later onset Pancreatic Insufficiency or other GI issues

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fel

Guest
Those of you who started out pancreatic sufficient and then later became insufficient -- what did your symptoms look like? My older son was sufficient last year but is now having a lot of GI issues.

Also do any of you have GI issues but still show up as sufficient in testing? If so, what are the symptoms and what treatments are used?

Thanks much!
 
K

katethekid

Guest
I was pancreatic sufficient for most of my life, I'm only now becoming insufficient. I was actually told most cf patients with pancreatic issues (chronic or acute pancreatitis) are pancreatic sufficient. However, recurring damage to the pancreas causes us to become insufficient. It took me losing 35 pounds in three weeks in the hospital during an episode to get that answer. I hope your son begins to feel better!
 
A

AttyMom

New member
I thought I was having pancreatic issues (and so did the drs) with everything coming out liquid. Turns out it was a hernia and (surprisingly) dehydration. Hope it's as simple for your son.
 
M

MichaelL

New member
I am pancreatic sufficient. During the last two years, I've started to have a lot of GI issues including constipation, bloating, gas. My doctors wondered if I might becoming pancreatic insufficient. However, they did a blood test (I don't remember which one) that they said provided that I was still pancreatic sufficient.

I now take PEG 3350 and mineral oil to help with the constipation. I am also having problems with my stomach digesting properly. I take Cisapride for this. These have helped a lot with my GI problems, although I still have a lot of gas that comes out as loud burping.
 
A

alegris

Guest
I was pancreatic sufficient until I was eight years old and then I had a complete intestinal obstruction which required surgery. That was also when I was diagnosed with CF. My parents don't remember me having any GI issues before the obstruction. I still don't take many digestive pills when I eat. Mostly only when I have a big meal.
 
F

fel

Guest
Thanks for your responses so far. He is 18 (diagnosed only at 17) and has constipation, sudden diarrhea, and gas. He also had bright red blood in his stool one evening, which we hope could be from hemorrhoids. A new fecal elastase test is pending. This all started after his last CF center visit, so they haven't offered him any prescriptions for these issues.

He tested fine on his fecal elastase a year ago.
 
P

Printer

Active member
Call his CF Center and ask for an appointment ASAP. His fecal test only shows that he is digesting fats. He may have a bowel obstruction and/or bacterial overgrowth.

Bill
 
F

fel

Guest
Well the test came back and he is still very pancreatic sufficient. I am wondering if maybe it is celiac disease. The CF center sent him to a GI Doc, and the GI doesn't have an appt. open for 2 months. He is on the wait list. Those who say the US has the best health care in the world clearly are not frequent users of that health care...
 
J

jshet

New member
Hi fel, my son has cf and celiac disease. Since you can't get into GI for a couple months, call his cf clinic and ask them to give you a lab slip to check the celiac markers in his blood. Now this will not give a definitive answer, but it will be the first thing the Gi doc will do if celiac is suspected. If these levels cone back elevated, they will probably want to get a biopsy of his small intestine to confirm the diagnoisis. By getting the blood work done prior to his appointment, you can speed things along for when you finally get in.
 
P

Printer

Active member
When us CFers cough and swallow mucus, even in our sleep, it goes into the stomach, mixes with food and goes into the colon. This becomes a glue like substance and sticks to the colon walls.

Start taking Miralax daily. Have the next Doctor that the sees order a belly x-ray.

Bill
 
F

fel

Guest
Thanks this is very helpful. We are going to try the Miralax first and then if it doesn't work try gluten free while we await the doctor's visit. My son hates the idea of gluten free and says that is worse than PI. Recall he was only diagnosed last year so he is not really used to the idea that he has this disorder. He does his airway clearance when convenient, but then gets out of the habit sometimes. I will try to emphasize that not doing it may affect his lungs AND his stomach.

Our CF doc says the celiac blood test is not all that reliable, so I don't think he will order it.

If anyone else has advice, I'd gladly take it.
 
Y

ymikhale

New member
fel said:
Well the test came back and he is still very pancreatic sufficient. I am wondering if maybe it is celiac disease. The CF center sent him to a GI Doc, and the GI doesn't have an appt. open for 2 months. He is on the wait list. Those who say the US has the best health care in the world clearly are not frequent users of that health care...
Click to expand...
Best healthcare is considered to be in France (maybe b/c it is free) but it is not problem free either...
 
F

fel

Guest
Update: he is still pancreatic sufficient but has a bowel obstruction. Now he has to go on a liquid diet for 3 days and take lots of Miralax -- a lot more than we were using originally.

Until this happened, this bowel symptom of CF was never conveyed to me. Now I read that it occurs in 10-20% of adults. Shouldn't it be more commonly known?

Thanks for all your great suggestions!
 
R

Rebjane

Super Moderator
Fel,

Bowel issues are common and known by CF specialists.

I copied and pasted this right from the Cystic Fibrosis Foundation's website.

http://www.cff.org/Adults/GI/Basics/GIMedications/

Bowel obstructions are nothing to mess with. My daughter with CF was born with a meconium ileum (requiring abdominal surgery) at 5 days old. She also had a bowel obstruction , requiring emergency surgery, at 5 1/2 months old due to adhesions from her original surgery. Needless to say; I am a bowel obsessed mom.

Hope things improve for your son and that the Miralax does it's job.
 
F

fel

Guest
Ratatosk: no he hasn't been tested. Is that a blood test? I think they will do that testing when he sees the GI doc.
Rebjane: since my son was only diagnosed as a 17-year-old, we only heard about the pancreas and lungs, and I knew about the sinus issues from personal experience. The center never mentioned GI issues, till now.
 
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