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Crohn's Disease Forum » Your Story » Not 100% diagnosed, but may as well be...


04-11-2017, 05:15 PM   #1
RotgutRedbeard13
 
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Not 100% diagnosed, but may as well be...

Hey folks,

I'm a 34 year old male that may have Crohn's Disease. A couple weeks ago, my wife and I had some friends over for a BBQ. We ate and drank and were marry!

The next morning I woke up feeling horrible. Sure, I had a few too many beers, but it wasn't the first time that's happened. As the day progressed, I felt worse and worse. I had that sensitive, prickly skin sensation, was sweating and my stomach didn't feel so hot. I fought it all day and finally decided to head to bed early.

The next morning my stomach still hurt, but now there was some lower back pain. I stayed home from work and spent almost the entire day on the toilet, often groaning from the pains in my gut.

I'm the "tough it out" type. Even after being diagnosed with panic disorder a couple years back, and becoming a hypochondriac because of it, I tend not to want to go to the doctor for anything. But that's for another there forum

It was about 8pm and I couldn't take the pain anymore. I called the advice nurse, explained what was going on, and they said to go to the hospital ASAP. I had said my right side hurt and they didn't want to chance it being my appendix.

We finally get a room and they start pushing around my stomach to see where it hurts. Odd enough, the nurse pushed where I felt the most pain and it didn't hurt. Once they figured out it wasn't my appendix, nurses would come and go in longer intervals.

They took blood and CAT scanned me and said my lower intestines were​ inflamed. "We're going to admit you to the hospital. You'll need to be here for 4 or 5 days."

If the efficacy of my anxiety meds hadn't been tested before, they sure were now! I had never stayed in the hospital before. What's wrong with me!?

They found me a room upstairs and due to the state of my bowel movements at that time, I didn't have to have a roommate. They took more blood, stool samples, and hooked me up to an IV after I complained about being very thirsty.

"Hi, I'm Dr. So-and-so. We think you might have Crohn's Disease, so no food or water for at least 3 days."

Uh...What!? WTF is Crohn's Disease? I have a disease!? Am I going to die?

With my trusty smartphone in hand, I did some research (which is not advised if you're​ an anxiety ridden, hypochondriac in the hospital).

More blood, more stool, more tests and after 4 days of the slow introduction of solid food, I'm released with a follow-up appointment with my GP, steroids and the word that a GI specialist will contact me.

A week or so goes by without incident and I go to my GP appointment. He does a standard checkup and says everything seems fine. I should leave we some weight (who shouldn't) but my appointment with the GI should answer any questions. What appointment?

Yeah, it looks like someone dropped the ball on that one. So he sets one up for the following week.

The next day, I go to have my morning constitutional and Bam! Excruciating pain and blood! Out of fear and panic, I decide to investigate that's going on back there. I've never had them before, but I think it's hemorrhoids.

I call my doc again and he asks if I've had difficulty going. Are you kidding!? I just spent the previous week expelling all nutrition from my body in liquid form! No I haven't had any issues! (I wanted to say...) He says he thinks it's hemorrhoids as well and to wait for the GI and ask him.

So I spend the next 3 days afraid to go to the bathroom because I feel like I'm being torn in half with every little movement. Apply Preparation H liberally to area...

I'm at the GI appointment expecting to get a little more information than last time. "We think you have Crohn's and if you do, the two treatment options are, A) drugs that suppress your immune system so much that we need to check your white blood cell count every couple of months/makes you more susceptible to skin cancer and B) a cocktail you inject yourself with that suppresses your immune system in a similar way as the drugs.

Great...

I brushed off all of that in order to keep myself calm, and bring up the uncomfortable posterior predicament. "Let me go get some gloves". I knew this was coming...

He says it's probably hemorrhoids and schedules me for a colonoscopy the week after Easter. Fortunately, it sounds like this will give a better idea as to what's going on, but what should I be ready for? If I have it, do I really need to screw with my immune system? If I don't have it, what the hell happened? I haven't had any issues, aside from the residual healing of the hemorrhoids. Maybe this was just a one off issue.

