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GI Doc told me to find another Doctor

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Posted 10/24/2014 8:07 PM (GMT 0)
Hi Everyone,
It's been a while since I dropped by. Life decided to get busy at the most inconvenient time...

I'd love to get people's opinions on my doctor's latest behavior.

So, my doc wanted me on Remicaid since I first was admitted to the hospital in February, but I refused and just used prednisone. I've been on it for a long time, now down to 15 mg/day. Last time I saw my doc was in August and I was on 30mg. He wanted to put me on Remicaid still, but we discussed Simponi and I agreed as long as my insurance agreed. The insurance wanted a request letter from him. Then I never heard back from anyone about anything. When I ran out of prednisone, I called and his assistant said that he wants me on Remicaid and doesn't want to put me on Simponi. She also said that since I was against Remicaid, he suggested I find a new doctor.

Now some back story: Last September, I went in to my PCP for a cyst on my back. It was quite inflamed and the doc lanced it then had it cultured and put me on Cipro. Tests came back saying I had E. Coli! I also called my GI to let them know that I was going to take Cipro. After a week on Cipro, I felt MUCH better than I had in months. Not cured, but it really made a difference in my intestine.

Though I don't know for sure how I got E.Coli, it seems like it probably came from my gut. So the question is, WHAT WOULD HAVE HAPPENED IF I HAD GONE ON REMICAID OR SIMPONI, WHILE I HAD E.COLI?

I can't imagine that it would have been a GOOD reaction. I have not found another GI doctor and I have an appt on Nov. 18th with the old GI doc. Any suggestions on what I should tell him?

I AM getting better, but it's very slow. It seems that, at this point, I will get better if I just keep taking my herbs and eating very carefully. It could be a few more months though.
Posted 10/24/2014 8:19 PM (GMT 0)
It sounds like getting a new GI doctor might be a good thing. Can your PCP recommend a different doctor?

I prefer a doctor who I can work with and who listens to my opinion. It doesn't sound like the current doctor is really good at that. I also wouldn't stay with a doctor who had his assistant "fire" me over the phone.

When you were diagnosed with UC did they do a scope and take biopsies to confirm the diagnosis? If not, I would definitely find a new doctor and have that done before trying Remicaid.
Posted 10/24/2014 8:28 PM (GMT 0)
Your doctor was probably pushing the Remicade because he wanted you off the prednisone. It's terrible for you to be on steroids long term. In my opinion staying on Prednisone is worse than being on Remicade or a another biologic. He must have liked Remicade for his patients and that's why he wanted you on it. They all have different preferences to the drugs they like. I think seeing another GI is a good idea. Keep trying to find one you feel comfortable with. I really don't think treating your UC with herbs is the best answer.
Posted 10/24/2014 8:33 PM (GMT 0)
Same thing dropped one for not handling my horrible anemia which hospital gladly did after I was hit head-on.
Problem solved.

He also insisted on Humira or the other one not Remicade though.

I found a new GI and after scope she was doing the same thing, surgery or biologics. I told her I am the only parent my child has and not interested and she told me to find another doctor.

I then had my GP order my prednisone as she only gave me enough to fail. He eventually had me sign a 'Directing my own care' letter and let me describe the taper and order vicodin which helps slow the gut.

Last time I contacted neither doctor, no prednisone so never really got 100% of the way back so diet is critical.
Posted 10/24/2014 9:02 PM (GMT 0)
I think the doctor was smart for not wanting you on pred long term. I also agree that being on Remicade is probably better than being on pred long term. Not sure why you would prefer Simponi to Remicade other than the infusion versus the injection thing. Also not sure how the C-Diff fits in. I think a new GI is in order because you both have to feel comfortable with each other. This relationship has reached a dead end. I also wonder how much that stuff in your signature is working since you have to ask these questions in the first place. I believe I may have asked you that before.
Posted 10/24/2014 9:31 PM (GMT 0)
I didn't have C.Diff., I had E. Coli.!
I totally agree about not wanting to be on prednisone long term, but my point is: What if I'd switched to Remicaid (which suppresses the entire immune system) WHILE I had E.Coli.? Shouldn't the doc had taken a stool sample first?

In fact, they tested me for everything when I was in the hospital (last feb)and I THINK they said that I had C. Diff but they put me on lots of flagyl and some other antibiotic, so that was all cleared up. Then somehow, I got E.Coli last september.

