Cystic Fibrosis Support Group

I have a mild form of CF and I mainly have GI problems with only minor respiratory issues so far (I'm 33). Most of my respiratory issues have involved my sinuses and bronchial tubes, so definitely not typical. And I can go for long periods of time where I have almost no respiratory problems at all. However, I have all kinds of GI issues, ranging from some mild problems to other issues that are much more severe. What are your son's GI symptoms? You mentioned a "lazy stomach"... Does that mean a motility issue, like delayed gastric emptying? I have that problem and it was really serious for a while. Luckily, it's improved and I can manage my symptoms now. Let me know if you have any questions. I still don't understand my diagnosis completely because I'm so atypical, but if I can help at all, I will! By the way, do you know what your son's mutations are?

Hi Emily, My daughter is 2 and she is more pancreatic insufficient at this stage with no lung problems at all. She is still tiny, but a bubbly and happy child. She had swine flu in July and got over that quite well, it was confirmed and they gave her tamiflu. My daughter has and unknown mutation from me and 3659delC from her father, which means nothing to me. I was taking her to the doctors for 14 months before they finally gave me a diagnosis even thiough I already knew. Amazing what you learn off the internet. What are your sons other stomach issues? Cheers Karen

Really interesting...I do know that Stewart's gene mutations are very rare. I can't remember them off-hand, I'd have to look them up. Kate - yes his "lazy stomach" is also more commonly referred to as "delayed gastric emptying." He gets full and bloated after one or two bites of food, so it's hard for him to gain the weight he needs to. Can I ask if you have ever had those types of symptoms? It's frustrating, because he gets stomach aches quite a bit. Feels nauseated, but never throws up. I've thought that maybe he needs additional enzymes, but according to his doc, 5 with meals for a 46 lb boy is sufficient. Looking forward to talking to you both more.
Karen -- I didn't know Stewart had CF until he was three years old. The only problem he was having before diagnosis was "failure to thrive" so docs didn't suspect CF. I knew something was wrong, had him tested for gluten allergies, crohns, you name it. I think mothers should always trust their guts when it comes to their children. Wouldn't you agree? If that is your little girl in your profile pic, she is adorable!! I wish you the best and hope she continues to do well.
** I am going to look up what Stewarts gene mutations are..maybe I can find someone else with the same.**

Emily

Hey Cooper is only 3 now but so far he seems similar he has alot of ups and downs with his stomach but I cant remeber the last time he had a respitory problem (knock on wood)

Hi, Emily. Yes, I've had those symptoms of bloating and fullness after only a few bites of food. I also had intense abdominal pain and the worst nausea I've ever experienced. As a result, I lost a lot of weight and was really malnurished for a long time. Luckily, I'm much better now with more mild symptoms. I've gained weight and am much stronger than I was. Do your son's symptoms fluctuate, or are they pretty consistent? Do his doctors attribute this particular GI problem to CF, or do they believe there is another cause? My doctors can't seem to agree as to whether or not this particular problem is related to CF. Since my symptoms are atypical anyway, I tend to believe it's related to CF since all of my other GI problems are, but who knows. It might be helpful to know what your son's mutations are, even though there is a lot of variability in symptoms presentation even when people have the same mutations.

I hope your son is doing alright. These GI issues can be horrible...

just wanted to say my girl is compleatly lung issues she is pancreatic sufficiant and has no major issues in the tummy side of things she is little but so am i and her dad. isn't it amazing how different they all are like kate 33 with no major lung issues is awesome and a lady not diagnosed till she was about 62 or something like that just makes me smile that they are not all the same and maybe they won't all follow the same fate as the past generations