Always been hesitant to take part in a Crohn's community, but here it goes...

[jonlaughing]

Hello there I'm Jon.

My whole life I have tried to be as independent and self sufficient as possible and it served me quite well until my Crohn's symptoms started showing up. I have been trying to deal with all of this mainly on my own for the past several years and while my parents are mostly helpful and my Girlfriend has been nothing but amazing, I still have a very hard time relying on them and can't help but feel that letting them help me or posting on a place like this is me being weak and whining. I know this isn't true but it is something that a struggle with. By posting here I hope to take a step in the right direction when it comes to showing a bit of humility and sharing with you. So here it goes...

Halfway through my grade 11 year in high school (or junior for you Americans as I'm Canadian) I started getting stomach pains. I just thought I had a stomach flu or something at first but as the pain got worse and a month passed it was clear that it was something else. I went to my family Dr. who immediately brushed off my pain as an excuse to skip school and told me that missing school was unacceptable.

The next couple of months I really tried to keep going to school but it was getting harder and harder and my 90's turned into 60's. The bathroom troubles started and I found myself extremely tired all the time. I went back to my Dr. but she still brushed off my concerns and talked to my parents about forcing me to go to school no matter what.

Despite all my best efforts however my second semester was ruined and I would have to repeat it. My parents happen to have a friend who is a Dr and he was the first person to entertain the idea that it may be Crohn's. He ended up getting me a barium test scheduled but it didn't show anything wrong.

By this time my feet had also started to become inflamed and get soars all over them so that led some doctors to think it may be some form of vasculitis. I started seeing a Rheumatologist but after a few months she found nothing vascular and recommended me to a Gastrologist.

Pretty quickly he figured it was either a classic case of Crohn's or Colitis and after a few tests on my eighteenth birthday I was diagnosed with a severe case of Crohn's disease and PSC (primary sclerosing cholangitis).

After failing to finish high school for a couple of years I managed to my high school equivalency and start my dream since I was 8 of attending College to become a Computer Programmer.

My first year went great and while I wasn't very healthy, I lived close enough to College and was able to maintain a 4.0 GPA. But once my second year started things started to fall apart. I had started Remicade after trying Pentasa and Imuran but after several months it had failed to have any effect on me and my health kept declining. I had to put my Computer Programming course on hold and managed to finish a year of Basic business classes online.

It's been two years since I have been able to work or go to College though and I have had to go on anti depressants. I barely see my friends or my girlfriend and it's really hard seeing them all finish up post secondary and get jobs and move on with their lives.

My Crohn's has become more and more severe. The pain is always present and quite bad and at times becomes unbearable. When I'm not on prednisone I go to the bathroom 10-20 times a day, I'm always exhausted, and something as simple as getting groceries is very difficult and will put me out of commission for the rest of the day. My feet are still a problem with painful sores and being incredibly cold and purple all the time. Whenever I take a shower I get a painful and itchy rash on my whole body that lasts for a couple of hours. For a while my weight fluctuated dramatically between 120 pounds and 190 based on whether or not I was on Prednisone but hovers more around 160-200 nowadays. My throat is also always slightly painful and I have a permanent cough. I also get fevers and migraines constantly from my medication. Thankfully though so far my PSC hasn't caused any problems.

I have to be careful about what I eat and make sure it's cooked properly and good quality if it's meat. For me I find moderation is the key and having a decent mix of various foods tends to be best. Also staying away from things such as seeds and nuts.

I'm currently in talks with my doctor about the next step for treatment. Remicade did nothing so Humira is a definite possibility. I will figure that out in a few days.

It's been a tough journey so far and it doesn't seem like it's going to get easier soon. I have been suffering with this for 6 years now and it has been steadily getting worse that entire time. I know there are others that have had it worse and I refuse to give up or lose hope.

Knowing that there are others that go through this is comforting in a way and it's good that I'm finally able to open up about this to others that understand.

I very often find myself doing whatever I can to kill time and think it might be nice to find some people also with Crohn's or something similar and around my age (23) to chat with as most of my friends are very busy and I can't talk to them a whole lot. I promise that I verrrry rarely complain or be a downer. I just found it nice to kind of let this off my chest in a sense.

Anyway I wish you all the best and despite how poor things can seem I urge you to not lose hope and try to find the joys in life to the best of your abilities

 

[valleysangel92]

Hello! And welcome to the community!

You are certainly not weak, in fact, reading through your story you seem to be totally the opposite.

It looks like you have had a tough ride, and despite that you seem to still have a positive attitude, which is admirable.

Here we all understand what this condition can be like, you can come and vent whenever you want to and we won't judge you. To us, you aren't complaining, you are just offloading some of your burden, and that's something we all need to do sometimes.

I'm 21 myself, and if you look at the side of the screen under my photo you should see a list of support groups I'm part of, one of which is the young adults support group. I can't link to it at the moment because Im on my phone, but I think you might find that useful. You are also more than welcome to private message me if you would ever like a chat about anything.

Feel free to get things off your chest as much as you need, keep that positive attitude if you can, and keep smiling.

 

[theOcean]

Joining a place like this definitely isn't you being weak! And it certainly isn't whining. I think it means a lot to have a community surrounding you when you have a chronic illness, and it's great to surround yourself with people who can both understand and help.

I had a similar experience with my GP totally brushing off the start of my Crohn's. She told me it was just stress and that I was exaggerating. She ended up apologizing after I came back from the hospital with a diagnosis.

I'm sorry to hear how your illness has impacted your ability to go to school, as well as your mental health... I had similar problems, and had to take some time off of school. So I'm 22 and in my second year of college (video game design). Some friends of mine have already graduated, but I've gotten to a point now where I'm okay with that. You start to realize that, y'know, you're pretty young and you don't have a strict time constraint. Get things done as you can. Your health comes first, after all.

Have you ever gotten an antibody test with Remicade? It never worked for me, either, and it turned out I had really high antibodies to it. I was on it in combination with Pentasa (also totally ineffective) and Prednisone, but once my taper got low enough my symptoms would always come back. I'm on Humira now and in remission, so if you have any questions about that feel free to ask. We also have a section of our forum for it, and I'm a moderator there too.

 

[David]

Hi Jon and welcome to the community. Thank you for having the strength to join and share your story. I know it wasn't easy for you.

Based upon everything you've detailed, in my opinion it is time for you to take what I call the, "Shotgun approach". For example, I would do something along these lines:

- Western Medicine - Take the humira or whatever your doctor suggests.
- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot and we now have a juicing subforum located here.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a big fan of Low Dose Naltrexone. Two studies in adults and one in children have had great results (see the stuck thread when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, and magnesium as well as a host of others. But those three first ones should definitely be checked. Do not blindly supplement vitamin D and B12, treat these as medications and get your levels tested first. Although the blood test for magnesium is pretty useless and I strongly suggest you eat foods high in magnesium or discuss supplementation of it with your doctor.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it if your doctor is ok with it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.

Jon, I read a lot of stories from people with Crohn's. Trust me, you need to take a 180 NOW. Make the changes necessary to get on track.

 

[Brenden]

Hi Jon Im sorry you have been having a hard time with your Crohns. If you don't mind me asking what tests did they perform on you on your 18th birthday that diagnosed you with Crohns?