Greetings to one and all!

[djpoptart92]

Hello Everyone,

My name is Jayme. I am a 38 year old single guy from Indiana. I was diagnosed with Crohns Disease back in 1995. The first 4 years were the worst. Of those 4 years, I spent nearly 3 of them in the hospital. I've gone through 6 bowel resections, had an ileostomy, which was removed after one year cause it was literally killing me, had a fistula, which formed in the oddest of places, my GI said. Thing formed right smack dab in the middle of my belly. My colon was rubbing up against my inside skin, and it formed a tunnel and eventually it blew open. It didn't hurt or anything, was just wierd. I went from weighing 340lbs down to 98lbs in the course of a year.

I been on just about every Crohns drug there is, Imuran(didn't help), Asacol(made it worse), Pentasa (didn't work), Prednisone(the highest dose possible, made me lose my teeth, thined my bones, and lost my hair), and now I am on Remicade. Thats it, just Remicade.

I started Remicade approximatly 11 years ago. As soon as the FDA approved it for human use, I was one of the first to get the treatment. I had head honchos from Jannsen at my first infusion. They watched me like a hawk. Only thing that happened to me was it made me tired, probably due to the Benadryl pre-med, and I got bad headaches. I don't get tired anymore and no headaches. After the first few infusions, I sorta became the local spokesman for Remicade. They would have me talk to people who were thinking of trying it. I would tell them the possible side effects, what they possibly would feel, and how it worked. The scarey side effect that worries me today is the possibility of Lymphoma cancer. My dad died of Lymphoma cancer, so that someone worries me.

But according to my GI, I am in remission. I have no poopbag anymore, I goto the bathroom normally(well, as normally is for a Crohns patient, constant runs and many trips to the bathroom). I live on Imodium. When I go out and about, I take quite a few. Its more of a safety blanket for me rather than it actually working.

Lately though, I've been having kidney problems. I was admitted to the hospital last Saturday and rushed to ICU cause my kidneys were shutting down. My blood counts were all over the place, had a touch of pneumonia and pancritis. This is the second time its happened. We're not sure if its Crohns related or not.

I decided to join this site to find friends who have Crohns, and can relate and understand my problems. I have been so damn depressed lately, all I want to do is sleep sleep sleep. My family doc diagnosed me with adult adhd and put me on Adderall, its helped some. I am also on Effexor, which I don't think is helping anymore.

Thought maybe this would be a good spot to find that true love for me. I know that I will never be able to find a woman who will totally understand Crohns and deal with it like I do, I wish to find a woman who has it, so we can understand each others problems and deal with them together.

Well, thats all for now I guess. I will probably pop up on the boards now and then.

Take Care.

 

[Trysha]

Hello DJ
You have had quite a bad time of it.
It is good to hear the Remicade was so effective for you.
It is not surprising that we get depressed with all that we have to endure.
Have to watch that kidney function though, its no joke.
I have kidney problems too, though not so bad as yours.Its a high creatinine., and now stones.
I have found increasing fluids helps to lower it a bit. .
My motto is never give up and never give in.
Feel better soon
Hugs and best wishes
Trysha

 

[Rickgren]

Hey a Jayme,
Glad to have you here. Sounds like you've been thru the ringer a few times on this. There are a lot of good people here who will help in anyway they can. Or if you just need an ear to bitch into, I'm always here. (been married along time so I'm good at getting bitched at anyway I hope the new treatment is working out for you and hope to hear from you soon.

 

[David]

Hi Jayme and welcome to the community!

Wow, you've been through so much That really sucks.

With all those resections, are they monitoring your vitamin B12, folate, magnesium, and vitamin D levels? If so, when were they last tested and what were the specific levels? I ask because deficiencies in those can cause some of the symptoms you mention and they're quite common in people with Crohn's, especially those with resections.

As for the regular diarrhea, if it's due to the resections you may want to give this thread a read.

We're here for you!

 

[djpoptart92]

I'm going to be honest here. Not to make me sound like a "Miracle Remicade Type Patient", but I see my gastro doc twice a year. Thats is. I get blood tests once a year.

I know he does a CBC and a Chem-8, and some other scribblings I can never read. So for a CBC, a complete blood count, I am guessing he keeps tabs on everything.

I am not sure of the levels, I don't understand that stuff. But they must be fine, I was never put on a supplement regimine or anything. He's actually called me a "Miracle Crohn's Patient", lol.

He has never seen a drug work as well as it does for me. I am the only Crohns patient he has thats in total remission. Only sign of Crohns, is going to the bathroom alot, but you get used to that. I also eat Imodium like candy, does help, SOME. He said, take what your comfortable and able to tolerate. I was on Lomotil, but for something more potent than Imodium, it didn't do anything.

I am also his only patient on Remicade, thats gained ALL (well not all, I keep my weight maintained mainly by diet.) I have a tendancy to not eat sometimes, and there are times I can eat two whole cooked chickens (thats serious). I think its a mood thing and a self-consious thing.

I weighed 350 some pounds, thats an estimate, lost it all in 12 months cause of Crohns, down to 85lbs, my mom tells me. A toothpick at 6'1" or 2", not really sure what my height was, lol.

