Jake n Crohns........My story!

Well, where do I begin? I dont know when the Crohns began but I know when it started changing my life and me!

Summer of 07 I remember having a lot of constipation! Id eat and feel full, uncomfotably full for hours! Even after small meals! So full i felt (Im a guy so I can only speculate) Pregnant! I mean Id get really tired, sweaty, have trouble breathing and couldnt get comfortable no matter what I tried! It was like I swallowed a bowling ball! I started to get sick all the time and for a guy who had a physically demanding job, and was active in sports, I kept gaining weight and losing energy! I was always on the go and up for anything but for some reason I started becoming a homebody and was always tired! In the fall of 07 I had extreme stomach pains (LRQ), so bad I was curled up on the floor at work! Luckily Im a commercial plumber and I was actually working on a part of a hospital! My co-workers didnt have to take me far for help! An overnite stay and a bunch of tests later led the doctors to conclude I had a gastrointestinal infection! It was actually a guess since all the tests were fine! They told me if I didnt improve by morning theyd take my appendix out just to be safe! Well I ate that next morning and everything was fine so they shipped me outta there! (I was later told after my diagnosis that if they went in for the appendix they would have found the Crohns)......

Fast forward to late summer 09! I had still been dealing with constipation, and fatigue but looking back I guess I was adapting and learning to cope better! I was moving forward in my career and was on my second year of a six figure salary! My life was finally getting some direction! I was with a great girl, I had purchased a brand new truck, for the 1st time in my life had all my bills paid and had managed to save 20k for a down payment on a custom home that I was about to sign the paperwork for them to start building and then.......it started!

I was actually on my way back from signing some final changes to the floor plan of the house! After the signing we stopped for some food! I had some wings and beer! When we got back in the car I could tell something was wrong! The constipation was like never before and I was sweating profusely! Next thing I know Im telling my girlfriend to get me to a hospital because Im having a heart attack! 29 and in decent shape, a heart attack? My heart was racing, felt like I couldnt catch my breath and pure panic was in my head! that started the 1st of many trips to the ER!

After this incident occurred, began the start of a new me! This seemed to change me! Not just mentaly but physically as well! I started not being able to relax, being depressed and just overall feeling different! A couple more heart scares (which by the way each time my heart checked out fine) and my primary wanted to label me with anxiety! Everything was going great in my life what was I anxious about? Doc said the purchase of a home can do this...well I knew myself and to me, it didnt fit! Then came the daily, headaches, innability to concentrate, weird chest pains, extreme fatigue, blurred vision, stomach pains, back pains, random all over pains and bowel movements that ranged from (dont mean to be graphic but) rabbit droppings to ribbon-like to shredded paper! That was when I actually had a bowel movement! Doc said constipated! I flipped out and stormed out of his office to a new doc! Her answer.....I need to see a pschycologist! Oh yeah, now they thought I was crazy along with some of my family! I kept tellin them something was wrong with my health and almost no one except my girl believed me! I made a deal w my Doc and said I'll go if you run more tests!

After 3 wasted visits, I developed 2 new frightening symptoms! The 1st was lack of an appetite! I always had some sort of daily craving...but now nothing....which I ended up losing 20 pounds fast! They decided to test my gallbladder, which came back as only functioning @ 10%! They were gonna remove it but because I was young they wanted to wait and see if I had an underlying cause! Well the demon finally reared its ugliest head and I developed IRITIS! The most painful thing Ive had in my life! It was at first thought to be pink eye and mistreated therefore leading to a severe case of iritis! I was on constant drops and in a pain pill coma for 3 days! I went to an eye specialist who after injecting me with a steroid in the corner of my eye said to me that she has only seen iritis this severe in people who have an auto-immune condition! She then ask me......I kid you not, if I had any weird or unusual symptoms lately? Huh, where do I begin! As soon as I told her the symptoms relating to the bowels, she immediately called my G.I. and told him to do a colonoscopy! Later that week, I finally found out who my symptom demon was.....a term I was unfamiliar with CROHNS! That was april 2010!

