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Well, IBD Dr is not Happy with me Now


This is really just a vent - LOL.  I went through the training for the Gattex last week (with my husband since he would be helping).  And the feeling that it just wasn't the right thing to do yet was overwhelming.  I decided not to start the Gattex.  I may later but right now I don't want to risk the many side effects, deal with daily shots and know that the success rate is not very high.  Maybe if I was on fluids all day rather than just a couple hours each evening I would feel differently but I have a (tentative) balance in place right now -- it's not great but at least I can get to work and pay the bills.  

Unfortunately, my IBD doctor is not happy with me at all.  She has been really pushing for this medication (I was feeling very pressured which didn't help).  Of course, when she suggested it she didn't mention it was daily shots or the many possible side effects, etc.  When I brought it up she told me it was "worth the risk" and it would keep me out of the hospital.  It could also put me in the hospital since it can (possibly) cause blockages and other issues.  I am already dealing with side effects from the Crohn's infusion, do I really need more!  

I'm just frustrated at not feeling heard and maybe I'm overreacting about this medication but it scares me and I'm not ready -- why is that so hard to understand?  Sigh.

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Hi Storm the last time i saw my gastro he was pushing for me to try remicade as i was on humira and the side effects were getting to me and as it turned out bcbs wouldnt help pay for remicade so i said i was going to stop the meds and let my body decide what to do next that was 2 1/2 years ago and so far so good.


You are NOT overreacting. If your brain and body are causing you to hesitate, it's with good reason and don't let a doctor insist on anything that you're unsure of or not ready for. All your reasons are valid. Ron makes a good point - docs don't take insurance into account. Sometimes it works the other way - we sense our body needs something and a doc blows it off. I think they're trained to diagnose and treat and your hesitation throws them off. It IS frustrating not truly being heard, you're preaching to the choir here, Storm. Listen carefully to your instincts.


Listen to yourself and your gut feeling. If you don't want to or feel comfortable taking it don't. Your doctor will have to find something else to help,that's what they are there for. You have every right to refuse to take it despite what they say and try and push. It's there job to find an alternative for you. Stick to your guns .


I personally don't trust them. The last thing was with my diet. I stopped eating much, ham and cheese or pieces of chicken, and creatine accumulation almost made me lose my kidneys, started failing till started to eat again, things normalized. But, they didn't catch this for two years. Only a nurse alerted me to tell the Dr. and said you need to get tough with him, he was not listening. I could sue them. Only the specialist caught it and reversed it on time. It could have been a different story. This is a major city where I live but can't compare it to the level and quality of treatment I got in the East Coast, with the same insurance. So, go with your gut, and question everything, and demand answers. The problems with Doctors is when they don't know something, when they are not sure or have no clue, that is when the thing becomes serious, you are at their mercy and if you don't listen to your gut and logic, and force a reaction, you are pretty much in a very uncertain situation to say the least.


I recently had a similar situation.I have been on a round of three different antibiotics which I have to take for the next year.One was making me lose weight (10lbs in 2weeks) and barley could eat and was told I'd only be on it for three.Then the ID doctor went on vacation and I called the office they said keep taking it.At that point I wasn't waiting another week and just stopped it and in a few days I was back to eatting and feeling better.Then I went for a follow up and told the doctor she could be mad all she wanted because I stopped it on my own(I really didnt care at that point) She wasn't but then insisted I go on an experimental antibiotic. ONCE I read about all the side effects I was convinced I wasn't going to try it,but was talked into it by another Doctor that I completely trust and has been there with me from day one. I'VE learned to voice your opinion, ask questions and get second opinions. JUST like when I needed pain medication I was put on Fentnayl and it had horrible side effects and I again refused to use it .It seems that's the 1st thing they want to put you on for twilight procedures. SO I put in my medicial chart (health care app) I was allergic to it so they'd stop giving it to me.I no longer get it for procedures since then and was eventually changed to Tramadol for pain. If you have a good doctor they'll listen to you or like I said seek out another if possible. 

