[v5118lKftfk]

Hello,

I'm wondering if some of the more seasoned pners could take a guess / offer thoughts on what the likelihood that my recent strange digestion problems are linked to my particular type of pn.

I developed mild-moderate pn from chemotherapy two years ago. I couldn't stand for more than an hour (i.e. couldn't do long shopping standing looking at products) or walk more than a couple of hours (i.e. couldn't do shopping at a mall), numbness, tingling, zaps, cramps, sensitivity to cold.

Just in recent months, I have been thinking my pn might be fading away (hurrah!!! - but let's reserve judgement). I noticed I could start standing / walking longer, less cramps, zaps, etc.

However two months ago I developed strange pains in my upper abdomen which I seem to live with mild-to more strongly constantly, lessening sometimes but never fully going away. I often feel a sharpish "pulling like" pain in the center just below the ribs where they tell me my stomach is and I feel a general pressure below my diaphragm where perhaps my upper colon is. However I have no constipation, diahhrea, everything empties normally, no gas, no heartburn up my esophagus.

I don't believe the doctors know what is going on. First, they said it was gastritis but a gastroscopy and stool and blood lab results showed nothing and no viruses. They've also checked my heart with an EKG, liver, pancreas, kidneys, abdomen sonogram and had me completely empty my bowels and use Pronton Pump Inhibitors, and anti-constipation stuff that gets stuff moving. Then they were afraid my ovarian cancer was back but a CT PET showed nothing (hurrah!). They've held off on the colonoscopy saying I just had one two years ago for my cancer (dubious logic - I'll probably press on this one). Now they are saying perhaps my colon is sluggish, not pushing food out quickly and so food is fermenting and building up gas which is causing pressure.

They want me to drink mild anti-constipation powder for the next 6 months to year, they say I need this continual treatment to get my colon moving. I am very suspicious of doing this longterm. I have a bias that classical western school medicine is simply pro-pills and actually gets very little training in nutrition or how to work with your digestion naturally to keep it healthy ... however I am finding it hard to find a gastrologist specialist who is integrative/holistic/sees the big picture.

Since my pn is chemo based, relatively mild and seems to be getting better, and the heaviest pn onset was 2 years ago with my first chemo infusion and fading since then, I have been discounting the abdomen problems as pn-related. I am 51, post menopause with ovary removal, so I thought perhaps it's just aging.

However, on the other hand, I've always had great digestion, so this sudden onset is very strange. Also I am a real foodie, so my great healthy eating doesn't seem to be paying off. Also the fact that it's not going away and all the standard things don't seem to be helping is suspicious.

Any thoughts on how likely this is pn related?

Any advice on what to do next? What to ask for or push for?

The doctors here are pathetic. They don't really listen to my symptoms, just give a quick five minutes where they simply tell me pills to try. I have to twist their arm just to ask "what should I be eating / not eating". I don't think they are rigorous in figuring out what this really is, I have to push for everything.

Thanks for any thoughts.

Natalie

P.S. I can't resist .... Just to add a weird story of why I think some of these doctors are pathetic ..... When I had my gastroscopy, they put me under. When I woke up from being under, I found myself dressed, with shoes on, my handbag on the floor next to me, sitting on a make-shift shelf, propped up / leaning against a concrete wall so I wouldn't fall over, in a busy open hallway with people walking back and forth. Waking out of anesthesia this way was very disorientating and it took me a minute to figure out where I was, where they had put me, what they had done with me. They didn't even give me enough time to let me wake up from anesthesia naturally in my bed but instead got me to put on my shoes, etc and propped me against a wall so they could have the bed!! This freaked me out. I complained to the nurse that this is a very unprofessional way to handle patients that put their trust in them to be very vulnerable under anesthesia. She said "well you didn't complain to us when we moved you"(!) I said that if you have to lean me up against a concrete wall to finish sleeping from anesthesia and I am not awake enough to sit upright in a lobby chair under my own power, then I am not capable enough to look out for myself, give you clear feedback or take care of myself and my belongings in a busy hallway among strangers. They still didn't get it. It really freaked me out how they didn't take care of me while still under!

