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Finally saw a new GI

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Crohn's Disease
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Posted 6/14/2012 6:02 PM (GMT 0)
I saw a new GI. When he saw the ample scopes I have done so far (3 colonscopies, 3 upper endoscopies and 1 enteroscope), he was in a rage. What made him more angry was when he knew that I have taken pred for one year and a half, azathioprine for 7 months, methotrexate for 4 months and am now on entocort. He told me that all I have is microscopic colitis and that could be solved with the least dose of pentasa. He insisted that my problem is a severe functional one and this could be treated with antispasmodics and a mild antidepressant. As for the rectal leakage and swelling, I have to return to the weird surgeon I have been to lately. He has only one condition and that is I have to taper Entocort ASAP. If I comply to this, I can continue with him, otherwise I have to find another GI.
Though his language was a kind of threatening, he told me that he could simply diagnose me as a Crohn's patient as was previously done and have no conscience pricks. However, he was very angry because he saw that the meds I have been on are far a way more than the degree of the disease I got. When I complained that pain was sometimes unbearable, he told me that he believed me but the cure was not pred or MTX.
Thank you very much for listening.
Posted 6/14/2012 6:15 PM (GMT 0)
Did you tell this GI that you have taken Pentasa and that it gives you terrible upper GI pain?

It's hard to know what your new DR is really like from reading your post, but I get the impression that he's just another opinionated DR who has decided he knows best and there's no other way.

Posted 6/14/2012 6:32 PM (GMT 0)
Kazbern, I have no other option except waiting and seeing what will happen. Though I have been on antispasmodics only for more than 10 years before I started pred and pentasa and they never did anything and pain persisted.
Posted 6/14/2012 6:50 PM (GMT 0)
Minnietoty, what do you think is going to happen when you "wait and see?" What is you are waiting for? What is the plan going forward, antispasmodics and Pentasa?

Why is your GI's conscience considered meaningful to your condition?

What is returning to the "weird surgeon" supposed to do about the inflammation in your rectum?
Posted 6/14/2012 7:06 PM (GMT 0)
I don't know. Really, I have exhausted every possible treatment and doctor. My mum hopes I get better and so she asks me to be patient and take the prescribed meds. I don't know. Deep inside, I know it won't work. These doctors have not felt the horrible pain I used to have at the beginning of the disease nor do they have a problem in sleeping most of the nights coz of pain in the rectum or the inability to stop D no matter how many Imodium tablets I take. This happens sometimes to me.
Posted 6/14/2012 7:36 PM (GMT 0)
Minnie, what I want is for you to take ownership of your illness. I hope you aren't offended by this comment, but it seems to me that you are waiting for some DR to present you with The Answer. As I'm sure you've seen here time and time again, the best solutions are found by a patient and a DR working together to figure it out. You keep finding these DRs who are authoritarian and "threatening" and you don't seem to be a partner in finding a solution.

I am sure that you have not "exhausted every possible treatment and doctor." And I'm glad to hear that your mum hopes you get better. But as some of my colleagues like to say, "hope is not a plan."

Keep looking for the GI who will work WITH you. And you need to be willing to work WITH the GI too, and not just listen passively to what you are told. If you don't understand what it is you are "waiting for" after visiting with the latest GI, then you didn't finish the conversation you were having with him. I know how it feels to be talking to these DRs who are so sure of everything and leave you feeling like it's time to leave the office - but it is so important to slow that conversation down and make sure that all of your questions are answered. It helps to have them written down. It helps to bring someone to the meeting with you. It helps to write down the plan and then review it again with the DR, with the next meeting date in mind.

With my daughter and her GI, we have met twice in the last month and will meet again in August. We have a clear set of criteria to move forward - we are going to treat the upper GI pain with ppis if we want and ignore the mucous she is passing as long as she doesn't have an increase in bowel pain or blood, and as long as her appetite remains good. We are not going to schedule a scope of any kind at this time. This plan took about 20 minutes to develop, with both me and my daughter asking questions. We also learned about the GI's wedding and honeymoon plans, but that was in the context of her telling us where she would be this summer in case my daughter needed her. This is exactly the kind of relationship you should have with your GI.
Posted 6/14/2012 9:57 PM (GMT 0)
Kazbern, how did I sound that submissive? On the contrary, for my doctors, I'm a well-read nagging patient whom they do not like. May be it's out of helplessness that I might sound like that. As long as I don't have naked-eye ulcers or a confirmed diagnosis, I'm played with. I know that I have to taper Entocort as I exceeded the six months the manufacturer has determined. As for proctitis, I don't think there are other effective treatments other than pentasa and steroid enemas. I'll try to cope with my disease and if things become worse, then will I think of GI.
Posted 6/15/2012 1:06 AM (GMT 0)
You're right, it's hard to tell what's what from forum posts only.

When you say Pentasa is a treatment for proctitis, you mean Pentasa enemas, right?

And when you say that the new GI wants you only on Pentasa and anti-spasmodics, what kind of Pentasa is that?
Posted 6/15/2012 11:43 AM (GMT 0)
I meant pentasa enema for proctitis. He meant pentasa tablets for the colitis. I became severly constipated, have severe reflux and headache coz of the antispasmodics. I want D back; it makes me digest food instead its being stuck in my stomach. So, I decided to stop his meds and resume my previous meds. I'll taper Entocort and take Nexium 80, the anti ulcer drug, pentasa tablets and pentasa enema in addition to the multivitamins and Ensure. I feel that this is at the time being more than enough for me.
Posted 6/15/2012 2:59 PM (GMT 0)
Sounds good. I have always refused antispasmodics for the exact reasons you don't like them. Make sure when you're using so much Nexium to take a calcium supplement.
Posted 6/15/2012 3:18 PM (GMT 0)
Thank you very much for this invaluable piece of advice. No doctor ever told me this. The problem with calcium supplements is that they are hard on my stomach. They cannot be digested easily.
Posted 6/15/2012 4:13 PM (GMT 0)
I agree - I don't take them much (have you tried the chocolate chewy ones?). I use a calcium enriched orange juice every morning, and use lactose free milk with added calcium for my breakfast too. One good thing about taking calcium for you is that it might make your diarrhea slightly less as it can make stool harder.
Posted 6/15/2012 4:23 PM (GMT 0)
Really, I never knew this about calcium. I'll try food enriched with calcium. Thank you very much.
Posted 6/15/2012 5:12 PM (GMT 0)
Cautions on long-term use of ppis
Posted 6/15/2012 5:28 PM (GMT 0)
Hi Minnie, I hope you don't mind me jumping in here. I'm rather shocked and offended that the GI said that to you. Seriously? Do what I say or find other doctor? Personally, I'd be finding another doctor.

In any case, I hope you get some real answers and relief soon. Take care.
Posted 6/15/2012 5:45 PM (GMT 0)
Thank you very much Lamb 61 for the nice wishes. Yes, that's what he said and I decided not to see him again.
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