Need to vent. Doctor/Imuran related

[KWalker]

Okay guys, I need to vent. I'm so fed up with my doctor I don't know what to do! I saw my GI today because I developed a new abscess over the summer and while it's not causing many problems my main concern is that I don't want them to become worse.

So I saw my doctor back in April where the only option he gave me was to go on Imuran. Me not being comfortable with Imuran side effects I said no at the time. Now, while I'm still not comfortable with Imuran and the side effects I was prepared to give it a try if it would help my abscesses.

I saw the doctor today, he took one look at me, laughed and said "I see your a back again, are you ready to follow my instructions now because if not you can find another doctor" I was actually trying so hard to hold in telling him to F*** off. He said the only option he'll give me is Imuran. I asked if I could start after Christmas because right now I'm focusing on exams and then once exams are done Mariah and I are going to be travelling to see family. Travelling alone is going to be insane let alone trying to find places to get blood work and dealing with side effects.

His response was "nope, you can take it now or you'll have to find another doctor" Like wtf!? I'm not even exaggerating, he's that bad! My original intentions of considering Imuran are being ruined thinking that because of his lack of care now, I don't trust my health with him while on Imuran.

I looked at other doctors in the area and my doctor is said to be the best in the area. REALLY!? At this point I'm honestly ready to leave my crohns unmedicated and take the risks if something were to happen instead of following his instructions.

I really don't know what to do and I'm really frustrated and now I have to go write an exam in a few hours tonight which I can't even focus on right now. Ugh!

Is Imuran known to help abscesses? If anybody has any suggestions or ideas at all, please tell me. If you think Imuran will really help me, please just say it. Don't worry about hurting my feelings if you think I'm wrong with my thinking.

 

[CLynn]

Doctors with that bedside manner should not be allowed to practice!! Sooooo sorry that you have to deal with that. I've not had one that arrogant. But my GI from last winter was NOT good at listening to me or very concerned about the issues with my bloodwork while on Azathioprine last winter.
That being said, I've only been on imuran for active Crohn's flares, not for abscesses. I can tell you I did extremely well on it the first time, with very few side effects and it worked quickly on settling my flare.

 

[hthompson631]

I am sorry to hear that you are going thru that. I am also in the middle of switching doctors because of his attitude and lack of concern about my health. All I can tell you is to FIRE HIS ASS!! Get you a new GI! I wish you luck and I am here for you!

 

[KWalker]

Thanks guys. I appreciate it. The abscesses are literally my only problem. The doctor didn't ask about them, he didn't look, etc. He doesn't care. I honestly get the impression that he gets paid to promote Imuran because that's the only option he gives. I asked about doing a top down approach, he said "nope, I'm giving you Imuran".

He has the best reviews in my area and even the reviews he does have are bad. I am beside myself on what to do. Do I leave my crohns until I can find a new doctor or do I take the imuran not knowing if he'll take my concerns/blood work seriously? And what if I go through all that and imuran doesn't even heal abscesses? I tried looking online and couldn't find anything talking about it working for abscesses.

 

[Clash]

KWalker, I do think you need to be on something to ensure things don't get worse with your abscesses but I don't know if Imuran is effective with them or not. I'm sure someone will be along shortly in reference to that.

I know you stated he was supposed to be the best doctor in your area and that is probably where you are getting the issues. With some doctors, when their practice is full they tend to lose sight of individual patients and start having a production line mentality, also when docs get a great reputation it kind of feeds itself like everyone jumping on the bandwagon(I use so and so because he is supposed to be the best). I'd find another doctor, besides, what constitutes "the best" for one patient may not for another.

The only thing that concerns me is should you be waiting the time it may take to get into to see another doctor? I have no idea and that should be a factor in your decision. I'm so sorry he treated you so poorly. Some docs definitely loose sight of bedside manner or never really had it to begin with.

 

[KWalker]

I completely agree and have every intention of going on medicine before things escalate, I'm just torn on whether I trust my health in his hands. When I say "best doctor" I say from online ratings/feedback as well as word of mouth from other doctors in the area. For example, the doctors at the clinic at my school say they refer to my doctor first. My surgeon openly called him an idiot to me when I was in the hospital as well.

