I'm living my life, to TRY to keep living?? That makes no sense.

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scm11478
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/20/2010 12:43 PM (GMT -7)   
Hi, I'm 31 years old now. I've been living with Crohns, since I was 18. I've been on so many meds at once, and stopped responding to most of them. I've even stopped responding to Remicade. SO i figure why risk the remicade, when it's useless. I've been on soo many pain meds, an became dependant on the BIG TIME. I was taking 80mg Oxycontines, along with 30mg Roxicodones, at the SAME time. After my colostomy, put on, then takin off, and after I went 'bad' again, and had to get an Illeostomy this time, and the scar tissue/remnants of fissures an fistulas, STILL gave me problems, I've allowed them to do a total colectomy. I'm 31, and will now have this bag the rest of my life. I'm A VERY vain person, so this is hard for me. Then to make matters worse, the total colectomy, dooming me to a permanent bag, didn't work. Even with NO intestinal tract, no sphincter, or anything else, to have active Crohns causing Fistulas, apparently the left overs, have stayed active, with me off ALL Crohns meds, (the doctors figured my immune system could use the break, since they removed my active Crohns, an then some), and now I have the WORST onset of traveling fistulas, i've EVER HAD. I FINALLY got off the pain meds, an switched to Suboxone, which STOPS the natural need/craving for opiates that I developed after years on them. The suboxone ALSO has a opiate in it, but it has a antagonist as well, so after 4 days of scheduled doses, the ceiling kicks in, an no euphoric high, and the pain is now 'tolerable'. It's come down to ANOTHER surgery tho. I'm sick with worry, about the fact i MIGHT have to take heavy duty narcotics again. I'm starting to dwell on the fact that my 'wild ways' have now left me w/out a wife, or child. That's bad, because I'm 31, and have had MORE fun living, than most people have at 51. I'm slowly growing out of my youth.. and this disease, is coming at me with EVERYTHING it's got.. I'm searching my heart for a 'reason' to do it anymore. I have NO child, or 'love' to 'fight this' for anymore, and i'm TIRED of it. The Prednisone has DESTROYED my body. Besides the angry roid rages it's caused, it has sapped my body of ALL calcium. I have the bones of a 55 yr old woman w/osteoparosis. I also worry about the future. With a illeostomy, and need for lots of meds.. WHAT will I do, if life as we know it, ceases to be. If a major war, or world changing natural disasterS, make society regress centuries back, and all order breaks down, then what do those of us who DEPEND on the system, for medical treatment, and a quality of life, what do we do. Would I have to arm myself, and take down a pharmacy or 10? I wonder about THIS, where most of you might think it's crazy, but MOST of you didn't have your home, and your LIFE washed away by the Gulf of Mexico, like I did, during Katrina. Remember the anarchy in the streets, an people neck deep in nasty water? Imagine that as you, if you have an illeostomy bag.. Definite risk of infection/horrible death. If low on meds, there's NO doctors, an no pharmacies to fill your needs the 'proper way', so yeah, I DO wonder about those 'crazy' scenarios.
I'm NOT really asking a question, needing a response to this, I'm JUST *****ing, or getting it off my chest, because NOT ONE person in my life, TRULY understands, or are capable of it. Thanks for your time, those of you who read this.

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 6/20/2010 1:33 PM (GMT -7)   
Wow....you really have been through the ringer.  I know there's nothing I can say to make it better, so I won't waste your time with that.  I guess I just wanted to say....shoot, I'm sorry?  Life does suck sometimes, and I think we all are allowed to get things off our chest. 

newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
Crohn's diagnosed 11/12/09
Cytomel and Levoxyl for thyroid.  Supplements for all else as per my ND.


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 6/20/2010 2:20 PM (GMT -7)   
 
Hello,
You have been through so much and it is obvious that you are hurting and wondering whether it is all worthwhile. I haven't any answers for you and I can hardly begin to imagine how much you are suffering. Life is about one day at a time, why worry about tomorrow today!
You are still young  and I believe that there is someone for everyone out there, you just haven't found that person yet.
Even 'healthy' people worry about crazy scenarios and they are not at all pleasant but you have to clear them from your mind. Life is for the living and that includes you :-) You have been dealt a bad set of cards but that doesn't mean that you cannot come out on top!
((((((((hugs)))))))

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/20/2010 6:36 PM (GMT -7)   
scm, sorry for everything you're going through.

