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Another dilation and more GI fun

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Hi everyone!

I don't think I've posted since I went to England for a visit! Well, I had loads of fun and was so happy to be able to spend lots of time with my friends! It is so tough to travel but I made it and that was an accomplishment!


In the past few months, my esophageal and GERD stuff has gotten worse. And, unfortunately, when I returned from England in mid-October, I found a letter from my gastro-enterologist saying that he was no longer accepting my health insurance so I had to find someone else. Not cool.


It took several weeks to get in to see another GI doctor. In the meantime, my esophagus simply refused to work properly. The food and liquids sit in my esophagus until they finally come back up. It's awful. I wound up in the hospital getting rehydrated and IV meds.


So, I finally see the new GI doctor and he's a dud. Really. He asks me to tell him my history and he keeps interrupting me with critical or sarcastic comments about everything my previous doctors found. When I told him I'd had a capsule endoscopy, he said he didn't believe in those things and didn't trust them. Sigh ...the dude is a seriously nasty old person.


He decided that I should be taking my Crohn's steroid every day rather than just doing bursts when I have a flareup. OK, that's fine. And he increased my prilosec to help with the GERD. Last week, I had to go in for an endoscopy and esophageal dilation and as the dude is injecting the sleepy drugs into my IV, he's telling me that he looked at my capsule endoscopy film and found it "unremarkable." I fell asleep before I could ask him what that meant. My son said he told him that my lower esophagus had narrowed and he dilated it. That was all he said. My son thought he was a dud, too.


I don't know what I'm going to do. I hate this guy and I need a good GI doctor. I wish my previous doctor didn't stop taking my insurance. I had two doctors tell me I have Crohn's Disease and now this guy is disputing it, or is he just being a pain? I don't know. I don't want to go back to him but I don't think I have a choice. Once you see one of the doctors in the practice, it's difficult to switch and see a different one, even though there are four others in that office.


Anyhoo, he said he thinks the esophageal stuff is sclero-related so the dilation may or may not be of much benefit. My rheumatologist agreed that it sounds like sclero manifestations. I was in a vicious cycle of throwing up my meds and then having things flare up because I wasn't getting my meds properly. Fingers crossed, the dilation seems to have helped some. I'll take any help, at this point!



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Hi Julie,


Like you I have GI issues. Many years ago I started having swallowing problems and had a dilation long before anybody recognised that I had Sclero.


The issue which led to my diagnosis was also GI related and after that I started having bouts of unexplained vomiting. All sorts of reasons were suggested and sometimes I would have no episodes for months then it would start up again.


Then I started having quite severe bouts of Gastritis and my general practitioner suggested Domperidone which has made all the difference to me. The only time I have had vomiting has been when I ran out of it and had to wait a while to get a new supply.


I have mentioned this to you with some trepidation because I know Domperidone is/was at one time and maybe even now not licenced for use in the US. However I know that others on this forum use it and have had very good results. Maybe somebody else will chime in and comment on the situation as of now.


From my own experience I know just how unpleasant this can be, particularly when an episode decides to visit when you are not at home.


Best wishes to you for some sort of improvement.


Judy Trewartha

(Retired) ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Julie,


How lovely to hear from you again and I'm glad that you enjoyed your visit to the UK; I hope it wasn't too wet for you!! ;)


It's a real pity that your GI issues have flared up again and that your present GI doctor is so unsatisfactory. I can see that it might be a problem swapping to another doctor in the practice; we have a different system in the UK and I've never been treated privately so I can't really advise you about that and thankfully I never had any reason to query the treatment from my lung or Scleroderma consultants. Certainly it's always possible here to see a different general practitioner in the same practice. I don't know whether you could perhaps have a word with the consultant's secretary and see whether it might be possible to see one of the other doctors......effectively you are the paying customer so surely you should be able to see another consultant if you're not happy with the one treating you?


I do hope that your symptoms do improve very soon and that you can find a more helpful and sympathetic consultant.




Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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Hello Julie


Yeah, I had a doctor who did this, debunked other doctors and the Royal Free! Eventually I made a formal written complaint pointing out other that massaging his ego, there was no benefit to criticising other doctors etc among other things. I also sent copies to other medical bodies and he had to go through the trouble of making a written reply to me even though I never read, I just binned it. I wonder how long he waited for a reply before he assumed the complaint was over?


If it were me I would take the doctor on and the question is which is the lesser of two evils for you, putting up with all this or challenging it? Why is he disputing previous diagnoses? You may have to ask for a second opinion.


You pay for his services remember but you need to decide what you are going to do about it, it may be that talking to him may do the job and if you decide to do so rehearse what you are going to say, when he interrupts you firmly tell him you are still speaking and he can have his say when you're done and take someone with you as a witness.


Unfortunately these doctors are out there but you don't have to put up with it.


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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In many plans, doctors make their bonus money by reducing costly procedures for the insurance companies and that is why there are many like that out there.


But Amanda is right about asking him about it and if it were me I would find another doctor flat out.

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Hi Teatime,

I had similar problems with my doctors dismissing things other doctors told me, actually saying "what does he/she know about this?" to the point I became emotionally upset. I learned to tell my doctors, "if you have an issue with what another doctor has told me, take it up with him/her unless you find it life threatening to me at the moment." It was very empowering.


I have to give the doctor who was causing the most issues credit. He was open and told me if I felt our relationship had reached a point of not working I could see another doctor in the practice. Since he had been very on top of things, except for his comments about other doctors, I stayed with him, after giving him my disclaimer. Things have been fine since then.


Hopefully you can ask for another doctor in the practice for a second opinion, or find another doctor, even if it means going a greater distance to travel. Do you have a scleroderma specialist? There is a center in Texas.


Believe me, I know how upsetting it can be.



ISN Artist

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Hi Julie ~


I am in your exact same boat! I switched Gastro doctors once becasue he was unbelievably rude and disrespectful to me. Were we seeing the same guy?! And then the guy I switched to seemed okay at first but I could tell he had no experience with scleroderma. Then when I went in for an endoscopy with a dilation he FORGOT to do the dilation! That was the MAIN reason for the endoscopy! Now I am looking for another guy and yes it is hard to find someone you trust and feel good about.


I also had to switch all of my 'ologists' that I have had since my diagnoses (7 years ago) since Medicaid came under managed care in our state (all states?) *Sigh* It's a pain! And I don't think it's fair.


Hang in there - I hope you find someone you can feel confident in. And I hope your dilation makes you feel better!

Take care,



Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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