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#1 chockers

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Posted 06 December 2011 - 04:38 PM

I have had a barium swallow test now.
I have asked a few times if there is anything wrong with the bowel and they say IBS .
It's worse than ever .

Not had the results of the test yet but believe they did not find much as had to ask for insurance

I am on Acid reducing drug. The doctor also talked about drugs mixing. I have a good Rheumatologist but he is quite a thinker. He used to work at the Royal Free so he is okay.

I run to the loo a lot now. So getting a bit fed up with it. I read the leaflet and I think I might need some treatment. Has anyone else been like this?
Chris :emoticon-insomnia:

#2 judyt

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Posted 06 December 2011 - 07:30 PM

Hello Chris,

You ask if anybody else is having similar problems to yours. I would have to say yes definitely!!

I for one have difficulties caused by an atrophied bowel. That means, as I understand it, that the sclero has stiffened the bowel wall much the same way as it does with skin in diffuse sclero. So what happens is that my bowel does not expand the way it should as it fills up each day. As well, my sphincters are not able to contract the way they should so,like you, I have to be very careful not to end up running, running, running as you say.

I have had various tests to ascertain this situation but I have had barium enemas rather than swallow for this part of my anatomy.

Over time, I like quite a few others, have had to modify my diet to help to manage the situation. Some people find a Gluten Free regime helps but I don't, however I am now Lactose Free (reduced actually). If I stick to Lactose Free milk in my (decaffeinated) coffee and on my cereal I can cope with some cheese but not a lot. I cannot drink alcohol or caffeinated drinks or eat chocolate (except I do have a little bit every now and then!!)

The thing that has helped most I would say is that I have been prescribed a stool bulking agent which I take twice a day. I take 2 teaspoons each time in a glass of liquid and I find that makes a big difference. The difference it makes is that it slows everything down a bit so running to the loo is not quite such an urgent thing.

I presume that the acid reducing drug is a proton pump inhibitor because you are suffering from some reflux. If you have not had to take these before now you are maybe starting to experience oesophageal dismotility and that is no fun either.

I have also been sent to a Uro-gynaecological Physiotherapist and that has been a huge help. The next thing I am in line for is a Neurostimulator called an SNS which stimulates the sacral nerves, the nerves in your lower back which are involved in defecation.

There will probably be more people chiming in with their ideas of how to help yourself.

Warm hugs

Judy T

#3 Buttons

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Posted 07 December 2011 - 08:04 AM

Judy, I have a SNS fitted for problems with bowel issues & it has helped, don't know how I'd manage now without it! It does give me those extra minutes to get to a toilet.

Buttons

#4 Joelf

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Posted 07 December 2011 - 10:16 AM

Hi Christine,

Sorry to hear that you're having unpleasant continence problems.

Thankfully, I don't suffer with gut involvement, but I have a good friend who does. She helped the situation greatly by being very careful of her diet and cutting out things like chocolate (as Judy mentioned) and reducing the amount of fruit and vegetables she was eating. At one time she was on constant antibiotics because the food was fermenting in her stomach and causing a large build up of bacteria. Since she's been eating more carefully, the problem has been greatly reduced and she has been able to discontinue the medication.

I do hope that you can find a similar solution to help you.

Kind regards,

Jo Frowde
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#5 Amanda Thorpe

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Posted 07 December 2011 - 02:16 PM

Hello Christine

I think you need to get your thinker to act on your behalf, have you been back to your rheumatologist recently as your problem has clearly worsened? You can try many things yourself but if you haven't seen your rheumatologist recently about this issue it may be time you did.

Take care.
Amanda Thorpe
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#6 chockers

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Posted 07 December 2011 - 05:14 PM

ARHH No appointments they come in the post now. I am supposed to get a letter but I'm still waiting and I have chased it up .

I've rung the connective tissue nurse but I think there's sickness and they are not in as no ones been about .(I try most days )
One of the reasons is nothing will kill me yet as every thing is still mild and slow changes. So in a way I guess it might be slow in getting the next appointment. But in another way it's becoming a nuisance and more of a nuisance since my last appointment .

So hoping the next stages will be checking things out and improving things. I am sure the problem is sclero related even if I have it mildly. As it's not like normal running to the loo it's like something has changed. I am going to be more firm with my asking and a nuisance asking for someone to see me .

Chris

#7 Amanda Thorpe

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Posted 08 December 2011 - 02:17 PM

Hello Christine

Just a thought but the drug you are taking for reflux, has that recently been increased? I ask because when Ma's was increased she was running to the loo too. She actualty lowered the dose herself because she couldn't leave the house it was that bad.