All I can tell you is that when I'm feeling really bad, I get on the phone with people who will be encouraging and uplifting, and that is usually prayer lines. It really helps me.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8563
   Posted 6/20/2010 7:05 PM (GMT -7)   
Crikey.

All I can say is that, by a very different route, I myself this year have reached the same conclusion that you have; "I'm searching my heart for a 'reason' to do it anymore. I have NO child, or 'love' to 'fight this' for anymore, and i'm TIRED of it."

But your Crohn's has been way worse than mine. And I don't have any answers for that. I'm not surprised you feel the way you do. I really hope that there is a way out of this present misery. You could perhaps start looking for somebody to settle down with? Yeah, some women won't look past your ill health, but some will. And it's something to aim for, it's a reason to keep going... :-/

As for the future, I do sometimes worry about the system breaking down. Not strongly, but it does certainly cross my mind from time to time. I do not think it is an irrational fear, but I don't think it does any good to worry about it. For a start, civilisation will probably carry on for decades or centuries yet. It has survived two world wars, nuclear weapons, terrorism, a burgeoning global population, unstable financial markets and so on. It's so far been more resiliant than doom mongers have given it credit it for...

Once again, I am sorry. It sounds so futile when I put it like that, but I am sorry that you've had such a horrible case of Crohn's. Nobody deserves that. I hope that this is rock bottom and things get better.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/20/2010 7:18 PM (GMT -7)   
scm: gosh, it seems that you have been through more than most on this discussion board. All that you have been through would make the strongest of souls question one's purpose and sanity. I am soo sorry that you have had to go through so much, to me you sound very sad and lonely - unfortunately we don't live near you to bring you a cup of tea or help with daily chores in life - but please know that people care. And, those who stop, pause and respond are expressing caring as best we are able from afar.

And as for the future -there are never any guarantees in life. Many people who experienced the full range of Hurricane Katrina and its aftermath are often diagnosed with post traumatic stress syndrome. (PTSD) This complied with your medical history has hit you with a double punch and I would strongly encourage you to find a counselor to guide you through these painful events, to make sense, find meaning and give helpful guidance.

While the future is always uncertain - our elected officials have chosen directions that seem destructive to a majority of the population. Here is a chance for you to have a voice, make a difference, read and become educated on current events. For such a time as this you were born and this is your opportunity to be a difference maker. There are some great web sites that can facilitate your understanding - and programs such as constituting America (http://constitutingamerica.org/), (http://www.the912project.com/) or other volunteer projects can serve to help you find purpose, meaning and reasons for living. These can all be done from the ease of your home and when you feel well enough to participate. So for now, God speed -please feel treasured and loved. Barb
newby

Post Edited (grumpygi) : 6/20/2010 8:21:49 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/21/2010 6:33 AM (GMT -7)   
Welcome scm11478 to the Crohns Healing forum. Sorry to hear how rough you have it, and sure hope they get you feeling better soon. We have an Ostomy forum also, you might want to check it out too. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 6/21/2010 8:03 AM (GMT -7)   
scm, while what I have been through seems like nothing compared to what you've been through, I think it's pointless to worry as much as you are about what may happen in the future.  I used to always be concerned with the future, trying to predict what would happen and plan for it.  I was rarely right on what was going to happen and all that it got me was more illness...the stress of always worrying made my health much worse.  There is no point in worrying about things that you have no control over and things that may not happen.  It's always great to be somewhat prepared (people keeping emergency kits, having money set aside in case you get really sick, lose your job, etc.) but you only waste your life and make yourself sicker by worrying about everything.  It also makes life seem more negative and makes you have less to "live for" when you are always expecting the worse. 
 
Try talking to someone about it - find a local support group, counselor, psychiatrist, life or health coach, or someone off of this forum and work towards having a more positive outlook.  I'm NOT saying that you aren't justified in having a negative outlook, I'm just saying that all it does is make your life worse and you don't want to make things any harder for yourself.  It's difficult...I am often still way too negative, but I'm better than I used to be and my Crohn's has been so much better the last few years after I worked on improving my outlook on life and not worrying as much about things that I cannot control. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

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