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Crohn's Disease Forum » Your Story » Hi there! Hate doctors as much as I do??


10-03-2011, 10:18 AM   #1
Slim Johnson
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Hi there! Hate doctors as much as I do??

Nevermind the generic crap...

Hi all, you can call me Slim! I was diagnosed with CD in 9-2006, and (hopefully not before) sometime in January, I am planning my first surgery to correct several fustulae, as well as a totally trashed Ileum, perhaps some other parts of the small bowel as well.

I have been on just about every drug under the sun for CD, with little success, aside from Prednisone, Cipro, and the usual comfort meds. My Current GI is a total twit, recently sending me a dear john, dodging my calls, and refusing to treat me with the method I would prefer. He would rather I take Remicade, even though I have already taken Humira, and Cymzia with little to no success. Then there is the concern of allergic reaction, and Lymphoma...

ATM, I am at an impasse.

The following is a post I made on another forum, which I am a member. Said forum has nothing to do with Crohns, however, I have been a member of that forum over three years, and have developed relationships with people whom I feel I can share such issues. Please forgive the profanity, as I am at the edge of sanity with my disease, as well as the sheer incompetence that I have faced in dealing with my illness (something some of you may well understand.)


As you can see from the time I posted this, I have not been able to sleep (all week.) My crohn's is flaring, and to top it off, I have come to the conclusion that my G.I. doctor is a complete IDIOT! As those following this thread know, I saw a surgeon on the 26th. I had been trying to contact my GI doc in an effort to get some pain medication before the 28th, as I have been milking my PK's for the last two weeks so I don't run out before my appt that was supposed to happen on the 7th (then moved to the 28th.) Well, after several failed attempts to get in contact with him, calling his office daily from the 26th-30th, I get a letter from him dated the 30th, that stated the following verbatim:

Dear Mr ***

Unfortunately due to your severe fistulizing Crohns disease and refusal to start appropriate medical therapy and or colorectal surgery evaluation for management of the Crohns disease it has made it difficult to provide appropriate medical therapy for your Crohns disease and continuing to prescribe narcotic medications and or steroids for management of your severe Crohns disease in my opinion provides substandard medical care in which I will no longer partake. The recent CT scan has showed no improvement of your Crohns disease with steroids and antibiotic therapy. I will continue to provide your care only for the next 30 days ane would urge you to find another doctor who can share your views on the management of your Crohns disease. Please ask your insurance advocates to provide you with names of other gastroenterologists that will manage your Crohns disease.

Sincerely,

Peter Fenton MD


Now all I can say to this is WHAT THE F**K DO YOU THINK I DID ON MONDAY YOU MOTHERF**KING TOOLBOX????

Seems I must have imagined the whole visit with the surgeon on the 26th, and somehow Remicade is going to magically eliminate my fistulae, even though every goddamm expert I have spoken to in this regard has told me that surgery is the ONLY means of removing them. AAAARRRGGGGHHHHH!!!! I was begging this SOB for surgery in '08 because I was suffering so much then (even though I was following his direction!) He told me that surgery was not an option at that time. Even though I had fistulae!!!!

Now I can only wonder that if I had actually had surgery then, maybe I would not be disabled, as I am now.

This is totally beyond my scope. Substandard? What the hell could I do differently? Take Remicade? That will only mask my symptoms, moreover, I could possibly have an allergic reaction to the drug, because I have already been on two different TNF blockers, with little to no effect on my disease. I also explained to the "doctor" that I did not want to die from Lymphoma (a known risk of tnf blockers) before my children hit puberty, and that I would rather take my chances with the steroids.

Isn't this MY CHOICE??? Don't I get to DECIDE which therapy works best for me? I have taken most every damn drug under the sun for Crohns, one of them almost killing me, another causing me to dump my bike, another which lost it's efficacy after about a year and a half (that was the tnf blocker) only to be replaced with another of the same family, with NO effect!!! The only drug I have used with success is Prednisone. The CT scan PROVED IT even though the "doctor" says it did not... I took the test, I know the results, I spoke personally to the radiologist, he told me to find a new doctor... I was under the impression that Dr. Peter Fenton knew what he was doing... my mistake.


