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My Story

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dhelman

Hello everyone, my name is David Helman and I just wanted to introduce myself to this forum and tell a little bit of my story.

I am 29 years old and a software engineer in north carolina. In middle/high school I basically had an identity crisis where I was living between a nerd and a Jock. I am very 'hardcore' in everything that I do and I have always striven to be the best. I have lived on both sides of these personalities, from competing in video game tournaments for money, to wrestling and powerlifting. I finally settled down on being a mix of both.

I currently an am avid video and board gamer as this is who I always was, but I still try to stay in shape and workout as much as I can. During my wrestling days, I had an injury to my lower back which now leaves me with permanent back damage and chronic back pain. I still workout all the time, take healthy shakes, vitamins, l-glutamine and am generally a very healthy person. I don't smoke or drink and in the past I never went to the doctor. I started noticing some stomach issues 2 years ago. I had pain and other strange symptoms. I started going to the doctor to figure it out and they said nothing was wrong and I was super healthy.

The pain started getting worse and I noticed that I had problems when I tried some diet drinks and artificial sweeteners. The doctors diagnosed me with IBS and put me on a high fiber diet. Things got better for a bit, but then it all started. My father passed away, and my job became more stressful. At the same time, my mother started to show symptoms of Dementia or worse. This stress took a toll on my health and my marriage, which in turn made things worse. The high fiber diet started making me have intense pain, blood in the stool, weight loss, and extreme exhaustion. This put me in the ER and an eventual path to diagnose me with Crohn's last year.

Since getting out of the hospital a year ago, nothing has been the same. During flare ups I am on Budesonide and my normal maintenance medicine is Pentasa. I am tired all the time, even if I get 9 hours of sleep, I can barely force myself to go to the gym as everything is harder. I have lost weight and my life seems so much harder to do anything, my willpower is gone and it is hard to get up to go to work some days. I just changed jobs and bought a new house and I am living in a hotel and my wife can't be in the hotel with me because we have cats and they don't allow cats. The stress of all these changes triggered another flare up. I just recently got over it and am trying to get healthy again but it is so hard to eat or do anything.

I don't know how you people have been able to deal with this disease for 5, 10, or 15+ years. I have only had it for 1 and it has made my life miserable. My entire old way of life is gone and I am still trying to figure how to alter my lifestyle to have a happy life. I know it is cliche, but I feel like an old man. I have 2 chonic illnesses (back pain, and Crohn's) and to top it off, my family needs me to be the most stable one. My mother is losing her mind, my brother is going through a divorce, I just changed jobs, my wife is having our first child and stress triggers my flare ups. Ironic isn't it?

I have always been emotionally strong and stable, but this is getting to be too much to bear, I need to join these forums and a support group to help. I know my story isn't unique, and I know all of you must have similar stories, I just want to learn from your wisdom and experience because I don't know how it can be done on your own.

Thanks and hello everyone!

David
 
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Daisy123

I have had crohns for 30 years and you do get used to it. I don't know what it is to feel normal anymore, but generally I just accept it. Acceptance is important, it is a crap disease but there are worse illnesses. I have a full life generally, not good at the moment though, just because I have strictures which are painful buggers. It is early days for you, and I know it seems insurmountable at the moment but be kind to yourself, and I promise it does get better. Stress is bad for us but not avoidable some of the time. Try and focus on the positive. You are married with a child on the way, how exciting. Families are stressful but I always feel that a loving family is a blessing, even when things are difficult. I lost both my parents to cancer, and I still have moments of unbearable loss.
 
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dhelman

Thanks Daisy,

I know it will get 'easier' to deal with but I am still scared to death. If I am having this much trouble 1 year in, how am I supposed to live a happy life 10+ years from now? How can I be a good husband and father when I don't have the willpower to get out of bed because of cold shakes and pain/dizziness on some days, how can my friends and family understand what I am going through and not just think of me as someone who is 'weak' or 'complains alot'. They have no idea how hard it is.

I have always been a very optimistic person all my life, but right now, it is very hard to stay positive.
 
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Daisy123

David, you need to try a different treatment. Steriods and Pentsa are first line medications. I am on Imuran, and have been for four years, and in combination with Pentsa tends to keep it under control. Then there are the biologics, Remicade and Humira which have had good results. I also tend to stick to a low residue diet when I am in a flare. You are just not on the right medications. Then there is always surgery. I have had seven and am a bit ambivalent as generally I get ten years of reasonable health. The problem with having surgery is that crohns may well come back. Once you get it under control and back into remission you will feel much better. But be proactive with your care, tell your GI that the meds are not working and ask about alternative medications. I intend to go on Remicade after my next op as it has a 76% chance of keeping me in remission. And for all of us that have multiple flares, other people have one or two during their lifetimes. You need to get well enough to get back to the gym as exercise helps.
 
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dhelman

When you say 'under control' what do you mean?

Are you able to eat normal foods, go to the gym, have normal energy levels and willpower? What level of control do all these medicines give us?

David
 
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Daisy123

So what I am saying is that when you get the Crohn's under control, that is no pain, no urgency, no vomiting, which you should with the right medication, then you should be able to go about things as normal. All my issues are from losing too much bowel, rather than the illness itself. There are better medications than you are on which hopefully will bring you into remission.
 
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dhelman

Every person is so different, it is strange, but for me, I don't have as much intense pain as others are experiencing, and I don't really vomit either. I do have stomach pain and nasua, but they aren't that bad and I don't mind them as much. I guess I have a high pain tolerance, because I have dealt with chronic back pain for the past 10 years.

My main issue is how much dizziness, exhaustion and loss of appetite that get me. I can't believe how tired I am and the lack of motivation I have now. It is also really alarming that sometimes when I eat certain foods, I basically crash. I always used to drink whole milk when I was younger, but now it makes me feel horrible every-time I drink it. The same goes for fast food burgers, if I eat just 1, I feel dizzy, nauseated and fatigued and I have to go to the bathroom multiple times afterwords. It is an instant diet change, I can't drink coffee anymore either (I didn't really drink it before, but I really can't now).
 
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Daisy123

I wonder whether part of what is going on is depression. It might be worth considering a short course of antidepressants to help you feel better. The low energy and lack of motivation can also be symptoms of depression. You are having a tough time and it might be worth having a chat with your Dr. I have been on and off them for 30 years now, the last time when I was having a tough time at work. All I am saying they really helped me through tough times.
 
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dhelman

You know that never even occurred to me, but that does make sense. I have been under a lot of stress lately and I suppose it could be due to depression.

Thanks for the help and insight Daisy!

David
 
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