Have you challenged your doctor?

[Sea_Star]

Just wondering, how many on here have challenged their doctors, in terms of pushing for a less-harmful treatment? And how many have never contested/resisted?

 

[FrozenGirl]

Challenged, no. I did negotiate for a lower pred dose after being on it, then off and he wanted to put me back on a full dose. I knew the horrible side effects and negotiated for half the dose. I am fairly risk tolerant so if my doc suggests it and I think I would get an increased QOL I am likely willing.

I'm sure people must resist though. Some docs are very risk tolerant with less risk tolerant patients. I think it's really a personal comfort level vs. assertiveness thing.

 

[SarahD]

I resisted Azathioprine in order to try treating my Crohn's with diet, but in the end diet wasn't enough and I ended up on Aza anyway. I think it's important that dr's listen to their patients concerns, after all it's our bodies and we have to live with the consequences of the drugs we take (and the consequences of untreated disease if we choose not to take drugs strong enough to treat our disease).

 

[lbligh]

I've heard of people getting "fired" by their doctors by not following their instructions. We were afraid that would happen to us because we refused to put our daughter on 6MP. Fortunately the doctor saw how well she was doing on the Specific Carbohydrate Diet, and let it go.

In our area it's very difficult for a new patient to get an appointment with a pediatric specialist, so we were glad we weren't "fired." Among other things, only doctors can order the lab tests to monitor inflammatory markers. And we can't count on diet alone to do the trick, though of course we hope it does.

 

[shamrock15]

I "fired" my previous GI because all he wanted to do was tinker with remicade dosages. He skipped out on many essential steps in my opinion that did pose medical problems for me and complicated diagnoses. Keep yourself informed and make sure your doctor respects your concerns, but at the same time, be willing to listen to the doctor. He should be able to justify any course of action he is taking.

My personal favourite was having an ER doctor start putting on a glove to check my backside for bleeding after I told him that I was passing visible blood rectally. Really??? come back when you can tell me why that one is necessary...

 

[baistuff]

I "fired" my previous GI because all he wanted to do was tinker with remicade dosages. He skipped out on many essential steps in my opinion that did pose medical problems for me and complicated diagnoses. Keep yourself informed and make sure your doctor respects your concerns, but at the same time, be willing to listen to the doctor. He should be able to justify any course of action he is taking.

My personal favourite was having an ER doctor start putting on a glove to check my backside for bleeding after I told him that I was passing visible blood rectally. Really??? come back when you can tell me why that one is necessary...

To rule out a visible hemorrhoid, mass, abscess, fissure, or dare I say OTHER cause of bleeding. To see if it's in or on the stool, or lone blood, dark red or bright red or black, which can help determine where it is orginating. Or if nothing else, so a patient won't say 3 years later in a lawsuit "well, I told the doc I was bleeding and he never examined me."

I love the irony- a thread about doctors not paying attention to what patients say, and then a complaint that a doctor is doing a thorough physical exam on a patient with a specific complaint.

"don't touch me doc. don't give me any meds. Just tell me to follow SCD and take 47 unregulated supplements that have no evidence behind them."

As a doc, I am happy to be challenged by patients, and asked to back up my suggestions with evidence and past experience. But please make sure those challanges are based on something tangible.


Real productive thread.

 

[lisadc1]

I agree with you, Baistuff...Why "challenge" the person you are going to for help? If one isn't comfortable with a specific doctor, there are others out there for other opinions. Because I am only a year into this medication thing for Crohns, I still have a lot of questions. However, I am respectful in my discussions with him. As an educator, I enthusiastically welcome any parent that has questions and suggestions, after all their child's education is what we are both concerned with; it takes team work but at the same time I am grateful they respect my decisions as a professional. (I treat each child as if he/she were my own.) And I would imagine a physician feels the same way...we discuss options, best fits to receive the optimal care. But when it comes down to it, he is the professional and understands the science of this thing much more than me. I am thankful my doctor listens to me discuss my symptoms, performs tests, and makes sound decisions based on my needs...