[St George 2013]

My mouth is still hanging open from your PS note.....what type of facility were you in ? I am totally shocked by this treatment. WOW !

I have severe small fiber neuropathy. This came on full force one month after finishing my last chemo treatment (taxol-carbo) for a rare uterine cancer. It's Papillary Serous and usually found in the ovaries. I was lucky that it had not gone through the uterine lining.

I went into chemo as a pre-diabetic and had some small issues with rising blood sugar during treatment and a few tingles in the feet and mouth. As I look back now I already had symptoms of SFN that I had just brushed off for years. The dr's all lean toward diabetes as the reason for my SFN but I believe it had to be a combination of the two. I think the chemo just escalated the SFN. My last chemo was March 2013 and I'm in remission now. They were checking me every 3 months but we're going to 6 months now.

I said all that to get to the point that I have severe pains that come and go lower than yours. Right above my pelvic bone that goes from one side to the other when it acts up. I had a spell a few weeks ago and walked bent over all day and then it took 2 or 3 more days to totally go away. That's the worst spell I've had.

They cannot find a reason for these pains. I've had CT's, ultrasounds, x-rays and so on but everything comes back negative. Some dr's think scar tissue, some my SFN and one other thing I can't think of right now.

Not sure any of this info will help you but we don't have many chemo PN'ers on here so I wanted to respond to you. At least I don't think we do

Take care and I know others will come along and offer other info.

Please keep us posted.

Debi from Georgia

[en bloc]

Natalie,

Just as chemo can cause PN, it can cause ALL forms of PN, to include autonomic dysfunction. Autonomic neuropathy is a subset of PN and causes problems with BP, heart rate and GI emptying. You need to have a gastric empty study done to determine if you have gastroparesis. If you Goolge this condition you may find your symptoms match. If so, then talk to your doctor about getting this non-invasive test (you just eat some contrast laced scrambled eggs and lay down while they do nuclear scans for 2 hours to determine transit time).

Unfortunately, there isn't a wide range of treatments available. BUt life-style change and diet change can help. All depending on where you are located, there are medications available to help. In the US, nothing is approved, but in the UK, Canada, etc you can easily get Domperidone, which can be quite helpful.

If gastroparesis is confirmed, you can eat smaller meals, and follow a gastroparesis diet (you can find info online), but basically avoid raw veggies, fruits, and nuts (cooked/steamed is ok). Grinding your food in a blender is also helpful (the flavor does NOT change, but of course texture does). Also walking after eating is helpful (letting gravity promoted increased transit). Don't eat after 5-6 PM to avoid night time problems and sleep on a wedge pillow to again allow gravity to help movement in the night.

Hope this helps.

[v5118lKftfk]

Huge thanks.

What wonderful help and support.

This information was exactly what I needed and more.

I have been working with several different doctors for several months now and no one is pointing me in the right direction like you guys.

From your information I really feel equipped on how to proceed.

I was feeling overwhelmed with juggling pn and now poorly diagnosed gastric challenges but now at least I can see a reasonable path to explore.

As you can see, I can't gush about my appreciation for your help enough.

I am asking the universe to pay you back for your good Karma you've contributed. 😊😊

Yes, I try posting about my chemo pn as a way of giving back and helping fill up the archives with more threads to help this smaller subset of pners.

Thanks again for your help.

[DavidHC]

I have similar symptoms and I clearly have autonomic issues. It's a tightness or along the lines that you put it. Best of luck resolving it. I'm working on my gut health quite actively, and hope to resolve it, especially since I suspect that it's at the root of my SFN (even if partially).

Originally Posted by v5118lKftfk

Hello,

I'm wondering if some of the more seasoned pners could take a guess / offer thoughts on what the likelihood that my recent strange digestion problems are linked to my particular type of pn.