Gary, to be honest, I've been under a lot of stress and nothing has helped much but my general trajectory is that I'm getting better. When I take caprylic acid and goldenseal, I seem to get better. The VSL-3 is also very helpful. It's just really really slow and I wasn't able to take many herbs when I was also taking Warfarin, but I'm off that now. When I make any little mistake in my diet, it takes days to fix it. By mistake, I mean, eating basically anything other than zuchini, sweet potatoes, eggs, okra and cucumbers. :(

Colitis Girl, I'm not even sure that I have UC. My symptoms are different from what everyone else seems to be describing. I'm inflamed all over my gut, but since I left the hospital in March, I have not bled at all. Yes, the doc did a scope and biopsy to confirm that it is UC but I KNOW that all of this happened to me because I ate gluten for two years (unknowingly) and I destroyed my gut. It will take a long time and lots of care to rehabilitate from that. My doc showed me pictures of my gut and said he had never seen anything as bad as what I had, and he used to head the GI dept at John Hopkins.

My question is about the E Coli and the remicade. How do people who use remicade react when they also have a serious infection like E Coli or C diff? Can you add anti-biotics to the mix?

The E Coli is a real mystery to me.
Posted 10/24/2014 10:16 PM (GMT 0)
Sorry about the misunderstanding regarding the C-Diff, E-Coli thing. My bad. You are 100% correct that these biologics can bring on life threatening infections, no doubt. Your case is kind of complicated. One of the reasons I refuse to take the immunemodulators or immunosupressants and the like (including the biologics) is because I don't have a spleen and one bad infection and I could be pushing up daises in just a matter of days. You do need some kind of a plan that isn't long term steroids. Not sure what to advise though. You are also wise in that if things are going in the right direction, then they're going in the right direction. You can't argue with that and you certainly don't need any complications from attempting dangerous treatments while knowing you have serious infections already. A lot of people in general have these bad bugs in their systems but the good gut bacteria keep them in check, only to be screwed up by these harsh meds or antibiotics.
Posted 10/24/2014 10:44 PM (GMT 0)
Your case sounds really complicated! I really think that in the long term getting "fired" might be a good thing. If you can, find another doctor that you feel more comfortable with. I think having good communication is really key to feeling better.
Posted 10/24/2014 11:17 PM (GMT 0)
Here are my thoughts:
1. You were dx'd with UC after biopsies...you have UC. Doesn't really matter if you bleed or not from it. Not everyone does.
2. Prednisone is not a long term treatment. It is the only med I see you taking to treat the UC. Not something I recommend. BTW prednisone lowers your immune system pretty well on its own so you run a risk being on that while you have an infection too.
3. I'm pretty sure e-coli from a cyst is quite different than e-coli in your gut. A cyst is an enclosed sac and whatever is in there is prob not a systemic thing. I've had many cysts so I'm quite familiar with them.
I wouldn't worry over what would have happened if you were on remicade with the cyst since it didn't happen. However, if it makes you feel better follow up with tests to make sure you don't have e-coli in your colon. I think you would be VERY sick if you did though.
4. Find a doctor you can work with. He/she needs to be able to hear you, but we as patients also have to be willing to take recommendations. Each dr has their own method/drugs/treatment plan they prefer. If it is not working for you change.
5. In my experience herbs is not enough to treat this disease. I think you agree based upon your post. BTW goldenseal is a herbal antibiotic. Not good to be on long term.

Basically, I think you need to forget about "what ifs" and get a plan of action in place to treat your UC that gets you off pred.
Posted 10/25/2014 12:13 AM (GMT 0)
Of course you have e. coli in your colon. Everyone does.
Posted 10/25/2014 2:04 AM (GMT 0)
Not to chime in against your desire to avoid Remicade, but I would really consider it.

I resisted for almost three years that my GI doctor wanted me on it. This time included herbal treatments and supplements. I thought I was doing well, but it really wasn't long lasting. Most of the time I was seeing a bit of blood and 4 to 7 BM's per day or more. Eventually I flared more intensely than I'd ever imagined I would, and the decision for Remicade became easy because I had zero quality of life.