Now, I have to find a new G.I. which means I have to start this fvcking trip all over again. Because naturally, the doctors know everything, and I know nothing... even though it's my body, and they have only just met me... Nevermind the emotional distress that this is causing me. I had a doctor do something similar to me in 2010, over 50$... I thought these people take an oath to do no harm?

Is it any wonder that I don't trust doctors?


Attn. mods, please remove this post if I have managed to violate any of your terms, as I am new to this forum, and am not yet familiar with the status Quo.
10-03-2011, 10:31 AM   #2
Lydia
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I am sorry you had to go through that. I hope you find a doctor you like. Keep in mind they can only recommend what they are trained to recommend, and medical doctors will prescibe medicine. They know very little of diet and natural remedies. Sounds like your doctor was not very good and listening and working with you.

My GI will let me try things my way, provided I check in with him. When I reacted to remicade he pulled me off and let me try imuran even though he wanted to put me on humira. I decided to save the humira for a rainy day since my crohns wasnt so bad at the time. I am now waiting for the imuran to kick in.

You sound like you have tried the usual meds, you should check out the LDN subforum.
10-03-2011, 10:46 AM   #3
David
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Hey Slim, and welcome

Fistulizing Crohn's Disease is a TOUGH beast. I'm staring at one of the treatment algorithms for FCD. It breaks it up into three subcatergories and I'll list the stated treatments as well:

Simple fistula without rectal inflammation - Antibitotics with Imuran/6-MP (consider biologics)

Simple fistula with rectal inflammation - Antibiotics with Imuran/6-MP (Start biologics)

Complex fistulae - Surgical evaluation, antibiotics, Imuran, and Biologics

Trial data for Remicade showed that 50% of patients with fistula experience complete closure within 6 months and 60-70% will have significant improvement in the number of draining fistula.

Obviously this isn't the only treatment algorithm or the only way to treat the disease, but this is probably what your doctor is looking at. The vast majority of GIs would indeed be looking at Remicade at this point. I don't think that makes any of them incompetent or a quack. The quack would be the doctor who thought it was ok that your toilet was regularly filling with blood (like we recently saw on this forum).

I'm not saying all of this to say you're wrong, I'm just providing the doctor's perspective and maybe some additional numbers you didn't know. In the end, your health is your decision and I absolutely understand your frustration and anger. And Remicade can be a scary drug, for sure. Crohn's sucks and it sucks that you're having to go through all of this I hope you can find a GI that you feel is on the same page as you! We have a couple high rated Utah Doctors in our doctor directory you may want to check out.

We're here for you buddy. *hugs*
10-03-2011, 10:46 AM   #4
Slim Johnson
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Thanks Lydia. I am not sure if you had the enzyme test for the Imuran, that stuff almost killed me! I developed pancytopenia, causing my platelets to drop to 1/25th of what they should have been. I am one of the unlucky 3%...

As far as my last GI, I suspect that he is getting some sort of kick back from the pharm company. I can't imagine why he would not listen to me, or the radiologists... I am hoping that the upcoming surgery will be helpful. *fingers crossed*

David, I am not scared of Remicade, I am just seriously doubtful it will work. Neither of the other TNF blockers worked, and I am thinking surgery is my only out at this time. I wouldn't doubt that my doc was clinging to the stats that you stated. He referred to me as one of his "special cases" due to the fact that my version of CD has been so stubborn to medical treatment.
10-03-2011, 10:53 AM   #5
Jessi
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Hey, Slim. I responded to your first post in the Utah Local Support Forum. Let me know if you happen to find a wonderful doctor in SLC. I'm working up to moving to Sandy within the next year or two.... I hope to move sooner, but I own a house in Ogden and need to sell it first.
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10-03-2011, 11:13 AM   #6
Slim Johnson
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Thanks Jessi, I was up at the Ogden Clinic Monday, that is where I imagined my visit with Dr. Edward Jordan. He is a general surgeon there, and he had performed several surgeries on a dear, late, friend of mine, who also had CD. I am planning an open surgery with him next January. I have to admit, it was nice to talk to a doctor that was down to earth, and completely honest about what I am facing. So many doctors are doom and gloom, or they understate what is going on.