 

[nogutsnoglory]

I have challenged doctors and you learn very fast who has a God-like complex and ego the size of a highway and who is sympathetic and understands you will need to live with the consequences of treatment.

I know who to push and question and who I need to just stroke their egos. It's unfortunate but sometimes if you want to be in a certain practice it's gotta be done.

 

[Jmrogers4]

I don't think I've ever challenged my son's GI but we do have open communication and discussion and my son is included in those. When he was flaring about a year ago, GI suggested a course of pred and my son asked what his options were as he hated pred (he was 14 at the time). GI gave him all the options and why he thought they would work and what the pros/cons were for each treatment. In the end he (my son) went with EEN and I think because of his discussion with the GI he was fully committed and understood that for it to work he needed to to adhere to the 100% supplements - no cheating.
I think a GI and patient build trust when they can have a relationship where the patient is comfortable asking about treatments and the GI can explain their options and why they feel the chosen one is in their best interest

 

[Grumpy1]

I don't think that I have exactly challenged my GI verbally, I am enough of a challenge in the treatment zone for him. I have asked the tough questions and am very lucky that he has the patience to answer them thoughtfully. I have a number of allergies and severe reactions to drugs and it has made treatment of this wonderful disease a little challenging in itself and he is a wise enough man to admit that he doesn't have the answers and to request assistance from others that may have patients with similar issues - so I don't want to scare him away - sometimes I may want to smack him when a treatment plan isn't working but I'm sure that that goes both ways - I'm surprised he hasn't run for the hill yet.

 

[Droopy Drawers]

Oddly enough, I have an appt to see my GI Doc later this month & I am trying to figure out a nice way to see if I can get off some of the meds I've been on for a year with no relief

I also have RA along with Crohns & when I saw the Rheumy 3 weeks ago I told her I felt I was over medicated
Her response was to add a low dose of the evil pred to the cocktail!

Not a happy bunny
I am on Pentasa 500 mg 8 a day
Aciphex
Folic acid 2 mg
Mtx 25 mg injection weekly
Humira 40 mg injection every 14 days
D3 5000 daily
Tylenol #3 as needed
Monthly b12 injection

Taking meds is becoming a full time job & I think a year is a fair trial
I'm down to 1 trip oo: daily, but still have miserable pain in my gut most of the time

 

[Grumpy1]

Droopy, am seeing mine later this month also, seeing if they can find one that works. Am off most everything now except Humira - didn't want to start me on methotrexate until we found out if I could take humira because the first time around I reacted to the Humira like I reacted to the Remicade. But the Humira is not working yay me. Am currently running to the br at least 10 - 15 times a day and is waking me up 2 - 3 times a night. Haven't seen the rheumy yet - later this month also so that is untreated as well - can't take Tylenol #3 so gp suggested Tylenol extra strength for now. I am having a lot of fun right now.

 

[2thFairy]

IMy personal favourite was having an ER doctor start putting on a glove to check my backside for bleeding after I told him that I was passing visible blood rectally. Really??? come back when you can tell me why that one is necessary...

Anyone can say they are passing blood rectally. Of course they checked you out!!!

If I just told my doctor that I had a fever so I wanted him to take my appendix out, do you think that is reasonable?

 

[baistuff]

Certianly ask questions. I have had patients educate me when they bring peer reviewed articles I am not aware of. And certainly there is always more than one option. And ABSOLUTELY major decisions should be made together.

Medical decisions, especially for chronic issues, should be approached as a TEAM effort. Doctor, support staff and most importantly the patient. If your doc won't include you in the process that's a problem.

However, to demand unproven supplements or modalities, the doc explain why she/he won't go along, to not back up your challenge with REAL data or evidence, you will get nowhere fast.

 

[my little penguin]

I challenged the Gi too many times to count .
But I know when not to push .
One was chosing EEN plus 6-mp instead of pred.
DS's gi had no exp with EEN - I provided a few dozen scientifically proven papers and DS got to "do" weeks of EEN .
The Gi now uses that with his patients instead of pred first .
Did the same thing with vsl#3 prescription strength probiotics -
For DS it works with his humira/Mtx well.