After my diagnosis, I was immediately put on prednisone for about 2 months, then started Remicade in June! I still am not back to the old me, not even close! The remicade to me seems to be holding the crohns to a mild form! Im trying to get them to up the dose cause after about 4 weeks my bad days become more than my good! As far as my life, just as uncertain as this disease! I lost my job, never got the house, have a strained relationship with my parents, burnt through the 20k to pay bills and other expenses and still in no condition to return to work! Basicaly Ive had to hit the reset button on my life but Im stuck at the start cause the disease wont let me get going! My girl has stuck by me through it all but I dont know how much more she can handle? This disease has changed me so much that in some ways Im sure Im a diff person than the guy she fell in love with! Only time will tell?

Id like to thank anyone who took the time to read this! Any advice or help would be greatly appreciated! Its great to have a forum like this and I wish you all, us all the best! Your all in my prayers! God Bless!!!!

Welcome jake! I hope you start feeling better soon. Like you I had a hard time with this at first. My doctor came out and told me I was crazy and making it all up! Finally I got an answer in june 2010. Its a tough road. Keep your head up! I'm sure if your girl has made it this far she will continue. It is a lot for others to deal with and understand so I wish you the best!

Jake, Welcome, AND WOW, You Have Been Through WAY TO MUCH.
I Have Had Crohn's Since I Think a Kid? 1992 Diagnosed, Plugged up.
My Experience With The Medical community Has been, They NEED The SCIENCE to Prove it's Crohn's,, or it's (Irritable Bowel). (Ignore The OBVIOUS)
Which Meant SUFFER!
Finally I Had a Local Surgeon Put me under and Physically, This LAST TIME and Look to find fissures.
THEN Still had to GO to Another Clinic to GET CONTINUED TREATMENT (Remicade)
(I Was Told because I Was on it in The Past I COULD NOT TAKE REMICADE) Past Doctor.
I AM ON IT NOW. Seem to SLOWLY Getting Better??
IF you have Options and Are NOT HAPPY With Your Healthcare LEAVE!
One Thing I Have Found Here, crohn's forum with all These Great People.
RESILIENCE.
Hang in There, See in the Yellow Pages if you Have a Handicap Council? Talk to Human Services.
I Worked from 16yrs to 41yrs and CROHN'S took Over. It wasn't in My Life PLANS.
People Think I'm Retired, (TIRED) ETC. Yes!
Take all the Help you can get, That's What You Paid Taxes For!
Be Your Own Best Advocate!
My Best, Archer

Hi Jake! Glad you found this forum. The people on here really helped me especially when I was newly diagnosed and trying to figure out which end was up so to speak. I relate to your image of punching the 'reset' button on life. Not to minimize the physical but I find it is the emotional side of Crohn's impact on my life that is most difficult to deal with.

Diagnosed officially October 2009, I am still not used to an image of myself as not a healthy person. Even when I'm feeling good I can't honestly say I am in good health. That is weird to me and not my concept of who I am, so that is hard. Dealing emotionally with having to cancel plans with friends because of a flare or having to depend on family and friends to drive me to medical procedures, those little things still take an emotional toll.

Overall though I am adjusting and learning to take care of myself and my disease. I actually eat a more nutritionally healthy diet now and exercise regularly to manage stress versus my previous incarnation as a couch potato! I have made great new friends by getting involved with Crohn's Colitis Foundation's Team Challenge and actually walked a half marathon last July! This year I am going to be a TC mentor. ("If I could do it, you definitely can!")

So hang in there!

Lilly

Thank you all so much for responding! I know that I am not the only one with Crohns but I still cant help but feel alone sometimes! The couple people I do know who have it, Well the meds they are on are working great and they are leading a mostly symptom free life! I am on a rollercoaster of symptoms right now! I can have 2-3 great days where I work out, play basketball and be kinda normal then I have 3-4 bad days! I so want to go back to work but I physically cant! Some of my family doesnt understand! See I still keep my weight, i will lose a couple pounds on the bad days but get it right back during the good! Combine that with people seeing me play softball, basketball and work out and they, I assume think I just dont want to go back to work! At my Doctors office they keep weighing me and since Im around the same weight usually it seems they are suprised Im not feeling better! They always ask about diarrhea and when I tell them no they look at me funny! I have so many questions and things I want to discuss! I thank you all for reading my story and as I said before any help or advice is most definetly welcome!

