Three Leaf Clover

First of I am a 24 year old male in the United States who was diagnosed 14 months ago. I have come to this site to read and learn every now and again and have decided that I now need support as I am just plain worn down. This will probably end up being rather long but for those with the time I would appreciate the read and you support.

My senior year of college I realy stated noticing some problems. The now usual blood, weight loss, sotmach and chest pain, ect. So I went into a GI. I had already been diagnosed with Eosinaphilic Esofogitis. Sorry I can not spell by the way and am not in the mood now. All my doc wanted to address was that this must be realtate to that and to take a topical steriod that I would swallow to help and some nexium for hart burn. Well that did nothing and after a few appoinntments with him and him not looking for anything new even though I knew that this was a new development in my health I decided to find another doc. That doc then fell in love with Eosinaphilic Gastroentoritis (EG) which just mean that I have too many cells that react to allergins in my GI tract not just my esophogis. Appently there were a bunch of new studies on this and it is the cool new disease and he was real into that. So they decided to do a Colonoscopy under that consious sudation junk wich I alrealdy new did not work from preious endoscopys but he did not believe me. Well it did not work on me as I was awake and in extreem discomfort the entire time and they had to end it short. They did take a few biaopsys thoght that confirmed EG and while they were in there saw tons of sores and ulcers everywhere that looked like crohns in a flare. Then over the next four months they did antoher endosocopy with the same junk and had to stop early then one under sudation, then another colonoscopy under sadation that they ran into a blockage and could not see everything they wanted to and then a capsul swallow and barium swallow, and iodine contrast, and blood work, and x rays and anything else he could think of to make money off of even though it was obvious months ago I had crohns. I had graduated and accepted a job to teach eanglish in Japan during this time. Finally, with about a month before Japan he gives me the official diagnosis and puts me on Humara, and Pantasa and tells me not to go to Japan. I however, am both stuburn and stupid and decided to go anyways. I was somewhat commited as both my girlfriend(of six years) and I had bought our tickets and did not have other jobs lined up.

Japan went about how you think it would in a young person just diagnosed with crohns in a forign counry that did not speek that much of the language. Also I was placed in a small village that did not have as far as I could tell any docs that could speek eanglish. So after not too long I was back in the US. I got a job as an account any my girlfriend as a teacher and before I was allowed to have any sick time I had my first real flare. For some reason I thought I already had one and boy was that a terrable shock. I have continued to be stuburn and live the life I want to so I bought a house with my girlfriend about three months ago but now I am feeling nothing but stress. Over the last two years I have lossed 50 pounds despite my true best efforts. I do not have much more weight to loose as I am 6 foot and now under 140 lbs. I used to be very athletic and compeaed in multiple sports but now feel almost disabled. I was feeling okay for a while so I decided to get a membership to a gym to get myself back in shape and feel better about myself. However, just lifting weights lightly at far less then what I was able to do even in high school I became very disorianted and vomited blood. I then felt horrible for about two days but once I was feeling better I gave it another go and had the same effets. This was crushing to me as to be honest it made me feel disabled. Something I used to take pride in and feel like was an area of strenght I was not able to even attempt anymore. On top of that about a month and a half ago my girlfriend sat me down and told me she thought it may not be the best idea for us to have kids anymore. I had thought I would have childeren my entire life and we had both agreed earlyer on that we wanted kids. I love my girlfriend and she means everything to me and has been my greatest supppot through this. She had a point that after I get home from work on good days I am exhausted and on bad days I am just trying to make it to the next day. I am not realy in a position to take care of childeren. I don't think anything could have hurt me more and it was mostly because it is probably true. Unless something changes I just can not do it.

Right now I just feel like I am dieing slowly. I have lost 10 to 15 lbs in the last year even though I realy am doing everything I can to gain weight. I am in terrable shape. I am in a bad mood alot of the time as it just wares on a person to be in pain so much of the time. I have fallen away from pretty much all of my frienships as I can't go out and drink or go to a lot of resturants and I just don't feel up to it a lot of the time. I feel like most of me gets put into my work and then once I am off work I am spent and I can't enjoy it. I am seeing my dreams like clildern disapear. And I am worried just how much longer I can keep it up. I just boght a house and have a 30 year mortgage but it has occured to me that unless something changes I don't think there is any way I can work for 30 more years, in fact I have my doubts I will be allive in 30 years. I have been taking Humera but I feel that it has been less and less effective each time and I am now unsure it is helping at all and am dropping weight agian pretty fast. I have a doc appointment with a new doc and I going to see if maybe I can give Remacade a try and see if it helps. Has anyone gotten to this point like me where you just don't feel like you can last? What do you do. I just feel like I am dying slowly and there is nothing can do.

First of all, welcome to the community, and I'm sorry you're feeling so terrible!

I know you're in a lot of pain, physically, and emotionally and it can wear you down like you said. But you have to stay positive. You have to think positive and get yourself through the day. Take it a day at a time. What things have you done to reduce the inflammation? I encourage anyone I meet who has our type of illness to change to a diet specifically for our disease. There is a great list of books you can check out in the book reviews section just for that.

Also, along with good diet, you have to have a good combo of meds. Unfortunately I can't help you with that, but I can tell you I am taking Pentasa, Entocort, and Prilosec. Where is your inflammation? Is your case severe? I wouldn't think it would be severe if they put you on Pentasa though.

heyo clover!


welcome to the forums. finally got a chance to read your story properly.

like most of us, you look as though you've had qquite a "fun" time with this.

my main bit of advice to you, is that when your feeling spent, dont fight it.

dont worry about going out, drinking, doing the right thing by other etc etc, just concentrate on getting better. what other want or need from you when your feeling ill should no longer matter, you're number 1 priority for a bit, you can make it up to them later if you feel the need.

once you've got it under control a bit better, you'll be able to do all those things again.

dont rush yourself.


& see you round the forums

Welcome Clover.

I am sorry that you have had such a stressful and worrysome time with this disease over the past few years. I have been there myself, and also went through a 40 pound loss in one year (135-95 pounds at about 5 ft 6 inch.) and felt the hopelessness as well. For me, surgery was a full transformation that allowed me to regain complete health almost instantly. Do not think that things are over just becuase what you are doing now is not working. Other medicatons might help and while surgery is a scary thing to think about, it was what allowed me to regain a full quality of life again and has allowed me to be free of any IBD symptoms for several years.

Good luck and keep us updated!

Thanks for the replys. I had a appointment with a new doc the other day and he atleast addressed some more things for me. I am swallowing one of thoes capsule camaras tomarrow. As far as test go this is about as easy as it gets so I am happy for that. I have been pretty bad latly and that is probably b/c of stress. My boss got laid off so now I am the only accounting person at our work. I report directly to the CEO and am now doing my job, my old bosses job, and another guys work who unexpectedly passed away. So that causes no stress at all right?
As for my diat. I am already on a very restrictive diat. I met with a neautritionist when I was first diagnosed. In addition to the crohn's they did a lot of testing on me due to the Eosinaphilic Gastroenturitis. The problem is some things that were tested and okay a year ago are no longer okay. I feel like it is getting worse and that is a lot of what is upsetting me.
This test should show if it is getting worse or not but the problem is I do have ulcers everywher. They are worst in my small intestine which is in pretty bad shape but even if I have that removed I doubt I would be recovered by any means.
Most of the time I am more positive I think I just come on hear at my lows so it is a little baised. Hopefully I will get switched from Humeria to Remicade and that will help. I am trying not to count on it so I wont be let down if it does not. Sounds like if I keep heading the way I am I will just be on a formula diat. That should be fun.