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.

[Stephanie78]

Chris - That is exactly what I'm thinking. He can't get enough food down (Possibly due to the ulcer in his throat area) therefore the medicines (that should be taken with food) is causing his pain in his stomach. Although he is on high doses of Nexium, he needs to food in his stomach as well! Hopefully the ENT will help with this issue.

Sangye - I believe you also informed me about the probiotic yogurt (which I got and had helped!) I will definitley be going after the aloe vera juice today for him to try! Thanks!

[Sangye]

Good to hear. I agree with Chris about taking drugs on an empty stomach. There are very few drugs that I can tolerate like that, acid-blocker or not.

[Chris G]

Chris - That is exactly what I'm thinking. He can't get enough food down (Possibly due to the ulcer in his throat area) therefore the medicines (that should be taken with food) is causing his pain in his stomach. Although he is on high doses of Nexium, he needs to food in his stomach as well! Hopefully the ENT will help with this issue.

Sangye - I believe you also informed me about the probiotic yogurt (which I got and had helped!) I will definitley be going after the aloe vera juice today for him to try! Thanks!

Is there any chance you could get one of your trusted doctors to look over John's medication list quickly, to see if there's anything which is known to cause stomach upset, that isn't absolutely necessary right now? If he could stop taking just 1 or 2 meds, and get some yogurt in his stomach, it might help. Until the fosomax became an issue for me, I truly believed that I had a cast iron stomach - I can take just about anything (except antibiotics) without consequence. That one stinkin' pill, put me in agony for 2 solid weeks until I figured out what it was. Even then, it took over a week for it to heal.

[drz]

At least you have unanimous support that doctor is not the one to see for any help. The next one should be much better since jerks like that are fortunately rare and not the norm.

Can he swallow Ensure or one of those breakfast drinks? I used to take my meds with that when I couldn't have solid food and had drugs that shouldn't be taken on an empty stomach. It was also best way to get lot of body fuel with little volume when eating was difficult or limited.

Hope things get better soon. It seems like your persistence is gradually paying off so more progress should happen soon.

[Stephanie78]

Chris, unfortunately all of his meds that carry that side effect are necessary. We went to the internal med dr again today and he out him on a medicine for thrush. He has the yeast like infection in his mouth and throat. He said this could be hindering the swallowing of food.

Drz, I bought some ensure and carnation instant breakfast. I'm gonna have John drink it in the morning and evening with his food! This way I know he is getting what he needs but he can still eat his soup, pudding or cottage cheese.

Fingers crossed this helps. He has an appt with ent Friday concerning the ulcer in his throat.

Went to pulmonary dr today, breathing is on key! Yay! He will go back in September for another CT.

[Sangye]

Went to pulmonary dr today, breathing is on key! Yay! He will go back in September for another CT.
That is some great news! :thumbsup:

[Stephanie78]

That is some great news! :thumbsup:

And, he ate an entire can of vegetable soup and a pudding cupand kept it down. Ambien now has him snoozing on the bed. Pretty good day! Well compared to the past month....

[Sangye]

Wow, that's amazing! I think things are going to start to improve for him. A bit of nutrition goes a long way.

[sadpixie]

I am so glad to hear that he had a good day. I had a lot of problem with swallowing and keeping food down when I was first diagnosed in December 2010. I also had a thrush infection but no other diagnosed reason for the nausea and vomiting. At the end of January the nerve that controls tongue movement had become impaired and I couldn't effectively move food to the back of my mouth and it was a struggle to eat anything other than soft foods. They did a swallow study on me and ended up putting me on IV nutrition (TPN). I lost 50lbs from Dec-Feb. Once my meds started to kick in things got better and I was able to slowly build back up to a normal diet.

[drz]

What is he taking for thrush, Nystatin oral suspension or pills?
I am starting the Nystatin oral swish stuff today, it seems to be banana flavored. No directions though on dosage or how long to swish it around the mouth so am using it like a Listerine mouth wash.

[Chris G]

And, he ate an entire can of vegetable soup and a pudding cupand kept it down. Ambien now has him snoozing on the bed. Pretty good day! Well compared to the past month....

Keep the good news comin' !!!