Oh the diarrhea is most definetly the resections. I noticed I didn't mention how much of my large bowel I have left, 1 FOOT! So theres only so much that 1 foot can hold. So basically, what goes in my mouth, pretty much comes out my other end, usually in an hour or so.

But I have learned to control that, takes time, but anyone can.

I have been having some other complications tho lately, and we don't suspect its Crohns related. I was hospitallized twice in the past year for possible kidney shut-downs. I was just in the hospital last weekend for this.

Friday night, I wasn't feeling to good, wasnt sure why, something I never felt before, so I just went to bed. I woke up the next day, pain, weakness, its rates 2nd in pain to having one of my major crohns flair-ups. those were hell I want to forget. Well I was able to call my mom to get to my apartment, she found me collapsed in my living room. I was not in my right mind, cause I don't remember even going to the ER. The ER doc had me do a c-scan of my abdomen to check for problems. Well, they rushed me to ICU and basically told my family I might not make it.

Seriously.

They told my mom, how the hell she got me in her car, she said I got in there, and they were amazed I was able to get in there. I had to be helped out of her car and wheeled in.

(This is what I was told, I have no memory of this).

The next thing I know, is I was "coming too" in the ICU, and this local hospitals ICU is a pathetic excuse for an ICU. It was bad, trust me, I been in major ICU units up near Gary, Indiana, thats near where I lived. Those were high-tech.

Well, this is what they said, I had emminent complete kidney failure, it hasn't totally happened yet but there was a dialisus(misspelled) machine there ready to go.

AND theres more.

I also had Pneumonia (must not of been bad cause I didnt even feel like i had it), and pancreaitis. All this was going on at the same time. So theres my knocking on deaths door step for the 2nd time. I have cheated death 3 times in my fights. I say three, cause during my first bowel resection, this was when I was at my worst, I had died on the OR Table for a little over 48 seconds. I stopped breathing, no pulse, no heartbeat. I was dead. For 48 seconds. Thank god I did not know what a Living Will was back then, or I wouldn't be talking on here. I was on a breather for two days which was keeping me alive. I am one who has in my living will, as for my wishes, I do not want to be tied to a machine to keep me alive. My mom thought I did have one back then, cause my dad had one, but I really had no idea what it was.

They brought me back to life. They failed to mention to ME during all that, that I had actually died for 48 seconds. My family failed to mention it to me. I learned by reading my medical chart. Was pretty straight forward in there as to what happened. Guess they don't tell patients that kinda info sometimes.

So, last weekend, if they were going to have to tie me to that dialisus machine cause my kidneys have failed completely, again, I wouldn't be here cause of that in my Living Will. Least, if that Will is adhered too.

OK, let me get this over with, typed alot here.

Well, I became a "miracle patient" again they basically said. Not sure if it was the meds they had me on or what, but I was admited to the ICU Saturday morning, Out of ICU Sunday Morning, Felt like nothing had happened to me Monday and they shipped me home. Only was prescribed Cipro for my pneumonia. Haven't felt bad since.

Wierd huh? I had my records sent to my Gasto doc so he knows whats going on, and he's puzzled. He has no idea whats causing it, neither does my local doc. They wonder could it be something with Crohns? Maybe. Maybenot. Crohn's can actually hit just about any part of your insides, from your anus to your mouth. Then they wonder, could this be something to do with Remicade, but from my knowledge, and all the searching I have done, even contacted the people I know at Jannsen, and they have no records of anything similar to this happening to a patient on Remicade.

What amazed everyone last weekend, Including me, is how fast it all went away. All symptoms vanished overnight. It was like a switch was flipped in me somewhere turning all that crap off, just waiting to be turned on again. I want to break that switch.

Well, thats the most I have ever typed at once in a message board, lol. But I figured, it could be a learning experiance for both me, my docs, and maybe, just maybe theres someone else out there thats having the same problems. Maybe we can help fix this before it happens to more.

I know I don't want it to happen again, but, I know, with what I been through, which was The 7th Layer of Hell, that with all the problems I've been recently having, maybe my original estimate of not making it to see the age of 40, might be accurate. BUT, after the last resection, they had me not making it at all to see 36. Thats when Remicade came into my life. That drug for me was a Miracle sent to me by God. I am still here, and I hope he sends me a cause and a cure for whats been happening to me as of late.

Well, thats about all for tonight. Someday, I am going to sit down and write a nice long story telling everything I went through, in detail, theres been so much. I want to forget, but its never going to get erased from my mind.

(just noticed some of the deep and moving stuff I said tonight, thats not like me, but I'm find, trust me)

Goodnight All!!

 

[IJP]

From one tooth pick to another ... hang on in there buddy. Let's hope the worst is behind you.

Stay strong



twitter:- _IJP_

 

[ginnyrdhap]

Wow, amazing story!

You are like the Eveready Bunny, you just keep on tickin'.

You've inspired me to stay strong and hopeful through my health problems.

Thanks for sharing, and I hope you get some answers to the most recent kidney issues. The human body is both mysterious and miraculous!

 

[karj]

My god thanks so much for sharing your story. That is some story and by the sounds of it you have only told us a fraction of it! Stay strong, and this is a great place! I would never have coped the last few months only for it. I really think this is an incredible resource.