Good luck selling your house! The market is terrible atm..
10-03-2011, 11:19 AM   #7
Jessi
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Glad you found a good surgeon. I hope he can really help you.

Yes, the market for selling is terrible. My house is worth a lot more than most of the houses in the neighborhood, and we're updating the bedrooms, as well. I'm currently working on the master bedroom, but it's a slow process with my only helper being my disease.

We've already fallen in love with a few houses in Sandy, but they'll probably be gone by the time we're ready to move. *sigh*

Lydia mentioned LDN. Have you tried it yet, Slim? I'm a little curious about it, as I may have MS, as well. Keep us posted on how you're doing.
10-03-2011, 11:29 AM   #8
Lydia
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I am lucky in that I seem to tolerate imuran pretty good. I get blood work done every 4 weeks. It kicked off a 4 year remission in the past. I too have fistulating CD. I was lucky when the remicade closed my fistulas in 4 days after the first infusion. After a year I ended up getting drug induced lupus and I had to stop taking it, so I switched to imuran. Some people have had better success with remicade when compared to the other biologics. So there is always a chance it can work for you.
10-03-2011, 11:38 AM   #9
David
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David, I am not scared of Remicade, I am just seriously doubtful it will work. Neither of the other TNF blockers worked, and I am thinking surgery is my only out at this time. I wouldn't doubt that my doc was clinging to the stats that you stated. He referred to me as one of his "special cases" due to the fact that my version of CD has been so stubborn to medical treatment.
Hey slim,

Again, I'm not trying to convince you to try Remicade, I just like to provide information Not all tnf blockers are the same.

For example, there is a tnf blocker called etanercept that does nothing for Crohn's. The thought is that, "Infliximab [Remicade] causes programmed cell death of TNFα-expressing activated T lymphocytes, an important cell type mediating inflammation, but etanercept does not have this activity, now it is generally assumed that resolution of activated T cells by infliximab explains its efficacy in Crohn's disease."

http://www.gastrojournal.org/article...iki/Infliximab

Frankly, considering you have fistula, I'm surprised you weren't sent straight to Remicade. This is from the Cimzia website:

Cimzia
FDA approved and indicated for reducing signs and symptoms of disease and maintaining clinical response in adult patients with moderately to severely active disease who have had an inadequate response to conventional therapy
Biologic

HUMIRA®
(adalimumab) Subcutaneous injection FDA approved and indicated for reducing signs and symptoms, and inducing and maintaining clinical remission in adult patients with moderately to severely active disease who have had an inadequate response to conventional therapy; reducing signs and symptoms, and inducing clinical remission in these patients if they have also lost response to or are intolerant to infliximab
Biologic

Remicade®
(infliximab) IV infusion FDA approved and indicated for reducing signs and symptoms and inducing and maintaining clinical remission in adult and pediatric patients with moderately to severely active disease who have had an inadequate response to conventional therapy; reduction of the number of draining enterocutaneous and rectovaginal fistulas and maintaining fistula closure
10-03-2011, 11:54 AM   #10
Slim Johnson
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Jessi, do I detect sarcasm?? Haven't made it to the LDN subforum yet..

