41 years old, unknown GI issues

[zbrennan]

looking for advice/help figuring out my GI issues I have been having for 4 months. Taken blood tests, Ct scan, ultra sound, stool and urine analysis, and colonoscopy (11 months ago). All negative, but latest stool results showed elevated fat fecal. Doctor thinks it bacterial overgrowth and something IBS related. Taking antiboitics and low FODMAP diet but doesn't seem to be working. I've had stomach pain/discomfort for 4 months but doctors having trouble pin pointing the problem. I've lost 30 pounds in the past 4 months; not sure if its from anxiety, depression, and/or GI ailment. I see a CF team at Kaiser-Sunset (california), every 3 months but they lack a GI doctors who specializes in CF. The pulmonary team is solid. I've been getting multiply opinions starting from: Im okay, just being a worry wart, Im fine nothing is wrong because test show nothing wrong, to it might be IBS, to it might be Bacterial Overgrowth. Meanwhile, my upper, middle discomfort seems to be getting more frequent and lasting longer. Yesterday, my stomach was hurting all day. And when I woke up it starting hurting again right away. I've never had GI issues so this is new to me and is freakin me out. Matter of fact, my psyche has been shattered ever since being diagnosed at 37 y.o. Everytime I get sick I think its life or death. And nobody understands what im going through at home.

Please help with a doctor or remedies, or possibly what could be wrong with me.

Thanks,
Zack

 

[Printer]

Zack:

Google, Steven D. Freedman, MD, PhD. He is in Boston at the Beth Israel Deaconess Medical Center.

I remember having similar pain about 15-20 years ago. When we swallow mucus, and we all do even when sleeping, it eventually mixes with our stool. This becomes a glue like substance and adheres to the walls of the colon. This will cause the pain of which you speak and even cause the gut to extend like a beer belly.

Try taking a cap full of MIRALAX every day. Miralax is mild and slow working so be patient.

Bill

 

[MichaelL]

Hi Zack -- sorry to hear about your GI problems. I was diagnosed at age 34, so I'm familiar with being diagnosed late in life.

I've been having increased GI problems during the last two to three years. Mine seem to be caused by a number of differing issues. Since you were diagnosed later, are you pancreatic sufficient? If so, have they looked to see if you've switched over to being pancreatic insufficient? This did not end up being my issue, but it may be worth checking out.

Have they done a gastric emptying study? I found out that my stomach was very slow to digest food, which made me feel full after only eating a little bit. They initially put me on Domperidone followed by Maxeran. Neither medication worked for me. Finally, they put me on Cisapride. It's made a huge difference for me. Cisapride was taken off the market due to dangerous side effects. However, my doctor fills out special paperwork so that I can take it. (I also have to get EKGs to make sure I don't have the serious side effects.) I'm in Canada, so I don't know if you can get it under special approval in the US. My understanding is that many people in my clinic are also on Cisapride.

Another GI problem I've been having is serious constipation. An abdominal x-ray can confirm whether or not this is an issue. Initially, I had to drink a ton of GoLytely to clear myself out. Afterwards, I take 1 1/2 doses of Miralax twice a day to keep me regular. In addition to the Miralax, I also take 45 ml of mineral oil daily. This is supposed to help things move along. I do have to occasionally repeat the GoLytely as my system gets clogged again.

In terms of small intestinal bacterial overgrowth, I've been told the symptoms for this are that bloating/feeling of being full doesn't start until 2 or more hours after you've eaten. The doctors also said that my stomach will get noticeably larger after eating. They treated me for this for a while, but have since upped my dosage of Cisapride.

I also had pancreatitis a few years ago, which was awful. It's indicated by a strong pain just below your rib cage. It doesn't sound like this is your issue based on your symptoms.

Does your CF clinic have a GI doctor they work with? I'm lucky that my clinic has CF doctors who specialize in GI symptoms. I would suggest you ask for a referral to a GI doctor familiar with CF.

Good luck -- I hope they can figure out what's causing your GI symptoms. They can make eating so difficult.

 

[RobinB29]

Have you had an upper endoscopy to check for Celiac disease? It is frequently missed and sometimes a blood test will show it but not until the damage becomes so severe that your body develops antibodies to gluten. I have CF but I never experienced the level of GI issues I had prior to my diagnosis.