Visit with GI

[Gloria]

It had been 20 months since I'd seen my GI. My last visit was spent with us disagreeing over the need for another colonoscopy. He never brought up a colonoscopy on this visit.

I had to fill out a form which had a chart of symptoms/diagnoses to select. IBS, Crohn's and Celiac were on the chart, but no MC. I drew a box and wrote Microscopic Colitis in it and complained to the receptionist that MC was more common than Crohn's. Why wasn't it listed? Maddening.

My GI seemed to think that I was doing very well and should continue on my low (3mg daily) dose of budesonide. I told him that my MC is under control for the most part; sometimes I have D, depending on whether I tested a food, but most days my 1-2 trip(s) to the bathroom are done by the morning. I can certainly live with that, but I'm getting weary of my limited diet. I don't think he realized how little variety I eat to keep my symptoms at bay.

He and my PCP both seem to look at two primary things: how much I weigh (104), and how much prescription medication I take. By those barometers, I'm doing great since budesonide is the only prescription I take.

I asked him about the safety of being on Entocort for 6 years. I was his second patient with MC; now he has many. I got the impression that I am his test specimen for how people can do on a long-term maintenance dosage of Entocort. He said since I haven't had any side effects and am healthy, there is no reason to discontinue it. His decision would be different if I had problems or visible signs of taking a steroid, like a puffy face, etc. He wasn't at all interested in how I was managing with diet.

I asked about Pentasa. He said it was for the small intestine and MC is in the large colon, so he wouldn't recommend it. I then asked about Imuran and he said that was "big guns" for the amount of symptoms I exhibit.

No advice from him. I didn't expect any. He surely knows, as I do, that I'm in charge of resolving my MC. All he's there for is to write the script. Sometimes I wish new members would realize that. Some of them place a lot of stock in their doctors, but rare is the doctor who knows how to counsel a patient on treating MC.

Gloria

[tex]

He never brought up a colonoscopy on this visit.

I had to fill out a form which had a chart of symptoms/diagnoses to select. IBS, Crohn's and Celiac were on the chart, but no MC.

He said it was for the small intestine and MC is in the large colon,

How does he know that MC is restricted to the colon? GI specialists never look for MC in the small intestine, so obviously they will never be able to find it in the small intestine (unless they wake up and start looking for it there). And that's the only reason why they mistakenly think that it doesn't exist in the small intestine. Shame on them.

All he's there for is to write the script. Sometimes I wish new members would realize that. Some of them place a lot of stock in their doctors, but rare is the doctor who knows how to counsel a patient on treating MC.

All in all, it sounds as though you both accomplished your primary goals with the appointment.

Tex

[JFR]

No advice from him. I didn't expect any. He surely knows, as I do, that I'm in charge of resolving my MC. All he's there for is to write the script. Sometimes I wish new members would realize that. Some of them place a lot of stock in their doctors, but rare is the doctor who knows how to counsel a patient on treating MC.

Gloria

Gloria,
I've been thinking about the same thing lately, how people join the forum still believing that their doctors will have the answer for them when in fact the answers can be found here and not from their doctor. I am lucky not to need a prescription med so I no longer seek out help from a doctor. Saves me from all those frustrating and exasperating visits. Dietary change is the key, with or without medication.

Jean

[lorimoose]

Hi Gloria,

It is so frustrating that at no point in this journey, that we can not ever feel " taken care of", unless we do it ourselves, and for each other. My GI is a very nice person, but told me that now that I finished the entocort, I am cured and what is left is a bit of IBS. He did leave the door open to the possibility that some people have gluten sensitivity, and I may need to take medicine from time to time. Things did fall apart after entocort...which was very hard for me to take. I am now on Lialda, with a strict diet, and 2 weeks so far have been good. Day by day.

The beauty in all this, is our strength, and our community, which I am grateful for every day.

Lori

[JFR]

My GI is a very nice person, but told me that now that I finished the entocort, I am cured and what is left is a bit of IBS.

Lori

This statement is nonsense. Your doctor might deliver this nonsense in a pleasant manner, which is certainly preferable to delivering it in an obnoxious manner, but the fact remains that what was said makes no sense. I am glad that you have the sense to dismiss his nonsense.