Lydia, I was doing the same thing with the Imuran for about 6 months, getting tested every 2 weeks. My GI at the time thought I was out of the woods, and told me to come back for a blood test in 2 months. That was when the Imuran decided to throw down the gauntlet. I was in the hospital for a day getting transfusions of blood and platelets, neither of which lasted more than 48 hours.. I was confined to my house for 3 weeks. My body naturally rebounded once the drug was out of my system.

Dave, the reason I started on Humira, rather than Remicade was that at the time ('07) it was the hottest thing on the market, and my GI at the time said it was being prescribed to patients who did not respond to Remicade. His thought was that it would be better than the Remicade. The Humira worked for about 8 months, then my symptoms started coming back. My dosage was doubled, going from bi-weekly, to weekly; which worked for about another 6 months. Shortly after that, I went to the Cymazia, which did nothing for me. In fact, it seemed to make things worse! Imagine my frustration. I understand that each one has it's own means of efficacy, however, after seeing about 7 or 8 fistulae with my untrained eye at my last small bowel series, I figure it's time to go get cut. Perhaps after I recover from surgery, I will reconsider Remicade. For now, it's out of the question.
10-03-2011, 11:59 AM   #11
Slim Johnson
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Also, I don't know about y'all, I can feel what I assume are the connections that the fistulae make when I am walking, running, riding my sexy motorcycle, etc etc. It makes for a sedentary lifestyle... Then again, it could be the adhesions, or perhaps just the stenosis.. who knows?
10-03-2011, 01:02 PM   #12
glum chump
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Count me in as having fistulizing CD---at least twice a year, the little beasts would show up. This went on for about five years and I was at my wits end---internal, perianal, and recto-vaginal fistulas all rolled out together. I was popping antibiotics like mad and trying to take care of the abscesses (and fissures). Like you, Slim, I stopped riding not only my sweet Moto Guzzi, but my Vespa as well. Oh how I hated to give those two up!

I tried every med out there for my Crohns, including Remicade. I was on a biologic drug trial (Ustekinumab, also known as Stelara) which really worked well for me, although Remicade and Humira did not. Unfortunately, Stelara hasn't even begun the Phase III drug trial, so it will be a while before it comes on the market, and I couldn't afford it "off label" (who has $10000 laying around every three months?).

So then I went for surgery. Permanent ileostomy is what I got. And life couldn't be better. I've gained 20 pounds, can eat anything, no pain, bleeding or fistulas. Fingers crossed that this period of remission holds for a long, long time.

I'm really hoping that you find some strong answers and support with your new doctor. Being self-empowered and being able to make decisions and choices about your health care is so bloody important. It's frustrating when you get into a clash with a doctor because of their ego, their alliance with a pharmaceutical company, or their own sense of ethics/values around what healthcare should be for patients.

Good luck with your next appointment, and any surgery decisions you make.

Cheers

Kismet
10-03-2011, 05:49 PM   #13
DustyKat
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Hi Slim and

Good to see you here.

I noticed you said your ileum was trashed, so I assume you have some fistula's originating from there?

Both of my children have Ileal Fistulising Crohn's disease, with my son being recently diagnosed. He had two fistula's in the terminal ileum and we were advised by more than one colorectal surgeon and a Crohn's specialist that the biologics, whilst very successful at healing perianal Crohn's, are as equally unsuccessful at healing fistula's originating in the ileum. My son also had two abscesses so the biologics were not an option any way.

I think there can come a point in time where your quality of life becomes so affected by the disease that this is as good a reason for surgery as anything else.

Good luck Slim and keep us posted!

Dusty. xxx
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10-03-2011, 06:15 PM   #14
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Slim,
I feel for ya. I too am at the point of committing a felony to get a blinking doctor to listen to me. I too have had a doc tell me I can't do anything else for you (although he had the class to talk to me face to face). I did the Remicade trip...worked for about 18 months. Did the Humira trip, didn't do a damned thing except burn like fire going in. Pred is the only thing that has helped me...but I have severe osteoporosis now.