I think you need to really discuss things pro cons reasoning behind both sides and have valid papers ( NIH etc...) not just a website .
Plus read more than one valid paper.
If you can only find one paper on it the odds are it's not a good thing
Since you can probably find at least one paper stating the opinion you want on anything .

 

[lisadc1]

My Little Penguin, to me it doesn't sound like you challenged your child's GI. Presenting data, being informative is a good thing. It sounds like you are in a good partnership with the GI for the benefit of your child as well as others.

To me, and I could be reading the entire thing all wrong, challenging the dr is more of a brash approach, on the verge of being rude. I think we should all have a good relationship with our GI's, as it sounds you are. Wish you could go to appointments with me sometimes! hehe

 

[Tesscorm]

I don't think I've really challenged my son's GI but I have certainly gone in armed with a million questions. Your conversation with your GI will be more productive if you are informed of the various treatments, can explain why you'd rather try a specific treatment and can justify your reasons for not wanting a specific treatment.

I was definitely not happy when my son's new/adult GI recommended remicade (my son had been in good, stable clinical remission for two years while on only supplemental EN). However, I understood his motivation and concern that simmering asymptomatic inflammation would likely lead to more serious complications. I questioned EVERY other treatment option from traditional to non-traditional and asked his reasons for not trying those first. We were lucky in that his GI patiently explained his reasoning for not using every one of those meds and his justification for remicade made sense. I still felt like 'shooting the messenger' (an emotion which I think can also happen, it can be tough to hear advice that is so hard to accept) but, looking at the situation objectively, I realized he was making sense.

I think you also have to consider your specific situation... be honest about what test results are showing and what the risks are in not taking meds in your current situation. There may certainly be situations when there is time to try a different treatment option.

These decisions are never easy. :ghug:

 

[shamrock15]

To clarify - the doctor in question had plenty of opportunity to tell me of a test. his only stated answer was checking for occult blood. At that time, I had a 20+ year history of crohn's, all work done at the same hospital including regular blood transfusions that were being investigated through other channels. If he wanted another test, all he had to do was tell me what he was looking for. I have had 6 previous surgeries, the joys of emergency scopes without the benefit of bowel prep. This was not about a little bit of pain, it is entirely about dignity. Based on what he told me, it wasn't necessary.

 

[Sef0912]

I have not challenged my doctor, as of yet, but I have challenged her medical staff. This was due to them not refilling my maintenance medication prescription for several days, causing me to again begin to flare, and then not filling out my pre-authorization forms for insurance for a drug my Dr. prescribed and wanted me to start ASAP. I also challenged the medical staff on sharing my HIPPA protected information with someone who I did not authorize them to share it with. Note, none of this had to do with the Dr. but with the way the practice she works for regulates the way the Dr. is allowed to work and gives "menial" tasks to medical assistants that are overwhelmed with the amount of work they have to do in a 40 hour work week and are getting paid minimally. This is actually the reason I have changed GIs. Not because of the Dr. but because the practice that the Dr. works for. Also, I had only seen the Dr. twice since I started to use that practice, and had appointments scheduled by the practice every 2-4 weeks, once for the initial evaluation and once after my scopes, and then had been seen by a different PA each time I went to the practice who each did not know anything about my case and had to read my medical records from the practice while prescribing medication and trying to figure out why I was in their office for follow-up appointments. Hooray for the American medical system and being in the business to earn money, at times, instead of focus on really treating the patient. Major vent there but I think you have to find the right Dr. for you or your family member who is being treated and that Dr. has to be an equal partner with you in your treatment. You also have to be able to be open and honest with that Dr. in order to form a good relationship where you are being taken care of as the patient.

 

[Sea_Star]

Perhaps "challenge" was not the correct term. When I say that, I refer to asking about other options, not just saying "ok, great, thank you, see you next time."

