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A place to talk Support Group

cmack

Moderator
Staff member
Ron,

That will be me next. ;) All the fresh air makes me sleepy. I take it that the show was boring anyways. :)
 
Feel like I am in a bad flare right now.
I feel you! I am laying here in bed - hot and cold sweats, nausea, rhinos stampeding in my guts.. feeling you. I'm so sorry that you are feeling so ill. (At least the pain isn't so unbearable that hospital won't be required if I can help it) No one really seems to understand what this horrible disease actually does. Let's just call it 'Crohn's cancer', then people will actually get it. Cut us some slack. Provide some sympathy. Give me some positive vibes. But it's up to us and our close ones to spread the word. Let's not get my message twisted- we don't need to be cuddled up like babies. We are strong!! We just need the general population to understand. Not judge, or think that they know. We have the guts! We have the power. Even though right now it feels far from that. Tomorrow is a new day and I'll be rooting for you from all the way down here in Brisbane, Australia. Namaste
 

cmack

Moderator
Staff member
Welcome Red,


None of my family get it either. I hope you feel better soon. I know the pain and frustration.

We are strong or we wouldn't be here, this disease is a battle and defeat is not an option!


Regards,

cmack
 
What meds are you on Ron ? Are you currently being seen by your dr. . ....have you called him ?
Hope you feel better.
 
I feel you! I am laying here in bed - hot and cold sweats, nausea, rhinos stampeding in my guts.. feeling you. I'm so sorry that you are feeling so ill. (At least the pain isn't so unbearable that hospital won't be required if I can help it) No one really seems to understand what this horrible disease actually does. Let's just call it 'Crohn's cancer', then people will actually get it. Cut us some slack. Provide some sympathy. Give me some positive vibes. But it's up to us and our close ones to spread the word. Let's not get my message twisted- we don't need to be cuddled up like babies. We are strong!! We just need the general population to understand. Not judge, or think that they know. We have the guts! We have the power. Even though right now it feels far from that. Tomorrow is a new day and I'll be rooting for you from all the way down here in Brisbane, Australia. Namaste
Rooting for you too
 
Oh Ron I am so sorry. I feel you hun😢I wish I could be there to help. Call dr ok? I don't want to come home to find out you feel even worse. Thinking of you💜Jules
 

cmack

Moderator
Staff member
Ron,

Thank God he is frustrated, maybe they will listen to him. I'm about to put up a song I think you would like, maybe cheer you up a bit. ;)
 
Thanks. To answer a question from earlier, Gram214, I am currently on Humira, Colestipol, Imuran and Lialda directly for the Crohns Disease.
 
Ok so...... off I go to Tampa tomorrow. I will have my phone and I pad so I can keep in touch and as usual yaall can lift my spirits! Gotta get up at 430am yo vey!!! Let you know what happens tomorrow I think it's just one MRI enterography anyone know much about it? Am I gonna get sick from the stuff I have to drink? Ok enough abt me .everyone feel your best and. Talk soon💜Jules
 

cmack

Moderator
Staff member
Thank's buddy. I posted another song. It reminds me of myself. LOL. I hope you like it.
 
Juulez - don't worry at all about the MRI, it is no discomfort at all. You just have to drink a very small amount of contrast agent and then lay inside the magnet a few short minutes. They also give you medication to slow your bowels down a bit during the procedure so they can have a better look.

In fact this is an excellent test to help them have a detailed view of your WHOLE intestines. Very none invasive and and no radiation exposure at all. Much better than the old PET scan.
 

cmack

Moderator
Staff member
Hi Jane,

Are you feeling any better? I hope you feel improvement. I know you hurt, that's for sure.
 
Well....yea it's slow recovery for me. Amazing how much you use your abs and never knew. Even talking moves those cut muscles....wow. Getting ready to start PT so that's good.
 
I'm blessed with a great PT person Meg she is so knowledgeable. To deal with spinal cord issues and now intestinal surgery which is common I found out with the severely damaged spinal cord patients. Amazing how just rolling over in bed is so painful and there is a right way to do it who knew.
 
Hey guys anyone ever take pentasa they put me on until Entyvio. Wcan anyone tell me about this and there expierience with?
Julie
 
I have been taking Pentasa for over 20 years, now wondering if thats the cause of my headaches, i stopped it years ago due to fatigue and had the worst flare resulting in having a bowel resection. Told i was never to stop taking it again.
 
Ya I've started an excel spreadsheet with all my meds with a column on why I started or stopped and reactions because it's impossible to remember all the ones we end up taking. Just a thought might help others to do the same.
 

cmack

Moderator
Staff member
That is odd. You have mentioned that you are likely in a flare. Maybe that has something to do with it?
 
I'm home. Still not feeling great. Just waiting for Entyvio. How are yaall doing tonight I hope as good as can be for now. Missed talking ❤
 

cmack

Moderator
Staff member
Hey Julie,

That's great that you are home now. I hope you get your meds soon. It sounds like you are in the same boat as Ron with the entyvio. I hope you don't have to wait much longer. I'm OK, I have been outside working on the yard for the folks. They are grumpy as usual, so I just do my own thing and visit with you all. I hope you are on the mend girl.


