Dr. Issues and more....

[BWS1982]

Ever since I had my original diagnosis, I've been seeing a group (mostly 1, but recently 2 others in the group) of GI's who've been my primary Crohns dr's, and I was in remission for 4.5 months after the initial 7 month flare up from 2006 into last year (around Easter). Well, this last flare up has gone on 7 months so far as well, but admittedly has been much much worse on me, as the inflammation has progressed (October colonoscopy showed this) to most of the entire colon. As the treatments kept changing and the dr's kept upping the ante with more and more powerful options (eventually leading to a steroid IV and hospitalization in January, and started Remicade), I, until a few weeks ago was getting for the most part, continually worse. Sure there were 2 times where I saw great improvement, once in October after they started Prednisone yet again, and once again from being in the hospital (streroid IV), and I'm possibly seeing improvement again, but....there was a great pattern of uselessness from most of the ammo being fired at this disease over the last 7 months, as I had about 12-15 changes in my medication regimens in an attempt to quell the flare up. Thus, there is a sense of failure from all of it, but the fact is this disease is one of the most tempermental diseases known to man, it's never the same for each patient, not to mention each patients version can evolve as well. There is no cure, there is no factual cause, and even treatments are known to make it WORSE not better for some....My point is that as depressing as my luck has been, I almost expect it, so my failure doesn't seem as out of the ordinary.

Well, my loved ones and friends feel differently, they feel it seems, as if this disease is simpler than that....and that my dr's have been inept and careless. I'll admit they have had some issues returning my calls when I need their guidance promptly, but other than that, this disease is through and through trial and error on many fronts, so I have some give in their lack of success. My girlfriend in particular (probably the staunchest of opponents to this GI group) is very against me staying with them. She has another GI Dr. her family/family friends go to, and they all like him. I had an appointment with him set up, but then went into the hospital instead in Jan, and started Remicade.

Here's the thing: I started Remicade and am in the loading phase still, seeing slow improvements, and still need to give it a tad more time. Well, if I see a new Dr. and he agrees I'm being treated properly, then there's no need to seek out a new Dr. yet. And if he disagrees, well then too bad, I'm in the middle of being treated with Remicade and I'm not going to stop it before seeing if it works for me. So both outcomes from such an appointment are a mute point, and my girlfriend agreed with this, but still feels I should leave them ASAP for this other doc. Now I'm not saying I'll never see a new doc, just not now. I'm in kind of a sticking point, I feel this current path is best for me (and I'm sure many people subscribe to the "what's best for you" mantra), but my girlfriend and her family and sometimes even my family, feel that I could do better. It's hard to get a handle on the demon that is Crohns, we all know this, but it seems regular folk aren't aware of the enigma that is CD and it's subsequent treatment. There's no simple "poison and antidote" equation here, or magic potion to make it go away...it's not hypertension or asthma or kidney stones. It wouldn't hurt just to see what this other Dr. says I realize, and all, but at the moment I'm putting it off, but am keeping an open mind. Money being one main reason, other than it being a mute point.

What do you think, and how do you handle such pressure, someone practically getting upset with you for having a disease and not having control over it? I also have the awkwardness to face that if I switch doc's I have to face the fact that that is like a slap in the face to the current one, and I like him. I have no way to explain myself anymore it seems to my loved ones, they are practically mad at me for sticking it out with this group, and I admit they haven't been perfect and it does "appear" as if I haven't been "optimally treated"....it's so stressing....

The other issue (the reason I titled this thread "....and more.....") is I feel like I'm going to crack sometimes from the stress of the financial burden this disease creates along with the physical suffering. I might need surgery now it turns out on my thyroid if a bout of meds doesn't make the goiter shrink/disappear over a few months....I've got so much debt it's not funny, and I'm earning so little from reduced hours at work from disability. I still live at home and I'm almost 26, I'd have moved out by now had I not had this disease, I've done the math....it's embarrassing. My girlfriend will not always be with me I fear if can't move on with my life so she can move on with hers....

I am hoping the worst is over, but I have to say I'm near a breaking point, there's just so much damn pressure....

 

[BWS1982]

Wow, I hope the longevity here doesn't deter people from even "trying"....