Take care.
Amanda Thorpe
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#8 chockers

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Posted 10 December 2011 - 10:41 AM

No, I am on the lowest dose 15mg and have been on for it a year. I think I have got used to being how I am; it's become normal. But last year I thought, I wonder if it's the acid reducing drug? :emoticon-dont-know: But now it's crept up on me it's become normal only in the fact Hubby is now on shifts and very often there's just me and some hobbies I do. My voluntary work I do on my own; I am independent like that. But when I do go out with my friends or somewhere public I know now it's got worse. But the acid problem..... it's wonderful not to have it now I am on the drug.

I'm still ringing the connective tissue nurse ha ha...... I think it's a case of leave and sickness. Will get to speak to someone soon but should have an appointment soon in the post as I'm about due to see someone in the R.A dept.

#9 Amanda Thorpe

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Posted 11 December 2011 - 02:13 PM

...it's also a case of just two fabulous rheumatology nurses doing the very best they can with too many patients...

Take care.
Amanda Thorpe
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#10 chockers

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Posted 30 December 2011 - 04:47 PM

Hi I have now got an appointment with the Rheumatoid Arthritis man. I feel guilty as on here you are far worse than me and I don't want to waste his time, but still running ha ha . With IBS you are meant to have discomfort and pain, but it's like something is not right, it makes you run to think about it.

So hope I am not being a time waster but the Scleroderma has changed and in its overlap with R.A they are both mild and I could be a whole lot worse.

It's got to my face now my Dentist can't do a root filling as my mouth is tight but not as tight as some, so my tooth is coming out .
But I am not sure if I am that bad, as yet.

Christine

#11 judyt

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Posted 30 December 2011 - 11:01 PM

Christine, don't feel guilty - surely the aim should be to keep things from getting worse.

You say you are not as badly off as some, and that is probably right, but it shouldn't affect you asking for help and advice. The worse you get the more help you will need so it is better to deal with things now than wait till later.

Best wishes
Warm Hugs

JudyT

#12 chockers

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Posted 19 January 2012 - 11:03 AM

I'm being referred for a check up.

Christine

#13 Joelf

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Posted 19 January 2012 - 11:52 AM

Hi Christine,

I'm pleased to hear that you've been referred for a check up.

Do let us know when you have it and how it goes.

Best wishes,

Jo Frowde
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#14 Amanda Thorpe

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Posted 19 January 2012 - 01:50 PM

Excellent Christine, I hope you get some answers and successful treatment.

Take care.
Amanda Thorpe
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#15 sherrytrifle

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Posted 21 January 2012 - 05:03 AM

Hi Chris
I read your post with interest. I also have bowel issues. Are you seeing a gastroenterologist maybe your rhematologist will point you in that direction. I echo what Joelf has said.
I have bacteria overflow, which increased in velocity over the months to the point where I was feebly weak emotionally and physically. At Addenbrookes I am now on a 3 week rollover of 3 antibiotics with a weeks break in between. This has really changed my life and allowed me to put on 3 stone, I look a lot healthier, and my haemoglobin blood count is stable. I now include foods I previously couldn't eat, ie rice pasta etc .. Some foods maybe upsetting the balance of bacteria in your gut? Some foods make life harder and you'll find out by trial and error which ones are causing trouble.. I chose to eat one different thing a day and wait to see if there was an upset to find the culprit. Oil present in meats, double/single cream, butter or margarine on bread (no matter how slight), soggy pastry in pies, spices, curries, crumble in puddings, grease, apples, the onion family and probiotics can all ferment in the gut. And that list isn't exhaustive. And it all depends on what colony is in the gut at the time. Anyway ask for a gut doctor. :emoticons-group-hug:

#16 chockers

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Posted 23 January 2012 - 03:45 PM

I have some problems but I think you are worse then me?
So I wonder when I have the tests what the doctor will say?

Christine

#17 chockers

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Posted 24 February 2012 - 02:53 PM

I've been tested for Sjogrens and that does things to your stomach and stiff muscles and tendons.

Not got an answer yet.

Christine

#18 Amanda Thorpe

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Posted 25 February 2012 - 05:12 PM

Hello Christine

Let us know when the results come through, it would be great if you finally get an answer!

Take care.
Amanda Thorpe
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#19 chockers

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Posted 01 March 2012 - 08:56 AM

Now waiting for the gastro. doctor to send me an appointment .

But I now know I am not as bad as some people. But it's a nuisance; I now spoke to the nurse and she said weakness?? Good news I don't have Primary Sjogrens .

So hope I have my appointment soon for gastro. doctor .

Christine

#20 Amanda Thorpe

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Posted 01 March 2012 - 12:57 PM

Hello Christine

That's good news about nor having Sjogren's but if you did have it you would have had Secondary Sjogren's not primary because you already have scleroderma as your primary disease.

Let us know what the gastro doctor comes up with for you as they should have some treatments that can help ease the running to the toilet at least!!

Take care.
Amanda Thorpe
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