Sorry for the brain dump. I'm really at a loss for what to think/how to feel/what to expect. I just wanted to throw my story out there for those who might be in a similar boat.
04-11-2017, 06:25 PM   #2
ronroush7
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Hi. I am sorry for what you are going through. I think it will depend on what medicine the doctor prescribes if you do indeed have Crohns. There are drugs for Crohns Disease that can suppress your immune system. You will find lots of supportive people here. Please let us know what you find out.
04-11-2017, 08:21 PM   #3
cmack
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Hi Rotgut,

I feel for you. That sounds serious, whatever the cause, blood is never a good sign.
I truly hope that you don't have crohn's, if you do it isn't the end of the world. I have had my fair share of IBD issues and I am suspected to have crohn's myself.

It was bad at first but things got better. I hope you are going to be OK. I wish you all the very best and I understand your fears. I have walked that very same path.

You can reach out to us any time, there are a ton of very compassionate people here who understand. Feel free to come here as much as you like. you can pm me as well.

I hope things improve for you.


Your new teammate,

cmack
04-11-2017, 10:17 PM   #4
RotgutRedbeard13
 
Join Date: Apr 2017
Location: San Mateo, California
Hi Rotgut,

I feel for you. That sounds serious, whatever the cause, blood is never a good sign.
I truly hope that you don't have crohn's, if you do it isn't the end of the world. I have had my fair share of IBD issues and I am suspected to have crohn's myself.

It was bad at first but things got better. I hope you are going to be OK. I wish you all the very best and I understand your fears. I have walked that very same path.

You can reach out to us any time, there are a ton of very compassionate people here who understand. Feel free to come here as much as you like. you can pm me as well.

I hope things improve for you.


Your new teammate,

cmack
Wow, I truly appreciate the kind words. It's easy to feel like you're flying solo when no one seems to know exactly what's going on. It's nice to know there's folks out there like you.

Cheers!

04-12-2017, 09:55 AM   #5
scottsma
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Hi Rotgut and welcome to the forum.It's common to be overwhelmed when waiting for a diagnosis.And worrying what every new symptom means doesn't help.I hope you get some clarity soon.Once on meds,should you need them of course,you'll hopefully feel much better,both mentally and physically.Please keep us updated as your present worries will be sure to help others in the same situation.
07-10-2017, 02:43 PM   #6
RotgutRedbeard13
 
Join Date: Apr 2017
Location: San Mateo, California
Thanks for the words of encouragement and sorry for the long delay in my response. I've always been frustrated when the original poster says they'll keep everyone updated, but never comes back. I don't want to be "that guy".

It's been a few months since all of this went down, so here's the abridged version. I went in for my colonoscopy and they found nothing, which in almost all cases is awesome, but in mine I was hoping they'd find something that would actually land a diagnosis. Since there was no evidence, they sent me on my way, thinking all was well.

Fast forward to two days ago and I'm back in the ER with the same problem. Stabbing side pains that progressively got worse over the course of 3 days. Just the week prior to that I finished up my last course of 5mg doses of Prednisone, so if that's just coincidence, I'm impressed.

After getting me on some IV fluids and a shot of morphine, they wheeled me in for a CT scan. Sure enough, blockage from inflammation, but this time in the upper intestines. Not the lower, like last time.

After some time, the ER doc comes back in and says he spoke with my GI doc and he's suspecting Crohn's and will call on Monday (today). They sent me home with a new prescription of 20mg of Prednisone twice a day and a lot to think about.

I still haven't heard from the GI doc, but I left them a message. Having this happen twice now, did give me a little more insight into how my flare-ups work and I'm curious to hear if anyone else share some of these details:

- Both times, about 2 or 3 days before the flare up, I had lower back pain. Not excruciating, but like I had been working in the yard too long or done a lot of lifting the day before. Once the flare up started, the back pain went away.

- It starts with what feels like a small gas pain. Not too sharp, but enough to notice it. As the flare up progresses, the pain gets worse, but doesn't move around.

- Passing gas or having a bowel movement provides instant but brief and minor relief.

The first two points make it really hard to catch a flare up early on, so it's been way too late to do anything. It seems like flare ups tend to pass with time for others, but mine only got worse. Is that the case for anyone else?