Baistuff-I don't think it was implied by my post that doctors are not paying attention to patient's concerns. Perhaps it just SEEMS like a challenge, because heck, even asking questions seems like I'm being pushy. As the daughter of two physicians, I do respect your opinion..however, just like in clinical trials that show efficacy and response to a drug, real-life anecdotes should do the same. As much as I'd like to ask my GI (been running around with several) to prescribe LDN or a trial of SCD/Cat's Claw, or even to let me try Pentasa, it feels like a challenge. I love it when doctors are receptive to patients trying alternatives and then take it from there.

Sure the risks may be minimal, the statistics are low... until you become one of them (hopefully not). But the way I see it, the opposite has to be given a chance too...what if you are not one whose disease ends up needing surgery? Or ending up with stricturing and progression? As a 25 year old who has never dated, never had a boyfriend, never known what it's like to hold hands with a male...how on earth can I accept the possibility of developing cervical, skin, lymphatic system cancers when all I have is....asymptomatic mild inflammation which MAY respond to Pentasa. 2 years off of meds and all that was seen was mild inflammation. It MAY progress, of course. I'd rather have to face the reality, than live in depression every single day of my life knowing I'm consciously swallowing a toxic substance for something which "may or may not" occur. It's a trap in this situation.

So again, would retracting my compliance be challenging my doctor? This is what I'm planning to email him:

Hello (insert nurse and Dr's name here),

I have a few questions about some reactions/side effects after starting 6MP last Monday (Oct. 27th). I have been able to manage the nausea and tiredness, but there are a couple things I am concerned about:

1.) I developed skin itchiness starting this past weekend, beginning on Sat. It's all over, but I don't see any rashes other than when I scratch. I don't recall having this side effect the last time I was on 6mp....is this to be expected? Also, I noticed an increase in moles appearing...is that normal?


2.) The abdominal/flank pain (primarily RUQ extending to the back) that I mentioned at my appoint is there consistently every day now, most of the day. It almost feels like it's coming from my right rib towards the back, and an area in the front. There have been a few times the LUQ gets an ache, similar to what I experienced a few weeks after my colonoscopy in May...so I'm not sure if this is related to the inflammation or not, as I've never experienced aches in these areas prior to this year.


3.) Dr. xxx, this is something I wish I had said at my appt with you, but I value your opinion and didn't want you to think of me as the same person my past records reflect: a non-compliant patient. To be completely honest here, my energy and quality of life feels like it has disappeared since last Monday. I know medication is to improve quality of life, but before then, when I was taking Pentasa only, I wasn't worried, I was happy, and feeling great! I was looking forward to playing tennis, getting out there! I know I'm not the typical Crohn's patient...aside from my first semester in Miami Fall 2009 after eating at the dining hall (it gave everybody diarrhea..), I've never had a problem with diarrhea. Tapering Entocort, sure I had some abdominal cramping and looser stools initially, but that rebound subsided and I still go once or twice every few days with normal stools. I understand this doesn't necessarily indicate anything, as asymptomatic inflammation exists...but for some reason, I can accept the risk of progression, but not damaging the rest of my body when I don't feel anything.Perhaps if I did have more symptoms, it would be easier to take the med for which I would be able to see and feel the relief. I can't live worrying if every new mole is a problem, or my joints hurting, etc when all I've had is some RLQ tenderness and the duodenitis/gastritis pain. I understand when you say Pentasa has been shown to be like a placebo, but what if I'm in that small percentage of people who respond? I know typically Pentasa doesn't do much..but since I'm atypical, before I can realize I need something stronger, I would be more compliant with the least harmful medication, now that I've accepted the diagnosis 4 years later. I would rather have active surveillance, than potentially ending up with some sort of cancer, for which I will never be able to forgive myself. Of course when I took 6mp, it quietted things down, even having a lasting effect for a couple years off it, but my disease activity was a little more "vile" back then apparently. I'm the type to learn by experience. I'm not rejecting 6mp or stronger meds if/when I truly need them, but right now, every time I swallow the tablet, it's scaring me. Could we give Pentasa a try? I accept FULL responsibility for whatever may happen, but i don't mind aggressive surveillance at all. I hope you understand Dr. xxx. I truly want to be your compliant patient, as I finally can rest easy in the hands of xxx clinic, but in an ideal world, I wouldn't take medication....could Pentasa be the halfway point? I promise to not hesitate to go back on 6mp should things progress. There are just certain things I'd like to experience before altering my body's chemistry consciously.."

