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Misdiagnosis leaves me no option...

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Ulcerative Colitis
What should I do?
Remove colon through surgery - 7.7% - 1 votes
Continue on meds, hope for the best - 46.2% - 6 votes
Try natural healing products under doctor's care - 7.7% - 1 votes
Nothing - 0.0% - 0 votes
None of the above - 38.5% - 5 votes
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Posted 5/13/2008 10:13 AM (GMT -7)
I was 20 when a doctor in Baton Rouge, Louisiana diagnosed me with Chrons. He put me on steroids and anti-inflammatory medications. After a few months of no symptoms he pulled me off the steroids and days later my symptoms were back. Now, 2 years later, I've moved to a new city, got a new doctor and had another colonoscopy. I don't have Chrons. I have Ulcerative Colitis. And it's throughout my entire colon. I was told I needed to speak with a surgeon about removing my colon.

Here I've lived for two years with no hope of a cure for the disease I thought I had, and now they're telling me I have a disease that has taken my colon. I had had dirreah for eight months with no relief, and the docors kept telling me there was nothing they could do because at the time I was pregnant. They wouldn't even run tests. They did nothing. And for two years I suffered with the same problems thinking there was no other way. They could have diagnosed me correctly and removed a portion of my colon two years ago and I wouldn't be facing these hassles now.

How is it that doctor's can be so smart and yet they can botch someone's life like this and expect us to follow their lead?

I'm 22 years old, married, and have two children(3 and 2). What do I do?
Posted 5/13/2008 10:15 AM (GMT -7)
I"m sorry you have been through so much. Have you tried meds such as Imuran, Remicade, rectal meds? It also sounds like you need a new GI!
Posted 5/13/2008 10:25 AM (GMT -7)
My husband was injured the year before I was diagnosed and lost his job (and his insurance). His injury put him out of work for almost six months and only after on light duty. He wasn't making enough money for us to afford regular insurance so we had to get medicaid. I was diagnosed July 2006 and since haven't been able to find insurance that will cover Remicade. Those that will cost more than my husband makes in a year.

Bummer, huh?
Posted 5/13/2008 10:27 AM (GMT -7)
Have you tried remicade and or humira first?

:)
Posted 5/13/2008 10:31 AM (GMT -7)
I've never actually talked with my GI. Every time I go to an appointment his nurse sees me. He performed my colonoscopy last Friday and I got to see him for the first time for like 2 minutes. I mentioned Remicade, Humira and Imuran to him and all he did was shake his head. Then I was dosed with Demarol. I've only ever talked with nurses, and the crazy thing is, he's THE best GI in the Northern Louisiana area so there's no one better for me to see here.
Posted 5/13/2008 11:04 AM (GMT -7)
With all due respect, he can't be THE best GI in the area... he isn't even talking with his patient! My advice... try someone else. At least find someone that you can have a conversation with - someone to whom you can ask all of your questions.

Surgery is not to be taken lightly, and you want to make sure you have investigated and understand all of your options before you make a final decision. You can't do that if you have a GI that won't speak with you.
Posted 5/13/2008 11:09 AM (GMT -7)
I'll try to find you some info...I think there is a program Remicade does to help patients that can't afford the medicine. I believe we have a couple of members doing it.
Posted 5/13/2008 11:36 AM (GMT -7)
One of our members posted this link on another thread.

http://www.seniormag.com/free-medication/centocor-remicade.htm

By the way everything on Remicade's site says Medicaid covers remi. Maybe double check??? I take Azathioprine (generic of Imuran) and it pretty inexpensive.

I'll have to agree that if he is the 'best' then you should be receiving a lot better care. I would be complaining to everyone at the office about the care you have received.
Posted 5/13/2008 11:45 AM (GMT -7)

gigimama0506 said...

How is it that doctor's can be so smart and yet they can botch someone's life like this and expect us to follow their lead?