[Stephanie78]

Drz- he was on ths banana Flavored swish stuff while at the hospital and the thrush went away. This time his dr put him on a pill named diflucan (200Mg). He's taken it 3 days now and he can swallow more then before. Last night he had 3 small chicken drummers (bite size ones) which is a HUGE deal. He's been eatting more then before but I'm sure as you all have experienced still not "enough".
Tonight he thought he'd try steak. Definitely too soon for that. He ate maybe 2 bites. He did eat all the loaded mash potatoes and broccoli. My mom makes and delivers him milkshakes with ensure daily (I have amazing parents). They have really helped out a lot. I just got promoted at work and have been super busy this week and my parents have made his meals and taken him to all apts but 2 and cared for him after his procedure Wednesday.
Ok...another question, what about the lack of taste when it comes to the food and the metallic taste. Does that go away/get better?

Thank you ALL for the support. You have no clue how much this site means to us!

[delorisdoe]

From what I read about the thrush/tongue problem, there is often a metalic taste with it. There was for me when I had it a few weeks ago.

[Sangye]

Wow, Stephanie that's great improvement! I didn't have the metallic taste with ctx but some people do. Hopefully it's just the thrush causing it like Leigh said-- it'll go away sooner.

[drz]

Drz- he was on ths banana Flavored swish stuff while at the hospital and the thrush went away. This time his dr put him on a pill named diflucan (200Mg). He's taken it 3 days nownts).

Ok...another question, what about the lack of taste when it comes to the food and the metallic taste. Does that go away/get better?!

My doctor told me they give the swish stuff the first time and then pill form for second treatments if you hve had the swish treatment before.

After intubation and no food for two or three weeks, everything tasted horrible to me. Even the water was so bad i had people bring me bottled water. It took a few weeks before food started tasting good again. In the interim you eat because you have to if you want to get better.

[norcalian]

before my Dx and the hospital, when I was really sick, I had sores on my tongue, the metallic taste or lack of any real taste. it stuck around for a while after the hospital but went away eventually. I found when I was able to finally breathe through my nose and sleep with my mouth closed that things seemed to heal better...although it might have also been because the meds were working on suppressing the Wegs...it's always hard to tell what is what. but the good news is that it got better and the taste returned. Your husband will get there. Eventually as he heals and the prednisone really kicks in he won't be able to eat enough :smile1: at least that was my experience.

[drz]

Eventually as he heals and the prednisone really kicks in he won't be able to eat enough :smile1: at least that was my experience.

Boy was that true for me. I was eating 6 meals a day plus same number of snacks trying to re gain weight I lost. It came back quickly plus a large amount of extra weight for spare in case of another severe flare. :biggrin1:

[marta]

I also had loss of taste but I believe that was due to not being able to smell - since a large part of tasting comes from smelling the food (other than the four basics - sour, sweet, salty and bitter, whose receptors live on your tongue). Mine has been pretty bad until just recently. But it's coming back, and it's great.... that didn't stop me from eating way too much and gaining all the weight I lost and then some as drz mentioned. Boooo.

[Stephanie78]

He has been on the pred since the end of April and has lost 45lbs in the past 6 weeks. He continues to lose?? He was a healthy weight to begin with, so he's looking pretty bad right now.
Today he did eat (for lunch) a grilled pork chop, about 1/4 cp of stuffing, about 1/4 cp creamed corn and about 1/4 cp of Mac n cheese. That's the most for one meal in weeks!
He keeps having the severe stomach cramps late in the day. Weird thing is, his symptoms are the EXACT as mine she I had a gallbladder issue. But, hey I'm not a dr...
Chapel Hill visit this week. This time outpatient for 2 days so we will be taking our kids for a "mini" vacay for them (hotel with pool) luckily they are not picky!

[maria garcia]

Stephanie Im happy that John has been able to keep his food down. It sounds like he is doing a turn around.

[Rose Cozzette]

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. you hang in there, unfortunatley it takes awhile to find the good docs. I left 3 before i ended up withe the ones I have. and I raised my voice at a few before they listened. I still argue with some but I tell them its my life or death so pay attention! and being on preds in high dose actually helped as words would just come out of my mouth, oh well...