon resection a few years back, pam. couldn't believe how much better i felt after it was taken out. they did it in the morning, and that afternoon i was taking short walks around the floor. don't remember it, but they said i was walking. morphine's a helluva drug. hell, i think i was posting here the next day. morphine's a helluva drug. i went home after a couple days. only problem was slight withdrawal. morphine's a helluva drug.

seriously...good luck.
sec

ChiTown
06-02-2010, 03:06 PM
Pam,

You have our prayers. Best of luck

Gracie Dean
06-02-2010, 03:07 PM
i had a colon resection a few years back, pam. couldn't believe how much better i felt after it was taken out. they did it in the morning, and that afternoon i was taking short walks around the floor. don't remember it, but they said i was walking. morphine's a helluva drug. hell, i think i was posting here the next day. morphine's a helluva drug. i went home after a couple days. only problem was slight withdrawal. morphine's a helluva drug.

seriously...good luck.
sec

What was the recection for? Did you have to wear a bag? If the doc said it would greatly help, I would say do it tomorrow. I am so tired of this disease. I am ready for drastic measures!

RJ
06-02-2010, 03:09 PM
Pam, best of luck to you. Damn GI issues are a pain in the ass, pun only partially intended. Hopefully you'll feel as good afterward as sec.

By the way, don't say anything, but I think sec is still on the morphine. shhhh....

Otter
06-02-2010, 03:10 PM
Hang in there Pam

seclark
06-02-2010, 03:14 PM
What was the recection for? Did you have to wear a bag? If the doc said it would greatly help, I would say do it tomorrow. I am so tired of this disease. I am ready for drastic measures!

diverticulitis took about a third of it. didn't need a shit-bag for mine, but i never told the wife until right before they wheeled me in. made me feel better knowing that she would change it for me if i did have to have one. made her feel better finding out she wasn't going to have to.

again, good luck.
sec

irishjayhawk
06-02-2010, 03:15 PM
I had part of my small bowel taken out. Best move I made. Hopefully, same for you.

seclark
06-02-2010, 03:17 PM
By the way, don't say anything, but I think sec is still on the morphine. shhhh....

spent a month on it one time...:drool:
sec

Gracie Dean
06-02-2010, 03:27 PM
I am allergic to Morphine. I have to take Diludid (sp) wonder if it is the same effectiveness?

seclark
06-02-2010, 03:36 PM
I am allergic to Morphine. I have to take Diludid (sp) wonder if it is the same effectiveness?

couldn't tell you that. all i know is every 5 minutes i was pushing on that pain button. i tried taping it down once, just in case i'd forget.

seriously, the worst part of the whole thing was when they pulled the drainage tube out of my side. you should do fine.

sec

Gracie Dean
06-02-2010, 04:14 PM
thanks. Not so freaked out now!

bevischief
06-02-2010, 04:47 PM
What about Mayo clinic for a 2nd opinion?

kchero
06-02-2010, 04:55 PM
Yea I have dealt with some patients that have required an colostomy or ileostomy and it is hard for them to come to terms with having that kind of procedure done, but once they realize the quality of life gained it seems like a very logical choice.

seclark
06-02-2010, 05:41 PM
thanks. Not so freaked out now!

i'm sorry....it wasn't that bad. i'm just the kind of guy that's not going to sit and watch "price is right", while i'm laying in a hospital. i'm polite w/the doc's, nurses, staff. if i aint working, and i'm already laying in a hospital, i might as well have a decent buzz. call me a pu$$y or whatever. can't do anything, anyways. they don't bring you beer.

you'll make it fine.
sec

bevischief
06-02-2010, 05:55 PM
Yea I have dealt with some patients that have required an colostomy or ileostomy and it is hard for them to come to terms with having that kind of procedure done, but once they realize the quality of life gained it seems like a very logical choice.

But you can't go back once done.

seclark
06-02-2010, 06:20 PM
But you can't go back once done.

not sure about that. i knew a guy that wore a bag for almost a year, then got something done so he didn't have to wear one. this was a long time ago. bet they can do a lot more now.

sec

BIG_DADDY
06-02-2010, 06:32 PM
Wow Pam, I had no idea. I will keep you in my prayers and hang in there.

Gracie Dean
06-02-2010, 07:17 PM
Wow Pam, I had no idea. I will keep you in my prayers and hang in there.

Thanks BD. It has been a hell of a year for sure!

bevischief
06-02-2010, 08:14 PM
push for Mayo!

Gracie Dean
06-02-2010, 08:20 PM
push for Mayo!

Have had experience with Mayo, don't think they could tell me anything new and then I will be stuck with a new 5 grand bill for all the tests they would want that my insurance wouldn't cover

Gracie Dean
06-03-2010, 09:14 AM
Started a new steroid today Entocort...with the Chemo. He wants me to take it for 2 months to see what it does. Side effects could be: Headaches, Pimples, hair loss (already have that with the Chemo)

Almost seems the side effects are worse

spe725
06-03-2010, 11:22 AM
Have you ever tried The Maker's Diet by Jordan Rubin? My wife has Crohn's but thankfully it's a mild case. The diet has helped her to manage it very well. We know others that have severe cases, some it has worked for, others it hasn't. I'd recommend looking into it if you haven't already. Hope all goes well for you.