Jean

[ldubois7]

Gloria,

My GI is a nice guy, but he sits and listens to me talk, typing on his laptop, orders some blood work, palpitates my belly, and says he will see me in 6 months. There is no exchange of information, or sharing of ideas and strategies! It would be great to have someone that really took an interest in this disease that has drastically changed my life for the last year, but I won't find it in the medical community at this time!

[DebE13]

Haha, I have my yearly give my money away visit with my GIs nurse on Monday. It's frustrating. The only reason I go is to get my script for entocort renewed since I can't quite shake it yet. Is a bone density scan something I should ask for since I'm long-term entocort? I was thinking about asking for labs to check vitamin levels too.

[tex]

Haha, I have my yearly give my money away visit with my GIs nurse on Monday.

That's a pretty accurate description, once you have a diagnosis.

Is a bone density scan something I should ask for since I'm long-term entocort?

Yes, if you've never had a bone density scan previously, it would be a very good idea to have one done, so that you will have some baseline data before any changes occur.

Are you aware that if this is the first time that you have taken Entocort (IOW, you have never stopped and restarted taking it) research shows that there should be no more than minimal changes in bone density due to the budesonide? Once you stop taking it and restart using it again though, you lose that "tolerance" or "immunity", or whatever you choose to call it, and after that it has the potential to cause a greater degree of bone density loss (depending on dosage and your sensitivity to it). Here's the reference on that. The full article is available if anyone is interested enough to want to read it.

Bone mineral density in relation to efficacy and side effects of budesonide and prednisolone in Crohn’s disease

Tex

[Gloria]

Deb,

I had osteoporosis before I had MC, so I keep tabs on my DEXA scores. It's probably a good idea to have a base-line scan so you can see if you need to correct the bone loss with exercise and/or medication. I presently walk and take Drs. Best Strontium. You're not taking a high dosage of Entocort, so it may not be an issue for you.

I'm in the process of entering my foods and recipes into the USDA website https://www.supertracker.usda.gov/default.aspx so I can see which nutrients I'm lacking in my diet. The nutrient database is very extensive, though the program isn't always intuitive. Right now it looks like my vitamin E is OK, but vitamin K is not. Vitamin E is a blood thinner, and vitamin K is a coagulator. I will be asking my PCP (who I trust more than my GI) to test my vitamin K level, if possible, and plan on asking him if he thinks it's a problem. He always monitors my potassium, another nutrient where I'm borderline. These are two nutrients which aren't included in sufficient quantity in multivitamins.

I think it's helpful to know which nutrients we may be lacking so that we can ask for the appropriate tests if they exist.

Gloria

[Gabes-Apg]

Gloria
I am a bit surprised that he classes your ongoing symptoms not worthy of Imuran?

acknowledging that long term use of either Imuran or Endocort have their long term risks, given your osteoporosis dx prior to mc...

then again, most specialists are just following the big pharma recommendations, medication to fix the symptom approach
I bet you are chuffed that he didn't mention colonscopy...

[DJ]

It would be great if our GI doctors would read these comments. My doc was able to make a diagnosis in a reasonable amount of time. The down side is that I feel that I spend much of my visit time soothing her ego rather than focusing on my health. I think she owes me several co-pays

[CathyMe.]

No advice from him. I didn't expect any. He surely knows, as I do, that I'm in charge of resolving my MC. All he's there for is to write the script. Sometimes I wish new members would realize that. Some of them place a lot of stock in their doctors, but rare is the doctor who knows how to counsel a patient on treating MC.

Gloria

Gloria,
I've been thinking about the same thing lately, how people join the forum still believing that their doctors will have the answer for them when in fact the answers can be found here and not from their doctor. I am lucky not to need a prescription med so I no longer seek out help from a doctor. Saves me from all those frustrating and exasperating visits. Dietary change is the key, with or without medication.

Jean

I am in the same boat as Jean. I haven't seen my GI for 8 or 9 months because I'm off all meds and symptom free. My GI's parting comment though was, "I'm sure you'll be back"...really nice, huh??? Part of my motivation to keep my diet clean is that I won't have to see her again!!!!

[tex]

My GI's parting comment though was, "I'm sure you'll be back"

That's probably a candid and accurate assessment of her success rate at treating MC patients, unfortunately.

Tex

[CathyMe.]

My GI's parting comment though was, "I'm sure you'll be back"

That's probably a candid and accurate assessment of her success rate at treating MC patients, unfortunately.

Tex

I'm sure you're right Tex!!