Crohn's Disease Forum » Your Story » New here. Crohn's Patient

11-11-2018, 04:59 AM   #1
Join Date: Nov 2018
Location: Vancouver, Washington
New here. Crohn's Patient

Hey y'all, I'm Oddoad (odd for short) No that's not my real name.

I'm 27, diagnosed with Crohn's when I was 18.

By the time I was 13 I had my whole life planned out. Wanted to join the military in the tech field, do my duty, go to college on the GI bill, and start a job in the tech industry. I got held back senior year due to a bad case of senioritis. By the time I got my diploma, talked with the recruiters, and had my basic training ship date......until I fell ill.

Well ill isn't really the right way to describe it. I was gaming one day, middle of the day and all of a sudden was on the ground next to my computer in agony. It hit so fast. This tightening of my stomach that it dropped me, I couldn't even scream. It left just as fast a couple minutes later. I got up, wondered what the hell I ate earlier and shrugged it off, the pain was gone.

Next day it happend again. And the day after that it happend twice. It would hurt so bad I would bite my pillow to keep from crying out. After once more I decided to go to the urgent clinic. They sent me to the hospital for some imaging and it was pretty clear what my diagnosis was, but to be sure they sent me to a GI who diagnosed me right away. (as a side note for some reason gummy bears would set me off, not sure why, but they still do.) Anyway after that the military wanted nothing to do with me. I was set to go in three weeks and yet now my whole life was upside down. Family didn't have the funds to send me to school and southern Oregon isn't exactly known for a plethora of jobs.

I took off, two days after my diagnosis I was on a bus north to live with my grandparents at the closest metro area. Started seeing a GI and an internal specialist. Got a night job. GI wanted me to take steroids and pain killers. I was double dosing on Dillauded (SP?) just to make it through the pain, it kept getting more frequent. I was losing weight. TONS OF WEIGHT LOSS. Bathroom visits started to be watery and WAY WAY more frequent. I was still going to work until one day on the way to my job I got sick. By this point I was so used to the pain killers, even the ultra high dose, higher then the bottle had to say, that I was able to function through just about anything. Until one drive to work. I started vomiting and it was bloody.

So I drove myself to the hospital. I wasn't about to try to afford an ambulance with a temp job. They admitted me, got my GI on the phone and decided I was to go an entire week hospitalized with no food, no water, just to try and get the meds some more time to work. (they had upped the meds, and now I was receiving an IV full of painkillers). A week went by with nothing but Ice chips. DAMN ICE CHIPS? I was so hungry and thirsty. Well not even that hungry, more thirsty I would secretly wait until they melted down and hope the nurse wouldn't take them away before I drank the bottom.

After that week I looked bad. Skin, bones, sunken eyes, I saw photos that looked better then me from my old history books on WW2. (There were a lot more where they looked worse too). Point is, I was done. And the pain, still hadn't gone away. Technically they were hoping the drugs would fix the lesions or whatever the sores on the inside of your intestinal tract are. It didn't work.

Surgery was the next and only option left. Surgery where they told me I might need a bag the rest of my life. Surgery where I might die. Surgery where my whole life would be changed yet again...... I had a girl, she and I loved each other, but we were still new, and now she might know me as a man, hell a boy, who poops in a bag on his leg. I was 19 and that was what I was staring down the barrel of. I knew I wouldn't put her through that, but then again I also knew my chances of love after such a thing would be minuscule at best.

before the surgery (which took two weeks to get scheduled, while I was in pain, and while I was still on those pain killers) I looked the surgeon right in the eye and I told him if he put me back together with a bag attached I would off myself the first chance I got, that he would end my life if he messed this surgery up. Again I was 19. Not mature enough to know anything, but he saw my eyes, he knew I wasn't kidding.

I went in for the surgery, knocked me out, woke up. Pain. More pain then I can share here today. More pain then I can make you feel through my bad writing on this forum. More pain then I can describe. The worst day of my life. Seems like I had a lot of those recently, and yet this one topped the list. It took them four hours to figure out what was wrong. The anesthesiologist, He gave me morphine to wake up on. A low dose of it.

Now anyone who has been on high doses of pain killers for a long period of time should know whats going on. Dillauded is different then morphine. Its a synthetic of morphine that's much much stronger. remember I was already taking a high dose of this stuff to begin with, higher then I should have been, and this guy doesn't check my chart, doesn't care, just puts me on a low dose of morphine to wake up on. Well morphine doesn't work for me that well.

