Remission and now a flare up

[Caillie]

Hi,

I was on this board years ago when it was run by Sally. So sad to hear she is gone! But glad to see there is still a board!!!

I was diagnosed in 2003 with CC, and treated for a while with Sulfasalazine which worked well. Eventually I tapered down and then stopped the med, and stayed in remission since (apart from the occasional minor episode which would quickly resolve).

But for the last 3 weeks it has been back with a vengeance. Yuk!!! I have D up to 8 times a day, sometimes less. Very watery and explosive (sorry for the gross description). Almost as bad is the VERY LOUD gurgling in my stomach and intestines. It is so loud that people across the room hear it and comment on it. It sounds like water bubbling in pipes.

I went to my doctor and had bloods done and also had to take a stool specimen to the lab. My doctor said that we need to rule out that it isn't something like colon cancer as well, before we can talk about meds. In the meantime I am using Immodium which hasn't helped a lot.

I rang the practice nurse yesterday and she said all my bloods are fine. I tested negative for giardia and cryptosporidium. Still waiting for the results of the faecal occult blood test. I am going back to the doctor tomorrow to see if he can prescribe me something even though the FOB test isn't back yet.

Has anyone else had experience of the very loud noises and if so do you have any tips as to what might shut it up?? LOL.

I work in an occupation where I deal with members of the public all the time, and it is very embarrassing when they hear my gurgling and bubbling!!

[tex]

Hi Caillie,

I'm sorry to hear that you're having a symptom flare, but welcome back. Yes, we still miss Sally a lot. She was a pioneer when she created the first discussion board dedicated to MC.

The loud gurgling noise that you describe is a very common symptom of MC during an active flare. Anyone who is familiar with MC will recognize it as a symptom of the disease (as you say) across the room. Strangely, most GI specialists don't have the foggiest idea that it is associated with MC. If your GI specialist understood the disease, she or he could have immediately told you that you are having an MC flare, not a problem with bacteria, parasites, cancer, or anything else, because that loud gurgling noise immediately identifies the disease.

The only way to stop the noise that I am aware of is to stop the inflammation that is causing the MC flare. Most of us here do that by changing our diet to avoid the foods that cause the inflammation. When we stop the production of antibodies that cause the inflammation, our gut can heal.

You can temporarily stop the inflammation by taking budesonide (you'll need a prescription from your doctor), but in most cases, after the budesonide treatment is ended, the symptoms will return after a few weeks. The budesonide should stop the flare within a few days to maybe a week or 2, so it is the fastest way to stop the noise. Of course since it is a corticosteroid, most doctors will not be willing to prescribe it for long-term use.

That's why most members here change their diet to totally avoid gluten and dairy when they begin taking budesonide, so that hopefully when they have to wean off the medication, the diet changes will maintain their remission without the drug. Many here control their symptoms by diet alone (without any medications), but it takes longer for the symptoms to stop without the corticosteroid.

Again, welcome back, and please feel free to ask anything.

Tex

[Caillie]

Hi Wayne,

Thanks for your reply and your welcome.

I think I could give gluten free a go. I'll try anything to stop this hell! I love bread etc but now there are so many gluten free alternatives available in the shops and supermarkets. I have been thinking lately about eating more natural, and less processed foods anyway, so this is a good reason to start.

So a person can be gluten sensitive yet still be symptom free for a long time? I'm trying to get my head around all this.

I'll ask my doc tomorrow about the steroid. Sounds like a plan!

Cheers,
Caillie :-)

[tex]

So a person can be gluten sensitive yet still be symptom free for a long time? I'm trying to get my head around all this.

That's a good question. Yes, it's possible, because many celiacs are asymptomatic. Spontaneous remissions are not as common with MC as they are with the other IBDs, especially for such a long period of time, but they do sometimes happen.

It's also possible that your flare was triggered by some recent event, such as a a very stressful situation. Even something such as stopping a long-term smoking habit has been known to result in enough stress to cause an MC flare.

But here's something to consider: Did you by any chance start taking any new medications (or switch medications) during the month or so prior to when your flare started? Many medications are known to trigger MC. A partial list includes NSAIDs, antibiotics, tricyclic antidepressants, SSRIs, SNRIs, ACE inhibitors, beta blockers, statins, and bisphosphonates, for example. If you have been taking any of those, there is a good chance that they might be the cause of your flare.

And if that is the case, some patients are lucky enough that just stopping the use of the medication can be enough to bring remission, and as long as they avoid that class of drugs in the future, they may remain symptom-free. For others, food sensitivities are triggered and so they have to change their diet in addition to avoiding the drug that caused the problem.

For some women, hormone replacement therapy, or even changing a contraceptive can trigger MC, even if transdermal patches are used rather than oral contraceptives. Hormones can sometimes have a very powerful effect on the disease.

Anything that causes significant physical, chemical, hormonal, or emotional stress on the body can trigger a flare. I even had a short flare last November that was triggered by a kidney stone. Fortunately it didn't last long.

You're very welcome,
Wayne

[Gabes-Apg]

Callie,
I am not sure how old you are, but as we age, our bodies ability to cope and heal from inflammation reduces, so that is maybe why the flare up has happened.

In line with Tex's response, has there been any new medication, supplement??
Have you changed workplace or location where there are different environmental influences?

And maybe this is the time that you do have to give up gluten ... And maybe other ingredients that are known common triggers.

If you read the posts in the success stories area, you will see how it has been for others and what it took to attain or be on the path of wellness...
And the key triggers that was affecting them.

Hope this helps.