 

[Clash]

Yeah, I understood what you meant by best doctor, I was just saying that sometimes "best doc" and "best demeanor" can't fit in with all the ego. I would find out first if imuran will even heal the abscesses, mainly will it take too long, since imuran does take some time to reach theraputic levels. If imuran does a good job with abscesses and you can handle his ego while you are getting on top of the abscesses then it might be the way to go. Once you are on imuran, then you could look around for another doc. Did you see anything in the treatment forum for Imuran and abscesses?

 

[Ams-Qld]

Hi K,
My son has been on Imuran for two years. (He has just trialled off this week for other reasons.) He had no side effects whatsoever, just got the regular bloods to check all was ok. However for the last 3/4 months he had had abscesses and they haven't healed on imuran. I have been told by a GI and surgeon that remicade and humira are helpful for closing abscesses/fistula and I think it would be worth discussing this with another GI (if you can find one!!) There are certainly risks involved (as with most of these drugs) so I would discuss your risk verses benefit before making a decision. I hope you find some answers and help soon. I understand too well how frustrating Drs can be!!!

 

[Pirate]

KWalker, we have I believe 5 GIs in the city I live in and there is one that is "suppose" to be the "best" in our city. He's not my Dr. and when I had my heart attack I found out why. He was standing in for my regular GI and he insisted that I go on Plavix as the heart Dr suggested. I explained to him that Plavix shouldn't be taken if you have problems with intestinal bleeding. He said we had to worry about the heart before the gut. So I went ahead and took it under protest and sure enough 2 weeks later I was back in for intestinal bleeding and received 2 units of blood. My wife seen him in the hallway and when he asked why she was there, she told him about the bleeding. Then she said "What good was it to worry about his heart if your just going to make him bleed to death." I love my wife. She use to be a shy, quiet girl. lol

 

[Grumbletum]

Oh, KWalker, what a jerk :-( Just reading your posts makes me want to smash him in the face, and I am normally very mild-mannered.
From what I've read here and elsewhere, Remicade has one of the best track records for healing abscesses, and that it is often more effective when used in combination with Imuran or 6mp. I was on all the meds in my signature , and on Cipro and Metrodinazole for a short while, when my intestinal abscess healed so maybe one in particular, or being blitzed with the whole lot healed me, I'm not sure. They did start with the mesalazine and work up gradually though, but they didn't hang around waiting to introduce the stronger ones when the milder ones weren't working.
However, although the abscess healed, I still had a lot of inflammation until they started me on Infliximab and at that point, the doc I was seeing said the Imuran wasn't working. I think he was right cos I went into remission on Remicade, and relapsed 6 months after my last infusion, at which time I was on Imuran alone.
I really hope you can get yourself another GI. You've suffered enough without having this kind of stress and not having a doc you can have some faith in.

 

[enumeras]

I'm nearly in the same boat as you with the doc. I just started developing an abscess next to my anal ulcer this past weekend (you could imagine the hell I'm facing right now). My doc is always making an appt for me to see a surgeon. I don't know wtf why. I told him "No, i've done this before and was treated by cipro and flagyl". Luckily he agreed to call them in for me. I've been on Imuran for the past 12 years. It hasn't done anything for abscesses as I had to deal with 3 in the past.

 

[KWalker]

Thanks so much for the replies guys. I was extra stressed because I had an exam tonight and thought I would do poorly because my mind was focused on the doctors appointment but I actually did really well and I aced the exam! So that put me in a better mood lol.

From what I've been reading the Imuran is completely useless for abscesses...which is what I need taken care of. Getting rid of those is my main priority right now. I just can't believe he didn't even look or acknowledge the ones I have now!

enumeras- do you think the Imuran could have actually caused the abscesses? Although they're just opinion/personal experience based, I've actually found a decent amount of comments (from all over) talking about people developing abscesses after starting Imuran.