Hi Jake and welcome! What a story. I hope you bought some flowers or a nice dinner for the eye specialist - that's crazy that she ended up diagnosing your Crohns after the GI guys missed it!

The Crohns has really stripped you of a lot -but I can't help seeing the positive turns in your story. Thankfully you didn't get the house as you prob wouldn't be able to keep it up since you are not working. And thankfully you had that 20k otherwise you'd be that far in debt from the medical bills. It sux that you had to burn it on med bills, but at least you had it to burn. It's a shame about your damaged relationship with your parents. Hopefullly over time they can come around and understand how ill you are.

And as for your girl- she sounds like a gem! Hang on to her!

I hope you start to feel better soon and that they can get your remi worked out so you can continually feel good. Take care of yourself!

-Amy

Amy, thanks for reading and keeping a positive perspective! For me, it fluctuates between negative and positive! I think of how hard I worked and what I could of had! Not saying I wont have it again but for now that seems far away! And I told my eye doctor she was my hero but she said to thank the iritis(which I never would) for it was the final symptom that no one could ignore! As for my girlfriend, well yes she has been amazing thru it all! She is still young (27) and I know the thought of me not getting better and what this lifestyle might be like has to be frustrating her! I was always the person who liked to travel and do spontaneous things but now a lot of that has changed! I honestly would understand if she left me and wouldnt blame her! My parents, well thats another story in itself! Im an only child an I guess its very hard for them to watch their only son lose everyhing he has while he sits there not doing anything and theres nothing they can do! Get a 2nd opinion!, Why isnt this medicine working yet?, Dont they understand you have to work? Ive heard this from my parents more than I can count! They dont get the fact that this takes time, trial and error and I might never get back to work! If I had an office job, I'd def be back but I have a physically demandind job, one that requires lifting heavy objects, workng out in the elements, and only having access to a Spot-a-Pot for a restroom and believe me most hazardous waste workers have trouble even going into one of those things let alone trying to use it as a restroom! Cancer runs in my Dads side so when they finally found out it was Crohns and not Cancer, the attitude from them was kinda "Ok youre not dying so lets get back to work!" They just dont understand! Ill admit I have some lazy people in my Family who would find any way to get outta work but now theyve lumped me in with them and its painful that they could even think this was anything other than me having a disease! Its been the worst year of my life and I hope in times things get better! Its great to have people and a forum like this to come to.....def helps! Thank You!!!!!

Hi Jake and welcome to the forum!!
I know what you mean when you say you fluctuate
between feeling negative and positive.

Try to stay as positive as you possibly can...
A positive attitude really helps with this disease and
you CAN have that life style and do those things again!!

Enjoy your stay here..feel free to roam the forums..
ask questions if you have any, or just vent if you like.

Once again welcome!!
Nancy~

Hi Jake
and welcome

That's a sad story, but all too familiar! I can empathise with the mental bit, I was told that too, by doctors, friends and family.
Well, I got a diagnosis and I framed it! There you are, SEE, I'm not mental and I don't need that lobotomy, thank you!
Your life isn't over, things will settle down, people will come round, family will understand, well they might! But you don't have to justify yourself to anyone actually!
Your girl sounds like a keeper and a darling, hope that stays that way.
Hope this year will be a turning point for you, and that you can up your dose.
Check out the Remicade Club for some answers.
Glad you found us, lots of friends here for you
lotsa luv
Joan xxx

