*GI docs piss me off*

[silveyk]

My spouse is having a severe flare. She is so swollen in her ileocecal valve from her Crohn's that she has a partial obstruction and severe constipation. Hospitalization did nothing for it. For the first time, she is not responding to steroids. She also has pain from the bloat, Crohns-related arthritis, and muscle cramps (because her electrolytes are off...thank gawd for Pedialyte). Her GI doctor said there is nothing he can do for her, "you just have to ride it [the flare] out." Then he said it sounded like she is forming a stricture and may need surgery in the future. When asked how to deal with the pain...answer: Tylenol. Hmmm...I'd like to lodge a watermelon in his rectum and then tell him to "just ride it out" with a little Tylenol. MF! :kissgrits:

No one ever mentioned stool softeners or laxatives to her. I came up with that. No one suggested Pedialyte for the cramping...instead they like to give horse pill-like supplements (which few people comply with). She already takes more pills than an HIV patient. I think I have finally convinced her to do a nutritionally sound liquid diet until the flare chills out. Of course her doctors know nothing about nutrition except to repeat the low residue mantra. And getting an appointment to see a nutritionist takes 6 months.

The GI docs still call her case atypical. :voodoo: The irony being that not all Crohnie's present in the classic manner. However, if she walks like a duck, and sounds like a duck, the likelihood is she is not an effing zebra. It took her Rheumatologist to put her on Humira...not GI. MF! They were too busy being scared by Humiras possible side effects. If she is willing to take the risk for a better quality of life now, then ethically they should honor her autonomy, and frickin' help her. Everything has risks. I've seen people bleed to death from aspirin and ibuprofen. You could die crossing the street here; it happens weekly.

She is so scared that she'll have to have surgery...lose large amounts of her bowel...and have to wear "the bag." She says things like "I understand why cancer patient's with severe pain sometimes kill themselves." Okay that right there means someone is not doing their job. They are not controlling her pain, and not offering alternative solutions. It is freakin' unacceptable.

And no, I really can't fire her University GI docs due to the parameters of my health insurance...or I would. I hate them; I hate Crohn's; and I hate I am a doctor and cannot do more for my spouse.

Dr. S :depressed:

******
Her regimen:

- Asacol
- 6-MP
- Humira (bi-weekly)
- Steroid taper
- Aloe vera / Senna / Miralax
- Pedialyte
- Probiotics
- Ginger force

 

[Keona]

Wow Dr. S..
I just said the exact same thing the other day " I understand why people commit suicide or head to the streets to find their own pain relief."....

I went through the same thing with the doctors not helping with pain management and for years my GP wouldn't acknowledge I had endometriosis or Crohn's.... she kept telling me to take advil... take advil.....every time I went in to see her.... they never helped with the constipation either until recently...
when I called my GI, they told me to see my GP, my GP told me to call the after hours on call, they told me to go to ER, ER told me to follow up with my doctor...and the circle kept repeating itself...
I have honestly seen approx., over 15 different doctors to get somewhere... and because of all the waiting... I am having surgery tomorrow... it also pisses me off because now they are saying 'no wonder you are in so much pain"...
I think there should be an uprising of Crohns patients... make some noise... I dont know... I am truly stunned by a lot of the stories I have read on here. One would think you would get help considering you are a doctor though. My friends husband is in internal medicine and they told me if I ever need to get in to ER quick to let them know...that they have certain privileges and don't have to wait in line. Have you tried the ER route and just kept going back to different doctors??
I think it is a colossal shame that your wife has to go through the pain she is in.. whatever happened to "do no harm?"....
I think your sarcasm is hilarious and sums up what I couldn't say myself... I am so glad your wife has you on her side.. and that the Crohn's community also has a doctor that understands..
I dont know much about insurance where you are but if a doctor says "there is not much I can do for her" isnt that grounds for a different GI?? Clearly there IS something he can do for her.... starting with pain management... that is ridiculous... noone mentioned anything to me in the beginning .. no laxatives, stool softeners...etc..etc... they are suddenly listening I think because I am not going away..
I wish I could help or have an answer for you... someone has to listen to you eventually... and I think it sucks - I have always said there is no care in the healthcare system anymore...

Take care and my best to your wife
Wendy

 

[mommytocrohn'steen]

Sometimes when there is something going on with someone, for or five of us (nurses) will get together and just keep going back and forth for ideas for the md. ----they are only there on & off, the nurses are the eyes & ears----. Maybe that is an idea for a thread..a q & a with the most exp cronies on the panel!!!

