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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Battling something that could be Crohn's?


02-04-2014, 10:36 PM   #1
jakthebomb
 
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Battling something that could be Crohn's?

Hey guys I am new to the forum. However I am not new to a problem that seems to have escalated over the past two weeks. In 2009 (Turned 20 Years old) it all started with me being woken up at 3AM with pain in my abdomen and a strong urge to vomit and have a bowel movement. It was at that time the worst vomiting event that I have experienced. From this point on I encountered “episodes” that I will hopefully figure out what they are.

It all starts more or less the same and has only increased in numbers. 95% of them happen when I am sleeping. I am woken up, feeling really horrible with sweating and pain in my abdomen and the feeling to vomit and have a bowel movement. However only three of them actually ended up with vomiting. The rest have me feeling like I am going to die. I get the chills, feel like I need to use the bathroom, but I am never able to use the bathroom. I have passed out a few times due to this with my family finding me sleeping on the bathroom floor. The longest episode lasted from 1AM to 7:30AM. I have had on average 10 to 15 episodes a year. I have used most of my sick days strictly for this reason. After most meals, I would get nauseated. Nothing too severe.

I went to a GI and he stated that it is IBS. Yet I do not agree with him.

Fast forward to two weeks ago. I had felt really fatigued for most of the afternoon. I had to cancel on a friend to hang out. I burped a lot and it tasted really bad. I eventually went to sleep, 2 hours later I woke up and ran to the bathroom, initially had diarrhea (Which I get 3 to 5 times a day since 2009) but quickly escalated to chills, shivering and loss of feeling in my limbs. I drank as much water as I could thinking I was becoming dehydrated. I eventually admitted defeat and sat beside the toilet. Which minutes later I vomited. The following day I didn’t feel hungry at all. the day after that I ate normally. I kept feeling fatigued after eating anything. fast forward to wednesday I had to end a trip early due to feeling like I was going to pass out.

I also tend to lose train of thought, get dizzy and space out. All of which I usually never have. I am a well focused person. It has me not feeling like myself. I even walked into the endcap of a pathmark while shopping and felt really embarrassed. I have spaced out when driving that scares the living... well s* out of me.

The next day was exactly 7 days from the vomiting episode. I started the day out ok, ate breakfast, then about an hour I lost energy again. I had to once again end a trip early, as soon as I got home I was having pain in my knees, lower right side of my abdomen (felt like I was being stabbed) and I had a fever. I couldn’t go to sleep until 6AM the next morning as I was in so much pain. I was very close to going to the ER. From this point on, I had absolutely no appetite. I also went from having 3 to 5 bowel movements a day to nothing. I did eat a few things each day but 45 minutes to an hour the following would occur. Start getting pain in my knees, pulsating pain in my lower right abdomen and getting body aches. It would get progressively worse then hours latter start to taper off.

after 5 days of this I finally went to a new GI doctor. He said that my symptoms aren’t “atypical of IBS” but he couldn’t completely rule it out. He pushed on certain points of my abdomen and I had immense pain on my lower right side and right on top of my belly button. He ordered a blood test (CBC 42A, ESR 45377W and a Comprehensive Metabolic Panel (14)) he also ordered a Bowel Study and a Endoscopy. He said that my arthritis in the knees could be a “Auto immune response” to my GI tract. But he wants to see if it is “a chicken or the egg” either it is the GI tract causing the arthritis or the other way around.

Based on a lot of information that I had read up it is starting to sound a bit like Crohn’s Disease. I would like to bounce this information around the forum to see what you guys think. I will report on what the doctor has determined is the problem. For the “Constipation” he told me to drink Magnesium Hydroxide, which I did and seems to work, however I still don’t think it solved anything. I still have a burning sensation across my abdomen. I also still get the knee pain and pain in my lower right abdomen.
02-05-2014, 10:30 AM   #2
SarahBear
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Welcome to the forum!

Whatever is going on with you, it is not IBS. IBS doesn't cause symptoms while you're asleep, because your intestines essentially go to sleep as well. If you're being woken up by symptoms, you definitely have inflammation or some other constant occurrence.