Joan, thank you so much! Im very glad I found this place! You hit the nail on the head with the framing it so everyone could see! I really wanted everyone who doubted to bow before me and apologize! Not really but thats how I felt sometimes! My Uncle actually did apologize and admit he thought I was full of it! Very nice to hear! But he has a severe back problem so he sorta knows what I go through with people doubting the disease and its severity! You think people have some sort of sense who you are and what your capable of and it really pisses me off that people who Im close with or call family could even doubt me for a minute! Not just family but especially co-workers! Ive worked with these guys for years! Paid my due's, put in a lot of hard work, never complained(except about money, haha), was always at work and on time! For them to doubt me, all the double-talking and backstabbing that went on.......Some of it was heartless! I mean I survived the companys biggest layoff in its history because of how good of a worker I was! One guy even made it a point to try and get rid of me, and this guy was someone I called a "friend"! I was out of work for about a week in the process of getting diagnosed when I got laid-off! Never got to fully shove it to them after my diagnosis! Word did get around and I had a bunch of guys call with condolences but it was amazed @ how people treat other people sometimes!

The funny thing was when I got to feel about as low as a person could and all the tests werent showing anything and everyone started to think I was crazy, I looked @ my girlfriend and said " You know something babe...Im not crazy, all of them are! Sooner or later I'll have a symptom they cant ignore! I know my body more than anyone and I know theres something wrong!" 3 days later, I developed Iritis which led to my diagnosis!

Not only did I know my body but I was also psychic! lol! JK!

Welcome to the forum Jake. You will like it here.

AndiGirl...thank you and I all ready do!!!

Oh my gosh your story is crazy close to mine. It actually brought chills to me because I have some of the EXACT same things that happened and are happening to me. I wish you the best of luck the one that stands out the most is the Iriits, I had that happen to me and I have never put 2 and 2 together that it was related to my chrons. I have also had chest pains and the rabbit poop 2. It makes me feel less crazy reading your story because I can relate. Thanks for sharing

Oh and another quick question, Y did they think you had the chest pains. Ive been dealing with them frequently and was in the E.R last week and they said everything was fine and maybe it was heart burn. I called B.S on that ive had some of the worst heart burn in the world and this feels NOTHING like it. Feels like im having heart attack.

They could never really tell me! I know I was having heart burn and bad reflux when it was at its worst but sometimes the pain would be without heartburn/reflux! I went to the ER and called 911 atleast 3 times! Its the worst feeling! Def felt lke an oncoming heart-attack! I had so many weird random symptoms that i never even told the docs abot all of them cause I knew they would either call me crazy or get too confused! As of now though its mostly all calmed down! Every so often Ill get a little heart palp or two but nothing even close to as bad as it was! I think that has to do with certain foods/drinks! It only seems to happen when I really get brave with food and as soon as I stop it will go away! Chest pains have stopped and whatever little bit of uncomfort I get I dont worry like I used to cause Ive had all these tests done on my heart an such so I just shrug them off! Hope this helps...keep me updated!

I can definitely relate to heart burn. I'm on Rinitidine for that. I can become so debilitating. My sister who doesn't have Crohns has it worse than me. She has had to change her diet completely, and had to elevate the head of her bed.

We haven't seen you around much, Jake. I hope you are doing okay.

Andi- Sorry, been real busy! My softball team is gearing up for the 2011 season so with practice & sponsor meetings things are getting hectic! We will be traveling a lot so I'm kinda scared by making a commitment because as you know us Crohnnies don't know what are future holds as far as health wise! I just figured I can't live my life always afraid of the potential negative! I feel blessed that I'm healthy enough to be doing this at all! Also been busy w my lawyer and the Doc! Had some elevated liver tests and ANA! Did more extensive testing and liver is ok but I'm a little worried about the ANA! Could be my body building up an immunity to the Remicade? I hope not! I had an AFLAC policy for short-term disability that was to pay me for the 1st 6 months I was off of work Roughly $22,000 dollars which after a long drawn out process they have decided to decline! Met w a lawyer and we are gonna go after them! Also trying to tie up loose ends w finances and preparing to go back to work! I don't know if I'm ready but I kinda don't have a choice! Lawyer wants me to file for disability and says It will take time but I can get it! I have a hard time believing that since I don't think my disease is as bad as some? If I had a desk job it wouldn't be an issue! Maybe they will take that into consideration? As far as how I'm feeling! Well I'm struggling with insomnia and what seems to be reactive arthritis but that's manageable! Also dealing w a dull upper right quadrant pain and on an off nausea! My gall bladder is only functioning @ 10% so I'm scheduling surgery to have it removed! Hope that's the right thing to do....????? Thanks for asking, sorry so long of a post but you know me! Hope all is well with you! Keep me posted!