Is that too challenging? At my appointment I mentioned that the other doctor I saw again after 3 years, told me this time I might be one to respond to Pentasa ( 3 years ago he said it was a placebo...but he was seriously surprised how I have not had any symptoms, medfree for about 2 years...and it hasn't really progressed) This doctor reiterated it's like a placebo (uhm, what about allll the ppl who have done well on it?) I hate feeling trapped

 

[Sea_Star]

To clarify - the doctor in question had plenty of opportunity to tell me of a test. his only stated answer was checking for occult blood. At that time, I had a 20+ year history of crohn's, all work done at the same hospital including regular blood transfusions that were being investigated through other channels. If he wanted another test, all he had to do was tell me what he was looking for. I have had 6 previous surgeries, the joys of emergency scopes without the benefit of bowel prep. This was not about a little bit of pain, it is entirely about dignity. Based on what he told me, it wasn't necessary.

Shamrock, I agree with baistuff here, but can see how frustrating it is to feel like the doctor wasn't listening. But he was, that's why he checked. In his defense, a LOT of people complain of symptoms that are subjective, but are not found on an objective examination. If a patient presents to the ER with the complaint that they are bleeding in their ear canal, and the doctor bypasses it..who is to say the patient was not under the influence or not experiencing a pyschotic episode if NO examine was done, and thus no blood is found? Clearly, your health history would obviously indicate an issue with bleeding, but in the moment, if he hasn't had time to look through the whole history yet since he has 6 other patients waiting for eval, it helps to witness what the patient is saying. But I know how you feel...but when I worked as a Scribe in the ER, you get a sense of why doctors do a full examination, aside from the main areas of symptoms.

 

[UnXmas]

I have "challenged" doctors over many things. I've had a lot of doctors just be simply wrong, and if I knew that they were wrong, I'd challenge them, but if they were wrong on a very important issue, I would find a new doctor.

But I've also had doctors who made decisions which were right in terms of fact - where they followed medical rules and guidelines - but which I felt (or knew) were wrong for me. Then there's not much point challenging them then, as even if you could convince the doctor that something else may be preferable in your individual situation, the doctor's hands are tied because they have to follow medical guidelines.

And there are subjective issues, where neither the doctor or I were "wrong", but we had opposing views. Then it's more difficult to know what to do; I would definitely have a good try at explaining my view to the doctor first, but would see another doctor if this didn't work.

 

[UnXmas]

Certianly ask questions. I have had patients educate me when they bring peer reviewed articles I am not aware of. And certainly there is always more than one option. And ABSOLUTELY major decisions should be made together.

Medical decisions, especially for chronic issues, should be approached as a TEAM effort. Doctor, support staff and most importantly the patient. If your doc won't include you in the process that's a problem.

However, to demand unproven supplements or modalities, the doc explain why she/he won't go along, to not back up your challenge with REAL data or evidence, you will get nowhere fast.

I completely agree with you that doctors have to make decisions based on established evidence, and cannot do something not proven to work just because a patient wants it.

But I would like to add that many people are not able to research their condition and treatments like others can. Many people will not understand what "peer reviewed articles" even means. Some people do not have the education, time, etc. to find things like that - and many patients in particular may not be well enough to at the time they see the doctor. Some will not have the assertiveness to put their own opinion to the doctor, even if their opinion has as much evidence supporting it as the doctor's.

I realise that that doesn't change the fact that the doctor still has to make decisions on established evidence. If I brought some unproven idea to one of my doctors, I'd expect the doctor to be able to clearly explain to me why I was wrong, but I'd expect him/her to see providing that explanation as just a another necessary part of his/her job, and to know that some patients have a considerable advantage over others when it comes to understanding their illness and the available treatment options, and in their ability to communicate their feelings to the doctor.