 

[drew_wymore]

I'm fighting the same battles with the same people right now Benson. It sucks. I finally had to sit my immediate family with whom I live down and say "look guys. I'm 29 and I appreciate that you all care about me but the pressure you're putting me under is not helping." Well something close to that but it was filled with many more expletives. I had an appt today though and my current doctor basically said he was throwing in the towel. So I'm forced to find another doctor so I don't have that part of it. It seems people who don't have CD think that "if you just did this or that" that everything would be fine and well sheesh don't you think if there was a magic bullet we wouldn't have all done it by now?!

Sorry to hijack your thread. I'd just thought I'd let you know I know what you're going through and I feel for you man. Maybe sit everyone down together with some docs off the net or something and explain the situation. Most importantly don't give up, I think we all have those days and I find it much more fun to achieve something even if its an uphill battle like it is with CD.

 

[D Bergy]

I do not think it ever hurts to get a second, third, heck a hundred opinions. In the end, you have to make the call. Maybe the world wants you to do this or that. I just absolutely refuse to do anything because of popular demand. However, I will listen to a reasonable argument that makes sense. If the argument makes sense to you, then go by that.

In my mind, it does not make sense to upset what you are doing now, especially since you have had some improvement. If the other doctor was free, I would talk to him. But he is not, and money is usually a consideration. There is nothing to be gained at this time in seeing another doctor, since you are going to finish this treatment anyway.

The person with the disease gets to make the decision on how to approach treatment. I only agree with the doctor half of the time, much less anyone else, so I am used to pressure from all fronts.

How do I handle it? Well I am older and pretty used to doing making my own decisions. In my own family, my wife does not usually disagree with any action I take concerning my disease. She will get on me for doing nothing about my condition. I just am known from reputation of following my own path and that has been established over the years by digging in my heels under pressure.

There is no easy way. There is always someone willing to run your life for you if you let them. Not that they are not trying to help, but they are not in your position, and can't know what you do about the disease. Unless they have some special skill that makes them likely to know more than you, they are only giving you unfounded opinions.

I guess the bottom line is opinions are about the most worthless thing in the world unless they are grounded in knowledge about the subject at hand.
If that is not the case then they deserve little consideration.

Then the issue is, who is going to be responsible for your disease? Your family, friends, your doctor or you. It can be any of these, but you have to decide and stick by your decision until it makes sense to do otherwise.

As far as the pressure goes, I say the same thing when ever someone is pressuring me to do this or that. It is my disease and this is how I am treating it because right or wrong, I have to live with the results. So far I am batting 1000. Hard to argue with results.

Since I know more about Crohn's than the average man on the street and you probably do also, you can say this: When you know more about this disease than I do, I will consider what suggestions you have regarding it. It is not going to bring a smile to their face, but why should you do otherwise?

I guess over time I just do not pay much attention to opinions. I have been screwed too many times doing that and know better now. I do not spend time worrying about opinions. You know what they say about them.

I have personally liked all of my doctors. That is a foolish reason to take their advice. They were all nice people, but precious few helped me. Just because they like this doctor does not mean he is good.

I hope the treatment keeps working for you.

Dan

 

[Kev]

Have to agree with Dan N Drew. In the end, it's your call. Your friends, family and loved ones are trying to help... and it's obvious their love for you is fueling their fear. Keep that in mind when telling them to ... well, lets go with 'back off' versus 'butt out'. They need some support in dealing with their fears and concerns, but it can't be you.. or at least it shouldn't be you. One suggestion, don't cancel that appt. with the other doctor... just postpone it.. Reschedule it for as far down the road as they'll book. That way, you can cancel it later if the current treatment/doctors seem to be working, or perhaps move it up if it all hits the fans. It avoids a confrontation over it (for the moment) yet provides an option IF you need another 'opinion'. As for whether your situation with your g/f falls apart, or cements together.... no crystal ball here. Bear in mind that if you didn't have this adversity to deal with, there's no guarrantee whether the relationship you had would have ebbed/flowed either.. and no guarrantee a separate issue.. your health, her health, work, what have you; wouldn't have come along anyway to rock what you have. If it lasts, it was meant to be. If it doesn't, that too will pass. It's not much consolation... wish there were more.

 

[butt-eze]

I would invite your family to get involved in these forums to gain a better understanding about how difficult it is to treat these diseases.

