Giving Up

[LiveForever]

I've had anal problems for almost a full year. I had two setons, an abscess and a fistula, and more vicodin than I can even count. I've had my academic and social life fall apart before my very eyes. The pain just doesn't go away, ever, and I have no faith that it will. Now I am back at college after a semester-long absence, and after trying to make a fresh start, my anal fistula started acting up again and the pain has become unbearable. Goodbye, fraternity life. Goodbye, academics. Hello misery.

I'm through with trying to battle this disease. Crohn's has drained me of all the happiness I have. It has taken my soul and torn it apart. Crohn's has quite simply defeated me. And the worst part is, I'm too embarassed to explain to everyone my problem.

I'm sorry for all the people who have to deal with this disease. It's a living hell. I wouldn't wish it on my worst enemy. For all of you people who remain optimistic that you can fight this disease, I commend you. But sadly, I don't believe I can find any more energy to fight my own disease.

 

[D Bergy]

You have a very long time to live with this disease, so you giving up is not an option.

It likely will only be only one of many difficult things you have to deal with, and it may not be the worst thing you run into. When you finally get control of it, and I am confident you can, you will realize that you have more ability to resolve difficult problems than you think.

It will take effort and personal experimentation and a little luck, but I have no doubt you can do it. You learn from each failure and move closer to a solution with slow but sure progress. It is not easy, but worthwhile things are rarely easy.

What have you done so far, as far as treatment is concerned, and what, if any result have you had from the treatments? The process of finding a solution is often a process of eliminating what does not work, so you are probably part way there already. If you are not improving, you simply have not found what you need to do yet.

I have dealt with far more difficult diseases than Crohn's, and have not been defeated yet. I have lost battles, but not the war. If an average, middle aged blue collar guy can figure these things out, so can you. Never accept defeat.

Dan

 

[kenny]

Yep, I lost my career, not just a job, and am wondering how I will pay my mortgage next month. But all you have to do is fight one battle at a time. One piece at a time.

Its rough accepting that things have changed but we all just might as well recognize that now and get on with life. I keep a food diary of everything I eat and a calorie count. I put a lot of effort into watching and tracking what is happening with me and that gives me INFO. You can not make responsible decisions if you do not have the info to work with. It is the only way I can fight this thing and I am going to win! Dan has, I will, and so will you.

 

[DMS]

Hi LiveForever, welcome, I am new to this forum as well, but it has lots of good advice, and a place to vent and feel like you're not alone.

My 15 year old son has perianal crohn's and like you has had constant pain, abscess and fistula since March of this year, he was diagnosed in July after his colonoscopy/endoscopy (which by the way didn't show anything).
He also didn't want to talk to any of his friends about what was happening to him but after a couple of months told about 4 or 5 of his really close friends - that has helped him alot, they have also been the ones to phone him and be the encouragement he needs to stay connected with friends.

There are definitely drugs that you can try to get the abscess/fistula problem under control - specifically Imuran or azathioprine or Remicade, they both have a fairly good track record. Another one you could see if your GI will recommend is Tacrolimus ointment (Prograf) these are things that may or may not work, but if you google clinical trials, there is definitely information on these.

At the moment we are trying hyperbaric oxygen therapy to heal the abscess and fistula, my son is also on LDN. Ldn does not have a lot of clinical studies but the people that had fistulas in the study that was done experienced healing.
LDN is also an endorphin booster and might be worth looking into for that reason also. We have decided not to go with the azathioprine at this time as it has a side effect of lymphatic cancer in adolescent males - just couldn't do that to my son, especially when he has no other problems with his Crohn's at the moment - but, it might be the thing that works for you.
I will start a new thread on our experience with hyperbaric - it's going really well.

Like Kenny said food diaries are great, SCD is working really well for us, but is not for everyone.

It sucks for you (and for my son) that life has changed so much - but you'll get through it, people care for you and do not want you to give up.

Good luck in school this year, move forward and try not to worry about what ISN"T happening, focus on the positive.

 

[farm]

You have a very long time to live with this disease, so you giving up is not an option.

D man said it best.

 

[Sparky]

oh, honey, you sound so sad Other have said it better - giving up is not an option. Wallow a bit, allow yourself to feel sad, mourn for what you thought life was going to be like - and then give yourself a gentle slap, dust yourself off and get going.

It sucks sometimes (a lot of the time for some), but the alternative is surely worse x

 

[LiveForever]

Well its been several weeks since I posted here, so I guess Ill give everyone an update of whats been happening with my life.

The anal pain hasn't gotten much better, at all. I went to my GI a few weeks ago who is happy with my progress, but due to my intense cynicism I find it hard to believe that things are actually improving. It's hard to believe that there actually is an end in sight.

I also started school. I only signed up for 2 classes, but it's been hard to keep up with them. I've done alright in my classes so far, but it has been very difficult to work. The pain gets in the way of my focus.

In spite of my Crohn's, I've become great with women. A few weeks ago I managed to meet a hot girl in one of my classes, and took her and her roommate to a fraternity event. She was smart and we had a lot of fun together. I was starting to feel happy again, and I thought that this girl could possibly become my girlfriend.

