Crohn's Disease: Excessive Belching and Bloating

[japanworm]

Hi! I'm new here.
I'm getting really frustrated with my symptoms, because nobody else seems to have (only) those symptoms and nothing I do seems to help.

I have massive gas in my intestines.
It's just there. It's not bloating. It doesn't go anywhere. I don't have any pain or cramps. I'm very slim and so that massive bloated belly is not a very nice sight. I've had that for over 2.5 years now.
At first it just happened a few times a week and went back to normal.
Nowadays I have it 24/7. And after eating something it's getting even bigger.

For over a year now, a second symptom came up. Belching.
I'm burping a thousand times or more per day. Basically nonstop. I have my mouth closed, so it sounds more like I'm grunting.
It's only air / gas, no acid fluid is involved ever.
It's not initiated by myself, it just happens and I cannot suppress it.
Only when I speak or sleep, it doesn't happen (for now) .....

It's really hard to hide it at work ... or in general. And I'm suffering quite a bit because of it.

No other symptoms. No pain, no cramps, no vomitting, no changes in weight, my digestion works just fine.


Here's my background story:

2003:
Suddenly a drop in weight and constipation.
Blood check revealed immediately thyroid hypofunction.
Seince then I#ve been taking hormones. Never had any issues since then.

2005/2006:
The most stressful time of my life.
My mother died of cancer at a very young age. Final exams at my university, problems with my apartment etc.
At that time I had a stinging pain in my chest behind the left side of my ribs.
I also lost weight (I'm already underweight under normal circumstances at least according to my BMI).
I barely had any energy. It felt like my body wouldn't process any of the food I was eating.

At first they thought it would be a gastric ulcer. They did a gastrocopy, but found nothing. After that they did a coloscopy. They said it could be the Crohn's disease, but all the following examinations (blood, MRT, ultrasonic etc.) could not confirm it.
I just was told to live my life without thinking about the disease. And that's what I did.

2007/2008:
The stressful stage of my life was over and the symptoms had vanished completely. I moved to Japan for many years where I never had any issues at all.

2015:
At the beginning of that year I moved back from Japan to Germany (my home country). Mid-2015 I noticed that my belly is bloated (as mentioned in the beginning).

2016:
As the bloated belly got worse and worse, I went to a doc. They found my CRP value to be high and thus they did a gastro- and coloscopy.
They found a mild gastritis and again Crohn's disease.

I got meds with cortisone that only affects the intestines. Unfortunately, the inflammation was still there after that. A MRT also confirmed that.

Then I tried something else called "Salofalk" (Mesalazine). I've been taking this for 2 months now. No changes in my symptoms at all. And no idea if the inflammation is still there, because my CRP is always low although the MRT has shown that the inflammation is still active.
My gastro explained that this is quite normal if the inflammation is between the small intestine and the large one.

So .... I'll never know if the inflammation is gone.
I suppose once the symptoms are gone, but at this point I don't think they're necessarily connected to my Crohn......

After all I don't have typical Crohn symptoms at all! (And I'm thankful for that ...)

But the continous burping is driving me insane!


I've already been tested on all food allergies out there. Negative.
I've also done an elimination diet, only eating white rice and potatoes for 2 weeks. My symptoms didn't change. So, it's certainly not food related.
I've been tested on a misbalance of darm bacteria. Everything is ok.
I've taken enzymes, enterobacteria, meds against gas ............ NOTHING changes anything for me.

I'm also seeing a pychotherapist at the moment, but it doesn't seem to be caused by stress or anything. After all I don't have the symptoms only during certain times, I have them ALL the time and that for years now, without any break.


I have no idea what to do anymore.
I'm still hoping to find someone who has similar symptoms, but ... such a person doesn't seem to exist.

 

[ronroush7]

Have you tried gas x or phazyme? What kind of tests has your doctor run on you?

 

[japanworm]

I don't think the meds you've mentioned are available in Germany, but it seems I've already taken meds that are similar to those.

Tests:
- blood tests
- stool samples
- ultrasonic testing
- coloscopy
- gastroscopy
- MRT
- food allergy tests (lactose, fructose, glucose)

What I've tried:
- gluten-free diet
- elimination diet
- gas-reducing remedies (fennel, caraway, anise, etc.)
- abdominal breathing

Meds I've taken:
- gas-reducing meds of all sorts
- Budenofalk
- Salofalk (Mesalazine)
- enterobacteria
- enzymes

 

[ronroush7]

I don't think the meds you've mentioned are available in Germany, but it seems I've already taken meds that are similar to those.