Have you had a colonoscopy, or was that one of the tests ordered by the new GI (is that what you mean by bowel study)? It should be done ASAP, preferably at the same time as the endoscopy. Might as well knock out two birds with one prep (…wait, was that right?)

I see where your GI is coming from, looking into the stomach problems before looking at your knees. I'd almost bet he's right, and it is the same issue. Many of us experience it - in fact, I have problems with my knees, as well. It's not really his area of expertise though, so you might consider seeing your regular doctor about it. They could run minor tests and/or refer you to a rheumatologist.

It could be Crohn's, yes. I'm sure there are other possibilities as well, but unfortunately, I personally am not well versed enough on other conditions to offer any suggestions. I'm actually going to move your thread into the Undiagnosed section of our forum, as members there may have more knowledge in that area. You're also welcome to introduce yourself in the Your Story section so that we can all give you a big welcome - however, this is optional. You can find the Your Story forum here.

Have you noticed any blood in your bowel movements or vomit?
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02-05-2014, 10:52 AM   #3
grt73
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Hey Jak and welcome

Doesn't sound much like ibs to me either to be honest. I would be interested in what the esr level came back at. If bloods were taken in and around one of your sick episodes then I would suspect its going to come back high.
This being so definitely doesn't tie in with ibs.

As Sarahbear has said a colonoscopy would be a good option and I would also want the doc to check my small intestine. The terminal ileum is one of the most common places for crohns to be and as I found a colonoscopy didn't pick it up.
Keep pushing the docs until you get the results you need!
To be lying on the bathroom floor with both ends going off should not be a normal occurrence!
Everything you have described could easily lead back to crohns, this in itself is bad enough but if you do get diagnosed early enough then prescribed meds can knock it into touch pretty quick and its then just a case of managing it.
Good luck and keep us posted, there's a wealth of knowledge on this forum and its there to help you. It sure as hell has helped me
02-05-2014, 10:57 AM   #4
SarahBear
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As Sarahbear has said a colonoscopy would be a good option and I would also want the doc to check my small intestine. The terminal ileum is one of the most common places for crohns to be and as I found a colonoscopy didn't pick it up.:
A colonoscopy actually should show the TI. It goes through the entire large intestine and the end of the small, if done properly.

I'd ask if they can go ahead and check the small intestine as well, but depending on where you are, they may not. If you're in the US, they probably need to do the colonoscopy and endoscopy first in order for insurance to approve a pill cam or MRI.
02-05-2014, 12:03 PM   #5
jakthebomb
 
Join Date: Feb 2014
Thanks for the quick responses. I am having issues with the insurance at the moment, so I have put off the tests for now. My family has had a history of GI related issues. My great grandfather died of stomach ulcers, my mother has had her gall bladder removed. Another family member had gastritis.

I do occasionally have loads of blood when wiping. That happens 5 or 6 times a year. I get anal tears, that hurt really bad.

I also lost 8 pounds in 4 days. I forgot to include that info on the original post.

One of the big issues for me is I am needle phobic. The worst experience I have had was Wisdom Teeth removal, I only had the "Laughing Gas" no anesthetic. If you guys have any advice to help me deal with the IV needle that would be appreciated.
02-05-2014, 12:07 PM   #6
SarahBear
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Sorry to hear that, Jak. Are the insurance issues resolvable, or is this expected to be a long-term issue?

Is the blood related only to the tears, or does it ever occur at other times?

I used to be afraid of needles too, but I overcame it out of necessity. That might not sound particularly comforting, and I apologize. They can give you the "laughing gas" before the anesthesia to calm you - did they not try that, or were you still too nervous? They did this for me the first few times I had to have anesthesia.
02-05-2014, 12:14 PM   #7
grt73
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sorry to say it but there is no easy way of getting round that one. Crohns for me has meant regular blood tests and as I started on Azathioprine they were a necessity. Speak to your doc and tell him of your fears. a lot of times bloods are taken or IV lines put in within hardly any sensation at all!

also think of having the discomfort of the needles to benefit your health, weigh up how you feel with your stomach troubles and the possibility that through medication and the odd needle that you may not suffer so much!!