I personally have a side-effect of severe pain while on Remi, BUT, most people do not have the pains and really... oh man is life better in regards to UC. I have lived a different life since I was able to be fully functional.
Posted 10/25/2014 2:16 AM (GMT 0)
Prednisone is also an immunosuppressant.
Posted 10/25/2014 2:20 AM (GMT 0)
I am of a little different opinion here. I would not go on Remicade. I do not think that an 8 hour infusion is reasonable. If my GI had insisted on it I would have fired him. There are plenty of other options - Humara, Simponi, Entyvio, etc.

I accept that I am new to the board so may not have the credibility of some of the older members.

I will also say that I have fired 3(?) GI's for different reasons. I like my current GI and plan on sticking with him. While I think he is good and I like him and his staff I do not think he is the best GI in the world. However I think I would be more likely to find worse than better.

Now I agree with the people saying you need to get of predisone. I resisted it and only accepted it if we agreed it was for a very limited time. Personally I would take most drugs over predisone. It is horrible for you and I have seen the very negative results of long term use in others.

In may case I embraced Uceris due my perception of less side effects. However in my case it made my symptoms worse and I would have been better off taking nothing.

Post Edited (Captain Slow) : 10/24/2014 8:27:15 PM (GMT-6)

Posted 10/25/2014 2:32 AM (GMT 0)
***disclaimer*** I had to put one of my cats down today so I'm in a bit of a mood ***sorry for the hopefully brief hijacking ***




"One of the reasons I refuse to take the immunemodulators or immunosupressants and the like (including the biologics) "



are you effing serious ?? no doctor in his right mind would prescribe anything close for whatever it is you have - you seem to have some inferiority complex deal going on that makes you want to seem like this macho man that refuses all treatments cuz you'll just tough it out - your "I cured myself" bs gets old !
geez, you seem like you have half a brain and can contribute to this forum w/o all the me me me crap !
Posted 10/25/2014 2:47 AM (GMT 0)

soystud said...
***disclaimer*** I had to put one of my cats down today so I'm in a bit of a mood ***sorry for the hopefully brief hijacking ***

Dude - that really sucks. I am sorry to hear about your kitty. It is always tough when you lose a member of the family.

Of course this all assumes you are not some crazy kat dude....Too soon?
Posted 10/25/2014 7:53 PM (GMT 0)
Rocker Girl:
actually I am taking Delzicol as well and it does seem to help, again, very slowly.
When I say I don't know if I have UC, I mean that nobody really knows what UC really is, since we don't know how to "cure" it. Seems like people get ulcers in their colon for different reasons.

I find it very interesting that I feel so much better when I manipulate the flora directly: with antibiotics, delzicol, goldenseal, caprylic acid or VSL-3. This tells me that my problem is the flora. So it makes little sense to suppress my immune system, when the Cipro made me feel so much better. Prednisone helps too but it's a bandaid, not a cure. The problem is that without it right now, I'd probably die.

Basically, I'm looking for a way to learn while I heal. I need to learn what it will take for me to stay healthy for a lifetime. I don't want to suppress my immune system for a lifetime. Granted, it sucks that it's taking so long, but I'm a slow learner, I guess.

Soystud, I'm so sorry about your kitty.
Posted 10/25/2014 9:48 PM (GMT 0)
when the Cipro made me feel so much better.

Antibiotics knocked out my flare too but you really don't want to take antibiotics, (especially Cipro), long term anymore than taking prednisone long term.

I find that after the antibiotics knocked out the bad bacteria (unfortunately it also killed the good bacteria), that I could stay in remission by monitoring my diet and taking probiotics to maintain good gut flora.
Posted 10/25/2014 10:04 PM (GMT 0)
Yes, IamCurious, that's exactly what I think we should be doing: using antibiotics to "prep" the area and then seeding the good probiotics to "fix" it.

For years, I've avoided antibiotics. In fact, I've avoided doctors and prescription meds. But this disease has forced me to take --what I consider to be -- extreme measures. I was almost ready to take Remicade until I took the Cipro and felt so much better.
Posted 10/25/2014 11:01 PM (GMT 0)
On the flipside, many, including me, feel that antibiotic use is what caused our UC in the first place.
Posted 10/25/2014 11:06 PM (GMT 0)
Gary,
Yes, I agree that antibiotics could cause it, if you don't re-seed the area with the proper flora.

In my case, I'm now trying to seed good flora in a very unhealthy environment, so it will take more time. Meanwhile, my immune system is on overdrive trying to keep me alive and causing more inflammation. It's all about achieving a very delicate balance, IMO.
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