It took them four hours to change me back to dillauded, it took another two hours to get my dose high enough that I was able to fall asleep/pass out exhausted. They couldn't get a hold of my GI for those four hours, and apparently the two different hospitals (the first one for my original week long stay was different company then the one for my surgery.) didn't share information with one another.

Just to give you all a clue of what happend, the doc described it as someone giving me a Tylenol for a surgery because of my tolerance. A freaking Tylenol for a surgery.

Anyway I was in that hospital bed recovering for two full weeks before they shipped me to my grandmothers house for recovery there. Two days later I developed a fever. My grandmothers thermometer stopped working so she had to drive to town (twenty minutes one way) to buy a new one, by the time she came back I had deteriorated very quickly. She rushed me back to the hospital, on the way I told her my goodbyes for my family. It was that close a call.

They put me back in surgery and this time I woke with three of those super big bendy straws you get in the large drinks, sticking out of my stomach. They were draining the infection I got from the first surgery. (Its a guess but putting someone in that much pain after a surgery and the stress of that certainly could have caused someone an infection.) Anyway after another week in the hospital I was sent home again, this time to my dads. My grandma didn't want the responsibility after I almost died with her. Its a good thing too because another 3 days and the infection was back.

At this point I was mad. I was cussing out everyone I saw, screaming at the nurses and doctors who were stupid enough to get in eyesight of me. I was done, I had given up and figured I was going to die, not because I had another infection, no it was because this nightmare never ended. It had been five months since I was first diagnosed, my life was in tatters. I had my whole life planned out since I was 13 and in one diagnosis I lost it all. Moved, got a job, lost the job because they won't keep a temp who is in the hospital for a full month. Had no money, had no prospects, no formal school other than a HS diploma. And now here I was back in the hospital never getting stronger, still looking terrible, not even able to walk more then three feet without getting tired or succumbing to the pain. So yeah I was madder then hell. I blamed the doctors, I blamed the hospital.

There is not much more to tell, after I started recovering my girl left me, said the pain killers changed my personality, I was too mean, too hard, and worse, I had given up. But this is what she said that really struct me, really dug deep. "The doctor said this disease wasn't going away, and eventually your going to need surgery again, I can't go through that with you again, I don't want to."

Its not her fault, seeing your boyfriend go through something like all of that, being by his side the whole time, It wasn't easy i'm sure. I wouldn't have even made it without her and my family. I don't blame her, but it didn't make it easy to have to walk the path alone.

Anyway I recovered. I got off the pain killers, I was in remission. Even in remission I would have occasional flare ups, nothing like the pain I had been in. Also and i'm not sure if this is the Crohn's or the ileum whatever being removed but I now have a set time limit that I have to make it to the bathroom by when I get the feeling to go. If i don't reach it before that time well its coming one way or another. Two failed attempts was all it took and now wherever I go I know where all the bathrooms are and how long it will take me to reach them. I also go three-four times a day.

But you know what, even with that limitation the surgeon didn't put me on a bag. (For those that have that, I want to say i'm sorry about the way i've phrased it in my story, its just that as a 19yr old it does seem like the end of the world for a young man. I know better now, but back then...)

I recovered, and yet i'm still not whole. I have found love again, a beautiful girlfriend, been together two years, live together. Ive gained a lot of weight back, too much in fact but still, i'm not in pain. I have a job, not in a field I want. I have my own place, car ect. But theres this weight of this disease. Because it doesnt go away. Ever. I'm still not what I was before the surgery, I rush to the bathroom every day. I have bad days. I'm tired ALL THE TIME. I never get enough sleep.

And its coming back. My flare ups are more and more frequent. For six years ive ignored myself. Ignored the disease. I haven't taken my supplements, I haven't been on a special diet (Dietitians are freaking expensive.) Its like I tried to tell myself after I recovered from the surgery I wasn't going to change my life. But the fact is my life did change. You know I declined regular medication. Six years I haven't done anything except sometimes take pepto, and if I remember to I will sometimes take iron. My girlfriend notices that its getting worse. She encouraged me to go to a GI. I didn't want another Scope. I had THREE done back then and I really didn't want another one.

But I went. I couldn't put it off, I had taken to many sick days at work, I was going to lose my job. But still the thought of taking that damn sickening bowel cleaner again almost made me not go. The memory of throwing it up time and again. Three colonoscopy's and I never wanted another one again. See I told you, I tried to ignore my disease. (Sorry I just have to say, never ask to see the scope beforehand, if your a virgin to getting scoped just trust me on that.)