Good luck and keep us posted
02-05-2014, 12:40 PM   #8
jakthebomb
 
Join Date: Feb 2014
In the next week or so I hope to have the Insurance problem solved. I agree now is the best time for them to find whatever there is to find.

I used to get blood tests like crazy back when I had an allergic reaction to medication. I was 10 years old getting blood tests almost every week.

My last blood test was March 2013. It was for something else.

Question are you awake when they do the endoscopy?
02-05-2014, 01:20 PM   #9
grt73
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i have been awake for both colonoscopy and endoscopy. I had one colonoscopy with sedation and one under a general anesthetic. The endoscopy was no probs, the first colonoscopy was uncomfortable and the one when i was out cold was cool and the gang. in my opinion its the way to go although other people have no trouble with them.
nothing to worry about though
02-05-2014, 02:02 PM   #10
SarahBear
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Question are you awake when they do the endoscopy?
Where are you located? If in the US, you probably won't be. It can be done while you're awake, but it's easier on everyone if you're not. You can absolutely request anesthesia if you would prefer it. Just let the doctor know before it's scheduled, as they would have to set things up a little differently.
02-13-2014, 10:39 PM   #11
jakthebomb
 
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Well I got my insurance all squared away. Did the Blood Test, however still awaiting the results. I have my Endoscopy tomorrow at 2PM EST. I am nervous as hell.

I just hope they find whatever there is to find.
02-13-2014, 10:55 PM   #12
SarahBear
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I'm glad you were able to resolve the insurance issues. Please update us on the endoscopy when you get a chance!
02-14-2014, 10:58 PM   #13
jakthebomb
 
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Endoscopy came back clean. I figured it would since my pain is in the lower abdomen. I have to scheduled an appointment to follow up with them.

The blood test results also came back normal. I need to follow up about that as well.

The procedure sucks, I hated the entire experience. The IV was like a blood test but they remove the needle and have a tube still inside. The guy even shook my arm trying to tell me that the needle was out. What an A**. (I self censored that)

I then almost passed out as I wasn't liking the fact there was something in my arm. They made me inhale threw a tube in my nose. I guess the stuff calms you down. I had the IV in my arm for 5 minutes of Saline then they gave me the stuff that knocks you out.

I awoke and felt light headed. But had full thought process and capability to think and construct sense-full sentences. Not quite the hilarious stuff you find on youtube.

This still doesn't rule out Crohn's as they have yet to see what is going on down below.
02-15-2014, 11:49 AM   #14
SarahBear
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Have they made any mention of a colonoscopy? Do you know what blood tests they did?

Yeah, IVs are kind of weird. The needle comes out and you're left with a thin, flexible tube that stays in your arm. Since it's flexible, you can bend and use your arm, which you wouldn't be able to do with a needle in it. The tube still freaks me out a little, too.

I'm not sure why, but the funny youtube videos are almost always after having wisdom teeth out. Maybe they use something different for that. I'm always a little silly after any anesthesia, though.

02-17-2014, 05:10 AM   #15
zoeythecat
 
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Wow... I am so sorry to hear you are going through all of this! It sure sounds familiar... I have been dealing with all of those symptoms, except for the puking, for years now. They keep saying I have IBS, but I know better. I have a family history of Crohn's, colitis, colon cancer, and other GI issues but when I had a colonoscopy things were kind of in remission and everything come back negative. No further testing has been done because of insurance issues... thanks to this new health care reform/affordable health care crap the insurance I had through medicaid is no longer available to me and I have this huge spend down, which I cant afford. Its kinda hard to work much when your butt is glued to the toilet!
02-19-2014, 11:24 PM   #16
jakthebomb
 
Join Date: Feb 2014
I piece of information that I completely forgot to add. Back in late 2008 and early 2009 I went from 210 to 165 in 3 months. I had no appetite and felt like I was going to die. I wasn't exercising at all nor was I trying to lose weight. A few of my family members were really worried and are starting to worry again. Mind you I am 6foot 2inches.
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