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Old 01-20-2017, 06:50 AM #1
JoannaP79 JoannaP79 is offline
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JoannaP79 JoannaP79 is offline
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Default Gastro problems

Hi all,

I'm having awful stomach problems. I've had a dodgy tummy for a while but it has become really pronounced the last few weeks. Does this sound like gastroparesis?

I feel very nauseous particularly in the morning. It feels like my body wants to turn itself inside out when it's this bad. It's gurgling and feels acidic inside. I have absolutely no appetite. Eating and wanting to eat is difficult. Cooking smells make me feel sick. As the day progresses it often improves and then I'm really hungry.

Excuse this graphic description but stools are awful and not fully formed but not diarrhoea. I can go a few days not going but then have days where I have to go urgently and it's as above.

This problem was around when I first got Sfn and I had a colonoscopy and gastric emptying test. He couldn't see anything bar minor inflammation in one section. The gastric emptying showed rapid emptying. He put it all down to anxiety.
I have awful anxiety at the moment due to feeling so unwell and the terror of it all with a small child. But I don't believe for one minute this is all anxiety.
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Old 01-21-2017, 11:24 AM #2
Protector Protector is offline
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Joanna,

I'm sorry to hear you're having even more issues. I went thru a similar period with gastro symptoms that resembled gastroparesis about one year ago.

It started with terrible indigestion and burping and loud digestion noises. I also was experiencing upper abdomen discomfort to the point if I hit a bump in the road while driving it was mildly painful. Then a few weeks later I started to experience bouts of diarrhea. I had a CAT scan which revealed a thickening of the upper part of the stomach, and a possible thickening of part of the small intestine. I then had a pill endoscopy for a better look inside which suggested slow motility of the small intestine. All of this scared the crap out of me.

I was convinced my sfn was now causing autonomic issues that would be permanent. By now I was experiencing some early satiety (mild) and totally lost my appetite. I went without a hunger pang for months, and I normally get them numerous times a day as I have a high metabolism. I still ate 3 times a day but it was somewhat forced. Finally my doctor scheduled a gastric emptying taste which to the surprise of both of us was normal.

During this period the Dr. first prescribed a proton pump inhibitor which did nothing, may have actually made me worse, and was discontinued after several weeks. He then prescribed Librax, which is a combination low dose benzodiazepine and anti-spasmodic. This definitely helped. I was on it for 2 months, then stopped for a month, but symptoms returned so I took it for 2 more months. At this point my symptoms had decreased to the point I wanted to be off the medication as benzodiazepines can be unhealthy for long periods although this was a very low dose and many people to take Librax for years.

My response to Librax suggested anxiety could have been the cause or a contributing factor to my symptoms. It's also possible it was inflammation that went away. I researched this on the web and recall reading many studies of functional dyspepsia (stomach aches) and research suggested that in some patients their stomach didn't expand properly when eating but a cause could not be found. This may be responsible for the early satiety. I recall reading of a study where patients with this issue responded to buspirone, an anti anxiety med. And anxiety can certainly cause a lack of appetite and many digestion issues. If you google the term "second brain" you will find many articles discussing the whole nervous system within the gut.

I specifically asked my Dr. when my diagnosis was looking unfavorable if he saw my symptoms in other patients. He replied he did, and the issues often improved with time. I can confirm that was true in my case. My digestion issues are mostly gone. But my sfn rages on.

But please don't discount how enormous an impact anxiety can have on your digestive system. We often don't want to admit that our conditions cause anxiety, or take medication for it as it feels like a sign of weakness.

My suggestion is if you have ruled out all the other functional causes of your symptoms, including anything related to your AS, please keep an open mind about other possibilities.

Good luck and I hope your symptoms dissipate over time as mine did.
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Old 01-21-2017, 01:19 PM #3
JoannaP79 JoannaP79 is offline
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Quote:
Originally Posted by Protector View Post
Joanna,

I'm sorry to hear you're having even more issues. I went thru a similar period with gastro symptoms that resembled gastroparesis about one year ago.

It started with terrible indigestion and burping and loud digestion noises. I also was experiencing upper abdomen discomfort to the point if I hit a bump in the road while driving it was mildly painful. Then a few weeks later I started to experience bouts of diarrhea. I had a CAT scan which revealed a thickening of the upper part of the stomach, and a possible thickening of part of the small intestine. I then had a pill endoscopy for a better look inside which suggested slow motility of the small intestine. All of this scared the crap out of me.

I was convinced my sfn was now causing autonomic issues that would be permanent. By now I was experiencing some early satiety (mild) and totally lost my appetite. I went without a hunger pang for months, and I normally get them numerous times a day as I have a high metabolism. I still ate 3 times a day but it was somewhat forced. Finally my doctor scheduled a gastric emptying taste which to the surprise of both of us was normal.

During this period the Dr. first prescribed a proton pump inhibitor which did nothing, may have actually made me worse, and was discontinued after several weeks. He then prescribed Librax, which is a combination low dose benzodiazepine and anti-spasmodic. This definitely helped. I was on it for 2 months, then stopped for a month, but symptoms returned so I took it for 2 more months. At this point my symptoms had decreased to the point I wanted to be off the medication as benzodiazepines can be unhealthy for long periods although this was a very low dose and many people to take Librax for years.