Anyway Doc talked to me about meds, but first wanted some imaging, as soon as he said he needed to see what was going on I almost bolted. But then he said MRI. I stayed, I listened. He explained that given my surgery and still being under thirty there was a higher then average chance he could see what he needs to see without the scope. He then talked to me about the medications once he see's how bad the damage is. Pro's and cons ect. I liked him. If he needs the scope after the MRI then sure I will do it. begrudgingly but it will get done. I can't allow this thing to let me lose my job, I can't ignore it any longer. By the way, I got the MRI today, scheduled to see him again two weeks from now to talk about the results.

Point is i'm scared. This disease is like a weight that has never left. It changed my life, not for the good. I learned a lot about myself that I never wanted to know, and some that I did. I gave up on life, and then worse I ignored life like it was fine. I haven't found the balance yet. Yeah I have love, but whats gonna happen again when I have another surgery for this? Even with keeping up on it the chances are almost certain I will need one. Whats gonna happen with a job or a family. Will they leave me too? Will I die? Maybe I won't be strong enough.

I'm gonna face it, because I have to, but what comes of it I don't know. Its changed my life once before. I'm still a low wage worker with a blue collar and more debt then luxury. Bright news though, I might lose some of this excess weight ive got.

Anyway, no its not a happy story, but its mine. Its long, and its incomplete. I left out some bits, but it doesn't matter you get the gist of it. Especially if you've dealt with it.

Good night, and hello again.

11-12-2018, 06:44 PM   #2
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Trysha's Avatar
Join Date: Aug 2009

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Thatís quite a story and your fellow crohnies can resonate with it.
Never give up and never give in is my motto.
There are medications that might well be helpful to you,...biological like Remicade or Humira and other more recent additions to the drug aresenal
It sounds as if you have found a good GI.....
Hang on to him and take some advice from him.
He will likely find a solution in the short term and take a little time to figure out the best approach for you in the longer term.
It might even be possible to avoid further surgery.
Once stabilized see what you can do to further your sounds as if you would like to do this.
The untreated illness is robbing you of valuable time in which to pursue a career of some kind.
Fight it and you will win in the long run with a knowledgeable and sympathetic GI.
Do keep in touch with us through the forum and hopefully you will peruse some stories similar to yours which you might find helpful.
Feel better soon and donít forget to keep in touch with us.
11-12-2018, 07:32 PM   #3
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cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Hey Odd,

Welcome! I can relate to your problems and your feelings. Feel free to pm me any time to talk or vent...etc, I really care about our community of friends and people in general. Of course you can talk to me on this thread if that's what you like. Best wishes my friend.

11-13-2018, 02:12 PM   #4
Join Date: Nov 2018
Location: Vancouver, Washington
Thank you both for the kind words. A small update I went in to see my gi today. Results are not back in he wants me to do a small test that will take about a week to get back. Itís to check along with the mri scan the amount of inflammation I have going on. As soon as the results are back in heís going to call me and put me on a biologic. Iím leaning towards humira over remicade to start with, but thatís strictly because I prefer the thought of an injection over a transfusion.

At this point Iím actually hoping for the tests to show inflammation strictly due to the fact that I want the medication to see if it helps with the pain and frequently of going. Somethings gotta change. He also prescribed an anti cramping and another small thing to help with frequency of bmís. Hoping that helps.

Any suggestions on injection vs transfusions? How it long it takes to work. To help with pain, uncomfortableness, frequency of bm, and fatigue?
11-13-2018, 06:44 PM   #5
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cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Hey Odd,

I'm sorry, I can't comment on the on injection vs transfusions issue as I have been able to avoid them so far. I am able to suggest that you stick to acetaminophen only unless your doctor decides otherwise. I noticed an increase in energy after supplementing with a 1200 mcg B12 time release tablet and 2000 IU of vitamin D3 daily. Some people need higher doses of these vitamins as well or prescription strength iron for anemia. You should definitely discuss things with your doctor in charge before taking any new drugs/supplements or taking current ones in different dosages.

I think the best bet is to get in as soon as possible to see a doctor who can run the blood work required to find the cause of your issues. Besides having a chronic medical condition, many of us are very deficient in vitamins and or minerals. The blood work could also test your levels of inflammation markers CRP and calprotectin. This will help you make a more informed decision regarding treatment.

Best wishes,


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