 

[Crohn's 35]

Hey Doc, where were you 20 years ago??? I needed some like you at the time to bounce off my anger, when a surgeon told me all the pain I was in was in my head!! (after he took out my "mircoscopically leaking appendix). My mom was there and I could of crawled on that surgeon's desk and whack him in the head! I realize Crohns is so hard to find but to sit there and say that :devil:. Turns out I had an amazing Gi that went to bat for me, because he knew something was wrong. Even my Gp was fairly new and she was amongst men and their egos. Long story short, my Gi proved it during a colonscopy and my Gp quit because she couldnt take all the crap I went through. Too bad because she was a caring doctor! So I ended up with laproscopic surgery and was the best thing I did, had about 6 inches at that time around the Ileum...RIGHT where the appendix was... ^%$ moron first surgeon. If it wasnt for a teaching doctor in Toronto Gawd only knows where I would be today, he found it. At that time, no pc's no crohns forum, on my own with a 4 year old, had no clue.

If your wife has a full blown blockage, you know it is serious and the worse pain, 100 times worse than a natural no drugs birth of a 10 lb baby! Sometimes drugs dont work and I had 7 years of bliss, but I was stupid and didnt stop smoking until just before my second surgery. So I know what anger and frustration you are going through. I know your wife doesnt want surgery and I have had two and no bag... everyone is different I know.

I see you have her on Gingerforce, it takes time to work, and for me it was great.

She may have to be in the hospital with an IV of antibiotics, and I know it isnt what either of you want but as my husband says, the belly pain comes first. I hate Crohns too, we all do. Hope she feels better soon. :hang: both of you!!!

 

[Lydia]

Your wife is lucky to have you by her side to advocate for her. Hang in there.

 

[happy]

Hello silveyk,
It sure can be frustrating when we are in pain and there doesn't seem to be a solution in sight. I have felt at the end of my rope a few times in the past six months. I was getting sicker and sicker with more and more pain and limited access to health care due to the shortage of doctors and IBD specialists where I live. I needed to find a solution that was under my control while I waited for medical help. So, I researched the treatment of IBD with an elemental diet. I have been on it intermittently for four months--I initially intended to be on it for three weeks as most research states that it takes up to three weeks to induce remission. However, in my case it took ten weeks and unfortunately I keep relapsing when I return to eating despite following a full elimination diet.

Now when I go back on the liquid elemental diet it only takes a few days before I feel really good again. The best part is that it has given me some control over my health while I wait for more treatment. I don't have to continue to suffer and "just ride it out".

I encourage you to research the elemental diet as a way to induce remission and then share this info with your spouse. It might help to give both of you a bit of a break from her symptoms while you try to find some other solutions.


I wish you both well.

 

[tiloah]

I am so sorry you are both having to deal with this. I can definitely relate. Lately I am asking myself why GI docs are so slow to act... it seems like a lot of Crohn's related surgeries tend to be emergency ones...

And I can totally relate to

I just said the exact same thing the other day " I understand why people commit suicide or head to the streets to find their own pain relief."....

and you are absolutely right that if a patient is saying that, or thinking that, something is not happening that needs to be happening.

I hope you are both able to find some comfort and relief and get her some treatment. In the meantime I can tell you, I relate. We are here for both of you in whatever capacity we can be.

 

[Cat-a-Tonic]

Dr. S, how frustrating it must be for you to see her in pain and to be a doctor yet not be able to help her! Are there really no other GI docs covered under your insurance? How frustrating that must be too. Does your insurance cover other GI doctors maybe a little farther away? Or is her general practitioner able to refer her to someone that specializes in pain management? At any rate, I hope she is able to get her flare and pain and partial obstruction under control. And please don't hesitate to take her to the ER if things change or worsen! At the very least I would think the ER could give her something for the pain. Keep us updated on how she's doing. I hope she gets some relief soon!

 

[BigRed]

I've had Crohn's for almost 20 years now, and the one constant I've found is that GI doctors are a-holes. I've found one here in Dallas that is an actual human being with emotions and compassion.

Best of luck to you both, and yes, fire that doc the second you're able to!

 

[mommytocrohn'steen]

Silveyk,
My heart breaks reading your post. It is the norm when it is the patient or the family member, but that you are an MD as well adds more salt to the wound.
I have always witnessed one doc going above & beyond for others doc's and families. That you are getting no where with her GI, and you are an MD, makes me wonder how he treats the little guy.
No joke, go and find some seasoned nurses. Ask them who they have heard GOOD things about. You know not to mention current docs name or lack of competence. Patients are always sharing stories about dr's, hospitals, maybe you can learn something that way. I believe they rate online, but don't know if it would be reliable. I feel sometimes only the bad info gets the vote

I wish you luck.
kathy

 

[ameslouise]

Wow, the more I read about these types of situations with GI docs, the luckier I feel. My doc would NEVER let me suffer in pain like that! I can't believe they would treat her like that, especially with a fellow Dr in the room!