 

[DustyKat]

Hey KW,

I'm so very sorry to hear of your experience.

I certainly agree that no one should be treated in such an offhand manner and it is unfortunate that there is many a doctor in which a bedside manner is sadly lacking. It is all very well for a doctor to have knowledge of a disease but unless they can impart that knowledge in an effective and respectful manner then he/she is failing big time.

Now having said all that I have at times chosen just this type of doctor over another with a wonderful bedside manner simply because the 'arrogant chuck you' doctor knows their stuff inside out and the 'friendly personable' doc is an idiot. When i do take this path I do give as good as I get though. :wink:

If you choose to refuse treatment a doctor is under no obligation to keep you on the books. Just as you have the right to not see a doctor they have right to not see you unless it is an emergency.

So the doc wants you on Imuran...may have good results in the long run for you.

But the point at hand here is you have ?one abscess?
Do you have a fistula as well?

An abscess is a complication of active disease so aside from the Imuran you should be commencing a treatment that will treat the disease now until the Imuran kicks in (anywhere from 3-6 months) and with an abscess I would have thought antibiotics would have been thrown into the mix.

Is it at all possible he was testing the waters with you due to your previous refusal?

Good luck and best wishes!

Dusty. xxx

 

[leahsmom]

Hi Kevin,
Have you tried Flagyl? if i remember correctly Imuran takes a few months to kick in so you wouldnt see results right away. I would find another doctor especially if your surgeon had a problem with him too. maybe your surgeon can refer you to someone.
Best of luck!

 

[enumeras]

I know for a fact that imuran didn't cause my abscesses but I can understand how some are more susceptible to abscesses as they are caused by infection and with imuran being an immunomodulator and all...

 

[KWalker]

Thanks for the responses guys! I usually respond individually so here it is.

Dusty- I have one abscess that I had the surgeries for last year, and I have one abscess that I was supposed to have surgery for but it drained itself and is actually in a better place than the one I had surgery for. They're both (somewhat) monitored by my surgeon and she has taken me on full time so I don't need referrals to her to see them so I could call her today and get an appointment tomorrow. She's really good like that.

I actually went to the appointment with the intention that I would be going on Imuran, so that's not the problem. My main concern is that with the side effects Imuran brings, I don't trust this doctor to be the one to "keep me safe". I feel like he would have a "wait to fail" approach instead of taking precautions before it got to that point. I don't think he was testing me at all. He's just an asshole lol.

leahsmom- It's Kyle lol. But yes, I've been on Flagyl but the people that prescribed it to me have only ever given me 1-2 weeks at a time. I actually want to go on a longer period of flagyl because I don't think 1-2 weeks really gives it the most effectiveness because by the time it kicks in the prescription is almost done. Know what I mean?

enumeras- thanks for answering that for me. I called a pharmacist today asking about it. I swear the qualifications for these jobs gets easier and easier every year because he had no idea. His answer was that there is a risk of developing abscesses because of it "but all medication comes with a side effect" Yes, but if I'm trying to get rid of my abscess and the imuran is causing more, that's not going to do me any good!

I'm completely open to Imuran, but I'm really leaning towards finding another doctor to prescribe and watch me while on it

 

[DustyKat]

Why don't you have the GI prescribe the Imuran and your GP and surgeon monitor it?

I don't know how the system works there but here it is the GP that does all the leg work anyway.

Matt was on Flagyl for 6 months, 3 months pre and 3 months post op. But he was also on another antibiotic for 3 months pre op specifically for the abscess...Augmentin Duo Forte. Although he required surgery because there was a fistula involved the antibiotics and drain did resolve the abscess.

Both Sarah and Matt are on Imuran and have not had any further issues with abscesses post operatively.

Dusty. xxx

 

[KWalker]

Here most GP's wont even deal with crohns. I guess it's good that they're honest and say they're not comfortable because it's not their expertise so I can respect that but the GP's I've came into contact with are much nicer than the GI's I know.

