Crohn's Disease Forum » Your Story » My symptoms - please give input


05-06-2010, 07:59 AM   #1
Bikeguy
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My symptoms - please give input

Here is my story. I'm hoping to get your input on my symptoms. Seeing the doctor is expensive and I'd love to get a handle on this without spending more money on tests, etc. I have not been diagnosed with anything in particular so far.

I have been suffering from intestinal symptoms for a long time. I've seen the doctor a number of times and had a colonoscopy and endoscopy last year. They found some smallish polyps that they removed but no major problems.

I was told twenty years ago in college that I had irritable bowel syndrome. About eight years ago I started getting what my wife described as "sleeping sickness". I would spend 7-9 days (mostly in bed sleeping). When this happened, my symptoms often but not always included the following: Exhaustion, weakness, confusion or lack of ability to concentrate, nausea, heart palpitations, shortness of breath, some weight loss and of course soft stools, diarrhea and some cramping. My bowels always seem to be messed up, so I didn't at first associate this sickness with my bowels.

The sickness would reoccur about every 10 weeks, residing me to feeling terrible for 7-9 days and sleeping 2-6 hours during the day. Over the years, I've noticed an increasing intolerance to certain foods, spices and preservatives. Beer and alcohol also started to really reek havoc on my system so I quite drinking entirely. My GI doctors said that infections in my bowels can trigger my body to become intolerant of certain foods if they are injected during an infection. He said this was probably the case for me.

My bowels then started not liking pills, lactose and got very sensitive to too much fiber, etc.

Here's were it gets interesting:
I went back to my doctor complaining about my symptoms and he said, that I might want to try taking metronidazole (Flagyl) just in case I have parasite, etc. (even though testing for a parasite came back negative).

Three days into taking Metronidazole my symptoms started to clear up. When I was done taking the pills my bowels were working normally for the first time in many, many years. I started drinking again, eating cheese, drinking milk and staying normal the whole time.
Then, about four weeks after taking the drug, I noticed that my regular bowel movements were followed by my "normal" pale colored thin and very soft movements (sorry for the details). This regression back to my old sick self continued for a number of weeks until all of the positive effects of taking the drug had disappeared.

I am now back to the cramping, loose stools, some nausea (especially at night) and having to be very careful about what I eat and drink.

What is interesting is that the colonoscopy (or at least the preparation for the colonoscopy) had a similar but much shorter effect. Two days after my colonoscopy, I had totally regular bowel movements but just for two days. It seems that clearing out my system must have reset the bugs in my gut for a short amount of time.

Does this all mean that I've got the wrong king of bacteria thriving inside my bowels? I've tried taking probiotics but don't see any difference or improvement.

I am currently recovering from yet another spell of "sleeping sickness" and really want to find some kind of solution. Please tell me what you think!

Thanks!

Last edited by Bikeguy; 05-06-2010 at 08:04 AM.
05-06-2010, 08:14 AM   #2
Crohn's 35
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Hi there, welcome to the forum. I was having the same problems as you and took over a year of testing and such, however being in Canada we dont pay for those tests out of pocket. Crohn's is very tricky to diagnose, there are still some people on here who still dont have a diagnosis but still have symptoms.

I have been on and off Flagyl (on again now low dose) and when I stop taking them my Crohns comes back 10 fold. If and when you get dx you need to be on something to help keep your symptoms at bay. There are many avenues to go but getting a diagnosis is crucial. Sorry the doc's are not finding it right away. MY body hates meds too, hard to find something what works or the side effects get me.

Glad you found us, ask away and btw nothing is tmi here. We have all been there done that! Keep us posted ok.
05-06-2010, 02:32 PM   #3
Bikeguy
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Hello Jettalady,

I spend $6,000 out of pocket getting tests with really nothing to show for it. I love out health care system!

What kinds of trigger foods and drinks do you try to stay clear of?
Are high fiber foods a problem for you?

I think this last round of feeling sick was caused by getting dehydrated while working outside. I forgot my water!
The symptoms started he next day.

Do any of you suffer similar symptoms of feeling really exhausted for 7-9 days at a time??