 

[Essieluv]

If I'm uncomfortable with any treatment/test/procedure, I will challenge my doctors. Some of my docs are great; they listen to me and work with me. However, every GI I've tried thinks they are some sort of gastrointestinal god and get all snooty and mean when I voice my concerns. I'm telling ya, good GIs are really hard to find...

 

[Sea_Star]

I hear you Essieluv. It seems to be very black and white for an illness that is in the gray zone...

OK you're all gonna kick me lol, but since my nurse told me to stop 6mp yesterday until we get the lab results, I now am worried about exactly what I previously said I would prefer in the message above. I know I said I'd rather risk progression, but something clicked almost overnight (again) that hey...it's not normal to have RLQ soreness, and of course...I'm worried now Two days ago, I wouldn't have minded surgery or complications...but now? Something turned the light on, and I really need to get this under control, no matter how minor it may be. You're right Jennifer-no amount of inflammation is acceptable!

The nurse approved the increase to Pentasa 4g a day, and I prob won't get the labs til Monday or Tues. What else can reduce inflammation in the ileum?? I'm really scared I'm gonna have a stricture or perforation or blockage...advice??

 

[UnXmas]

I hear you Essieluv. It seems to be very black and white for an illness that is in the gray zone...

OK you're all gonna kick me lol, but since my nurse told me to stop 6mp yesterday until we get the lab results, I now am worried about exactly what I previously said I would prefer in the message above. I know I said I'd rather risk progression, but something clicked almost overnight (again) that hey...it's not normal to have RLQ soreness, and of course...I'm worried now Two days ago, I wouldn't have minded surgery or complications...but now? Something turned the light on, and I really need to get this under control, no matter how minor it may be. You're right Jennifer-no amount of inflammation is acceptable!

The nurse approved the increase to Pentasa 4g a day, and I prob won't get the labs til Monday or Tues. What else can reduce inflammation in the ileum?? I'm really scared I'm gonna have a stricture or perforation or blockage...advice??

Sea_Star: I noticed you started a few threads recently questioning your diagnosis and interpretation of test results. You need to be able to trust your doctors! Those are questions you should be putting to them, or more accurately, they should already have explained to you. Have you had follow-up appointments to discuss the results you were given?

It's unlikely that any patient is going to be able to learn enough about their disease, treatment options, test results, etc. to make decisions without a considerable input from their doctors. And asking on forums like this one can only give you so much information, most people here are not experts either and certainly don't know all the specifics of your situation.

Doctors do get things wrong, and they do make decisions that are not the best thing for their patients. If you really feel you can't trust your doctors to answer these questions for you, you may need new doctors. But it's also possible that whichever doctors you see you will not feel confident that they are giving you the best advice. That's understandable. Bear in mind that there will be some risks whichever treatment option you choose, and there will always be some uncertainty about what decision is best for you. It's good to do some research for yourself, make clear to your doctors when you think they are not taking into account something important, and ask them their reasoning when they tell you something you're not sure about.

But sometime you have to give yourself a break and let your doctors take some of the responsibility for making decisions about your care! Don't start worrying about a blockage or perforation unless you actually start having symptoms that could suggest one. (And if that happens, you should know about it pretty quickly.) Don't think about until it's close to the time when you are next seeing or e-mailing one of your doctors. Then spend some time planning out what your fears are and how you're going to express them in the appointment. The appointment itself will be when you and the doctor plan how best to minimise the chances of something like this happening. Afterwards, you (try to) stop worrying about it again. :hug:

 

[Harpy]

I was "fired" by my doctor for going off humira on my own when I had severe, painful and troubling side effects. I understood it was very dangerous and that I would not be able to return to humira again; however I have yet to regret my choice and it's been over a year.

When I stated I wanted to try less severe chemical treatments and include diet and lifestyle changes I was informed that those would do absolutely nothing to help my symptoms and that I was being foolish with my health and well-being; that he would no longer see me until I was ready to submit to heavy medication.

I really thought I could trust him, but he refused to listen to my troubles.
I'm currently seeking a new place to live and a new GI doctor.

