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Crohn's Disease Forum » Support Forum » Vent Away » Feeling like it's never going to end-makes me want to give up more and more


10-30-2015, 09:25 AM   #1
BigBoss
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Join Date: Jan 2014
Location: los angeles area
Feeling like it's never going to end-makes me want to give up more and more

So, Quick rundown, I was diagnosed with CD in 2012, flare started in 2011 but was clueless. By the time my CD was discovered (thought to be appendicitis) during the exploratory surgery, they wanted to remove 2 ft of my small intestine. We wanted to try and see if meds would work/help. In hindsight, we shoulda resectioned at that time, fast forward, nothing worked over the next 3 1/2 yrs, so now, not only did i have completely destroyed 2 ft of the last portion of the small intestine, but I had to fistulas, 1 from the small intestine to the bladder, and the other from the small intestine to the colon. Had surgery finally on sep 21, '15. Very successful surgery, I am still recovering, but quite well, and quite fast, compared to what was anticipated. But about a week ago, the fistula I have had, which I forgot about, cuz it was almost dormant due to the prior conditions. Forgot to mention, I have Perianal disease as well, having fistulas since the age of 13, I am about to turn 37yrs old,(male).
So now that I am eating much more, and the food is properly traveling through the digestive system, has poroceeded to "wake up" this fistula, and lets just say the pain associated with this awakening is like no other pain I have experienced with having a fistula, except for maybe when I was 13 and my first fistual, which was an abscess first, cuz I was so embarrassed about talking about this tennis ball sized abscess on my butt cheek, once it was lanced, it was a fistula. Anyway, I am awaiting to have a Seton placement procedure on the 6th of November '15. But prior to making this appointment, the surgeon, who has been a god send, told me that I had a 30% chance of having to wear a bag for the rest of my life, that is if we cant fix it with a seton and remicade treatment. Even if it does work, just because my crohns is so lovely and has to be an aggressive and severe form that likes to fistulize, it sounds like, no matter what, I will end up with a bag at some point in my life, could be 10 or 20yrs from now, but still, this is something I am having an extremely hard time accepting. I know I should not worry about this till "the time" comes, but, it's been so trying dealing with everything, that I feel like I am going through all this shit for no reason.
I dunno, I just feel so lonely, cuz noone in my life can really relate, which in turn makes it so difficult to talk to friends, at least the ones who seem to show an interest in concern. But when talking to any friends, or neighbors, or loved ones, everyone seems to say the things that are definitely out of love and concern, but obviously they just don't get what its like, and it almost makes it seem worse or magnifies the feeling of being alone in my own fucked up twilight zone episode. I am confident that seton will be successful, but for how long til i get another fistula, or til I have another flare up or til whatever the next thing that my CD wants to throw my way.
Before I had this severely aggressive crohn's flare up, I was extremely active, and loved to eat everything, and now even if I want to be active, I find it hard to do anything cuz I am so extremely lacking the energy and or motivation, and I am fearful of having to run to the bathroom constantly, or you name it... so many things that make it hard...
Honestly, especially as of late, I wish I did not have so much debt,and that my family was not so dependent on me both paying my debts and repaying the debts to them, as they helped me to get my own business going, cuz there are so many things that I get upset over, or that really frustrate me, and I think alot of it has to do with all the above explained relating to my condition. I feel sometimes that I am just fighting on for my family, cuz I have really been asking myself, like, what is the point. If this fucking disease is going to keep destroying my body slowly but surely, and limit my ability to participate in the aspects of life that I most appreciated and most enjoyed, than is it really fair to call it "living"? is it even fair to call it surviving... It is more of existing in my opinion. I dont feel like I am able to go an create an active social life, whether it's with my current group of friends or trying to go out and socialize to look for new connections, and I don't even consider dating. I was shy before, and somewhat introverted, but now... forget about it. I hate my life, I hate life, I hate this disease, I hate to eat, I hate to go to the bathroom, I absolutely hate how bad my BM's smell and when I pass gas it's just as bad if not worse, I hate watching other people do all these things so care free....I think resent is the word I may associate with my feelings toward that freedom that others have. Then theres the whole pain and discomfort that has been associated with "my" CD, and if it were not for the dr/surgeon I found, who actually listened, and more than anything HE "HEARD" what I was saying, and has helped me to feel tremendiously better through the most recent surgery, which allowed me to greatly reduce my intake of pain medication, But just having to deal with other doctors and getting pain meds, is enough for me to say fuck it. All these dr's who "know" better, and through "THEIR EXPERIENCE" they know what the better route or alternative route is going to be... and if you even try to say, "well, is it possible, that I may not fit the "normal" mold or that my case may be different in terms of what has worked in "your experience", its like they shut down, and are only open to what "they know" works, which is rediculous especially when it comes to crohn's. Anyway I just felt like I had to get this off my chest, and I wanted to thank anyone who took the time to read my run on sentenced rant. It is much appreciated.
10-30-2015, 01:49 PM   #2
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
I understand your feelings of resentment.

I feel for you man.

*hugs*
10-30-2015, 04:09 PM   #3
fuzzy butterfly
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Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi bigboss. So sorry you are going through all this. You have had a rough time. I will say that surgery helped me tremendously. Had a resection on small bowel and a tempory ileostomy for a year. If i needed to have another one at some point i would not hesitate, even if it was to be permenent.I have felt good since, my life got back on track when i got the bag. Yes they can seem daunting the bags but really the freedom they can give you is amazing. No more bathroom dashes every 5mins. You can do pretty much anything you want too while you have one. Hopefuly you may not need one but please consider the benefits if it does occur in the future. I personaly loved my stoma n bag coz for me it saved my life as by the point i got it was nearly ready to slit my throat cz of the pain n other issues you mentioned. Now im well, just got a new job life is good again. Hope is all we have so please dont give it up, as things can get better . Sending love support n best wishes.
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