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Gastroenterologist says I have sclero signs


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#1 Teatime

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Posted 05 May 2012 - 03:37 PM

I had an appointment with my gastroenterologist Thursday. It was the first time I've seen him since my endoscopy and esophageal dilation several months ago. When I've had bad attacks, his office got me in ASAP but I had to see the physician's assistant. She is very good and competent but it was time for my doctor to review everything.

Anyhoo, for the past 8 months or so, I've been having a lot of difficulty swallowing and more problems with GERD, plus random stomach inflammation and vomiting. The dilation helped a tiny bit but the problems have continued.

I asked him how much of this was autoimmune and he said all of it, that my immune system is focusing on my GI tract and he can see problems associated with blood vessel inflammation and damage, in particular. I told him that my internist has been wondering if the Crohn's Disease or possibly scleroderma is causing a lot of my systemic problems and he said that, yes, the manifestations in my esophagus and stomach look to be a result of scleroderma.

The physician's assistant had put me on an anti-spasmodic for my esophagus called baclofen that's been helping and he increased the dosage. I have hyomax that dissolves under my tongue and works instantly when bad spasms hit suddenly. He also increased the dosage of my prilosec (omeprazole) and gave me promethazine HCL suppositories for when the vomiting attacks hit.

We still don't have a rheumatologist in town but I'm glad to be getting some help with this aspect, anyway. My doctor is from India and goes back to visit family for several weeks every summer. He wanted to see me now, right before he left, and I have an appointment to see him again in a few months when he returns. He said to be sure to call the office if I have attacks while he's gone.

Is there anything y'all or your doctors do to control your GI symptoms that I can ask about?

#2 judyt

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Posted 05 May 2012 - 05:00 PM

Hello Teatime,

Sorry to hear that you are having Esophageal problems, it is not nice, I know from my own experience. I too had a dilation and went through a stage of lots of pain and vomiting intermittently and unexpectedly.

Because none of us are medically trained, and personally I can't even boil potatoes without burning them, we should leave your medications to the Doctors. However, over the years I have found things which help and most of them revolve around diet and eating habits. You probably know that you should not lie down within about 2 hours of eating and if you have to have a nap after lunch then at least stay well propped up. Some people sleep with the head of the bed raised. I have never had to do that because I have been very careful about when I eat.

The things you eat will probably make a difference too. I can't have any alcohol, chocolate, acidic juices like lemon and even some tomatoes, no caffeine no spicy foods. I do have decaf coffee but no tea unless it is fruit or herbal. I discovered early on that calcium supplements make me vomit and I can't cope with fish oil supplements either. So I stick to getting enough of those things in my day to day diet. I eat cheese and fresh oily fish. Some people find a gluten free regime is helpful. I don't follow that but I do stay away from additives such as sulphur preservatives.

The additional medication I wouldn't be without is Domperidone. For me it seems to control my intermittent vomiting, and I have proved it by going without it for a week or two and found that the vomiting came back. Domperidone is marketed here as Motilium, and that is exactly what it does, it stimulates the motility in the gut and helps your food move along.

I have CREST and have had all the manifestations of that although in a minor way except for the Esophageal Dismotility (the E) my GI tract has been the main focus of my disease and I have quite severe bowel dysfunction as well. I would love to have been able to try Immunosuppressants in the past and feel they could have helped if anybody had known what was going on with me when I was younger. I do realise, of course, that the modern drugs were not around in the 1960 to 1980's so maybe it is just wishful thinking on my part.

I hope you can get the opportunity to consult a knowledgeable Rheumatologist at least, or at best a Scleroderma Expert because that could make a huge difference. Perhaps you can make it happen by travelling to somewhere there is a specialist at least once a year.

Warm hugs and best wishes
JudyT

#3 Amanda Thorpe

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Posted 05 May 2012 - 05:21 PM

Hello Teatime

Scleroderma has moved on from my skin to my heart and now to my entire gastrointestinal system, well that's what symptoms suggest anyway. I am awaiting stomach endoscopy and colonoscopy and abdominal ultrasound having had no appetite since July last year and getting full after small meals. Presently I am only on omeprazol and sodium piccosulfate but who knows after the tests!

As I am awaiting tests and results all I can say is your symptoms seem worse than mine!