Tests:
- blood tests
- stool samples
- ultrasonic testing
- coloscopy
- gastroscopy
- MRT
- food allergy tests (lactose, fructose, glucose)

What I've tried:
- gluten-free diet
- elimination diet
- gas-reducing remedies (fennel, caraway, anise, etc.)
- abdominal breathing

Meds I've taken:
- gas-reducing meds of all sorts
- Budenofalk
- Salofalk (Mesalazine)
- enterobacteria
- enzymes

Keep going with the doctor until he can get you relief.

 

[ronroush7]

Keep going with the doctor until he can get you relief.

It seems like with me gas relieving pills have not done much.

 

[japanworm]

Well, there's not much left that can be done.
And I'm worried about what will happen once we've reached that point ....

 

[Guerrero]

Hi japanworm,
Have you done an mri of your abdomen recently to assess eventual inflammation or strictures of your small bowel?
You symptoms could be explained by some strictures of your bowel that retain gas or liquid or food.

What is the entity and location of your disease activity based on your last exams?

 

[japanworm]

Hello,

I've done a MRI.
Result: Ileitis terminalis with mild stenosis and thick intestines wall.

Sorry, that's all I know.

 

[Guerrero]

Then there you go, maybe food and gas take more time to pass and you get a bloated belly.

Medication like biologics may help to ease thickening if it is due to inflammation. Otherwise if it is due to scar tissues, surgery could help, but is need only if your bowel is dilated before the thickening and probably is not as your doctor and mr didnt mention anything.

 

[Guerrero]

Then there you go, maybe food and gas take more time to pass and you get a bloated belly.

Medication like biologics may help to ease thickening if it is due to inflammation. Otherwise if it is due to scar tissues, surgery could help, but is need only if your bowel is dilated before the thickening and probably is not as your doctor and mri didnt mention anything.

 

[japanworm]

I don't have any problems with my digestion, though.
I get to empty my intestines about 3 times a day.
They also didn't found any proof that there's really something "stuck" or has difficulites in passing.

It seems to be a rather mild form of inflammation.
Operation was never mentioned.

 

[Guerrero]

Hopefully nothing is stuck, but you never thought the bloated belly and gas is due to food that maybe stay there more time and then creates gas? Nothing too worry about if doctors say that's ok, but maybe stronger treatments like biologics could help.

 

[Jennifer]

I agree with Guerrero. Mesalamine meds really don't do too much in regards to treating Crohn's disease because they're topical and Crohn's can affect all layers of the intestines. Those meds are a lot better for things like Ulcerative Colitis.

I have a stricture and adhesions from a bowel resection. I've had your exact same symptoms. It's basically a partial obstruction. Foods just aren't passing through the way they're supposed to so they pile up at a section which produces gas and can lead to bloating and burping like you mentioned. If it continues to pass through then you may not feel the pain in your abdomen and back that it can eventually cause but when it starts getting stuck more and more which could later lead to nausea, vomiting and fever then you're more than likely dealing with a full obstruction at that point. Mine eventually became a full obstruction and I was hospitalized for it but it cleared on it's own and now I deal with partial obstructions from time to time. Even if you still have regular bowel movements you can still have partial obstructions. That's why they're called "partial" because if they were full obstructions then nothing would pass through.

Basically you're symptoms are classic partial obstruction symptoms. It doesn't really require surgery or even dilation unless it starts affecting your life to the point where you can't function. Surgery is always a last resort but if your tests are showing active inflammation and you do in fact have Crohn's then you'll want to treat it with something stronger than Mesalamine meds. Personally I do well with immunosuppressants like Mercaptopurine. Never had any side effects from it but everyone is different. Sometimes it's best to go with a top down approach (you're currently taking the bottom up approach by treating it with Mesalamine) and go straight for the biologics to stop the inflammation in it's tracks. If they work for you then that's great. I hope you and your GI are able to find a better treatment plan for you because this one does not sound like it's working.

 

[Justanothercp]

Those were 2 of my major symptoms when I was battling a stricture that was getting worse. I ended up having a resection. I remember say “I feel fine if I just don’t eat” , but clearly that was not a very good long term solution..... Wishing you well.