Please encourage your wife to poke around the forum (if she hasn't already) to read the stories from all of us, to realize she is not alone. Surgery doesn't not necessarily mean a bag. It can be a resection and it can mean an end to a lot of misery. Many people feel tons better after having a bad section taken out.

And if she does end up needing a bag someday, that is not the end of the world either! For most of us it means a much better life.

Please tell her to hang in there! I hope you find a solution very soon and something to help her feel better!

- Amy

 

[Doc]

Wow - that's awful... I would consider requesting her GI team to present her case at some type of multi-institutional conference, or ask their colleagues at this year's DDW, or something. Either that, or get her reports yourself and see if you can request a paper consultation from an expert - UofC and Mayo have excellent IBD people (e.g., S. Hanauer, W. Sandborn, etc.) Not sure if this is available, but what else can you do in the meantime!?

I fired my last GI after I found out (...wait for it...) he wasn't even board certified in GI! Apparently he finished his residency, but never did fellowship! I would consider myself to be a VERY informed consumer re: Crohn's, but never even THOUGHT that I would need to verify a physician's credentials! My new guy is solid (and legit - I googled everything I could find about him!) But, wow, this other guy is a revoked medical license waiting to happen...

 

[aliciars]

GI docs piss me off too.

One approach that I used with my doc, was I flat out asked him if there was a Crohns specialist I could see since "we" were having so much trouble getting me into remission. I ended up at University of Chicago, as Doc mentioned - now when I have a problem I call them directly and they pass the orders of what to do onto my local GI. FINALLY I think I am seeing remission after almost a year of treatment with my local GI. Crohns is a difficult disease, so I used that angle with my doc here.

I am so sorry your wife is in such pain. I hope you find some relief for her.

Oh, I had to have my GP prescribe some of my meds - for me it was a sleep aid - but maybe her GP can prescribe something for pain?

 

[DougUte]

:stinks: I have had partial obstructions before. I know what your wife is going through. What I can't believe is they are treating her this way when you are a doctor!

Stick with her. I cannot help but think there is a way to get her to another G.I. doctor. ....

 

[ekay03]

hi silveyk, I understand your wife's pain. GI docs never like to give pain meds. Something about slowing down the bowels. Surely there is a way for you to use your position as a doctor to get your wife some help. You mentioned that her GI doc was at a university hospital. There must be someone above this doctor that you can talk to. What is her doctors position at the university? Intern, Resident, Fellow? Go over the docs head. Speak to whomever runs the GI program at the hospital.
Good luck to you both

 

[ekay03]

Here is another one of my favorite lines "If we mask the pain with medicine we won't be able to tell if there is something seriously going on." I have an answered for that one. Oh yes you will. I happen to know from firsthand experience that if there is a perforation in the bowel no amount of pain pills will mask that.
It really bugs me that they use the same lines on everybody. I used to think it was only me that couldn't handle the pain. I always thought it was only me that was fighting the doctors for some pain relief. I don't Know how these doctors live with themselves. Making us all feel like junkies. Telling us to take Tylenol.
And a big EFF YOU CROHNS from me too. And EFF YOU to GI doctors that say " there is nothing I can do for your pain" Oh one more line that just drives me up a wall. "if you are in that much pain you should go to the emergency room. Talk about passing the buck!!

 

[mommytocrohn'steen]

As if they don't just label 99% of people DSB in the ER.
DRUG SEEKING BEHAVIOR.
I cannot think of anything more degrading for a crohns pt.

 

[Keona]

they call them GOMERS here (Get out of my emergency room).
applies to any "undesirable"..

I have been through this and it is hard for me to hear someone else is...
all I can say is hang in

 

[ameslouise]

I think I will give my GI a big kiss next time I see him!

- Amy

 

[ekay03]

I can very happily say that this no longer applies to me. I now have a very caring doctor that addresses my pain and has me on pain meds as needed. I do think the tide is slowly changing in regards to pain meds and crohns. More research has come out on the detriment of pain on the body. I don't know what they used to think about pains affect on the body. But after extensive research on the subject the researches now believe that pain sucks.

 

[maxibear]

i thought my gi was really good, until he pulled me off cipro because i tore my achielles. he only mentioned this side effect after the fact, he also did not put me on flagyl, when off the cipro, so i had another partial blockage and put myself back on the flagyl , since i had some around. have lost faith. i am convinced, i know as much as hi, which means i am a quick study or he is not the sharpest tack in the drawer. he also never told me what to eat when i had my first surgury, so i assumed, lots of fiber, which caused second blockage.now, i figure things out myself

 

[DougUte]

But after extensive research on the subject the researches now believe that pain sucks.