Take care.
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#4 Teatime

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Posted 05 May 2012 - 05:55 PM

judy,
I understand the bowel issues, as well, because I also have Crohn's Disease on top of this. It's a huge pain, isn't it? I'm sorry you're dealing with it all, too. I would love to consult with a dietitian and put together a beneficial diet. I have so many food restrictions right now, though, with the Crohn's and because I'm taking warfarin that it's implausible. Everything that is healthy and lovely apparently thickens my blood! lol

I am hope, hope, hoping that when I see my cardiologist in a few weeks, he'll tell me that the heart monitor and test results looked great and I can go off the warfarin for a while! I had a cardio ablation done in February due to really bad and nearly constant atrial fibrillation. My heart seems lots better so I'm keeping my fingers crossed, even though my cardiologist said I'll likely need to have the ablation done again in a couple of years. Pessimist! :P

Gastro-doc says I must wait 4 hours after eating to sleep. That means I either don't have a snack at night or I stay up past midnight. Unfortunately, the latter seems to be the most prevalent response, hahahahaha.

Amanda,
I'm so sorry you're going in this direction, too! I hope you can get it controlled very soon! I can deal with just about anything with my chin up -- except vomiting. Especially this kind of vomiting because it strikes unpredictably and there's no rhyme or reason to it and no way of stopping it. I will feel bloated and horrible, my abdomen will enlarge, it will be difficult to breathe, and I will likely begin vomiting violently in the wee hours of the morning. It's so violent that my throat/esophagus and nose will bleed.

It doesn't matter what I ate and sometimes it happens when I've eaten nothing at all and I'll vomit horrible bitter stuff or food that was just apparently sitting there. I've never experienced anything like this until the past two years or so and I've never met anyone else who has dealt with it. My gastro-doc says it's because of the sclero. I wouldn't wish this on my worst enemy, if I had any, lol!

I don't know how other doctors proceed, obviously, but my gastro-doc did a capsule endoscopy when he wanted to see what was going on everywhere as gently as possible. That thing is magic! There's no prep involved except stopping eating the night before and you just swallow a capsule that has a camera in side of it. The cheeky little thing takes pics of your insides all of the way down until it is naturally eliminated and flushed down the toilet. SO easy and it films areas that conventional scopes can't reach. That's how he saw the vasculitis and other blood vessel problems and damage in my small intestine and elsewhere! It can't biopsy or treat, though.

The baclofen has improved my esophageal spasms a whole lot! It was to the point where eating was such a painful exercise that I didn't want to do it, and the fear/stress made matters worse, of course. Now, I'm doing rather well with it unless I'm in a systemic flare, as I am now.

All best,
Julie



#5 Joelf

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Posted 06 May 2012 - 07:28 AM

Hi Teatime,

So sorry to hear that your GI problems have flared up; it must be really unpleasant for you and I hope that the problems you're experiencing are getting more under control now with the medications you're taking.

I don't have the GI involvement but I have been having stomach pains, a little bloating and heartburn, so like you I'm now taking Omeprazole, as heartburn can cause reflux which in turn can affect my lungs. My gut feeling (if you'll excuse the pun! ;)) however, is that the discomfort in my stomach is caused by the various medications I take and not through Sclero (although I wouldn't swear to it!)

I'm very intrigued by the capsule endoscopy and pleased to hear that the baclofen is helping you now and hope that it continues to do so.

Kind regards,

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#6 Amanda Thorpe

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Posted 06 May 2012 - 02:59 PM

Hello Julie

My dear friend had terrible problems with vomiting as well, has plastic bags to hand as vomits whilst driving as well as all throughout the day and night. She has been offered every anti emetic going including one that has the side effect of nausea! She would rather vomit that feel like vomiting!

Her gastrointestinal system doesn't work and she eats occasionally to be normal rather than to live but over a period of days will vomit anything she has eaten. She lives from TPN (total-parenteral nutrition) fed by port into her heart as her body can't absorb anything from food and it goes nowhere anyway hence vomiting it back up days later and once that's gone she begins vomiting the bile. There is nothing else that can be done for her and she is the longest living scleroderma patient on TPN, she has had scleroderma for 2 years and been on TPN for 1 year.

Most people would think vomiting no big deal but those of us here know different so when I say you have my sympathy I mean it. I carry plastic bags when travelling by car as since having scleroderma I can suddenly become intolerant to it and well you know the rest!

