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Finally saw my GI doc after getting diagnoses on 7/12

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Ulcerative Colitis
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Posted 8/5/2010 1:11 AM (GMT 0)
Wow!  I had to wait 3 weeks to talk to my doc about treatment options. In the meantime I tried to gather as much info I could on the internet and thru this forum.  He shot me down for that..saying he "can't compete with the internet". Asked him about the SC Diet...."No diet will help me". I was basically told I'm gona be stuck on meds all my life. If I get off them even when I'm feeling better I'll just wind up back in his office with it being worst. Oh yea..he tried to connect with me by saying.."yea I know having a chronic illness sucks." 

Are all specialist this hard on their patients?

Could use some cheering up.  I'm doing all I can to come to terms with this. Didn't need my self-esteem squooshed down any further cry

Posted 8/5/2010 1:17 AM (GMT 0)
It's really unbelievable you had to wait so long to see your doc. I too had to wait two weeks after I got out of the hospital, but I was on prednisone so it was not so urgent because my symptoms had stopped. My doc said "don't read the Internet" not this, "I can't compete with the Internet" You are probably going to have to be on maintenance meds the rest of your life and it's not that bad because you know you are taking care of yourself. I know it can be disheartening at first to hear about a lifetime of meds.

How are you feeling now? Are you just doing an enema once a week? It should probably be more.
Posted 8/5/2010 1:53 AM (GMT 0)
That is exactly what happened to me. I had to wait about three weeks to see my doctor after being diagnosed. I had all these questions I learned from the internet and he shot them all down including those concerning diet. He told me there is no evidence that food has any effect on UC. All I know is that I'm moving back to college in 2 weeks and I'm still not better! I would get a new doctor that is willing to listen to treatments that you would like to try.
Posted 8/5/2010 2:00 AM (GMT 0)
I'm hanging in there. Thanks for asking.

I was doing enemas daily but he added oral pills and lowered the enema to once a week. Got folic acid, Probotics too.

I read some of the older post and some people have the same issue with the docs...they don't like us learning about this on the interest...and their interpersonal skills suck. At least he gave me permission to go to ccfa.org, Cleveland Clinic's, and University of Chicago's website.

Will hang around here too...with my new friends :).

Thanks for caring..it makes a world of difference turn

 

Posted 8/5/2010 4:45 AM (GMT 0)
Wait a minute...why are you not on the enemas nightly again?

If you go in and ask a doctor about the SCD, you won't get the answers you want...do that on your own if you're interested in trying it.

What treatment options were you wanting to ask about? Did you ask him about scheduling your enemas to increase them during flares and taper to maintenance more than once a week, lowering your oral meds instead?

q
Posted 8/5/2010 11:32 AM (GMT 0)
I mentioned to him that the last 2 nights after apply the enema it was feeling harder to keep in.  Guess my body was satuarated after doing it daily for 3 weeks. He lower to dosage to daily and added the oral pills at a high dosage.  Depending on how my body react and if I'm in remission then he can lower to pill dosage.  I guess remission is when there's no blood and you poop 1x a day.  Sound like from some of the other posts the gurgles and cramps may stick around....they are a side effect to the med anyway.

I mentioned the gurgles to him but he really didn't say much..only that it prove my digestive system is "moving things along".

I'm also trying lactose free diet for a week and see if there's any different when I have regular milk again.

I have a follow up with him in 3 months.

Wish me luck!

Posted 8/5/2010 12:18 PM (GMT 0)
What a horrible experience! I am so sorry!
Can you look for a new doc....?
I know there are good GIs out there. I have had 2 GIs say to me more or less, "I went into GI work because unlike some other specialties I would have the opportunity to develop ongoing relationships with my patients..."
And some are open to talking about things like diet, supplements, etc- I first learned about probiotics from a GI; and have worked with two who knew a lot of specifics about them and believed in them.
And psyllium, Metamucil, was recommended to me by a GI 24 years ago.
Re the Internet thing...... for one thing, to pat "us" on the back, no doc would believe the quality of thinking and research of our good friends here at HW! And some docs probably think "scam" when they hear we found it on the Net....

Re meds the rest of our lives.... the general experience (there are always exceptions, people who are sensitive, etc) is that we stay on the 5-ASA meds, even in remission, because our remissions are likely to last longer. Also, if we stop the pills, they sometimes don't work when we re-start them.. so many/most of us just stay on them.
Anyway, hang in there!
Posted 8/5/2010 1:20 PM (GMT 0)
OK. I finally had it with my GI!  I sent him an email regarding answering some question for LTD insurance and he writes back that he will not support me in apply for disability.  I was not applying for benefits but for the insurance.  I need a doc who listens to their patients, not have one who has his own head up his own A**!