Research? All they had to do was ask us! Next time I have to go to the ER to get relief from my pain I would love to have some researcher present. Or better yet, give them the ability to feel the same pain, same intensity that I do! Maybe then they will realize we are not a bunch of people looking for drugs!

 

[crushingcrohns]

Awwww man that sucks! I feel so bad for your wife because I know what it's like having that severe pain, achy everywhere and even drinking water hurts. I slept alllll the time when I was in the peak of my flare. I had nothing in me to do or go anywhere.
I agree with you about GI doctors. I have been through so many because i'm firm about what treatment i'm on and what I will allow doctors to do to me. I butt heads with most GI doctors and don't trust any of them. I do all my own research on better treatments that may be available because I just feel the current new meds that all the doctors rave about are complete garbage (toxic, loads of side effects, costly). Nothing about biologic drugs sit well with me. I never felt good about going on the remicade and quite frankly i never felt a worlds differnce when i was on them.

fyi - i will post the studies on my site about acupuncture, but it works for treating Crohn's. about 10 sessions or so is said to reduce enough toxins that the Crohn's disease goes away.
& yes, diet make SUCH a difference and doctors know nothing about it, nor are they aware of vitamins, herbs ect. that would be helpful to people with Crohn's. Sad situation.
Hope she starts to feel better real soon

 

[crushingcrohns]

Just wondering how your wife is feeling? I really hope she's gotten some relief.
I have to ask.... are you guys working with the same GI Doctor? I really hope not. He is not a good doctor. Just from what you wrote about the guy, "you just have to ride it out" It's like.. is he retarded, it's not a common cold or flu. The insurance situation is BS. Call the insurance company and tell them the situation and what the problems are and that you need a different GI doctor immediately. There is no way she will say you current doctor is the only one on the list that you can see? That doesn't even sound ethical. There MUST be more than 1 name on that list.
The only reason I stress this, is because if you have a shitty doctor, your wife will get shitty treatment . plain & simple. I have gone through 8, yes 8 GI doctors. It's impossible to work with a doctor that you butt heads with. Just put some effort into this , talk to some people, make some calls and you will find if you're persistent enough.... like me. I just tend to never give up when im looking for something because you need to believe that you will find what you are searching for. If something is reachable you just need to keep at it, until you finally grab it. Good luck:thumright:

My spouse is having a severe flare. She is so swollen in her ileocecal valve from her Crohn's that she has a partial obstruction and severe constipation. Hospitalization did nothing for it. For the first time, she is not responding to steroids. She also has pain from the bloat, Crohns-related arthritis, and muscle cramps (because her electrolytes are off...thank gawd for Pedialyte). Her GI doctor said there is nothing he can do for her, "you just have to ride it [the flare] out." Then he said it sounded like she is forming a stricture and may need surgery in the future. When asked how to deal with the pain...answer: Tylenol. Hmmm...I'd like to lodge a watermelon in his rectum and then tell him to "just ride it out" with a little Tylenol. MF! :kissgrits:

No one ever mentioned stool softeners or laxatives to her. I came up with that. No one suggested Pedialyte for the cramping...instead they like to give horse pill-like supplements (which few people comply with). She already takes more pills than an HIV patient. I think I have finally convinced her to do a nutritionally sound liquid diet until the flare chills out. Of course her doctors know nothing about nutrition except to repeat the low residue mantra. And getting an appointment to see a nutritionist takes 6 months.

The GI docs still call her case atypical. :voodoo: The irony being that not all Crohnie's present in the classic manner. However, if she walks like a duck, and sounds like a duck, the likelihood is she is not an effing zebra. It took her Rheumatologist to put her on Humira...not GI. MF! They were too busy being scared by Humiras possible side effects. If she is willing to take the risk for a better quality of life now, then ethically they should honor her autonomy, and frickin' help her. Everything has risks. I've seen people bleed to death from aspirin and ibuprofen. You could die crossing the street here; it happens weekly.

She is so scared that she'll have to have surgery...lose large amounts of her bowel...and have to wear "the bag." She says things like "I understand why cancer patient's with severe pain sometimes kill themselves." Okay that right there means someone is not doing their job. They are not controlling her pain, and not offering alternative solutions. It is freakin' unacceptable.

And no, I really can't fire her University GI docs due to the parameters of my health insurance...or I would. I hate them; I hate Crohn's; and I hate I am a doctor and cannot do more for my spouse.

Dr. S :depressed:

******
Her regimen:

- Asacol
- 6-MP
- Humira (bi-weekly)
- Steroid taper
- Aloe vera / Senna / Miralax
- Pedialyte
- Probiotics
- Ginger force