Share Facebook
Crohn's Disease Forum » Your Story » Life threatening


07-04-2014, 07:17 PM   #1
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
Life threatening

Long story short, I am a 33 year old male. My life was fantastic and blessed. From scratch up I build my own business and was succesfullat it ,madť alot of money and had work that I loved. Also alot of love For my costumors and employees. My house is beautifull, I have great friends and a mother who is simple the best mother any sun could wish For.

But yet I want to be dead. Crohns disease has simple SaÔd destroyed my life. For two years plus in a row I have severe pain everyday. I am on very high dosage of painkillers, really extremely high. But no effect. IVe had radical ammounts of Remicade, Azathopirine and antibiotics to treat the disease withoute any positive effect. Besides the medicine I underwent 50 surgical procedures, placement of a stoma, drains and seton drains. Me my Family and friends searched For the best centra Europe has to offer but in four of the best they couldent help me. Actually the situation got worser. Now I also have a severe skin infectiehaard surrounding the sound, lower part of colon is inflamed AMD a damgerous bacteria.

There are two things I can do but both wont give me a guarantee For healling. 1. Resection of rectum and lower part colon with a permanent stoma. 2. Resection lower part colon with a gracillus flap to fill up the abces. Option 2 gaves a chance For the stoma to be removed.

For me the stoma is the worst thing ever I hate it and it doesnt allowe me to life my life how I like it. Also the gracillus flap will mutilatie my body because they will cut out a muscle (gracillus muscle) in my legg.
After 50 Operations I dont trust to get any better so right now I am concidering sewiside. The last 15 Operations I didnt do For me but For all those who love me and want me to stay allive. For me my biggest wish would be to be healthy but it see,'s that this is impossible. So I a, contactimg the coorporations that help people to make the last steps.
I have no depression and no disire to be dead but there are no possibilities For me. Some people think it is fine to live with stoma but For me it is hell.

Crohns desease has been in my life For 20 years now and I am 33. Probally IVe seen it all. But the amount of pain and the horribleness of this episode is hell.

Sorry For the negatieve post guys and girls...
07-04-2014, 09:15 PM   #2
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I know things seem horrible now and like nothing can work but you never know what great things lie in the near future. You may find the right dose or the right medication and you will be living relatively pain free and normal. There is even discussion about new technologies that may eventually eliminate ostomies even for those with permanent ones. We are in an shaving time with such scientific growth. Please don't give up hope that your suffering may be soon solved.
07-04-2014, 09:36 PM   #3
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
I know things seem horrible now and like nothing can work but you never know what great things lie in the near future. You may find the right dose or the right medication and you will be living relatively pain free and normal. There is even discussion about new technologies that may eventually eliminate ostomies even for those with permanent ones. We are in an shaving time with such scientific growth. Please don't give up hope that your suffering may be soon solved.
How can one eliminate ostomies when your rectum, anus AMD colon are removed?..
07-04-2014, 10:01 PM   #4
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
The article I had read was talking about a future of transplants.
07-04-2014, 10:34 PM   #5
worriedboy
Senior Member
 
Join Date: Mar 2011

My Support Groups:
have you thought about research programs ? like the ssi or some other nobel approaches ? you never know... maybe its worth trying
07-05-2014, 02:05 AM   #6
Daisy123
Senior Member
You have had a very tough time. I think you should see a counsellor to talk through your feelings. I know you say you are not depressed but I still think antidepressants might help you see things more clearly. I was suicidal when I had a temporary stoma many years ago, but now I wish I had kept it. Think about what your loss would do to your family, I know you are tired but you need to keep on fighting. I had a really rough time when I was young but now I have a great job, friends and social life.
07-05-2014, 03:03 AM   #7
lenny
Senior Member
 
Join Date: Jun 2014

My Support Groups:
I'm sorry you've had to suffer so much.
07-05-2014, 04:17 AM   #8
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
have you thought about research programs ? like the ssi or some other nobel approaches ? you never know... maybe its worth trying
Whats the ssi?
07-05-2014, 05:36 PM   #9
Jennifer
Adminstrator
 
Jennifer's Avatar
 
Join Date: Jan 2010
Location: California

My Support Groups:
Here's the link that talks about the Site Specific Immunomodulation/SSI trial: http://www.crohnsforum.com/showthread.php?t=60661

You still have options so please do not give up on life. Crohn's has many ups and downs but there's always a chance to get better even if it takes a long time to get there.