UGH! mad

Posted 8/5/2010 1:33 PM (GMT 0)
Sorry to hear that he's not connecting with you. Sounds like he's not hearing everything you are saying. Sounds like you definitely need a new GI.
Posted 8/5/2010 1:57 PM (GMT 0)
I know it sucks! The only problem switching docs, to me is, that they all want the money from the colonoscopy. I swear I went to 5 different rectal/GI's before I settled on this one I have now, and they were so eager to do the colonoscopy first they didn't want to talk first.

If you can switch and take all your medical records to the new doctor. Don't go to a rectal surgeon, that was my mistake first of all. I was on meds for 6 weeks (rectal and oral) he said all my ulcers were gone I could quit cold turkey on my meds and I became worse. Then I tried no meds at all basically for the last four years now my mild UC has become moderate! Much much worse. So stick on your meds.

I'm sorry you are probably feeling alone in the real world but here on this forum we help each other out, so keep reaching out to us ok?

((((hugs))))

 

Posted 8/5/2010 2:28 PM (GMT 0)
Thanks for the hugs!  This forum has been great so far.  I shouldn't have to have another colonoscopy. I'm with Kaiser so everything is enclosed and info is shared.  I've ctc my primary care to she if she can recommend one. I'm also checking out the rating on http://www.vitals.com/. 

I found out my current GI only has 3 years experience!  His approach was so dishartening that I rather go to another Kaiser facility than go to another doctor in his same office..just to avoid him all together. Never know what gossip may get around the office too!

Posted 8/5/2010 2:47 PM (GMT 0)
Your with Kaiser? Where are you located? I just had to leave Kaiser... maybe I can help you.... maybe not. When I was first diagnosed, my GI told me that diet doesn't work, but I still tried it. It's worth a shot to try the SCD diet. All you need to figure out though once you are completely under control is your trigger foods. Once I figured that out I created my own diet to baby my body until it got better.

Let me know where u r and if I can help you, I used to be in Sacramento, CA.
Posted 8/5/2010 3:32 PM (GMT 0)
Thanks Sweetie,

That's my whole approach to the diet thing..to find out what the triggers are.  If diet have no effect than how would being on a lactose free diet help...as recommended by his "hininess"?  lol 

I'm located in Northern VA just outside Washington DC....kinda far from CA!

Just got a recommendation from my primary care doc.  I have some friends who are doctors too and send them an email.

If needed I can switch health insurance at the end of the year w/o worrying about pre-existing condition clause...one of the many benefits being a public servant!

Posted 8/5/2010 6:35 PM (GMT 0)
Glad to hear it's working out! Hope you find a good GI who seems to be understanding for you. I didn't know there was a Kaiser way over on the East Coast. That's cool!
Posted 8/5/2010 7:06 PM (GMT 0)
We'll see. Just put in a call to the new GIs office. I really need to find one I can connect with..especialliy as treatment need to be customized for each individual.

Oh I just pick up my oral pills...Mesalamine (Asacol) 400mg.  The paperwork that came with it just made me ill reading! So if I got such a mild case why am I on such a high dosage..4 pills 3x daily!  UGH! I need a second opinion!!!!

Posted 8/5/2010 7:20 PM (GMT 0)
What are your symptoms right now?

It is hard to come to terms with at first, but most of us are on maintenance meds for life even when/if we go into remission, and you would be hard pressed to find a knowledgeable doctor who would tell you otherwise.
Posted 8/5/2010 7:30 PM (GMT 0)
I'm glad you set to finding a new GI asap. You said it so well, and that's my opinion, too - because of the individual nature of this, and also because it's an ongoing thing, it's important to have a GI we can work with.
I would say you shouldn't worry about the 12 pills of Asacol - if it calms down your gut, once you're in remission you could lower the dose some for a maintenance dose. But right now, take what you need to get the flare calmed down - and of all the meds, Asacol is is most benign.

(Yes, I know the packet insert is terrifying - but IMO, that's just the rules and regs of the day - if aspirin or tylenol were "prescription only", I'm sure their info would be as long and scary.....)
Posted 8/5/2010 7:45 PM (GMT 0)
My advice: find the best hospital in the area and find the associated GI doctors. This should be doable where you are. There may be IBD centers. Here is one at JH and another pracdtive I found using the google:

http://www.hopkinsbayview.org/digestivediseases/ibd.html

http://www.gastroenterologyassoc.com/providers.php

Posted 8/5/2010 8:21 PM (GMT 0)
thanks mysticlaker! I'll bookmark these :)
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