Reply to ron in mich

Thanks Ron!  I feel like I have enough going on with just the remicade which makes me feel like I have a permanent cold or sinus infection -- dry cough, sneezing, headaches.  Not the end of the world but not fun.  And with the nausea showing up most days when the fistula is active I just don't want to add more to the mix.  

Reply to eefyjig

Thank you eefyig.  The insurance was going to cover the Gattex - I was kind of hoping it wouldn't so I could use that as an excuse - LOL!  But thank you for validating that I should listen to my instincts -- I needed to hear that!!!

Reply to Beth22

Thank you Beth22!  I appreciate the support!!  

Reply to Mr.Heart2Win

Yes, this is exactly a big part of what I worry about!  They were giving me this medication in the hospital that resulted in my having a racing heart and dizziness and a big surge in my potassium.  And they were like, wow, don't know what is causing that and put me on a heart monitor and had me cut out all high potassium foods.  When I decided to stop taking the medication (trying to figure out since it was the newest if it was causing the problem) everything resolved by the next day.  The Dr was like, interesting.  Gee, thanks!  So I just don't have much faith in any of them.  I don't trust them to know the right path because I've had too many times when they have not listened or created more problems in the long run!  Thank you!

Reply to Rose Bud 🌹

Yep, I have had several experiences with medications that have made me very sick and the Dr's just don't care or they say stay on it anyway.  There is an antibiotic they gave me once (can't think of the name right now) but it made me so sick and I couldn't keep anything done.  Just like what you experienced.  The Dr didn't seem to believe me so I went to the GP and got it changed.  The Protonix they gave me in the hospital caused heart palpitations, dizziness and a huge sure in my potassium level.   Only by my stopping it and having everything resolved did I finally get them to put it down as a drug I shouldn't take anymore -- but they were against me stopping it in the first place.  I just don't trust them.  They say it's because I have PTSD from all the medical issues/surgeries and that may be -- but that doesn't mean they should automatically be trusted either :-)  Thank you!!


Hi Storm,

  Interesting post.  There's something about Gattex that I haven't figured out yet..........and it's why so many Docs push so hard for its use.  There's something going on, probably not nefarious, but something. Could be they have a very good sales team or that the medical community really wants to know if it works and is the future in its drug class......I'm not sure.  I do know it's stupid expensive, so I'm wondering if there's a financial incentive associated with it. 

I first learned of it back in 2014 when I got my ostomy and my short gut, and I heard about it from my home infusion dietician.  Back then it could only be prescribed it if all other means of oral feeding were off the table, so I wasn't a candidate, but we talked about all meds.  She didn't have any skin in the game and gave me the straight scoop........which was when it worked well.  But when you stop taking it all the gains you made disappear and you're back to where you started.  And if you were one of the unlucky ones who developed the side effects.........well......that wouldn't be pretty.  So you were going to be on it for life and if/when the side effects reared their ugly'd be in pretty bad shape.  But of course by that time there could be something better available.......which is the common sales pitch amongst our medical community.  And when I read what those side effects were..........I was glad I wasn't eligible to use it.  But that was then and this is now.  So it's been out there for a good number of years and there should be significant data on it (that I haven't seen).  I think there's a few people on here taking it, so maybe they'll chime in. 

The needle thing every day really isn't so bad.  I had to do that with a med, and once you stick yourself a few times it becomes second nature and you won't even think about it.  But I hear ya, and it's not high on my list of things I want to do every morning either.  If your Doc is truly upset with you I'd ask why, and have a very candid conversation.  If you can't talk to your doctor like a need a better doctor. 

I'm with you........Gattex is a BIG deal.  It's a big step and I'd never even consider it without knowing all the well as being sure my doc was being straight up with me on why I should take the risk.  

Why are you on IV fluids?  Were you on TPN and weaned off except for the hydration piece?  I'm curious because I was there and was able to get off all IV fluids.  Maybe we should chat. 