However, I do need to agree that it never hurts to get a second, third opinion. You mentioned your financial strain. Do you not have insurance. Where is your great expense coming from? Most insurances will cover a first visit with another doctor.

I have seen a total of 4 GI doctors. I have had a better experience with one and have decided to stay with him. However, their frustration with not being able to find a good solution for me was across the board.

I feel like your girlfriend needs to go with you to your doctor visits so that she can ask questions of the doctor, etc. I did this with my husband when he was dealing with anxiety. Having more people in on a visit encourages the doctor to work a little harder, I think!

As for the money...you can not put a price on your life. Don't worry about the money. There are always loans and other ways to pay down your debt.

Your girlfriend may be frustrated but she needs to realize that you have a life-long disease. She needs to know that there will be more hospitalizations, struggles, bills, and more. I'm not trying to be pessimistic, just realistic. Relationships are about the thick and thin. You might have more thins than thick!

I feel like I'm not being very encouraging or saying what you wanted to hear. I do agree that you shouldn't leave your current doctor or quit your treatment. Maybe you just need to appease your family by seeing someone else too.

Good luck and let us know how everything plays out.

 

[BWS1982]

Well, at the moment I'm quite tired to conjure up my reply here, I'll get to it tomorrow, but for now I'd like to just clear up what I meant by my girlfriends family and their family friends "liking" the GI they see, they like him because he's effective, although she's told me he's a nice guy too. Meaning they "like" his work he does....

Boy, I get fatigued so easily while in a flare....

 

[Kev]

Hmmm, well... while you compose a reply, could you clarify a little something for me? Your g/f's family and friends 'see' this other GI professionaly... does that imply that GI issues are 'common' amongst them? Are they familiar with IBD on a 1st hand basis? If so, it changes the equation a little. You'll have to balance what is.. well, like a case of people (any people within your sphere of family or contacts) offering a 'referral' on a great, effective GI... against a possible case of some folks (not to imply that your g/f or her family/friends fall into this other category) who feel that 'their' opinon/assessment of something is the 'RIGHT' answer for everyone. I'm sure you must have come across folks like that in life.
Hey, there are folks like that.. and they can be very controlling by their nature.

I leave it up to you to distinguish between the two.. and to assess/determine whether your reluctance to consider their 'recommendation' is flavoured more by the possiblity that is what you're dealing with; or a case where us guys DO seem to have a problem accepting/listening to advice/ideas from ANYBODY. Its' a question only you can honestly answer. Personally, having gone thru a lot of GI's before finding the 'right' one; I'd be open to listening to someone who had personal knowledge of a 'good' one... problem is, I'd have to consciously guard against then becoming one of those... 'opinonated' helpers whose evaluation of their GI became the only 'right' choice. I dunno if that's only a male failing...

 

[BWS1982]

Well, they have GI issues, but not to my extent, but their family friends who see him DO have Crohns (well I think 2 or even 3 have it in that family, I've never met any of them)...I've been given the email address of the man who has had Crohns for years and years and has a good handle on it. I emailed him the other night to introduce myself as I've never met him, hoping that he can offer some guidance/support. Anyways, to the point of my gf's family, my gf and her dad have acid reflux and her mom has IBS, they have some familiarity with GI issues, but very minor ones compared to mine. I realize they have the right to offer help in the agressive manner, and have experience with GI issues....but I guess my problem is that I am simply postponing this appt as right now I feel what's best for me (the opinion that matters most) is to stick with the Remicade regimen I'm currently with. I plan on seeing this other dr, but later on in time...

I guess it comes down to when, not IF, I see this other Dr., as I've always agreed it's best to check into a second opinion, but at this juncture, I feel it to be a mute point since no matter what the outcome of such an appointment, I'm sticking with the one I currently have, at least for now. I guess the battle with my loved ones/friends is more about WHEN I see a diff Dr., not IF...

Anyways, thanks for the support Drew, Dan, ButtEze, and Kev....I feel I'm on the right track for myself at the moment...I'm really feeling better than I've felt in weeks, only the 2 weeks straight out of the hospital can compete with the improvement I'm seeing. Frequency of bathroom trips is down, and the "sick" feeling I always have had is quelled more too...