When Matt took Flagyl, did they give him Cipro too? Did he get the problems with his fingers and toes? If you had to guess based on experience, do you think it was the imuran or the flagyl that healed the abscess? I already have the prescription for the Imuran..I just haven't filled it. It's a 3 month prescription right now

 

[DustyKat]

No, it was Flagyl only and the Augmentin. He didn't suffer with any side effects from the Flagyl.

I don't think the Imuran healed the abscess and I have never really viewed it as being Imuran's role. I have only ever considered Imuran as a maintenance medication in his case. In my view the abscess resolved because it was 1. Drained. He had a percutaneous drain in for 3 months and 2. He was on an antibiotics. One, Flagyl that treated the inflammation and infection in his bpwel and therefore the area that was feeding the abscess via the fistula and the other, Augementin Duo Forte, that was sensitive to the fluid that was drained from the abscess.

Dusty.

 

[Higbonzo]

Kwalker,

I feel you. Sometimes you have to wonder if all the goodies they give you don't just make things worse. A body with Crohn's certainly works that way. It doesn't like stress. Doesn't like you stressing in school, doesn't like you stressing over Dr.'s, doesn't like you stressing over Meds, doesn't like you stressing by not sleeping enough, doesn't like over exerting yourself, etc... But, I am sure you are aware of this, and there is only so much you can do about those situations. Although it may ad stress, if you are not comfortable with your Dr., you might have to find someone you trust, even if it means traveling out of town for that piece of mind. You will have to measure the stress difference for yourself.

As far as imuran, I took it for a long time, and I still had a fistula develop, as well as it aggravating my Crohn's arthritis. I finally told the Doctors absolutely not, and stopped taking imuran and did much better after 6 months. I have had flagyl, but I have a bad reaction with the drug. Not sure what type of absesses you have? But, I have used the steroid foams for fistula's and absesses around my rectum, when I had one, and they worked fairly well.

Basically you have options. If you have concerns with taking imuran you can always compromise with the Dr. and take the med for a set period of time. If you have no positive results within the agreed time frame you can have him discontinue the meds and come up with another plan. I have to agree with some of the other posts, I have been push by my doctors' towards Remicade and some of the newer drugs, but I have refused those as well. I have always had best luck with steroids, so I was finally put on Budesnide. But, it came down to quality of life over quantity of life for me. I find the biggest issue with your present doctor is his apparent arrogance that he know what is best for you. Crohn's doesn't work that way, it is different for each patient and sometimes comes down to the patient knowing their body better than anyone else and working from there.

One last thing, I notice you said the absesses are not causing any issues at the moment. I just want to say it is important to be mindful of going down the "rabbit hole" to get yourself back to where you were before Crohn's, or trying to cut off any future issues you think might occur. The old saying, " if it ain't broke, don't fix it" can go along ways when it come to dealing with chronic illnesses. But, of course, I wish that we all could go into remission.

Peace and love....

 

[KWalker]

Thanks for the reply Higbonzo. I ended up calling my doctor's office and telling them I'd rather risk crohns side effects than trust my health with him. Surprisingly, the receptionist didn't seem too surprised. I wonder if she gets that a lot. I can and will find another doctor (will have to be out of town) but if I have to take a day dedicated to busing to a doctor than that's what I have to do.

Crohn's is certainly not new to me. Having been diagnosed at 2 years old, I've now lived with crohn's for 20 years. I've seen myself at my worst, I've made permanent changes as to how I go to the bathroom and what not, and I've sure as hell had my fair share of bad doctors so I know one when I see one.

With a help of a few members through PM, I've actually decided to try something different. While I'm not in any sort of serious condition right now and the Imuran takes 4 months to kick in anyways, I've got time to play around and experiment so the doctor's at school are going to help me and I'm going to get some tests done before, and then a few months later, a year, etc to see if there's any changes. I'm just trying to work out some kinks before I go public about it, but I've already somewhat started.

 

[LisaL]

I am glad you fired your doctor. He sounds like a jerk. Find a new doctor who will listen to you. Imuran may be the right medicine, or it may not, but your concerns need to be respected.
Lisa