Doctors are not superhuman. They make mistakes, too. And there are alot of crummy docs out there. Crohn's and UC are often misdiagnosed or one mistaken for the other. My diagnosis came into question again after I'd supposedly had UC for several years and was experiencing atypical symptoms. IBD is often not as clear cut as we'd like it to be.

That said, second opinions are always a good idea, especially if you're facing a major decision like having your colon removed. If ever you feel you aren't getting adequate care from a doctor - and the fact that he doesn't even deign to examine you is a pretty good sign you aren't - it's up to you to seek it elsewhere. Medicaid complicates matters, but I can't help but think you should have a patient advocate or someone to whom you can present your concerns and your desire to be seen by a different doctor.

If I've learned anything through the course of having UC, it's we must all educate ourselves and stand up for our rights to receive quality care and freedom to make our own treatment decisions.

Doctors, meds and finanical issues aside, I'd also advise you to look into natural supplements and dietary therapies that could help you get your condition under control so that you might possibly avoid costly surgery and immunosuppresants. Just another option to consider. Lifestyle and dietary modifications cost you little or nothing and can have very positive results, in my experience.

Posted 5/13/2008 12:51 PM (GMT -7)
I've been diagnosed first UC, then Crohns, then UC (pancolitis). Did you ever try 6mp? If you can't get approved for Remicade try that. I've switched doctors a couple times. Always get another opinion and try other options before surgery.
Posted 5/13/2008 2:04 PM (GMT -7)
I too have Colitis throughout the entire Colon(Pancolitis),it doesn't make you an immediate candidate for surgery.With the right meds you can achieve good results and if your GI shook his head at those you mentioned he CANNOT BE the best in the area!

Please find a GI that goes through the normal routine of med therapy before considering surgery.Some people are unfortunate enough to find none of the meds work and opt for surgery,but that route needs to be gone down first.
Posted 5/13/2008 2:06 PM (GMT -7)
I am a big supporter of surgery, having had it myself, but not until you run out of medical options. It seems as though you have not cycled through all the UC meds. The impact of surgery is huge, it does have rewards, but you don't want to resort to it if you haven't exhausted your medical options.

Sue
Posted 5/13/2008 2:23 PM (GMT -7)
Medicaid generally covers anything that's FDA approved, although they may require you to try older, less potentially toxic and less expensive drugs first - which all of us have done, even if we do have private insurance. Generally the first drug tried is a 5-ASA like Asacol or Colazal, perhaps with a short-term course of steroids to jump-start a remission. These are generally combined with rectal medications to assure the entire colon is being treated.

Most doctors use immunosuppressants as a second line of attack. These would be drugs like Imuran and 6-MP, which are really relatively inexpensive. If these don't work, the usual next drug is Remicade. Humira may not be an option for you at this time because it hasn't been FDA approved for UC yet. That isn't unique to Medicaid, many insurers won't cover off-label use of drugs.

I understand your choice of specialists may be limited by your insurance, but most insurance policies have this feature also. I'd suggest you use some of the resources posted on this site to start educating yourself so you can be a knowledgable partner in your own health care. UC isn't the end of the world, and in most cases can be well-managed with medication. So don't give up, just make up your mind to learn about it and be sure you get your questions answered. This is a good place to start!
Posted 5/13/2008 2:46 PM (GMT -7)
I'm sorry, but your options are ludicrous! There is such a thing as being proactive- you have internet access, so use it to research commonly used UC meds. All of the drug companies also offer Prescription Assistance programs- it's just a matter of filling out paperwork & making phone calls. And, removing a portion of colon is not a viable surgical option for UC- if you had a portion of your colon removed 2 years ago, chances are you'd still be having the same symptoms you do right now. Obviously, this top GI doctor is a nutjob. What about your primary care doc- have you gone to them & explained what's going on & asked to be referred elsewhere? Even if it's out of network, most primary care docs will do that. I don't have medicaid but I do know it covers a heckuva lot- what do you do? you find a new doctor ASAP!

