My uber-fun ordeal with Crohn's

[jumbasi]

my uber-fun ordeal with Crohn's

Hi all, my name is George and i'm going to tell you my story as concisely as possible.

I was diagnosed in 2001 when i was 19 and presented with terrible stomach pain, bloody stools, inability to tolerate anything by mouth (even water) and massive weight loss. went to see my family doc, he ran some blood tests and suspected crohn's from the beginning do to an elevated SED rate (i believe). So he referred me to a specialist who also ran tests, wanted to do a colonoscopy but believed i was too sick at the time. He put me on prednisone with minimal results, at this time he was also trying other meds if i remember correctly (asacol, imuran, 5asa) none of which were beneficial.

Fast forward about 2 years, in the time that passed i had a colonoscopy and was officially diagnosed with Crohn's. Nearly all the medicines had minimal results so he decides that it's time to try remicaide. I got my first infusion and that day i went home and made my only "turd" in years, it was indeed a momentous occasion. but after a week or so the effects wore off and i was looking at 7 more weeks of misery (i've since learned that this is not the correct way to administer remicaide). during this time i had some insurance changes and my new company was not going to cover the remicaide for whatever reason. so after about 3 or 4 infusions my doctor pulled the plug on the remicaide and started giving me methotrexate shots.

it went on like this for a while until I changed insurance companies again and my doctor decided to try remicaide again. Again it was only administered every 8 weeks and i was having very little relief, 2 weeks max after each infusion. so after seeing this he stopped the remicaide again.

during this time i was getting severe pain in my lower right quadrant that would happen semi-often. for 6 months i was calling about the pain and getting the response "that's where crohn's patients most often feel pain" or better yet, no response at all.

so one day i feel very nauseous and went to the bathroom to vomit, when this happened i felt IMMENSE pain in my LRQ like nothing i've ever felt before and i knew it was time to go to the ER. (i had since moved about an hour from where i lived, but for wahtever reason decided to keep the doctor)

Well what happened was that i had developed a massive abscess in my LRQ as well as fistulas connected to it, and some perforations for good measure. I didn't find this out for about a week because i was so inflamed that they couldn't see what was going on in the CT scans. At this point i'm at a local family hospital and they have put me on TPN and placed a PICC line, a drain into the abcess and treated me with Flagyl and Levaquin. They also wanted to remove my colon...

i felt that this was not the 'final answer' so i decided to get a second opinion at UPENN in Philadelphia. it was the best thing i could've done. No surgery yet and I'm starting Humira tomorrow, just finished the TPN and haven't had any real symptoms or pain.

to put it all together, i spent 3 weeks in 2 hospitals, was told I could've died because of becoming septic and haven't had a real meal in over 2 months. All this being said, do you believe my doctor was at fault in some of this? considering the 6 months of complaints about pain, the fact that i've had 1 colonoscopy in 6 years, his obvious misuse of remicaide...only once every 8 weeks, never 3 quick infusions to start, and him just taking me off the remicaide like that? he's also said in our appointments "you puzzle me, i just don't know what to do with you" and i understand that when he said that i should've gotten a second opinion, but at this time i was naive and i trusted him.

anyway the reason that i ask is because a friend is an attorney and she believes this is a clear case of negligence and believes i should take legal action. I'm somewhat torn because i don't want to be greedy, or vengeful, but when i think back on my life for the past 6 years, i realize it was misery. i didn't have any remission to speak of, was in pain constantly and just really had a low quality of life. My fiance has lived through most of this with me and has been IMMENSELY supportive, but she is convinced i need to sue him as well. anyway sorry for the novel, but any input would be appreciated!

thanks and it's nice to meet everyone!

 

[butt-eze]

I'm interested to hear what other peoples' responses to this are.
I am not one for suing people and have had circumstances myself that people feel warrants it. However, I feel that many of us have discovered through the battles of UC and Crohn's to realize that if you are not your own advocate you may not receive the best care. Because we only have one life to live I would utilize your energy and resources to make a change for your condition. Perhaps you could get involved in spreading awareness about Crohn's so other people don't have to go through what you did.
Certianly you will receive support from other sufferers if you feel you want to move forward with legal actions. I am just hoping that all of the people within the Crohn's community can work together to find a cure or a better fix.
There are local chapters that you can join and get involved in.
Please don't get me wrong...I'm not trying to make light of your situation and/or suffering. Many people can tell a similar story to yours but it was you who suffered and you are still an individual.
Bottom line. Did you doctor cause you to develop crohn's? Probably not. Did he prevent you from getting well faster? Maybe. Unfortunately, many if not all doctors do not have the immediately and correct first response to a flare.

 

[jumbasi]

I feel that many of us have discovered through the battles of UC and Crohn's to realize that if you are not your own advocate you may not receive the best care.

i couldn't agree with this more, i learned the hard way but it is certainly true that you have to be your own advocate or you may be overlooked.

and thanks for the input. it feels good to be in touch with folks who understand.