Gracie Dean
06-03-2010, 11:26 AM
Have you ever tried The Maker's Diet by Jordan Rubin? My wife has Crohn's but thankfully it's a mild case. The diet has helped her to manage it very well. We know others that have severe cases, some it has worked for, others it hasn't. I'd recommend looking into it if you haven't already. Hope all goes well for you.

thanks. will look into it

bevischief
06-03-2010, 12:18 PM
not sure about that. i knew a guy that wore a bag for almost a year, then got something done so he didn't have to wear one. this was a long time ago. bet they can do a lot more now.

sec

Transplants.

Dave Lane
06-03-2010, 12:27 PM
Good luck Pam. This is why I'm so glad the raiders drafted McClain

seclark
06-03-2010, 12:38 PM
Transplants.

really? like a part of a colon?
sec

Gracie Dean
06-03-2010, 12:45 PM
really? like a part of a colon?
sec

How about just some PVC piping or something

Gracie Dean
06-03-2010, 07:34 PM
Have you ever tried The Maker's Diet by Jordan Rubin? My wife has Crohn's but thankfully it's a mild case. The diet has helped her to manage it very well. We know others that have severe cases, some it has worked for, others it hasn't. I'd recommend looking into it if you haven't already. Hope all goes well for you.

When you say mild, what do you mean, symptom wise ..if it is not too personal.

irishjayhawk
06-03-2010, 08:09 PM
When you say mild, what do you mean, symptom wise ..if it is not too personal.

I have a mild case (symptomatically) and it included (before Remicade):

Abdominal pain
Excessive bathroom visits (3-5 in a day)
Loss of weight (went from 160 to 138 in like a month)

What may bump me up from a mild case to a medium case was a Stricture formation (which I just had surgery to remove).

spe725
06-03-2010, 08:47 PM
When you say mild, what do you mean, symptom wise ..if it is not too personal.

Her flare-ups have been mainly restricted to abdominal pain and they don't leave much scar tissue according to the x-rays. She was in the hospital for about a week 3 times in 3 years, but after following the diet (and now a modified version of the diet) she hasn't had a major flare-up for 5 years.

teedubya
06-03-2010, 08:54 PM
I think everyone should give Pam positive rep everyday... she really loves rep and it could help her feel better. :-)

Gracie Dean
06-03-2010, 09:36 PM
I think everyone should give Pam positive rep everyday... she really loves rep and it could help her feel better. :-)

I think oh never mind

MadMax
06-03-2010, 09:57 PM
I think oh never mind



Good luck Pam, and so sorry about the pain you go through. I wish you the best and pray everything turns out good.

luv
06-03-2010, 10:00 PM
I think oh never mind

Probably a smart edit.

Gracie Dean
06-03-2010, 10:04 PM
I think everyone should give Pam positive rep everyday... she really loves rep and it could help her feel better. :-)

Actually dear...the prayers help me feel better !

Gracie Dean
06-03-2010, 11:12 PM
I have a mild case (symptomatically) and it included (before Remicade):

Abdominal pain
Excessive bathroom visits (3-5 in a day)
Loss of weight (went from 160 to 138 in like a month)

What may bump me up from a mild case to a medium case was a Stricture formation (which I just had surgery to remove).

and how are you post surgery?

Ebolapox
06-04-2010, 12:16 AM
damn, pam. sorry to hear it, though it sounds like you're in a decent place as far as everything goes. our thoughts/good mojo are headed your way.

Phobia
06-04-2010, 04:27 AM
I remember when you died in 2005 so I'm hoping this setback isn't quite as bad as that was. Best wishes, Pam. We'll throw up some prayer for you and your family.

irishjayhawk
06-04-2010, 09:15 AM
and how are you post surgery?

Much, much better. Mostly due to surgery but probably also due to Remicade's effectiveness for me.

That said, I'll be having an oscopy in August to see if it's actually doing anything other than masking symptoms.

I was on Imuran prior to it and it ended up that my metabolism was chewing them so fast I couldn't' get on a dose that would be therapeutic. So, two years of nothing, not even masking.

Gracie Dean
06-04-2010, 11:25 AM
I remember when you died in 2005 so I'm hoping this setback isn't quite as bad as that was. Best wishes, Pam. We'll throw up some prayer for you and your family.

That was scary for sure, but it was finally fixable.

this is something totally different. Much more painful. It is amazing the pain your gut could cause

Gracie Dean
06-04-2010, 11:25 AM
Much, much better. Mostly due to surgery but probably also due to Remicade's effectiveness for me.

That said, I'll be having an oscopy in August to see if it's actually doing anything other than masking symptoms.

I was on Imuran prior to it and it ended up that my metabolism was chewing them so fast I couldn't' get on a dose that would be therapeutic. So, two years of nothing, not even masking.

That sounds promising! Thank you

bevischief
06-04-2010, 11:34 AM
That was scary for sure, but it was finally fixable.

this is something totally different. Much more painful. It is amazing the pain your gut could cause

Have they checked your abdomen muscles? The doctor thought my wife was having a flare-up and ended up that she had spastic nerves were firing off pain for no reason. About 6 weeks of follow-up with a pain management, doing shots at the point of pain.

Gracie Dean
06-04-2010, 01:10 PM
Have they checked your abdomen muscles? The doctor thought my wife was having a flare-up and ended up that she had spastic nerves were firing off pain for no reason. About 6 weeks of follow-up with a pain management, doing shots at the point of pain.

no, I can not remember anyone mentioning this at all. I will bring it up to my GI doc