I hope things settle down for you ad take care.
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#7 debonair susie

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Posted 09 May 2012 - 02:38 PM

Hi Ladies!
I feel so sorry for any/all who suffer from uncontrolled vomiting :sick2: , because it is the worst EVER!
I had already been displaying various symptoms when only weeks before I was diagnosed (with Scleroderma, the REST of cREST), my vomiting came in intervals,, which occurred over a period of a week. Thereafter, it came on anytime I ate, no matter how little I ate. As Julie mentioned, the bitterness of it was AWFUL!

Julie, my medical qualifications equal those of a frog, yet it seems your doctor is treating you well and I'm so glad to read that the baclofen seems to be working the way it's meant to :terrific:
As JudyT mentioned, making note of what foods/drinks cause problems and avoiding them is wise to do; I'm sure you've figured that, by now. Of course, having your upper body elevated while sleeping is also a great benefit.

Though vomiting has been a non-issue for a long time, (for me, fingers crossed), I believe your doctor has been very proactive in treating your gastro issues, from where I sit! Kudos to you both and like Amanda, I hope the flare eases up so these GI problems also do.
Special Hugs,

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#8 Mousey

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Posted 13 May 2012 - 04:01 PM

My husband has diffuse sclero. For the past year or so he will get pains in the top area of his abdomen, then he will be sick for a day or so (throwing up, unable to keep anything down). I guess we never thought it could be from the scleroderma. (?)

#9 judyt

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Posted 13 May 2012 - 10:04 PM

Hello Mousey,

Sounds to me just like what can happen with my stomach. Pains across the diaphragm area then, if I am not careful or lucky, throwing up.

Lots of us have the same symptom because of the Esophageal damage the Sclero can cause. Has he had a Gastroscopy to investigate what is going on?
It seems strange to me that his Doctors would not have discussed this with him and made an investigation a routine thing. I have a Gastroscopy at least every 2 years if nothing dire happens in the meantime, and sometimes it does!

Best wishes
Judyt

#10 Amanda Thorpe

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Posted 14 May 2012 - 07:17 AM

Hello Mousey

If your doctors have not realised it's scleroderma causing the gastrointestinal problems then you need new doctors, in particular scleroderma experts. Let me say it is essential that your husband be under the care of a scleroderma expert because gastrointestinal involvement can deteriorate and become very serious and even life threatening. I base that comment on my experience of people I know with scleroderma gastrointestinal involvement.

Don't let him go on suffering because of improper medical care, there are things that can be done to help with the symptoms he is experiencing.

Take care and keep posting.
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#11 Teatime

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Posted 15 May 2012 - 03:10 PM

Yes, indeed, it bears a thorough investigation and careful watching!

In my opinion, a really super diagnostic tool is the capsule endoscopy, if it is available to you. The traditional endoscopy, colonoscopy, and sigmoidoscopy don't see every bit of the GI tract but the capsule takes pictures of everything! It's a tiny camera/transmitter inside of a capsule that you swallow. You wear a fanny pack with a recorder inside to which the capsule transmits images as it goes through your GI tract. The clarity is phenomenal!

I was amazed when I saw the pictures that the capsule took, showing both vasculitis and Crohn's lesions in my small intestine! It was in an area at the end of the stomach and the beginning of the small intestine that is unreachable by the traditional scopes. Immediately, we had some answers! The only downside is that the capsule can't remove polyps or take biopsies, obviously. But it can pinpoint where the problems are, which reduces or eliminates the number of other tests done. It is SO much easier to tolerate, too, of course. No nasty prep the night before and no visit to a hospital or out-patient center. The capsule transmitter is disposable, you just flush it away.

So much can go wrong in the gut that pain and symptoms really need to be addressed!

#12 Joelf

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Posted 16 May 2012 - 12:49 AM

Hi Mousey,

Good to hear from you again, although I'm sorry that your husband has been suffering with GI involvement.

I would echo the others' advice, and suggest that you go to a Scleroderma specialist, as Amanda has advised, so that his worrying symptoms can be checked and hopefully improved.

Kind regards,

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#13 Amanda Thorpe

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Posted 04 June 2012 - 11:01 AM

Hello Mousey

I was wondering how your husband is getting on? Any improvement in symptoms and/or treatment? How are you coping with things?

Take care.
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