Afidz has also have many surgeries and even though they aren't stoma related she has and is still dealing with constant pain so she may be a good person to talk to about how hard this disease can really be.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-06-2014, 12:42 AM   #10
afidz
Super Moderator
 
afidz's Avatar
 
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
Like Jennifer said, I've been through a lot in the last few years. I only have one more chance to make it right. Pm me to talk. Our situations are different but they are also very similar. I'm sorry you have gone through so much, would love to talk is your willing
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
07-06-2014, 01:13 AM   #11
iriechic
Senior Member
 
iriechic's Avatar
 
Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
I am so sorry. You are not the only one who has felt like he/she has been through hell and back and hell again. I have felt horrible, too. We are similar age. Please don't give up. You are doing your best. You sound strong. Don't let the stupid disease win. Hold on, breathe, keep holding on. I know that sounds easier said than done! My mom is awesome too. Hang on for your great family and especially your mom.
07-06-2014, 03:38 AM   #12
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
You have had a very tough time. I think you should see a counsellor to talk through your feelings. I know you say you are not depressed but I still think antidepressants might help you see things more clearly. I was suicidal when I had a temporary stoma many years ago, but now I wish I had kept it. Think about what your loss would do to your family, I know you are tired but you need to keep on fighting. I had a really rough time when I was young but now I have a great job, friends and social life.
My stoma should also be temporary but iTS there For longer then a year now. They want to do a gracillus flap with resection of rectum. Then attach the colon to the anus to make a new rectum. And they use the gracillus muscle to fill up the fistula and abces. Its a 2 in 1 operation wich is horrible. After the 50 operations I already have had still there is an infection, fistula, abscess and since one month my whole rectum is also inflamed. To me it is unbelieveble that the situation only got worser instead of better after two years of treatment and surgery! Also they told me that in my situation ANY other patiŽnt already would have chosem For the removel of the rectum and permanent stoma. Afcouse this is not what they wisheid For but it is the result of everything they tried now. Withoute any good pukcode.
I am not going to do antidepressants iTS no good For your Brian. IVe seen a counselor and antidepressants in my situation are not likely to help. Also no signs of depression or other mental issues.
Everyday I have so much pain and discomfort this is no way of living. And a real Solutions For my problem is not at hand. ITS just happends to be that in life there are some problems with no solution. And I have one of those problems.
07-06-2014, 03:39 AM   #13
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
I am so sorry. You are not the only one who has felt like he/she has been through hell and back and hell again. I have felt horrible, too. We are similar age. Please don't give up. You are doing your best. You sound strong. Don't let the stupid disease win. Hold on, breathe, keep holding on. I know that sounds easier said than done! My mom is awesome too. Hang on for your great family and especially your mom.
Big respect For your mom and For you!
07-06-2014, 04:20 AM   #14
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
Here's the link that talks about the Site Specific Immunomodulation/SSI trial: http://www.crohnsforum.com/showthread.php?t=60661

You still have options so please do not give up on life. Crohn's has many ups and downs but there's always a chance to get better even if it takes a long time to get there.

Afidz has also have many surgeries and even though they aren't stoma related she has and is still dealing with constant pain so she may be a good person to talk to about how hard this disease can really be.
Thx For your post :-) I will pm her now! But the chances For me are so minimal.. :-(
07-10-2014, 01:35 PM   #15
Jennifer
Adminstrator
 
Jennifer's Avatar
 
Join Date: Jan 2010
Location: California

My Support Groups:
Flarkie it may also help to at least talk to other members on the forum who have a permanent stoma. I used to have the same views as you about having one when I first joined the forum but after getting to know other members who have one it's changed my views on getting one if it were needed to give me a better quality of life and to stay alive. Nyx was a great inspiration to me so feel free to ask everyone questions or at least share your concerns and fears and maybe they could help. http://www.crohnsforum.com/forumdisplay.php?f=46
Reply

Crohn's Disease Forum » Your Story » Life threatening
Thread Tools


All times are GMT -5. The time now is 07:44 AM.
Copyright 2006-2017 Crohnsforum.com