Your bud,

cmack
 
Sorry Ron, stomach and brain fog is no fun...in there with ya pal. I get my next vedolizumab infusion tomorrow yea I was nervous with the surgery and all they'd put it on hold or something.

Juulez, glad you're out of the hospital and can get some rest. Lights and sounds and everything make it so hard to sleep well here.
 
Hi Ron ..any news on your Entivyo yet ? How are you holding up..still having problems ?
Hope everyone has had a better week than I have ,
 
I'm sorry Ron. But regardless of where you were your heart and soul were certainly in the right place ! I commend you..I have been very lax for a very long time as far as church . I have no legitimate excuse. I grew up in the church and somehow got away from it. ?.only the building though..not my faith. I'm feeling extremely guilty these days. Wondering if I'm being punished perhaps. Especially since losing my beloved Grandson a week ago tonight to a heroin overdose. My broken heart hurts far more than any of my other problems now.
Hope you feel better friend.
 

cmack

Moderator
Staff member
Hi Gram,

I'm so sorry to hear of your loss, that is just terrible. I don't think you were punished by God, nobody deserves that kind of pain. You can talk to me any time buddy, pm's are fine by me.


My sincere sympathy,

cmack
 
Thank you one and all. I will need all my strength to be there for my daughter. The memorial service is planned for the Saturday before Morhers day. It's just too horrible. If you all only knew how intelligent and special he was ! Satan is getting too many of our young people ! I'm afraid man can not stop this anymore... God and only he can win this war. When the time is right I suppose. 😪🙏🏻
 

cmack

Moderator
Staff member
I hope God wins. Bad people sell the drugs, probably because they don't have a job or something else to do.

I really feel for you.
 
I've really lost it these days. Past a job interview (had to take some amphetamines before just to keep my eyes open.
About to start work on monday.
Probably will have to turn down the job, they of course don't know I'm sick.

I suffer from debilitating physical and psychological fatigue. Afraid to drive and just too tired to get out the house.

Doctors so far in public clinics have not given me any anti anxiety meds or any uppers which I really need to even function at 50%.

Have a wife and son I can't support. And no quality of life to speak of.
 
This has been going on for many years now and I feel hope slipping away.
This daily torture breaking me down and
definitely not mentally stable anymore and feeling suicidal.
I'm basically fucked.

I made a list of my options. If all else fails.

1. Overdose fentanyl patches. Or Nembutal poisoning.
2. Gunshot to head
3. Helium exit bag.

Top Tracks – Hillsong Worship:

http://www.youtube.com/watch?v=nQWFzMvCfLE&list=PLrNnEvIvbWOcgSptISY9mH4sloXFa4USM
 
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Find therapist fast! Or go to hospital! I know what this feels like I've been there! Get help before something happens that you might regret later. You are worth so much to so many even if it doesn't feel like it! Hugs!!!!! ❤
 
This has been going on for many years now and I feel hope slipping away.

This daily torture breaking me down and

definitely not mentally stable anymore and feeling suicidal.

I'm basically fucked.



I made a list of my options. If all else fails.



1. Overdose fentanyl patches. Or Nembutal poisoning.

2. Gunshot to head

3. Helium exit bag.



Top Tracks – Hillsong Worship:



http://www.youtube.com/watch?v=nQWFzMvCfLE&list=PLrNnEvIvbWOcgSptISY9mH4sloXFa4USM


Hey, I've been where you're at. It seems like there's no end but the ultimate end. But it's not truth. I did end up in rehab and then surgery and more surgery. Funny thing is life got better. I'm working on my masters in marriage and family therapy. I've gone to overdosing with 90% kidney failure to a future therapist. I'm having to take a break because of a recent surgery. The only way I got better was to seek help. Everyone needs help. Reach out. God's there and then follow his lead. Find a marriage and family therapist. They think systemically, meaning they'll not just look at your depression but include your health, job, pain, and medications. I haven't been on here too much because of surgery and pain. I opened this for a reason. It's you. Go get some help. We care about you.
 

cmack

Moderator
Staff member
Hi Glocklola,

Please consider what your demise would do to your family. If you hang in there things WILL get better. Amphetamines can cause erratic thoughts and behavior. I care about you buddy,you need to talk to a therapist. You can pm me buddy, we can talk about things in the meantime. Please try to stay rational.


Your friend who truly cares,

cmack
 
Please...I just lost my young Grandson to a drug overdose. The pain I'm going through right now I would not wish on my worst enemy. Do you even realize how your loved ones would feel ?
I know you must feel very very beaten down by your health issues. I pray the something changes for you very soon...you need to have faith. I truly feel for you.
 
Please yes seek help. Life will get better, it takes so much work and time but it does. Your family will never be the same. Change in medication can help so much.
 

cmack

Moderator
Staff member
Hi Julie

You made it that far, I think you may as well be looked at. I hope you get the help you need. Keep in touch buddy. I'll be back and forth from the garden so I'll be checking on here.
 
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