I developed mild-moderate pn from chemotherapy two years ago. I couldn't stand for more than an hour (i.e. couldn't do long shopping standing looking at products) or walk more than a couple of hours (i.e. couldn't do shopping at a mall), numbness, tingling, zaps, cramps, sensitivity to cold.

Just in recent months, I have been thinking my pn might be fading away (hurrah!!! - but let's reserve judgement). I noticed I could start standing / walking longer, less cramps, zaps, etc.

However two months ago I developed strange pains in my upper abdomen which I seem to live with mild-to more strongly constantly, lessening sometimes but never fully going away. I often feel a sharpish "pulling like" pain in the center just below the ribs where they tell me my stomach is and I feel a general pressure below my diaphragm where perhaps my upper colon is. However I have no constipation, diahhrea, everything empties normally, no gas, no heartburn up my esophagus.

I don't believe the doctors know what is going on. First, they said it was gastritis but a gastroscopy and stool and blood lab results showed nothing and no viruses. They've also checked my heart with an EKG, liver, pancreas, kidneys, abdomen sonogram and had me completely empty my bowels and use Pronton Pump Inhibitors, and anti-constipation stuff that gets stuff moving. Then they were afraid my ovarian cancer was back but a CT PET showed nothing (hurrah!). They've held off on the colonoscopy saying I just had one two years ago for my cancer (dubious logic - I'll probably press on this one). Now they are saying perhaps my colon is sluggish, not pushing food out quickly and so food is fermenting and building up gas which is causing pressure.

They want me to drink mild anti-constipation powder for the next 6 months to year, they say I need this continual treatment to get my colon moving. I am very suspicious of doing this longterm. I have a bias that classical western school medicine is simply pro-pills and actually gets very little training in nutrition or how to work with your digestion naturally to keep it healthy ... however I am finding it hard to find a gastrologist specialist who is integrative/holistic/sees the big picture.

Since my pn is chemo based, relatively mild and seems to be getting better, and the heaviest pn onset was 2 years ago with my first chemo infusion and fading since then, I have been discounting the abdomen problems as pn-related. I am 51, post menopause with ovary removal, so I thought perhaps it's just aging.

However, on the other hand, I've always had great digestion, so this sudden onset is very strange. Also I am a real foodie, so my great healthy eating doesn't seem to be paying off. Also the fact that it's not going away and all the standard things don't seem to be helping is suspicious.

Any thoughts on how likely this is pn related?

Any advice on what to do next? What to ask for or push for?

The doctors here are pathetic. They don't really listen to my symptoms, just give a quick five minutes where they simply tell me pills to try. I have to twist their arm just to ask "what should I be eating / not eating". I don't think they are rigorous in figuring out what this really is, I have to push for everything.

Thanks for any thoughts.

Natalie

P.S. I can't resist .... Just to add a weird story of why I think some of these doctors are pathetic ..... When I had my gastroscopy, they put me under. When I woke up from being under, I found myself dressed, with shoes on, my handbag on the floor next to me, sitting on a make-shift shelf, propped up / leaning against a concrete wall so I wouldn't fall over, in a busy open hallway with people walking back and forth. Waking out of anesthesia this way was very disorientating and it took me a minute to figure out where I was, where they had put me, what they had done with me. They didn't even give me enough time to let me wake up from anesthesia naturally in my bed but instead got me to put on my shoes, etc and propped me against a wall so they could have the bed!! This freaked me out. I complained to the nurse that this is a very unprofessional way to handle patients that put their trust in them to be very vulnerable under anesthesia. She said "well you didn't complain to us when we moved you"(!) I said that if you have to lean me up against a concrete wall to finish sleeping from anesthesia and I am not awake enough to sit upright in a lobby chair under my own power, then I am not capable enough to look out for myself, give you clear feedback or take care of myself and my belongings in a busy hallway among strangers. They still didn't get it. It really freaked me out how they didn't take care of me while still under!

[Aussie99]

I would also look closely at the medications you take. For years I had GI upset I with a beta blocker. It took me 5 years to realise that it was the beta blocker causing my GI distress.