The money is an issue (I have insurance) simply because even with insurance I am still owing thousands from this disease. To the point about a free first appointment, my insurance doesn't do that, it'd be $30 copay for a specialist, yes I could afford that, but if I can save money by not going until later, I'll do that. I'm already colon deep in debt from school and my car adds in another couple thousand. I owe a total of probably 30 grand total between everything, and it's even higher than that if you factor in the building interest that will accrue on the $21,000 I owe Sallie Mae for college over the years it'll be repayed....I want to be living on my own and I've been trying to move out for years now but it's one thing after another....

As for my gf, the stress affects us both a great deal...I don't think it'd be best to advise her family or mine to visit this particular forum, seeing as how this thread wouldn't be to kind on their outlook of me, not that I've insulted them, but that it's probably best they don't know I "complained" about their persistence...My gf did visit this forum and poke around a bit a couple weeks ago because I told her about it, and she may even poke around again just to see what's going on and if there's any info she can gather for support. She's a great supporter overall, but is running low on resiliance to all the stress, just as I am. My good friend states if we as a couple can make it through what I'm going through, it'll strengthen our relationship and that we should be able to make it through anything...I agree.

 

[elp888]

When i started getting sick again last december, i went back to my old doctor (who i hadn't seen /spoken to in over 5 years, maybe a bit too long in hindsight). He helped my out very well the first time i got sick - 12 years in remission, not bad - and he's a nice man that i connect to (this is very important for me).
However, the course of action he advised wasn't working at all and things were progressively getting worse. after a while my parents (i am 35!) started pushing for a second opinion, and i felt very reluctant about it: new faces, more tests, i just couldn't deal with that. I felt pressured by them and it made me feel very uncomfortable (even though they are very sweet & supportive and my mom's a doctor - though a different kind). What can say, it wasn't helping me. in the end, i made an appointment, more for them than myself, and i guessed it wouldn't hurt to get another view on the whole situation.
But, before i made it, i was admitted (abscess/fistula) and my hospital sent me to the other hospital (an academic hospital where a lot of CD research is done), because they have much more experience with dealing with this type of complication.

Sorry, the post is getting a bit long, what i wanted to say is that changing hospitals and doctors turned out to be a good thing, because i'm now in the care of more specialized doctors. As i'm having surgery in may, i'm happy it'll be done by very experienced surgeons who've done this many times before.

BWS, you're post is a few weeks old, hope you're feeling less stressed out about stuff and good luck with everything!
e

 

[BWS1982]

Well since then actually, I made yet another appointment, for April 24, with the same one I had to cancel with in Jan. (for the hospital admission that interfered with it).

I like how you said it was more for them than you. That's why I made this one. I'm seeing slow improvements with the Remicade, I like this doc (he's very good actually, been dealing with IBD and gastro issues for several decades and is up to date on the latest info still, and he usually speaks at the Crohns convention in Chicagoland area, he's the senior doc in the GI group I go to). The other doc I'm seeing is not going to change much IMO, as I said, any outcome will be irrelevant. If he says "yeah, looks like the regimen you're on is optimal and I wouldn't change a thing" then why would I start seeing him. If he says "it's all wrong, I'd do this this and this" or "Mostly good, but this is a change I'd make..." then I can't just stop the Remicade (we all know how wise that'd be if I'm seeing improvement)...I don't know it just seems pointless, but hopefully it'll silence those who complain.

 

[elp888]

Good for you, keeping friends and family happy is also important

Sounds like the doctor you're with right now is really on the ball, and the fact that you're in the middle of a new regimen, is also a reason not to change anything for the time being... but hearing what another doc says will be informative, right?


Good luck!
e

 

[Sojourn]

It would be highly unusual, I think, for a Dr. to suggest taking you off Remicade, especially, if it's working some because when you stop your body can develop antibodies rendering it ineffective indefinitely.

The most interesting interaction I had with Dr.'s was when I went into the ER before being diagnosed as different specialties came into my room trying to figure out what was wrong with me. Finally, the GI guessed that was either Crohn's or colitis. But I didn't have insurance at the time, so I was released without a colonoscopy or diagnosis.

I went back to that GI once I got insurance and got the diagnosis and treatment which didn't work of course. Gave up on Dr.'s and went a few years on my own until I had to have surgery and qualified for Remicade and Humira. I'm on Humira which is working okay, but not great.