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summer

How bad does your digestive system

10 posts in this topic

I thought I would give everyone an update on my Gastroscopy/Colonoscopy,

which I had done on Thursday.

 

My Gastro doctor sat down with me after my endoscopies a few days

ago, before I was discharged to go home. Everything is normal, he said he did

a very thorough check. No Gastritis, which I had a couple of years ago, no

Diverticulitis, which I also had, no polyps or damage to the esophagus.

All was good, so why am I so unhappy. For the past 18 months, I have spent

nearly every 2nd day of so, heaving, passing small of stool, cramps, nausea

constipation with chronic diahrrea. I was hoping that there was a reason

for all of this, but no, everything is just fine.

 

My Gastroenterologist, said that my body is like a car. Everything seems

to be working fine, except for the electrical system of a car is playing up.

My digestive system is obviously the electrical system of a car. I asked whether

there is anything he can do. And, he said no. He has taken heaps of biopsies, and

if there is anything wrong, he would call me. That's it, no follow up appointment,

no tests, no nothinig. How am I supposed to live my lifeday in day out, with all of this.?

 

How bad do I have to get, before anything is done, do I have to be anorexic?.

and stop eating,do I just drink liquids, so things can get digested?.

 

I am sorry if I am moaning, I know that there is a lot of others on this forum

a lot worse of than me. I just don't know where to go from here.

 

Warm wishes to all.

 

Summer

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Summer, what a shame your doctor didn't have any answers for you. This is probably a stupid question, but has anyone done any allergy testing with you? Just a thought and it is probably grasping at straws. Maybe someone else will have some better suggestions.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Summer,

 

I am sorry that you are going through all those digestive problems. I have had very similiar experiences over the last few years. I lost a ton of weight. I had horrible reflux and diarrhea. I was hospitalized at one point because I couldn't keep anything in me. They did a ton of tests (gastro) and found basically nothing to explain what was going on. Ironically, I started on Lyrica for pain and it didn't eliminate the problems, but it helped slow them down. I then found out later that I had severe small fiber neuropathy (due to sjrogrens) and the neurologist felt it was affecting my entire body. The gastro put me a very low dose of elavil and that along with the lyrica helped reduce my problems significantly. I wish you all the best.

 

EAH


ANN

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I've had something interesting happen that has made me wonder about things along this line too.

I just started taking hydroxychloroquine about two weeks ago. The first thing that happened was that my breathing got better. Now my intestines have started to work better too- more like the pre-CREST diagnosis days.

But my joints got worse- go figure.

But it did make me wonder if I have a sort of general everything's inflammed sort of thing going on.

Are you on anything like this med?

 

I do think that non-sclero doctor's tend to let things go at the "I looked and found nothing" stage when there might be more options.

:emoticon-bang-head:

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Hi Summer, Very sorry to hear of your frustration. The same sort of thing seems to happen to me from time to time I have weird pains and happenings in my insides, they look and say there is nothing!!! So frustrating!!! They say everything is "normal" but how can it be when one has Sclero!!

 

Just a thought I did have, our daughter has slightly similar problems, with gastro pains, bloating, cramps, diarrhoea etc. etc. ever since she was a little girl. When she was about 8years old an allergist put her on a special Diet - No grains, no dairy, no refined foods in other words hunter gatherer food. Meat, fruit, vegetables and after 3 weeks she was so well everybody started to comment how well she looked!!!

 

Now she is an adult(35 young Mum with 3 kids) she still has the same problems with the addition of fairly frequent bouts of vomiting and stomach cramps. I kept reminding her of the Diet days when I WAS IN CHARGE!! So now she tries to keep to a similar diet for herself. It is a low starch diet these days and she is very much better.

 

Our daughter has been told she has allergies and irritable bowel syndrome.

 

It could be worth a try.

 

 

Good Luck with your search for a comfortable life.

Judy T

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Hey Summer

 

I know how frustrating this can be. I was going through similar issues to you and had many gastroscope that where all clear. Recently though I got to the point where liquid where all I could tolerate and only very small amounts. This landed me in hospital for three weeks where they finally did a gastric emptying study, which in the specialist words was abysmal. I have now been diagnosed with Gastroparesis and take cisapride for now to make symptoms' tolerable till they work out what to do.

 

Dont give up, if need be get a second opinion from the Scleroderma Doctor.

 

I wish you all the best in finding something that can help, I know it can wear you down and strip you of you energy and zest for life.

 

Shaz


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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In addition to the Lyrica, I was also on Plaquenil. I also recently started Immuran. They tried methotrexate, but I didn't tolerate that well. My liver enzymes are rising on Immuran so I had to cut it in half. I will see how that works. I hope this helps. Good luck.

 

EAH


ANN

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Summer,

 

the frustration form being told that all your tests are perfectly fine when you feel terrible is endless. I have been going through this for years. I still am.

A good natural doctor might help for balance in our bodies since the medicine does not look at the patient as a whole, only parts of his organs. Yeast overgrowth (Candida etc.), some bacteria, parasits, food sensitivity, food allergy ...all can influence our digestion. Digestive enzimes are very important. Try some formula before eating. Try not to eat bread with yeast, do not eat wheat (meny people are sensitive to wheat), do not consume cows milk (most adult people can not digest it , do not eat fried... Hard to implement but it has helped me. Biovega doctor has measured my parameters by a strange computer linked electrodes and prescrebed homeophaty and diet cure specific for my case. Maybe you can find somebody like that in your area.

I will keep my fingers crossed for you.

 

Erika

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Hello Summer

 

Symptoms with no known cause are hard to bear because without a cause treatment is hard to find. I really don't think you should stop searching for the cause, you know something is wrong. I am sorry I don't have any suggestions for you but I do hope you get to the bottom of what's going on.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you all for your kind replies. You all give me some hope to go on.

 

I'm not too sure where to go from here, I have a good Gastro doctor, in the sense, as him being an approachable person to talk to, and he does have a good bedside manner.

 

But, he doesn't come up with anything new for me to try, I feel as though that I am

doing all of this research, and going to him with it. So, what shall I do, stick with him, or try someone new?, that I will have to think about.

 

I have messed around so much with my diet and the only thing I haven't tried is liquids.That might be next on my agenda.

 

Many thanks to all

Summer

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