 

[DustyKat]

I have seen both sides, patients that don’t listen to their doctors and doctors that don’t listen to their patients. As a result patients leave and seek advice elsewhere and doctors refuse to see a patient.

I don’t think anyone can argue that health is the most thing in a person’s life and because of this open, respectful and robust discussion should be part and parcel of any doctor/patient relationship.

The doctor: Yes, there are those that don’t discuss why they feel a particular course of action is needed and their attitude is pretty much…it’s my way or the highway. The age is fast disappearing where patients took their doctors word as gospel and doctors need to understand that and work with their patients. On the other hand though it can be very frustrating for a doctor with years of study and experience to repeatedly have to tell someone that what they are doing will cause them more harm than good. To see a patient that they care about go against their advice and it all end very badly. It frustrates them that the outcome could have been so different and I have seen doctors cry over it.

The patient: They must be their best own advocate, who else is going to have their own best interests at heart? At times doctors need to look outside the square of hard clinical evidence and see and listen to what is in front of them, we aren’t all that round peg fitting into that nice round hole. But with advocacy comes responsibility. Patients need to be well informed and prepared so that the appropriate discussions can take place at the appropriate time.

Have I ‘challenged' a doctor over my care or that of my children? Yes.

The only time I have outright challenged a doctor is when my daughter was in hospital and undiagnosed after 18 months of illness. I knew at that point we were very likely dealing with Crohn’s. I told the paediatrician my suspicions and why and he dismissed them outright. It was at this point that I told him that I refused to leave until they proved to me it wasn’t Crohn’s and I wanted her scoped. He thought I was a lunatic but I didn’t care. As it was she required emergency surgery due to sepsis and lo and behold it was Crohn’s. I didn’t hold it against him but I do hope he took something away from it.

The GI my children have is fabulous. We openly discuss everything and I respect him. He is more than happy to provide evidence for every decision he makes and he listens to my children and works with them.

As to my myself, I have locked horns with a doc many a time. :lol: I am currently having some GI issues myself that are in the process of being investigated. My GP is leaning towards Crohn’s but I don’t agree, I have told him I don’t agree with him and why but I also said that I would never be stupid enough to rule it out without substantial evidence. He respects my point of view and I respect his.

UnXmas has given you fab advice Sea_Star.

As to reducing inflammation in the ileum? If you have acute inflammation then it is steroids or EEN or both. If inflammation is under control, and there is no scarring, and you are looking at disease management then TBH immunosuppressants/biologics are your best bet. Pentasa does work for some people with mild disease but its effectiveness as a mono therapy in Crohn’s disease is pretty poor indeed.

Thinking of you. :heart:

Dusty. xxx

 

[Sea_Star]

Sea_Star: I noticed you started a few threads recently questioning your diagnosis and interpretation of test results. You need to be able to trust your doctors! Those are questions you should be putting to them, or more accurately, they should already have explained to you. Have you had follow-up appointments to discuss the results you were given?

It's unlikely that any patient is going to be able to learn enough about their disease, treatment options, test results, etc. to make decisions without a considerable input from their doctors. And asking on forums like this one can only give you so much information, most people here are not experts either and certainly don't know all the specifics of your situation.

Doctors do get things wrong, and they do make decisions that are not the best thing for their patients. If you really feel you can't trust your doctors to answer these questions for you, you may need new doctors. But it's also possible that whichever doctors you see you will not feel confident that they are giving you the best advice. That's understandable. Bear in mind that there will be some risks whichever treatment option you choose, and there will always be some uncertainty about what decision is best for you. It's good to do some research for yourself, make clear to your doctors when you think they are not taking into account something important, and ask them their reasoning when they tell you something you're not sure about.

