Severe Gi Problems. I Can't Stand My Doctor!

[Kris4444]

I do suffer from dysautonomia, but I also have autoimmune issues which have affected my GI tract. If this is the wrong forum to post this on, please delete, but you guys are my friends and I really need to vent!

I have global dysmotility of my GI tract with the exception of my small intestine, which for some reason seems to work just fine. I'm on my way back to Mayo for the second time to be seen by the GI doctors there again. Why you ask? Because the doctor I have been seeing is an arrogant jerk and I can't stand him! It's a very long story and I won't go into all the old details but let me tell you that I see him because he is the only doctor in my area that does Botox injections to the pyloric sphincter which I need in order to keep me out of the hospital every month for a week at a time.

Fast forward to this week. I have had a feeling of something being stuck in the back of my throat for the last 3 weeks. I have slow motility of the esophagus so I was worried that maybe there WAS something stuck. I made an appointment with my primary doctor first thinking he could have a look and maybe it was nothing more than an infection of some sort. He referred me to my ENT who took an endoscope and looked into my throat. He found obvious edema, irritation of the throat and inflammation. He said it was due to my acid reflux (which has been really bad since they switched me to a generic form of Nexium) and said the reflux was irritating the back of my throat. I was feeling the edema when I swallow. He told me to let my GI doctor know what was going on and to see if I should maybe add Zantac to the mix if it doesn't go away.

So I email the GI doctor. He RIGHT AWAY says that it isn't the acid reflux but something called globus. I asked him what that was but he didn't answer, so I looked it up. It seems it's a psychosomatic condition brought on by stress or depression of the "feeling" that something is stuck in your throat when in fact nothing is. So I called the ENT back and asked him if in fact if he SAW something in the back of my throat. I explained what the Gi doc said and he laughed and said that he SAW edema, inflammation and irritation due to acid reflux. I told him the GI doc wouldn't tell me what the definition of globus was and he said "that's because he doesn't want to say it's psychosomatic!!"

This isn't the first time that this doctor has told me that this is in my head. He said my pain from my Gastroparesis was in my head as well, yet after having Botox injections my pain has disappeared for months at a time! I am so sick of this doctor, his arrogance, his lack of professionalism and his insistence that my problems are in my head. I am headed to Mayo in October to see if we can get to the bottom of why I lack peristalsis in my esophagus, stomach and colon. The current GI doc says it's due to Scleroderma but I don't have a solid Sclero diagnosis. I want answers and clearly this guy is not going to help me get them, especially if his attitude is that it's in my head. Mayo does Botox injections. If I have to drive there (8 hours from home) every 3 months to avoid this guy I WILL!!

The next problem with him, my insurance doesn't want to cover the Botox injections. They are calling it experimental. The last one has not been covered and it cost over $8,000. This doctor is supposed to do a peer to peer review where he talks to the insurance doctor and explains why I need this procedure. It keeps me out of the hospital for a week at a time every month!! He has not made the phone call yet and I am due for another injection now. I don't think it matters to him. He makes me feel so unimportant and now makes me question my own sanity!!

AHHHHH!! So frustrated right now! Thank you for letting me vent and if this isn't ok because it's not dysautonomia related, please feel free to delete. Thank you!!

Kris

[kellygirl]

I am so sorry that you are feeling so frustrated and I can only imagine probably discounted by your doctor(s). All I can say is that I identify with your struggle. My former doctors all told me that my symptoms were all in my head, that there was nothing wrong with me and constantly referred me to see a psychiatrist or a psychotherapist. It is incredibly frustrating and depressing. I sit here 10 years later (when my POTS symptoms) first began and can only shake my head at all the docs that discounted me and my symptoms. Incredibly angry, but incredibly grateful, that finally, I found at least ONE doctor who knows I am not full of sh*t!

I hope you find the help and support you need at Mayo.

And I want you to know you were heard and understood here.

[Kris4444]

kellygirl thank you! It means a lot to me just to have been heard! I have one doctor who is wonderful but he's a rheumy and can't help with the GI mess. I just wish with all the stuff I have going on that there was one place to go where you can get answers.

I'm not even sure that Mayo can help me. I need to be seen in the motility clinic but they have only agreed to see me in the regular GI department to be assessed. If they feel I need to then be seen by motility they will refer me on but if they feel I've had all the tests necessary already then they won't refer me on. I will most likely be making the trip there by myself as my husband "isn't sure" he can get time off work. Whatever. At this point I'm just doing what I need to do to take care of myself.

Thank you for responding! It means a lot!