My response to Librax suggested anxiety could have been the cause or a contributing factor to my symptoms. It's also possible it was inflammation that went away. I researched this on the web and recall reading many studies of functional dyspepsia (stomach aches) and research suggested that in some patients their stomach didn't expand properly when eating but a cause could not be found. This may be responsible for the early satiety. I recall reading of a study where patients with this issue responded to buspirone, an anti anxiety med. And anxiety can certainly cause a lack of appetite and many digestion issues. If you google the term "second brain" you will find many articles discussing the whole nervous system within the gut.

I specifically asked my Dr. when my diagnosis was looking unfavorable if he saw my symptoms in other patients. He replied he did, and the issues often improved with time. I can confirm that was true in my case. My digestion issues are mostly gone. But my sfn rages on.

But please don't discount how enormous an impact anxiety can have on your digestive system. We often don't want to admit that our conditions cause anxiety, or take medication for it as it feels like a sign of weakness.

My suggestion is if you have ruled out all the other functional causes of your symptoms, including anything related to your AS, please keep an open mind about other possibilities.

Good luck and I hope your symptoms dissipate over time as mine did.
Hi protector, thank you so much for your detailed reply.

I have been taking a proton pump inhibitor for a few days but am unsure if it helps. I'm so cautious of taking things as my stomach is so sensitive now.
Anxiety is definitely causing problems. I kind of agree that it's making things worse and is doing something to my stomach, even though I'm unsure it's the sole cause.

I'm so grateful that I have private insurance for a while so have scheduled a Gastro appointment in two weeks time. It's really useful to hear about your Cat scan. I don't want them to just look at a colonoscopy as it isn't telling the full story. I understand that Gastro problems related to the nervous system or muscles isn't very common and is often overlooked.

I've been taking an anti inflammatory medication called naproxen for a few months and it's notorious for stripping your stomach. I suspect that's adding to the mix of problems.

I've been trying various antidepressants and I can't tolerate more than one day. My sensitivity is extreme. I'd taken one in the past which was great and the adjustment was a bit difficult anxiety wise but it's nothing like it now trying to get back on one. I've tried three now and the next one they have prescribed to try is Zyban - which is used to help people stop smoking. I hope I can find something soon as I do need help emotionally with all this.

The lack of hunger issue is so familiar. I am eating but it is really forced. Often I don't ever want to eat at the moment.

I'm basically holding out for a full body transplant one day
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Old 01-30-2017, 01:06 PM #4
Starburst Starburst is offline
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Hi Joanna,

Rapid gastric emptying aka "dumping syndrome" can make you feel really unwell and terrible; nausea and anxiety-type feelings without it being anxiety. That said, it depends on how long ago you had the GES and it may need repeating, if you are covered by your insurance.

Take care.
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Old 01-30-2017, 02:44 PM #5
MAT52 MAT52 is offline
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Quote:
Originally Posted by JoannaP79 View Post
Hi all,

I'm having awful stomach problems. I've had a dodgy tummy for a while but it has become really pronounced the last few weeks. Does this sound like gastroparesis?

I feel very nauseous particularly in the morning. It feels like my body wants to turn itself inside out when it's this bad. It's gurgling and feels acidic inside. I have absolutely no appetite. Eating and wanting to eat is difficult. Cooking smells make me feel sick. As the day progresses it often improves and then I'm really hungry.

Excuse this graphic description but stools are awful and not fully formed but not diarrhoea. I can go a few days not going but then have days where I have to go urgently and it's as above.

This problem was around when I first got Sfn and I had a colonoscopy and gastric emptying test. He couldn't see anything bar minor inflammation in one section. The gastric emptying showed rapid emptying. He put it all down to anxiety.
I have awful anxiety at the moment due to feeling so unwell and the terror of it all with a small child. But I don't believe for one minute this is all anxiety.
Yes I have similar GI symptoms to those you describe. I also have gastritis and swallowing issues. In my case I have Sjogren's Syndrome and I think these problems relate to autonomic dysfunction as part of this disease. I know how horrible it is and you have my sympathy. I do find that taking maximum amounts of Ranitidine, liquid Senakot and Lactulose regularly has helped a lot with the constipation and GERD but if I have even a day off then I pay big time with the bowel issues you describe.
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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Old 01-31-2017, 03:46 PM #6
JoannaP79 JoannaP79 is offline
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Quote:
Originally Posted by Starburst View Post
Hi Joanna,

Rapid gastric emptying aka "dumping syndrome" can make you feel really unwell and terrible; nausea and anxiety-type feelings without it being anxiety. That said, it depends on how long ago you had the GES and it may need repeating, if you are covered by your insurance.

Take care.
Thanks Starbucks. What you describe is really accurate. When my stomach is kicking off I simultaneously get really bad anxiety. It doesn't feel like it's triggered by my thoughts, it feels exactly like a physiological trigger linked to my stomach spasms.
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Old 01-31-2017, 03:50 PM #7
JoannaP79 JoannaP79 is offline
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Originally Posted by MAT52 View Post
Yes I have similar GI symptoms to those you describe. I also have gastritis and swallowing issues. In my case I have Sjogren's Syndrome and I think these problems relate to autonomic dysfunction as part of this disease. I know how horrible it is and you have my sympathy. I do find that taking maximum amounts of Ranitidine, liquid Senakot and Lactulose regularly has helped a lot with the constipation and GERD but if I have even a day off then I pay big time with the bowel issues you describe.
Thanks Matt. Sorry you too have stomach trouble. It's tough going. Thankfully I've had respite the past few days, I'm so relieved. I can't take senokot or anything like that, have too much of a rapid emptying problem and go every two days so don't feel like constipation is too much of the problem.
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