I know it suck out loud and I wish I could help. Just know that the people on this forum will listen if you need to sound off.
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10-03-2011, 06:18 PM   #15
David
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Dave, the reason I started on Humira, rather than Remicade was that at the time ('07) it was the hottest thing on the market, and my GI at the time said it was being prescribed to patients who did not respond to Remicade. His thought was that it would be better than the Remicade. The Humira worked for about 8 months, then my symptoms started coming back. My dosage was doubled, going from bi-weekly, to weekly; which worked for about another 6 months. Shortly after that, I went to the Cymazia, which did nothing for me. In fact, it seemed to make things worse! Imagine my frustration. I understand that each one has it's own means of efficacy, however, after seeing about 7 or 8 fistulae with my untrained eye at my last small bowel series, I figure it's time to go get cut. Perhaps after I recover from surgery, I will reconsider Remicade. For now, it's out of the question.
Good deal brother! I hope I didn't upset you at all, I just wanted to make sure you had as much info as possible. I'm glad Dustykat added the above as I didn't know that.

No matter what direction you take, we're here for ya
10-03-2011, 07:14 PM   #16
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there is a web site vitals.com where you can check what other people think of doctors before you go to them or you can actually review the doctor yourself also.
10-03-2011, 07:54 PM   #17
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Hi welcome

I feel bad for what you are going through. I hope that everything works out well for you, and that you can feel well soon.
10-03-2011, 09:43 PM   #18
Slim Johnson
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Dave, I am not upset at all. I appreciate your passion! Truth be told, I tend to know more about my condition than most doctors that I talk to about the matter. This usually only tends to add to my frustrations when they don't take me seriously.

Recently, Prednisone has been the only drug to bring me relief. It has also made me osteopenic. I am certain osteoporosis is in my future. It is a known complication of Crohns... Drugs aside. As I told my Dr., I would rather be in a wheelchair from brittle bones disease, than dead from lymphoma. I refuse to believe that it is a "rare" occurrence. Pancytopenia is a rare occurrence of Azathioprene (~3%) , and I developed that..

Many, if not all of the fistuale I have originate from the Ileum. The surgeon I saw last Monday told me that his goal would be to take out "the first domino in the series", to "put out the fires." This made sense to me. My Ileum opens to about 25% or less than what it should, leaving me on a high protein, low fiber diet. Fast food is out of the question, as well as spicy food. Oh how I miss it! *boo*

Thanks for all of the replies everyone! This is a very busy forum. I am hoping to learn much from everyone.
10-03-2011, 10:39 PM   #19
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Hi Slim, I have Osteoporosis from Crohn's and pred, and let me tell you, the drugs they give you to help your bones are no picnic. I took Zometa as an infusion, and the pain it caused forcing the bones to heal was horrific. Having been in a wheelchair with fractured hips, I can speak from experience that it is a very rough road to travel.

I also have had perianal fistulas, and once I started Remicade they healed up completely, even though I had been told only sugery could correct them. Remicade was not an easy choice for me to make, as I have had colon cancer, and I was very afraid to try it. I am allergic to 6MP and Azathioprine, so those are out.

I encourage you to try to keep your options open, and take advantage of this forum to get first hand experience on treatments, or whatever you need info on. You have to do what's best for you, what feels right, and you can count on our support whichever way you decide to go.
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10-04-2011, 12:36 AM   #20
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Hi slim good luck with surgery I had to have it due to failure to respond to meds and it worked a treat, hope it does the same for you. Hope your taking calcium for your osteopenia.
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10-11-2011, 03:24 AM   #21
Slim Johnson
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*UPDATE*

I saw Dr. Heath at the Olympus Clinic today. I had a terrible moment before I left home, so I was in tears, and very emotional by the time I sat down in the exam room. Some people close to me think I use CD as a cop out... WTF REALLY??