Posted 5/13/2008 4:30 PM (GMT -7)
Maybe you can just go on a predisone taper which is super cheap and get to the point where you are not so overwhelmed and you are feeling okay and then think about it. Predisone is one of the cheapest drugs out there and it makes me feel better imediatialy. You would probably have to take it before surgery anyway.
Posted 5/13/2008 9:09 PM (GMT -7)
gigimama0506 - Try remicade or Humira.

Similarly, you could participate in the Golimumab trial if you can find a hospital nearby that is hosting that trial. I am having exceptional results with this drug. I have extremely severe pancolitis and have been in a continuous flare for 2.5 years. After less then two weeks of being on this drug, I am getting solid bowel movements and my toilet trips have dropped noticeably. I have heard this is what remicade is like for many people.

And GET A NEW GI BECAUSE YOUR ONE SUX. Get a GI that will talk to you, and will spend the time you need to help you look at options. It sounds like the one you have at the moment is just a band-aid fix kind of doc who just gets em in and out as fast as possible.
Posted 5/13/2008 9:16 PM (GMT -7)

expecting226 said...
With all due respect, he can't be THE best GI in the area... he isn't even talking with his patient!

Agreed! Have you tried all the other GIs in the area? If not, I'd suggest you try another one. His behavior is really not acceptable. If there isn't anyone else in your area, is it possible for you to travel somewhere else to get another opinion/find a doctor who actually listens to you?

What UC drugs have you tried besides steroids? My whole colon was affected pretty badly when I was first diagnosed, but oral and rectal 5-ASA meds have helped me tremendously.

Posted 5/14/2008 11:04 AM (GMT -7)

First off, hang in there.  Keep digging to learn all you can about this hideous disease.  I can not speak to you on what medicaid will or will not pay for.  Nor can I speak to you on what treatment would be right for you.  All I can do is encourage you to do is research all you can and understand the disease.  Your situation actually doesn't sound to unfamiliar from many of the stories I have heard to include mine.  When first diagnosed the doctors tend not to go into detail about the disease and it's treatments.  I am not sure if this is because the limited time they have with each patient or if because of their education they forget that two minutes before talking to us we had never heard of UC or Crohn's.

As far as GI doctors go, remember that UC and Crohn's are just two of the numerous GI problems that they deal with.  Your doctor may have a ton of experience with hiatal hernias but you may be one of just a few UC cases he is dealing with.  I am not trying to make excuses for your doctor but some just have too many patients and do not review each chart with the scrutiny they should.  If you don't feel confortable with this doctor then call medicaid and explain the issue.  Explain to them that they are wanting to push surgery without trying treatment and with a confusion in diagnosis (one doctor called it Crohn's one called it UC).  Since the treatment, and surgery is normally different between the two this may cause a rep at medicaid to push you getting another opinion to first determine which you do really have.

Surgery is a big step but sometimes it is the only option.  I have been through everything with UC and now I am finally at the surgery stage (tentatively in two weeks).  The biggest argument I get is that surgery is permanant, my response, so is death.  I never new the severity of this disease until just a few months ago when my health went down hill rapidly.  It all came to a crescendo when I was life-flighted to the ER with sepsis, a complication brought on by the UC and amy immune system was unable to fight it because of all of the prednisone use.  Five days intubate and sedated in ICU gave me an entirely different look at this disease and the treatments.  Some of the medicines used have some serious side effects short and long term.  All of these things need to be considered when making a decision about treatment.

As you research this disease you will find out treatment is as personal as a finger print.  What works great for one will have negative effects on the next person.  Keep researching, ask questions, (here and at your appointments), and never accept any treatment you don't understand.  Just because one doctor thinks it is right doesn't mean it is.

Posted 5/14/2008 3:25 PM (GMT -7)
I'm so sorry you have been through so much! I would definitely look into other options before having them remove your colon. I use Remicade and it works pretty well for me. My colon was in pretty bad shape two years ago and we got it healed so there is hope. Good luck and please keep us posted!
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