I decided to ask her out a few days later, only to be rejected. She said, "I don't want to send the wrong message because I'm still talking to my ex." Ouch. It still hurts to this day. She's been ignoring me ever since. It really feels bad because she actually helped me take my mind off my pain, and now that she's gone I find myself focusing more and more on the pain.

Even worse than this is that my fraternity has gone to hell. In chapter, everyone is constantly arguing and yelling at one another. Our sorority relations are abysmal: we only have around 2-3 socials for the entire semester, while some other frats have at least one a week. Most sororities don't even know we exist, it sucks. I wanna meet girls really bad, but my frat just isn't getting it done. I'm beginning to regret joining this particular fraternity. I might not even go active next semester.

My entire life I've been a follower, but I went to college to become a leader. And while I'm certain that I can truly become an alpha male, it's hard to believe that I will ever be happy. The fact is, I'm not getting anything out of my classes, fraternity, or daily routine. And I blame my constant ennui on this stupid disease. It takes hard work to build a truly great life, but this Crohn's has severely diminished my drive to work. In other words, I feel that this disease has made me unhappy and lazy.

I realize how bitter and negative I sound right now. It might sound like a contradiction for me to say that I am a truly positive person, but trust me, I am. I truly believe have all the confidence and skills I need to make it in this world. But I'm having a REALLY HARD TIME TRYING TO FIND THE MOTIVATION TO IMPROVE MY LIFE.

Essentially I'm having a lousy time at college right now, I'm too bummed to do anything about it, and remission seems light-years away. I blame my perpetual apathy on this lousy disease.

 

[shazamataz]

Hi liveforever

Sorry to hear you are still so down. This disease certainly sucks and is very scary (well, for me anyway) because you never know what's coming.

I guess we just have to get on with it though - is there any other choice?

I've had a rough couple of weeks emotionally trying to cope with the recent diagnosis and even got so far as wishing I wasn't here anymore, but I had to keep reminding myself that I AM here and so have to make the best of it.

I feel emotionally much better now, though still struggling. I try to focus on what I CAN do as opposed to what I can;t do which I find helpful.

Perhaps look at it as life throwing you a really BIG lesson which you can use to grow amazingly as a person? It's the hard stuff that ultimately makes us better people I think.

Don;t focus to much on the frat stuff and girl stuff. It will sort itself in time. Focusing on YOU is most important right now.

Shaz

 

[Guest]

hi LF, a warm (if belated) welcome the forum!

you know when you hear people say they wish they knew back then what they know now? well, i don't know if this is going to help you, but if anything i say makes even the slightest difference to your outlook, then it's worth me saying....

you're obviously a young person... i'm in my 40's. but i was young once, struggling with the pain and other effects of Crohn's whilst trying desperately to hang onto my dreams of the life i wanted. i went through the gritted-teeth determination of "it's not going to beat me... i am going to carry on regardless".. but that became impossible. so i withdrew, from my friends, my closest 24/7 acquaintance was the pain, and the miserable thoughts it brought. alongside all this was the insistence from my family GP that there was nothing wrong with me apart from my active imagination, and unfortunately he convinced my family of that, for a long time (years). so i was alone with it all.

i am also an optimistic person, a fighter, perfectionist by nature.. been called stubborn more than once lol, but during those years any optimism i showed was put on, false. i did manage to keep some sort of a social life, albeit much reduced, and i did try my best to join in with family things... but every day, every event was spoilt by the Crohn's, and more often than not, no-one saw past the fixed smile on my face.

i guess what i'm trying to say is... we just don't realise how our futures can change. maybe our future isn't going to be on the path we wanted it, but it sure doesn't have to stay as bleak and as painful as is it at these very bad points in our lives. 20+ years on i have kids growing up, i have a wonderful partner, great friends... i go out for meals, for drinks, to gigs, i run around looking after my mum and everyone, i keep my home running, and i'm working part-time too. it's not always easy, i still have some active Crohn's, and i have other health issues too.. but it's a life, and it's a good one, on the whole. probably a million miles from the life i envisaged when i was your age - but i'm happy.

we change as we get older, our important goalposts shift... there comes a realisation that we don't actually NEED to change the essential us, ie seeing yourself as a follower and wishing to become a leader, being popular with girls... the most important goalpost, in my view, in life is to accept you as you are, and like yourself for who you are. from that comes confidence, and you will get through what you have to.

one day you will look back on this time and be in a better state of health, and mind.... help is out there. it took surgery to get me over the worst of my Crohn's, maybe that will be your turning point too, or maybe treatment will be... but you will get past this. just focus on that... and find the fight to demand the right investigations from the right people... keep on making appointments with your GP and your consultant.. make sure they know exactly how much it hurts, how much it's affecting your life, and tell them how despondent and depressed you are. even if you need to go on an antidepressant for a while - it doesn't matter, just find the help you need to get through this patch.

we're all behind you here, and we understand.