Reply to eefyjig



After all my years (79) of never taking medication I was sent home from the hospital with an ileostomy an a myriad of prescription drugs and a sheet of instructions on the time to take each.  My hubby and I sat at at the kitchen table trying to figure it all out.  I was already quite depressed and wondering why I was still alive and quite frankly did not care.  In my frustration I shoved all those prescription drug bottles to the center of the table and said “ I am not taking anything” and went off to bed.  Fast forward 2-1/2 years.   I am still here - I take 1 vitamin b12 daily.  Fingers crossed 🤞and 🎶🎼😁 looking for laughter in all the right places🎶🎶


Well now … I developed Crohn's before it was well known back in college in 1973.  My wonderful doctor treated me with occasional prednisone and Tylenol three for the diarrhea. He couldn't believe how happy person I was with so much pain. I had a few nasty surgeries and finally in 1998 

 I was given an emergency ileostomy.  Since then I've done absolutely great! I take nothing Medicine wise. I do take many vitamins, minerals, flaxseed, oil, etc. I try to drink a lot of water and I live a great life. I don't even know what all these drugs are that you're talking about. I thought the surgery pretty much cured me . It didn't. But it did enough to help me live a life where I wasn't constantly scouting the nearest toilet!

Reply to w30bob

Hi w30bob!  Thank you for the information!  I was only on TPN in the hospital before the surgery (for the ileostomy).  I do regular food (well, avoiding certain things of course) now.  I'm on IV fluids because of concerns about absorption because my ileostomy is high output.  

I read the various studies I could find on Gattex and it just didn't sound worth the risk -- so many side effects to add on top of the side effects I already have from the Remicade infusion.

I think the Dr is mostly upset because she insisted this would get me off fluids -- but according to the studies that is usually not the case.  I can reduce the amount of days you are on fluids but it's a 50/50 shot basically.  

What did you find helped with reducing the dependence on fluids?  



I got my ileostomy in 2017. I've had 5 GI doctors and I fired every one of them. So far they all have tried to peddle their experimental drugs which I refuse to take. You do know they get a kickback from the drug companies.

The side effects scare the heck out of me. In my opinion my Crohn's is manageable. Sure I have diarrhea occasionally. I eat oatmeal and a raw meal replacement drink that has all of the nutrients I need. The diarrhea usually goes away in a couple of days. I do take vitamins, drink probiotics and eat yogurt. If I get indigestion I take maalox or pepcid.

The one time I tried remicade it made my heart race and I itched. The solution, more drugs for the itching and continue the remicade. My body would adjust. No thanks! 

It's been 5years and I'm managing. They need to stop trying to cure everything. Sometimes there is no cure. We're guinea pigs if we allow it. I don't have a problem telling them I'm not taking their drugs. And I've had plenty of doctors get mad and won't talk to me. 

Anyway if you're against it don't do it. I think I'm better off because I said NO! 

Reply to Ebony&Ivory

A kindred spirit 😉👊

Reply to Mr.Heart2Win

If something doesn't " feel" right, it probably isnt.  Listen to your " gut" and don't let ANY doctor push a treatment you don't feel ready for.  They are not the ones who have to live with your health issues.  And many doctors don't like being told No or contradicted so you have to be firm in your refusal.. 

Reply to Mr.Heart2Win

If something doesn't " feel" right, it probably isnt.  Listen to your " gut" and don't let ANY doctor push a treatment you don't feel ready for.  They are not the ones who have to live with your health issues.  And many doctors don't like being told No or contradicted so you have to be firm in your refusal.. 

Reply to Mr.Heart2Win

If something doesn't " feel" right, it probably isnt.  Listen to your " gut" and don't let ANY doctor push a treatment you don't feel ready for.  They are not the ones who have to live with your health issues.  And many doctors don't like being told No or contradicted so you have to be firm in your refusal.. 

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