Some Questions . . .

[AndiGirl]

This is my sixth year of being diagnosed with Crohn's Disease. These are some questions that I've never been able to find any answers to, even with some of my research.

Why do Crohnies seem susceptible to GERD or acid reflux? I understand that you can have one without the other, but why do so many Crohnies suffer from acid reflux?

Are there people who have the disease without the symptoms? I know a lot of Crohnies suffer chronically with the disease, but are there people who can have one or two bouts (flare-ups) and never suffer again?

I have noticed a familiar pattern with my CD. This is when a flare-up is on the way or in progress: nausea, loss of appetite, weakness and fatigue, diarrhea or constipation, horrible joint pains, then the flare-up is over. My flare-ups always seem to follow that pattern. I might get mouth sores, severe acid reflux, painful cramping, or lower right-sided pain; but the pattern that I mentioned seems very consistent. Has anybody else noticed a pattern?

 

[Rebecca85]

1. Maybe a side effect of meds, minor inflammation in the stomach/ oesophagus area, maybe acid production gets out of whack just because the digestive system is out of whack? In my case, I'm pretty sure I have a hernia triggered by pressure change and vomiting during a plane ride.

2. Yes, there are people who just have the one flare up, I think it's around 10%? Maybe there was a bunch of triggers that came together to cause the flare (eg smoking, illness, stress, nsaids) and then they never get quite the same combination again.

3. I only had the one major flare, so I don't know about a pattern, but all I noticed was I caught a lot of minor illnesses in the run up, then bam! Intense abdominal pain and vomiting. It was so sudden I thought it was another virus.

 

[25times]

I'm not sure about the acid reflux thing. It makes sense that there would be a connection, since crohns can affect anywhere from the mouth to the anus. I only started experiencing heartburn during this last flare, which was the worst one I've had yet. I find that I get really bad heartburn right after taking certain medications. It could be due to minor inflammation of the stomach or esophogus.

I have met a couple people who have crohns, who have only ever had one or two flares in their entire life. They eat what they want, take one or two medications, and when I tell them what I've gone through, they are absolutely shocked. They're the lucky ones, that's for sure.

Since I was only recently diagnosed, I can't really remember what lead up to my flares. I didn't know I was actually sick, so I never kept track of what was going on. I always had the diarrhea and I often had stomach pain. This is the first time I've lost a large amount of weight, though. And this is the most painful and longest one I've experienced.

 

[crazycanuck]

Well I'll agree with the previous two posts. Not a clue about the acid reflux, GERD thing though.

Definately people can have Crohn's without symptoms and actually I met one guy who was sick one time. Asacol is the only medication he has taken and hasn't had a flare since he was diagnosed about 15 years ago now.

No pattern whatsoever for me other than I get sick at exam times since grade 10 when I as diagnosed but that's due to stress which is a surefire trigger for me.

 

[silvermander]

My Mum rarely has any trouble with her Crohn's. If she eats something she shouldn't (last week was beet greens & she should have known better), she will get a bit ill feeling, but only a couple days.

She flared from age 12-16, was on prednisone, then had a small bowel resection. Sometime in her 40's she had a blockage and surgery. She's also had her gallbladder removed after a couple days of being very ill.

Other than as a teen, she hasn't taken any meds for Crohn's. So she is very lucky, but has had to watch me struggle almost everyday from it which has to be monumentally hard.

So it is possible to have very few problems with Crohn's, even though it seems like most of us here aren't that lucky.

 

[Pierreracine]

I have had just 2 flares within the last 25 years following my operation (ileum and upper colon removal).

 

[DougUte]

I have acid reflux also. Don't know if there is a tie or not.

 

[bruscar]

Hey,

As far as the acid reflux goes, my stoma nurse told me that any gas i potentially may have is more likely to come up as oppose to down (into my bag).

My G.I. did reckon i had crohns for approx 3yrs before the pain got bad enough, i did put my d etc down to bad meals or hangover symptoms etc.

As for the regularity and location of pain. Well i think that sounds very like the ileum region and i personally think that anyone with crohns in that general area will always have an irritation where the colon begins. I think it is almost like the customs of the bowel area . . . so if the disease is trying to spread into the colon from the small bowel its like "have you anything to declare?"

As always , wishing you well Andigirl

Bruscar

 

[AndiGirl]

Thanks! You hit it right on, Bruscar. My CD is mainly in my ileum. I started noticing the pattern just over the past three months. I think the acid reflux is the worst. I wish there was a quick and easy way to do away with it forever.

 

[bruscar]

i know, it can be tough going too.

Not great when you want to try a bit of kissing and whoooeeaauuiip !! happens !!

Haha, chin up andigirl !!

x

 

[DougUte]

Mine is in the ileum area (my terminal ileum was removed). It has reappeared at the surgery site.

 

[littlemissh]

Hi Andi-girl,
Hopefully your reflux will get a bit better when you have finished the entocort. All steroids cause gastric irritation. Have you ever had omeprazole/pantoprazole or any of the 'zoles' (known as ppi's) as they are better acid supprsesants than ranitidine.

Also drugs like domperidone and metoclopramide make the stomach empty more quickly and so often help reduce the amount of reflux as the stomach is emptier much more quickly.

 

[25times]

Yeah, my doctor gave me a two month sample of nexium, which I beieve is omeprezole. After reading the side effects, I decided that my heartburn was not bad enough to deal with more side effects, and I've stuck to Tums smoothies with calcium. They work quite well for me most of the time, and I love that they are also a calcium supplement.

I have also been prescribed maxeran, which is metaclopramide. I've used it before, for nausea, and it worked alright. All it does is empty your stomach faster and, in theory, prevent any issues you may have from having a full stomach. I've never used it for heartburn, but it could work.
I hope your acid reflux will be controlled soon, cuz I know how horrible it can be. I get super nauseas from heartburn, and it's such a gross feeling.

 

[Dayz]

I have heard of many people who have gone on pred and went into remission for years. I tried pred and became ill on my third day (still undiagnosed) but even my doctor told me that she has noticed that pattern. I know someone who has had it for a year and has only had that one major flare so far but she seems pretty confident in that she can control it.

 

[Dunbar]

Mine follows a similar pattern, except my tip off is the joint pain. My big toe knuckle starts and she's down hill from there if I don't watch it.
I think gerd & crohn's go so well together because they share lack of enzyme activity, low or hyper acid (depending on your system), bile and liver function. Check out ' leaky gut syndrome'. I consume very strong ginger tea when my acid production goes into overdrive, I will also drink cold peppermint tea both work well.
I was diagnosed in 09, in hindsight I had a flare 24 years ago nothing to mention in between. Mind you,I have had a lot to mention in the last two years!!

 

[Shirleyb]

Hi AndiGirl, my pattern before a flare up is exactly the same as yours. A work colleague of mine also has crohns and has only been ill a couple of times in about 8 yrs. I find it hard to understand sometimes as I have been having regular flare ups, in fact have not been well for about 3 yrs. Taking 6MP and just had another course of pred. as felt really ill. I do wonder sometimes if this will ever settle down. Shirleyb

 

[AndiGirl]

Thank you! I am glad that I have noticed a pattern. I still will go through the flare-up, but it is giving me an idea as to where I am in the process. The joint pains really hurt, but that's usually my signal that I'll be through with the digestive symptoms for a while.