But sometime you have to give yourself a break and let your doctors take some of the responsibility for making decisions about your care! Don't start worrying about a blockage or perforation unless you actually start having symptoms that could suggest one. (And if that happens, you should know about it pretty quickly.) Don't think about until it's close to the time when you are next seeing or e-mailing one of your doctors. Then spend some time planning out what your fears are and how you're going to express them in the appointment. The appointment itself will be when you and the doctor plan how best to minimise the chances of something like this happening. Afterwards, you (try to) stop worrying about it again. :hug:

You're right UnXmas. Since the 1st true doctor( the one I saw while in school) was way too aggressive, jumping to put me on both Humira and 6mp 100mg when I never had diarrhea, I fled to Mayo Clinic in MN. There? No sign of inflammation, biopsies negative, elevated LFT due to 100mg 6MP,but found CDiff...which the first doctor never checked. That really put me off, to be cautious with doctors I think. Sometimes, you know your body more than anyone else. But you are absolutely right.

When I started this thread, I was 75% accepting. It took me 4 years to accept the diagnosis and this year to realize I need some sort of treatment, but it took me from July to now to be OK with 6mp. I was pretty ok when I saw my GI doc (had seen others between going back to him), but since tapering Entocort I'm having new abdominal pains which indicate this flare has new pains I never had before. This is the 2nd time in 4 years :/ It's just abdominal pain though...

I hate that 6mp is popping up new moles everywhere (as a single 25 y/o female, this is a bit concerning lol)...but it took the nurse telling me to go off 6mp last Thursday til we get lab results to realize, Pentasa 2g is not enough. I completely take back what I sent my Doctor/Nurse, and I will tell her when I speak to her...but I don't think he'd want to see me sooner than 3 months? I want to go back on Entocort to reduce whatever is going on, but at the same time, it caused duodenitis and gastritis (which I'm still dealing with!)...

I swear...if I had just (re)started 6MP in May, all that could have been prevented....

 

[Sea_Star]

Thank you DustyKat...WHOA 18 months is SO long :0

Glad everything's jiving though, with their GI

And I know...thank you everyone. I feel like I've grown up/matured even more in the last week lol. I regret saying I'd rather have surgery, because now, I want to prevent it. I hope lab results will be in tomorrow! Pentasa 4g (since Thurs) is not working fast enough lol

 

[Jennifer]

but I don't think he'd want to see me sooner than 3 months?

Your treatment plan just changed. You can call and make an appointment sooner than 3 months (I don't know your location, in the USA you can make an appointment anytime, there will be a wait but you can go on a waiting list/cancellation list).

 

[baistuff]

Your treatment plan just changed. You can call and make an appointment sooner than 3 months (I don't know your location, in the USA you can make an appointment anytime, there will be a wait but you can go on a waiting list/cancellation list).

Any significant change should trigger a visit. Doesn't matter when the last one was.

 

[Sea_Star]

update! Nurse just called me....labs all normal, told me to restart 6mp. I told her I had blood in the stool this morning and this weekend, and the RLQ has increased since stopping Entocort, and reminded her that Entocort caused duodenitis/gastritis in the past, and Prilosec gave me shortness of breath...so here's the plan:


Keep taking 4g Pentasa
9mg Entocort x 2 weeks
6mg Entocort x 8 weeks
Restart 6mp tonight(despite the itchy skin going away after stopping it
Blood work in 2 weeks
Prilosec..

WHOA. The last time I had this much going on was in 2010...

I really hope I don't develop SOB from Prilosec this time around...and although the RLQ soreness has let up a bit, I feel what I call "lightboard" abdominal pain in different areas.

I didn't throw out the increase in urination because aside from overwhelming her over the phone, let's face it, even if it is the inflammation from the TI pressing on the bladder, tx is the same.

I asked if I should go back up there to see Dr., she said we can try and resolve this over the phone first..so will see him in January.

Of course, i'm wondering if I should see a different GI-Dr. Shafran in Orlando who is doing all this research and clinical trial into MAP. I don't like treating things just for the sake of it...I like getting to the bottom of it, which makes it difficult for all of us, given the vagueness of this illness.

 

[Sea_Star]

I'm in Tampa, GI is in Jacksonville. I'm not sure what part of CA you are in, but it's kind of like the distance from Bakersfield to San Francisco Maybe a little less...