 

[Sojourn]

With Humira, I think the starting dose, 160mg (4 injections) wasn't recommended until recently. I think that's what the nurse at the pharmacy told me. So it could be the same for Remicade. In any event, I think you would have a difficult case. I don't know much about medical malpractice, but I think you would have to prove that you suffered harm due to the doctor's decisions or actions. With Crohn's, especially, it would be easy for the defense to argue that there's no way to know whether you would have continued to have symptoms regardless of what the doctor did.

And though there may be a standard method for administering Remicade, or Humira, there is no standard treatment for Crohn's. Maybe I could sue my doctor for not putting me on Humira soon enough. Or maybe for not trying some other medications, or recommending a certain diet, etc. You get the point.

I understand your friend is an attorney and I am not, but I really don't think you have a case. And one reason the cost of health care is so high is because of doctor's having to defend themselves in court over countless lawsuits. Why did you wait 6 months before going to another doctor if the pain was that bad? Or the ER? This is another thing they will say.

But I don't know all the facts. If you feel strongly about it, maybe you should do it.

Otherwise, I hope the Humira works well for you and you get to doing better real soon.

 

[jumbasi]

thanks for your input sojourn.

i am of the same opinion about suing the doctor, it's probably counterproductive anyway.

just wanted to get some opinions from you folks.

 

[Kev]

Which doctor? Your GP or the specialist? If your GP said your case puzzled him and you didn't seek a 2nd opinion, that's major contributory negilence on your part... But if you were in the hands of a GI specialist, who your GP referred you to, because your case puzzled him...and he screwed up... welll, that's a different story... To put it into perspective, it was recently disclosed that a neighbouring area pathologist, thru incompetence (which he endeavored to hide) mis-diagnosed 15,000 cases (suspected cancers).. Should he be sued?
You bet your everloving... Will he be? Probably not by the 'false' negatives...

The remicade fiasco may come back to haunt you in the long run. Time will tell..
Doctors carry insurance for many reasons... sometimes to pay for honest error, others because they didn't take the time to research, know a drug, before they trotted it out. Talk to some contingency lawyers, arrange a percentage, and if you've got a legitimate case... the insurance company will probably negotiate a settlement that may come in handy down the road... You are only 26 now, and who knows what lies ahead of you... and when or how much future treatments may cost. You are partly to blame for this, but the dr's are the 'professionals'!

 

[tmcuddles]

Honestly, I had a situation that many have told me to sue for as well. I personally don't think it's worth it because all the physicians that finally diagnosed me said that Crohns is a difficult diagnosis. My symptoms were backwards. I had the erythema nodosum and the throat infection. I had stomach pains and inability to eat anything worthy of being called food and my PCP still thought I had mono. He tested my blood about three times, each mono test coming back negative and still told me I had mono that wasn't showing up in the tests. I was finally told to take twice the recommended dosage of advil for the erythema nodosum in my legs and that caused the bleeding. It wasn't until then that I was diagnosed.

I am just greatful that I was finally diagnosed and that's why I don't think a lawsuit is at all worth it. I plan to just find doctors that are reliable and move on. Just my opinion.

 

[jumbasi]

Which doctor? Your GP or the specialist?

no it was my specialist that said he was puzzled by me, i realize i probably should've tried to seek out another opinion at this time but i was naive and also very trusting in him.

 

[butt-eze]

My GI doctor frequently said she didn't know what to do with me. I got a second opinion and eventually a third before switching doctors permanentely. This disease is puzzling!

 

[Creepy Lurker]

I was under the impression that when you stop taking Remicade (Infliximab), you develop anti-bodies against it making it useless.

 

[butt-eze]

Hey Creepy!

I've heard the same thing. It's not always a guarantee that you will develop the antibodies but there is a high likelihood. That's why you shouldn't discontinue unless you are sure you will not be trying it again.

 

[drew_wymore]

My GI doctor frequently said she didn't know what to do with me. I got a second opinion and eventually a third before switching doctors permanentely. This disease is puzzling!

I have been told this by my GI doc pretty much every time I see him. I have major faith in him and he's done some amazing things in terms of getting tests done stat that would normally take days or weeks to get done otherwise I would have switched. He himself, even brought up getting a second opinion so I know he's got my best interests and treatment in mind so I stick it out. It is indeed an incredibly puzzling and hard disease to diagnose and treat for sure.

 

[BWS1982]

hi

Nice to meet you jumbasi, new here too.

As far as suing, I'd need to hear what your friend in law says is your case before I'd pursue it if it was me. I would only go through it if I knew it would go anywhere. Then again, part of me agrees about moving on like some others have said.

 

[ruthymg]

Hi, I have a similar case to you in that I had a GI specialist at one hospital that had no idea what was wrong with me, put me on the coeliac diet then gave me enzyme tablets for pancreatitis and eventually after 6 and a half years I went to my GP to ask for a second opinion. By the time I was diagnosed 6 months later after several tests my crohns was active in both my large and small bowel. Its true to say it is difficult to diagnose and I know we all have to put up with a lot of crap (quite literally) but I really think sueing will be a pointless exercise. You need to channel that energy into continuing getting better. You should feel self satisfaction in the fact that you knew things weren't right at the time, you did something about it and now you're getting better. Thats far better than grasping at the possibility that you may or may not have a case to sue.


Ruth