I love all the stories of misdiagnoses. It amazes me that all it takes is a blood test and maybe a little camera probe LOL and the docs could come up with a real diagnoses yet they don't. They must just be so busy with their hundreds of thousands of dollars and nurses station gossip to actually give a patient a few minutes of their time and effort. I guess that's whats driving my medical career pursuit. The bonus is if we have to spend time at a hospital we might as well get paid..LOL Good luck with your surgery and stick up for yourself in the hospital...remember its your body and you know if your ready to go home or not. Hopefully your in and out in a few days and back to those beautiful piles of wings and ice cold beer mmmm...yum .. its the little joys.

RN- the problem with the healthcare and Doctors in particular is the fact that they are always treating the symptoms and not the underlying cause! They are so quick to write a prescription for a symptom (except pain meds) instead of doing a thorough check up! I have tried to make it clear to my G.I. that I dont want to be treated that way! Whether he believes this or not, I would prefer not to take any medication! I dont want him giving me a pill and saying "Take this and see if it helps!" I dont want to play the "lets wait and see" game because while my doctor and I are waiting to see, it is only my life that is being affected! Just like asking him to test my ANA refering to Remicade antibodies! I told him I dont want to wait until my symptoms get bad before we realize that it is not working (hopefully this never happens)! With the proper testing we can figure it out before it gets bad! Doctors when referring to illness always say that the earlier you can identify & diagnose the problem, the better off you'll be! Well, then quit giving us the runaround when we tell you something is wrong! Do all the testing you have to, even if you dont think you have to! ( I know Insurance plays a part in it but Doctors have ways around obstacles if they think its important enough)! Anxiety, IBS are too convenient of a diagnosis now days! Thanks for the support RN...I been putting this gallbladder off for some time but its not working anyway and Im hoping by taking it out that it will help with some of the symptoms Im having! GOD BLESS!

Just wanted to say welcome Jake! Thank you for sharing your story!

I know this is pretty late in the game, but I wanted to relate something to you that might help:

The three times I've had really bad symptoms, I've had something stressful coming up. First time was opening a gallery. 2nd time was meeting a potential huge client. And this time is related to a show coming up.

Now, you might think in your waking hours that you are dealing with things just fine. I know I did. I'm a man, , I'm looking forward to the changes and all that this next thing will bring, etc. I'm OK, I can take it, I'm strong, I'm resilient.

But...

Your subconscious may feel differently and you may not be aware of this. All the stuff you can put off emotionally and say "I'm OK, I can take it" is still affecting you, but instead of it going somewhere in your brain, your body is taking it on and taking it in. As silly as this sounds, IMO, it's residing in your colon. I know, the colon does not have any brain material, but emotionally, things can happen to your stomach. When some people get scared, their gut tenses up or their stomach hurts. This is internalizing. So, you may not get a stomach ache and you may not get a headache, but you MIGHT be getting a colon ache!

I am under a lot of stress right now and outwardly you'd never know it. But even doing something GREAT and positive (like building a house, etc.) is DEFINITELY stressful, even for the strongest man, even if you outwardly feel like it's all OK. I'm having a show exhibit of my art in a month and that's most likely why I had this recent flare up, I know it. My colon was all ready for it (pre-disposed to this condition anyway) and then I put in a food that was a trigger and BAM, flare-up city!

Give some thought to this and see if any of it fits. I'm not saying this is definitely you, but some of it might be you. There's a definite mind/body connection and the one big thing they say to reduce with Crohn's is stress, even stress that you may not realize you are going through.

I hope and wish you are getting well!