Any how, I met with the doctor, we went over some of my concerns in a rather light format. I signed the HIPPA release the previous Wednesday, sadly he had not reviewed the information. (I am just going to assume he is very busy, and will look them over at his first opportunity.) I explained my intention to have the open surgery, as well as my refusal to take Remicade. He surprisingly understood my concern, and left it at that! (wow) I explained that I was dealing with another (it never ends) active flare, and the scale at his office showed that I had lost 14lbs since my last Dr visit. *BOO* I told him that I wanted some prednisone, ativan, and oxycodone to mitigate my symptoms. Again, he agreed! (WOW) I also had him order a CBC, CRP, and whatever test to determine my vitamin b levels, and general nutrition. He did all of this for me, while listening, and honestly sharing his input.

It sparked a little hope for me!

Good first impression, I feel comfortable seeing him again.

One thing though, he had suggested interferon. I thought this was a DANGEROUS drug used to treat HEP C. I told him I would look into it, however, for now I want to be on as few drugs as possible. I don't want to deal with withdrawal, or some sort of strange complication due to the residues from the medication left in my system.

In my imaginary world... Remicade during surgery would give me lymohoma. Or the Prednisone would give me brain dammage, or kill me from a toxic combination of other sedatives, or whatever they give you to put you under for the op.

I plan on visiting with Dr. Heath sometime between the future endoscopy, and the surgery.

I have to admit it was a relief to be treated properly by a doctor for a change.
10-11-2011, 05:34 AM   #22
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Thanks for the update Slim!

I'm sorry to hear about how you were feeling this morning, I hope things have settled down for you...

Fab news about the doc though! There's nothing better than being respected, listened too and validated!

Interferon has many uses, even for one auto immune disease I know of...MS. Back in the eighties, at the hospital I was working at, they were trialling it for chronic fatigue syndrome and seemed to have some quite positive results.

Good luck!

Dusty. xxx
10-11-2011, 06:56 AM   #23
stratford
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Slim,

I can understand everything you have to say about your treatment for Crohn's.
I have been let down & misdiagnosed(countless times).
I've had Dr's be very sarcastic to me,get angry with me and one even lied to me.
When i dared to speak my mind about Crohn's symptoms - which were in MY BODY - i got shouted down with arrogant vile attitudes by certain Dr's.
One Dr's inability to diagnose my Crohn's led to a resection.He was so arrogant he could not even bring himself to apologise.IMO he was a disgrace to his title.
When i complained about the side affects of drugs they gave me i was told to 'try to cope with it'.Only once the side affects of immunosuppressive drugs put me back in hospital was i listened to.
As for the 'Dr' who lied to me ..... i'm still considering taking legal action.

Wish you well Slim
10-11-2011, 01:21 PM   #24
Slim Johnson
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Stratford, thanks for the post. Sadly I think this occurs with CD patients more than many other patients. It's that whole "you don't look sick" bulls**t. Sorry you ended up in the hospital over it. That is not fair.

I still have to meet with the new GI on the 25th *fingers crossed*, I have been told he is involved with the CCFA, which would be a blessing, provided he is not an arrogant jerk.

Some of these "doctors" seem to develop a God complex, meaning their word is the gospel, and shame to anyone who would DARE to question their decisions of treatment... To that I say "The Emperor isn't wearing any clothes!"
10-11-2011, 01:39 PM   #25
CD041491
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simply for the last quote of your post. youre my hero lol
10-11-2011, 02:50 PM   #26
Mountaingem
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So glad you had a good experience Slim! Most important, he LISTENED to you! That is so rare. I got teary reading your experience before you left the house-people w/o Crohn's don't realize when you are going to the doctor for help, the doctors hold your life and future in their hands; it's overwhelming at times. I really feel for you; I've had that moment many times.

You know, I think most Crohn's drugs are a bit scary, it's just a matter of choosing the lesser of two evils, unfortunately. FYI A friend of mine had autoimmune Hepatitis and has been on Interferon with good results.

Whatever you choose, I wish you improved health and better days ahead Slim!
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