Well, there's my update. It looks like I'll be around these parts from now on. Good thing you folks are nice

07-10-2017, 04:12 PM   #7
Jabee
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I'm sorry you've had a tough time. I have never been able to figure out why doctors wait weeks to scope someone who has intestinal inflammation visible on a CT scan and has been prescribed steroids to combat the inflammation! It seems counterproductive. If the steroids are doing what they are supposed to, the inflammation will have subsided. I know they are looking for mucosal changes, but surely they can scope us while we are hospitalized? I suppose it is the difference between acute and long-term care.

I generally do well...until I fall off the edge of the cliff and have to be hospitalized! With crohn's in the small intestine it can be hard to read the signals. When I was first diagnosed I was so anemic there was no iron in my body! I hope you get in to see your GI soon and that you respond well to whatever medication you are taking.
07-10-2017, 06:26 PM   #8
cmack
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Hi Rotgut,

I'm hoping the problems will subside with the prednisone. I'm around most days if you need to vent or just talk to someone.


I'm wishing you the best,

Chris
07-10-2017, 08:40 PM   #9
RotgutRedbeard13
 
Join Date: Apr 2017
Location: San Mateo, California
Thanks for the well wishes and the re-welcome back.

I've got an appointment with my GI on Wednesday, so hopefully I'll have a plan to report back with.

07-21-2017, 06:18 PM   #10
cmack
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Hey Rotgut,

How did things go with the GI? How are you doing?


Best regards,

Chris
07-25-2017, 09:58 AM   #11
RotgutRedbeard13
 
Join Date: Apr 2017
Location: San Mateo, California
Well the update is I'm am now diagnosed with steroid dependant Crohn's and I'll be starting Humira on Sunday.

I've got a bit of a bleak outlook on the whole thing, but hopefully it will all work out. I just don't think I'm ready for the potential months of trial and error that may lie ahead.

07-25-2017, 10:19 AM   #12
Bufford
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At least you found a doctor who is proactive rather than having it go longer with out treatment causing more damage.
07-25-2017, 11:56 AM   #13
ronroush7
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Well the update is I'm am now diagnosed with steroid dependant Crohn's and I'll be starting Humira on Sunday.

I've got a bit of a bleak outlook on the whole thing, but hopefully it will all work out. I just don't think I'm ready for the potential months of trial and error that may lie ahead.
Sending you support.
07-25-2017, 02:06 PM   #14
cmack
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Hi Rotgut,

I'm sorry to hear that you have crohn's. I hope they get you feeling better soon so the damage can be kept in check. You have my support as well. keep in touch.


Best regards,

Chris
07-25-2017, 04:48 PM   #15
TK83
 
Join Date: Nov 2016
Location: London, United Kingdom
I'm sorry you've had a tough time. I have never been able to figure out why doctors wait weeks to scope someone who has intestinal inflammation visible on a CT scan and has been prescribed steroids to combat the inflammation! It seems counterproductive. If the steroids are doing what they are supposed to, the inflammation will have subsided. I know they are looking for mucosal changes, but surely they can scope us while we are hospitalized? I suppose it is the difference between acute and long-term care.

I generally do well...until I fall off the edge of the cliff and have to be hospitalized! With crohn's in the small intestine it can be hard to read the signals. When I was first diagnosed I was so anemic there was no iron in my body! I hope you get in to see your GI soon and that you respond well to whatever medication you are taking.
If there is intestinal inflammation it would seriously increase the risk of perforation whilst doing a colonoscopy. This would make it a very risky and dangerous procedure, particularly if it is a first colonoscopy and they have limited information on condition of bowel. Also it is my understanding that for a first colonoscopy they try and go as far as they can e.g. Terminal ileum which is around several bends and curves. This could make it extremely painful while inflamed and increase risk of perforation again.

I know it's frustrating waiting for answers and updates, but it was explained to me that my consultant weighed up the risks of waiting for a colonoscopy v risks of perforation to bowel. A bowel perforation is a very serious complication
07-25-2017, 04:53 PM   #16
cmack
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A bowel perforation is a very serious complication indeed. Something to discuss with the doctor before your colonoscopy for sure.
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