Kris

[jackiemxoxo]

I have the toughest time with finding good GI docs too. Dysautonomia can cause esophageal dysmotility, spasms, etc. I was on protonix for awhile then switched to zantac twice a day after everything healed. Protonix is great for esophagitis stuff as well as dexilant. I would bring up switching to a different ppi to your doc especially one that targets esophagitis. I'm so sorry you are going through this and I know that this stuff can make life really difficult so I hope you get some answers soon. Following a paleo/anti-inflammatory diet can also help in the healing process.

[Kris4444]

I've had 5 different GI doctors. I'm stuck with this one as he's the only one who has made a difference. There was one other who could think out of the box but he wasn't super helpful either and when I was hospitalized I ended up back with this one.

Maybe a different PPI would help but at this point I'm afraid to even ask for one.

I'm headed to Mayo next month. I'm looking to get a definite diagnosis of some sort as to WHAT is causing all the GI issues and why they are getting so much worse. I was hoping to see the neuro who did my autonomic nervous system testing while there because I'm having a lot of issues with temperature regulation in the heat this summer but he doesn't want to see me

[Katybug]

Hi Kris,

I am sorry this guy implied that this GI issue is in your head. I can understand why your confused too. If he thinks it's in your head, why would he even consider the botox injections? And the issue the botox is treating would quite easily lead to acid reflux. This new psychosomatic theory doesn't match up to his treatment of your issues up to this point.

I'm glad you got an appointment at Mayo. I'm just curious as to why they have ruled the GI issues as autoimmune related as opposed to dysautonomia related, as GI motility issues are a common symptom set of dysautonomia.

I am always sending positive vibes your way, my friend!

Talk to you soon,

Katie

[lynnie22]

Hi Kris,

I am so sorry for your frustration and all you've had to go through! I can totally relate to the frustration. I also hate insurance. They can be so difficult in approving things. I have been having GI problems for months -- so it does belong on this board -- so common with our issues, but I can't find ONE gastro who will do any testing! It is driving me crazy as I'm getting worse and worse. My intestinal tract seems to be not working, but no one listens.

Anyway, I'm glad you at least found Mayo. There are many, many gastros out there. Maybe you need to try someone else or go back to Mayo if you have to.

Again, sorry for all your frustration. So few doctors seem to get what's really going on and it's too easy to say it's psychosomatic when they don't know what to do.

Good luck and feel free to vent here.

[SarahA33]

My heart goes out to you, Kris. I know what a tough summer it was for you and how you've pushed through it. Hopefully things will improve once it starts cooling off, at least somewhat. I'm sorry you aren't going to get a chance to see your pots doctor when you will be at Mayo, An option might be to discuss with the GI doctor the severity of your POTS symptoms and he/she could recommend a f/up appointment with your POTS specialist.

I'm so sorry about the GI doctor. I get botox for migraines every 8 weeks and it's really painful, so I'm going to take a guess that where you get the injections feels like absolute torture. It's a painful thing to have done, so its not like you'd be putting yourself through that unless it helped, and this guy telling you it's all in your head and then injecting you doesn't make sense to me. I totally agree with Katie, his treatment verses what he says doesn't add up. Also, It's terrible that you got stuck with an $8,000.00 bill because he didn't do the peer to peer. Has the FDA approved it for your condition yet? My suggestion at this point would be to do a search for GI specialists (in however many cities away you have to try) who perform this procedure and move on from this guy.

On a brighter note, I am happy that Mayo is coming up for you shortly, and I am thinking positive thoughts! You've got friends here who care about you and support you. Sarah

[Kris4444]

Thanks everyone for the support!

They haven't been able to tell me what is causing my GI issues but my rheumatologist feels it's related to autoimmune disease. I had my rheumy talk to the neuro at Mayo to see if he could see me but he said that my problem is not neurological so he won't see me. My "POTS" diagnosis wasn't a true diagnosis, rather a diagnois of a "hyperadrenergic state". My only findings were high norepinephrine which they felt could be due to taking a drug called Pristiq which was an SNRI. I have since stopped taking it but no one is interested in rerunning the blood test to see what the levels are now. I still have all the same issues that I had when seen at Mayo.

To be clear, the GI doctor never said it was psychosomatic, he just would not give me the definition of globus which made me look it up and then call the ENT. The ENT hinted that the GI doc most likely thinks it's psychosomatic.

The Botox injections that I receive are for my Gastroparesis and are done to the pyloric sphincter of the stomach, not the esophagus. The esophagus stuff is new with a diagnosis after manometry showing ineffective swallowing and slow motility. Now I have this feeling of something stuck in the back of my throat and I'm told by the ENT that he SEES edema and irritation in my throat but the GI doc says that he hears this all the time from ENTs and this is somethingn they agree to disagree on. Even though I had the ENT reiterate (to me) that he did in fact SEE SOMETHING in my throat the GI doc refuses to believe it. Again, makes me FEEL like it's in my head. He never said so. Now I'm stuck with this feeling of something stuck in the back of my throat.

