Putting it out there to my networks - Pyloric Stenosis, anyone???? Also, be your own advocate
Nadi
Member Posts: 619 ✭
Hi all
I got my 4 year all clear mammogram and ultrasound in October (Yay). But some of you know that after BC treatment (surgery, chemo, radiation, Herceptin) was finished I was diagnosed with Achalasia a disease that makes it difficult for food to get into the stomach.
I had major surgery for Achalasia last year. Things were good for a while. Then in the last couple of months I had severe bloating and several ambulance trips to hospital with the worst abdominal pain I've ever experienced in my life. I found myself back on the medical roller coaster for the third time. Scans showed a thickening in my small intestine. However, the CT I had last week showed nothing abnormal. Finally, after an endoscopy, on Friday I was diagnosed with Pyloric Stenosis - a condition which is apparently rare in adults, that blocks food leaving the stomach.
I just want to reach out to anyone who has, or know of someone who has Pyloric Stenosis. It's hard to make decisions about surgery if I can't find information on what others have personally experienced. I would be grateful to hear from anyone.
I also want to emphasise how important it has been for me to be my own health advocate. It took ages for me to be diagnosed with Achalasia and thankfully I was only stage 2. I had Achalasia symptoms for 2-3 years before being diagnosed with BC. During BC treatment all my Achalasia symptoms were put down to side effects of chemo or radiation. Nobody was even looking for something else, despite me telling them I thought something was going on. With BC, despite me being the one to find changes in my breast during a self exam I was initially told it was nothing as it wasn't a lump, just a thickening, and chances were it was nothing as I wasn't 50. This third time round even with an abnormal scan from back in August 2018 and problems that were escalating over a few months, the doctors still thought my symptoms could be par-for-the-course side effect of chemo that I had in 2016! It's only when I kept on going back to my specialists that they finally did extra tests and the endoscopy which showed that the scans were correct and there was a physical abnormality that explained all my symptoms.
I used to feel silly when I would tell a doctor I thought something was wrong. But now I acknowledge that I know my own body better than the medical professionals and it serves me well to listen to it. I will never feel silly again.
Wishing you all the very best.
Nadine
I got my 4 year all clear mammogram and ultrasound in October (Yay). But some of you know that after BC treatment (surgery, chemo, radiation, Herceptin) was finished I was diagnosed with Achalasia a disease that makes it difficult for food to get into the stomach.
I had major surgery for Achalasia last year. Things were good for a while. Then in the last couple of months I had severe bloating and several ambulance trips to hospital with the worst abdominal pain I've ever experienced in my life. I found myself back on the medical roller coaster for the third time. Scans showed a thickening in my small intestine. However, the CT I had last week showed nothing abnormal. Finally, after an endoscopy, on Friday I was diagnosed with Pyloric Stenosis - a condition which is apparently rare in adults, that blocks food leaving the stomach.
I just want to reach out to anyone who has, or know of someone who has Pyloric Stenosis. It's hard to make decisions about surgery if I can't find information on what others have personally experienced. I would be grateful to hear from anyone.
I also want to emphasise how important it has been for me to be my own health advocate. It took ages for me to be diagnosed with Achalasia and thankfully I was only stage 2. I had Achalasia symptoms for 2-3 years before being diagnosed with BC. During BC treatment all my Achalasia symptoms were put down to side effects of chemo or radiation. Nobody was even looking for something else, despite me telling them I thought something was going on. With BC, despite me being the one to find changes in my breast during a self exam I was initially told it was nothing as it wasn't a lump, just a thickening, and chances were it was nothing as I wasn't 50. This third time round even with an abnormal scan from back in August 2018 and problems that were escalating over a few months, the doctors still thought my symptoms could be par-for-the-course side effect of chemo that I had in 2016! It's only when I kept on going back to my specialists that they finally did extra tests and the endoscopy which showed that the scans were correct and there was a physical abnormality that explained all my symptoms.
I used to feel silly when I would tell a doctor I thought something was wrong. But now I acknowledge that I know my own body better than the medical professionals and it serves me well to listen to it. I will never feel silly again.
Wishing you all the very best.
Nadine
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Comments
I did find this group which might be helpful
Good that you finally have a diagnosis.
What will the surgery entail? My husband had his pylorus removed due to stomach cancer, also his pancreas relocated as well. He was back eating normal meals within 4 months of surgery (using all the tips I’d mentioned to you in previous PMs.) .... and he went on to compete in international triathlons, winning his age group most times.
All the best xxxx
Pleased to see you here and I do hope someone can share their experience.
Just wanted to say that hopefully the diagnosis can give you a chance at sorting it out once and for all.
Best wishes
Take care xx
It is so good to know the outcomes your hubby achieved after surgery. He's an inspiration and it's stories like these that really bring me comfort. All my best to the both of you.
Nadine