Last edited by Bikeguy; 05-06-2010 at 02:35 PM.
05-06-2010, 02:44 PM   #4
Crohn's 35
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Yes and yes, but I am a major water drinker but lately I have been bad.. my eyes dry out and lack energy. Trigger foods for me is fiber, wheat, and dairy, or any kind of fat. If you have Diahreah or it floats, you could be eating undigestable fat. When that happens I flare, and trust me the cheating isnt worth it. I eat lean meats and steam all my veggies, and eat banana's because my potassium levels go up and down. Stress should be avoided as much as possible and when you are tired, rest, get at least 8 hour a night sleep, if I don't I get heahaches and nausea. Hope you are ok. Take care!
05-06-2010, 03:53 PM   #5
Bikeguy
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Oh, eyes! If I've eaten "the wrong" thing I can almost instantly feel it in my eyes. It feels like the moisture is being sucked right out of them.
I know now this is a signal to quickly drink lots of water to try and counter the reaction (in hopes that I don't spiral into feeling terrible for the next week).
05-06-2010, 04:59 PM   #6
Emkat8
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Bikeguy,

I don't have much to add here, but I can say that my stomach felt really good too for about 2 days after my colonoscopy prep! No diarrhea was nice, even if it was only for a while, lol
05-07-2010, 02:00 AM   #7
Keona
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Hi Bikeguy
I am one of those people Jettalady was talking about regarding someone who hasnt been diagnosed. One thing I have learned on here is to try not to compare myself and symptoms to others as everyone is very individual... different trigger foods, different reactions, etc.
I am one of those people who feels exhausted all of the time and like you am affected by too much fibre, I also stay away from all alcohol, cramping, loose stools, nausea, etc. I also feel worse at night but also first thing when I wake up (bathroom wise).
I also have dry eyes and havent figured out why... feels like there is an eyelash in it and can never seem to find it to get it out... just scratchy.

I am sorry you have to pay out of pocket for your tests. I feel sorry for any American on here for that reason. The issue with our health care system in Canada is that we have to wait a long time for tests. (I have been waiting for over a year to get in to a GI and several months to get an MRI). I actually feel fortunate as I spoke with a woman who has to wait 13 months for an MRI and she is in really rough shape.

I hope you can get some answers and relief soon. there are some really knowledgeable and friendly people on here!
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Last edited by Keona; 02-19-2011 at 04:23 AM.
05-07-2010, 07:23 AM   #8
Crohn's 35
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I am sorry you have to pay out of pocket for your tests. I feel sorry for any American on here for that reason. The issue with our health care system in Canada is that we have to wait a long time for tests. (I have been waiting for over a year to get in to a GI and several months to get an MRI). I actually feel fortunate as I spoke with a woman who has to wait 13 months for an MRI and she is in really rough shape.
I had to wait for my Gi 4months, every area is different but yes, waiting sucks and if you forget an appt you are toast! I am in a smaller town but a bigger hospital than other area's. Being in the North has some advantages.
05-07-2010, 09:58 AM   #9
Astra
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Hi Bikeguy
and welcome

I've not much more to add other than persist with the doctor!
hope you find some relief soon, glad you found us
lotsa luv
Joan xx
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05-07-2010, 01:09 PM   #10
Hedgehog
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Hi Bikeguy,
A consultant in London says you can think of Crohn's as being allergic to the contents of your intestine - bacteria and food. Your body reacts because the immune system is overactive. So it makes sense that you'd be better with less bacteria.
Your case does sound like Crohn's. Hope you get a dx soon,
Gail
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05-07-2010, 05:12 PM   #11
Bikeguy
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After eating or drinking something I shouldn't, my eyes begin to feel like someone is blowing on them. Of course, the wind sensation is not there but the drying and slightly burning sensation is very clear.

Does anyone feel that probiotics are of help? I've been taking them in pill form for a couple of years. I really can't say if it helps or not. I also sometimes drink Kifer. At least I know the probiotics are alive in that stuff.

Last edited by Bikeguy; 05-07-2010 at 05:15 PM.
05-07-2010, 08:04 PM   #12
Pirate
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Welcome to the forum, Bikeguy. Hope you get answers soon.

What kind of bike are you riding? Motor or petal?
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05-11-2010, 05:48 PM   #13
Bikeguy
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I ride a 1984 Redline Mountainbike and a 1994 BMW K1100LT. Like them both.
05-11-2010, 05:53 PM   #14
MikeinBklyn
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Uveitis is a common symptom of Crohn's. I for one get a dose when I'm flaring. It is as you described Bikeguy.

Hope you get better soon.
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