Hi All--Some Questions to All Crohns, and My Story

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Aug 14, 2010
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First, this is an amazing forum. I want to tip my hat to all administrators and members here--very imformative and helpful community!

I was hoping to share my stomach issues/symptoms. I assume it is either crohns or IBS most likely. I haven't been officially diagnosed, and if it doesn't get better, I will go to the doc soon. But I would love to hear from people who know they have this for sure.

Okay, so this all started when I was around 17-18. I would notice that occasionally, I would get the most crazy stomach cramps while using the bathroom (or just before). I didn't get diahrrea all the time, but when I had these bad cramps, I usually had it. No blood though.

Around this time, I also developed a strange hives condition (called cholinergic urticaria). To make a long story short, I get prickly heat hives when I get hot, exercise, or anything that raises my temperature.

My stomach bothered me off/on, but not enough to go to the doc. It didn't hurt like that every day, but when it did hurt, it made my eyes water. I finally went to the doc about my hives, as I was having reactions daily and it was consuming my life.

I was given some type of steroid shot (don't know what). It seemed to send my hives into remission for about 2-3 years. I also noticed that my stomach issues seemed to vanish during this period.

About 2-3 years later, my hives came back. I also noticed my digestion seemed to get worse. I became lactose intolerant (and I never had issues with that before). I also got weird rashes on my body. My stomach would really hurt and cramp a lot, and I began getting bloated all the time and having occasional diarrhea. Even non-dairy food was starting to give me cramps, gas, and occasional diarrhea.

I also started to get eczema-like rashes for the first time ever. These disappeared when I removed milk and a few other things.

I have managed this for the past 4-5 years by eliminating all dairy, and avoiding processed foods as much as possible. I have had spurts where my stomach hurt and was upset, and spurts where it felt fine.

Lately, my hives are really acting up, and my stomach is too. Here are my current stomach issues:

1. Bloating--lots of bloating around the lower section of my abdomen (despite being fairly skinny)--and I don't drink beer. I get gas and bloating almost daily, even days when eating nothing but cooked rice! You would swear I ate beans.

2. Cramps--Occasional light cramps throughout the day (usually not much, but they are relieved by passing gas). If I eat something with dairy, or with a lot of junk in it, my stomach will cramp really bad before using the bathroom (it hurts mostly around and below my bellly button). This is very intense, and calms down when I am finished.

3. Bowel Movements--Once a day (usually), usually mushy. No traces of blood. I have diarrhea any time I eat a lot of sophisticated foods without taking a probiotic. As long as I eat rice, salmon, lean chicken, lean veggies, etc. I usually don't have diarrhea. Sometimes, the probiotic seems to stop working, and I have to totally stop eating bad foods and eat perfectly healthy for a few weeks.

4. I have tried probiotics w/lactase enzymes (helps, but doesn't stop it 100%). I have tried gluten free diet (helps, but other foods can upset me), have cut out dairy and other foods for the most part (helps but not cure).
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So my question is:

1. Have any of you had the itchy/prickly hives thing with your crohns?

2. Do my symptoms sound like what you have when you were first finding out about it? Or does it sound more like another issue (such as IBS or something)? Were your symptoms more severe?

3. At what point should I see a doctor and/or have some scope/tests done? If I spot blood? If I start getting diarrhea daily? Or what? I do have insurance, but a hefty deductible. So I am trying to hold off until it is 100% necessary.

It seems that as long as I eat like a monk, I am okay (aside from bloating). But when I go out to eat, or eat anything too processed, it really starts to bother me.

Thank so much to all!
 
Hi Bennie and welcome!! I'm no expert but I don't think your symptoms are unusual from what I've read on here. It does seem that your stomach issues responded to the steroids for your skin condition so that would make one wonder as well. I think you are going to have to see a GI to get any real answers though and even then it can be touch and go. Good luck!!!!
 
Welcome to the forum Bennie Bob! Glad you like it here and hope we can be of some help.

I think since your symptoms reappeared it just makes sense to go to a doctor and hopefully take some of the guesswork out of trying to manage your condition. It is good that you tried altering your diet to see if you could stop the symptoms... have you tried eliminating wheat/gluten from your diet ever? I don't know if your symptoms may be based on an allergy you have to a certain food. A lot of people have IBD/IBS symptoms due to an allergy to gluten (or celiac disease) so it is best to speak with a doctor about your medical history and try and have them diagnose you officially.

Good luck and let us know how things go going forward!
 
Hi Bennie and :welcome:

Good to see you here. Mike has given you great advice, it's great that you are doing all you can to research and control your symptoms. I agree with Mike in that I think you have reached the point where you need to go to the doctor and get a diagnosis. Obviously something isn't right and at least then you will know what you are dealing with and how best to tackle it.

I hope you stick around and welcome aboard!

Take care, :)
Dusty
 
Ditto above, just wanted to say welcome!

Though it may be tough to get an official diagnosis, I also recommend seeing a GI doc. Perhaps there is something they can do at least for the bloating and gas.

Good luck! - Amy
 
Hi Bennie Bob, welcome to the forum. Yes this site is amazing for getting answers and wonderful people here to help you. It does sound like it could be an IBS or IBS, one is a condition whilst the other is a disease. Not everyone bleeds, I don't, yet my sister who has Crohn's colitis does. Bloat and gas can be IBS as well. Crohns can very hard to diagnose, and not all test are conclusive for all of us.

Having seeing Gastroenologist could save you alot of time and money. He could be the one to help you. :hang: keep us posted.
 
Thanks so much for the advice and welcome.

This really is an amazing forum & community. Anyone with crohns that finds this forum will truly be blessed.

I will definitely go to the doc if the symptoms do not get better within the next few days.

Thanks to all who replied!
 
Hi Bennie Bob
and welcome

I think it's time to see a specialist too, just to rule out IBD
Your diet sounds very good, a bit like the low residue diet that I go on when I'm flaring!
I got urticaria whilst on Azathioprine, and sometimes get it in hot climates, my son does too, so we take Piriton in the Spring to ward off prickly heat!

Here's a table to compare your symptoms with IBS

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

good luck!
lotsa luv
Joan xxx
 
Thanks so much again to all who replied. I really appreciate it.

That was a really useful article Joan, so thanks for posting that link.

I am defnitely cleaning up my diet, and I feel a bit better today. I am hoping I clear up, but if not, it will be a trip to the doctor for sure.

Thanks again to everyone!
 

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