Dissapointing appointment

[Stephanie78]

Today John went to the GI dr to have an endoscopy procedure to see 1- why he has problems swallowing and 2- why he has severe abdomen pain. After the procedure the dr "briefly" and "rushed" came in to talk. He said John has an ulcer in his throat before the esophocas and that, that was not his concern that he needs to go to the ent. John was doubled over in pain moaning and the dr said "go feed the man" he started to walk out at this point! I asked him what about his stomach pain. He looked at me like I had 2 heads! He said he knew nothing about his pains. I had the papers in my hand that the nurse had handed me and it said "due to swallowing issues and abdomen pain" I pointed that out to him and he told me to schedule another appt. Then he said..."Mrs Stover you husband has a disease, there will always be pain, this is his life" and walked out!!!!!!!!
I went to schedule the appt..August! Bull S###. We go back to chapel hill next week and I will see about seeing a GI at the hospital there.
In the meantime I am going to give him merilax to help empty his stomach daily where it is not sitting linger then it should. Oh and did I mention he wanted to take him off any pain pills. The only reason he takes them is for the abdomen pain. Out of all the drs we have seen he is the first where I left made. Did I mention i had to pay him $160 up front...

[Chris G]

"Mrs Stover you husband has a disease, there will always be pain, this is his life" and walked out!!!!!!!!

OMG Stephanie.......excuse me.....but what an ASS he is! Who says something like that and sends you on your way?!?! Especially when he failed to even try to diagnose the source of the stomach pain! Sounds like malpractice to me.

How quickly can you get him to a GI at Chapel Hill?

[Stephanie78]

We go to Chapel Hill on Wednesday for a renal biopsy. Then he has his CTX infusion on Thursday. We are hoping since this is all at the hospital that we will be able to see the in house GI group. They were amazing when we were there 2 weeks ago.
I realize he is in pain. He said the pain med was probably causing lazy bowels and that is causing the pain. He is only taking the pain meds due to that pain! I'm no doctor but his theory just doesn't make sense to me. And yes I realize he has a disease. Guess I didnt realize that people with diseases just has to suffer because THATS THEIR LIFE. Freaking moron. I just don't understand the insensitivity.

[maria garcia]

What a MORON! Poor John, I hate when they treat sick people like they just need to deal with it. My mom has real bad back problems and is pretty much bed written and her doctor said "there are worse things" " learn to deal"! Have you thought both thought of a temp. feeding tube. My grandfather had one for a while and he got all his nutrients until he got better. John needs his nutrients to get stronger and fight this disease. Ive had bad experiences with doctors there are some not caring ones. Stay strong maybe staying in the hospital for him would be a good option. I know you need to work maybe someone in your family can help with him. I think it would give you some peace of mind. Thinking of you and sending positive thoughts.

[delorisdoe]

Stephanie, you and your husband need to know that he is wrong. Wegners does not always mean pain all of the time. I went years with no symptoms at all. The pain and the symptoms go in cycles and are sometimes worse than other times but rarely are they as severe as what your husband is going through. I cant imagine the defeat you both must have felt when he said that and it pisses me off because he was wrong.

[Stephanie78]

We have an AMAZING group of doctors. He will NOT be included with that group!
John dealt with a lot of pain due to the wegeners in the beginning (couldn't walk, ear pain, testicle pain, joint pain in his fingers etc...) and the treatment did away with all of that (pulsate steroids, high doses of prednisone and ctx infusions). I'm convinced the issues he has had over the past couple of weeks are due to the meds. Funny how one med causes you to have to have another med for a symptom the first med caused. I hope that his body will adjust soon. I totally believe he will hit remission at some point and time and believe he will be pain free. We are gonna make an appt with the ENT to see what we can do about the ulcer in his throat. I firmly believe if we can clear that up and he can swallow the food he will have more strength and he will start feeling better. Not that I think he will be cured over night but atleast have more strength to fight.

[elephant]

I am really sad to hear how that doctor treated you and your husband! That doctor needs to be written up! Hope they find out soon about his stomach pain!

[Sangye]

Man, Stephanie that doctor was totally out of line and just plain wrong. Wegs isn't a disease where that type of pain is the norm. I'm glad you're going back to Chapel Hill for proper care.

Meanwhile, if John can drink aloe vera juice it will help the ulcer heal a bit and might help with his bowel issues. You can get it at the health food store.

[Chris G]

John dealt with a lot of pain due to the wegeners in the beginning (couldn't walk, ear pain, testicle pain, joint pain in his fingers etc...) and the treatment did away with all of that (pulsate steroids, high doses of prednisone and ctx infusions). I'm convinced the issues he has had over the past couple of weeks are due to the meds. Funny how one med causes you to have to have another med for a symptom the first med caused.

I've been thinking the same thing here Stephanie. Stomach pains are not a normal part of wg, and I've seen the mammoth list of drugs John is on! My gosh, it's no wonder his stomach is screaming. I just had to stop taking fosomax because I was in agony from it - it just takes ONE drug that your stomach can't handle. AND if John's taking most of his drugs on an empty stomach (if he can't eat), it must all be compounding his already raw insides.

[NicShaf]

I cannot believe that doctor had the audacity to say that to you, who does he think he is?!?!?! Doctors are in the work of HEALING people, maybe he missed that part of his job description.
I'm sorry that you and John have to deal with A*#holes like that. You're both in our thoughts, hoping they can get John on the road to recovery soon.
Keep us posted.