BUT WHY???? That is what is so frustrating!! Why are all the GI issues seeming to get worse without a clear diagnosis? Won't a diagnosis give doctors a better road to follow? The GI doc likes to say that it's due to Scleroderma but the Sclero doc says I don't have Scleroderma. The neuro says I have a "hyperadrenergic state" but other than taking clonodine has no explanation as to why I would have GI issues. The last time I went to Mayo for the autonomic testing they sent me to the GI lab and the doctor I saw went over my notes and didn't even examine me! She was upset that my old GI was treating me with an SNRI for my consitpation issues and said it was not a normal plan of action and felt no need to do any additional testing. At that time, constipation was my biggest GI issue. That was 2013. Here we are 2 years later and I have slow motility or NO motility to everything except the small intestine which seems to be just fine! ***???

I'm sorry for going on and on. I'm just so frustrated right now and maybe I took the GI doctors silence as him suggesting something when I shouldn't have. He's still a jerk though LOL.

[Kris4444]

Oh and Sarah, the Botox injections are not terribly painful. They are done by EGD so I'm sedated. I do get some cramping for a couple days afterward but not everyone does. It has really helped and my fear is that the insurance will still say no on the peer to peer review if that ever takes place. If they continue to deny coverage I don't know what our next step will be. There are pyloriplasty surgeries but they sound very high risk to me with the worry of then getting dumping syndrome.

I hope that Mayo will be willing to look for a cause. That's the main reason I'm going there again.

[SarahA33]

That's great that they've helped, Kris. What a relief that your sedated for them! My insurance company denied my botox the first time, now they've been approved every time the last 2 years. Actually now that I think of it, I'm not sure how I was denied because I had met all the criteria, but it is what it is. You should look into the criteria you need to meet before it will be covered, (example: I had to try certain medications, have more than 15 headache days out of the month etc.)

[p8d]

Hi Kris,

I'm so sorry for your difficulties. I'm quite frustrated with my ANS specialist who thinks my neuro issues are psychological. I saw a functional medicine Dr who did tests for Lyme among others. Turns out I have Lyme and a couple other tick borne diseases so off to a Lyme literate naturopathic M.D. who blew me away with questions about **** I've suffered from for years and never connected the dots, including stomach/digestion issues for years. My take away is try functional medicine and/or naturopathic M.D. Both my husband and I were doubtful and I am only now starting treatment for Lyme so can't tell if it's correct but for me, Lyme, coupled with viral onset makes sense. What I did like about both these Dr's is they listened, looked at the whole picture (including POTS) and will treat all of me along with PCP and ANS Dr. Sending good vibes. Peace,

P

[Kris4444]

p8d I hope that the treatment for Lyme works for you! I've had people suggest that to me as well. My usual answer is that I tested negative for Lyme but apparently that doesn't really matter. Mine all started with a virus too.

Keep us posted as you do your treatment. Sure hope it gets you feeling better!

[p8d]

Kris,

My 3 "regular" (standard) Lyme tests were negative. WI is a hotbed for Lyme so that was one of my first tests. The functional medicine Dr ordered Western Blot and some others. The company we had to send the tests to doesn't accept insurance so we submitted the bill directly to the insurance company ourselves (my husband, not me) and they paid 70%, it was expensive. Apparently most folks with Lyme test negative on the standard tests. What was so amazing to hear from this Lyme Dr was that I have probably had Lyme for years (makes sense, I used to be outdoors all the time), my stomach issues (decades) are probably related, even the cystic acne that developed in my 40's (dermatologist put me on doxycycline, standard treatment for Lyme) so I thought I couldn't get it. After respiratory virus, followed by stomach virus before I was over the respiratory one, I stopped the doxycycline cold turkey, I couldn't keep anything in and just never started again. I can tell you the day/hour when the wheels fell off during this stomach bug. So, even if you have been tested try to get the western blot, especially if you live in a Lyme area. The Lyme Dr said his daughter in veterinary school learned more about it than most M.D.'s. Just saying...

Cold uticara? I thought I was the only one

Sending good thoughts.

P

[Kris4444]

I was rehabbing a farm in WI when I got sick. I live on the IL/WI border.

Lyme has been mentioned many times. Thanks for the info. Hope you are feeling better with treatment.

[p8d]

See a Lyme literate Dr. I can send the name etc of the one I'm seeing if you PM me. He's in Waukesha, 30 minutes west of MKE.

Not much to report yet on treatment, ramping up probiotic now, will start antibiotics/clonidine after testing completed this week. Will keep you posted.

P