finally had my infamous GI appt...what a disappointment!

[katbox]

Hi all, I had my "big" GI expert appt today. I was so looking forward to finally being able to talk to someone about my mc and especially my twisted colon. well, what a disappointment. he made me wait for 45 minutes. then came in and rushed me thru a few questions, listened to my breathing. I told him about some weird swollen foot and pain under my toes, and on top of one foot. Also my blood pressure was high. (my blood pressure has always been good). I asked him if the Entocort could cause this, he said "you're probably just nervous" I wasn't. He also said don't worry about a twisted colon, it's no big deal. I just felt like he didn't care about me or what I was concerned with. he ordered the blood test for calein (sp) intolerant, but didn't have a good answer when I asked "is the test close to 100%?" he said that well, if you haven't been on a gf diet and it comes out positive, then it's positive. if it comes out negative, you're probably ok.
No really? wow, sorry, but I just felt like he's there to collect a hefty paycheck and doesn't even care about people. then he wanted to start me on weaning off the entocort, so he faxed over a new prescription, the drug store called me a little while later, and said that the fax was blank. they tried to call him, but the office was closed already. Luckily, I still have a couple days left of original rx.

gee, I wonder what was really on his mind. I also had to pay a $25 co-payment. Ugh!

anyway, thanks for letting me vent. I am sooooo grateful for you all. I really don't know what I would do without you guys.

that dr. was full of you know what! well you guys take care, and wish me luck with my Entocort. oh wait, that's right, I have to call him again and tell him to actually send the information!!!!

Me and my twisted, inflammed, tired, sore colon are going to bed soon, and maybe things will look brighter in the AM. It's gotten so warm here. it was 40 degrees today! last week, it was well below zero! see things can change and get better. that's what I'm hoping for.

oh, I tried to talk with this jacka** about brain fog, he didn't even address it as a real problem at all. actually ignored my inquiry about it. what a shister (sp). I won't be going back to that dr. anytime soon.

Love, kat

[kate_ce1995]

Kat, I'm so sorry. I recently had an equally dissappointing GI appointment in which he got paid $140 ($100 or it from my insurance, $40 copay from me) to tell me that urgent liquid D 8 to 10 times a day was a nuisance and that I wasn't sick.

I'm really contemplating writing candid letters to my congressmen to talk about healthcare reform...not from an insurance perspective, but about training drs. in something other than drugs that cost lots of money so when you have a condition like us where diet can be a big factor, we can get help rather than going it alone (thank god we have this wonderful board!). Obviously there are no "quick" fixes to this one, but increase funding for nutritional/dietary research and training of existing doctors would be a good place to start.

I'm sure it will fall on deaf ears, but it might make me feel better.
Katy

[katbox]

I hear you sister! Why do these doctors get into the field if they don't want to LISTEN to their patients and absolutely investigate all things relating to what triggers this D and how FOOD may be a factor?
They are supposed to actually care about their patients and how to make them not only feel better with meds, etc., but to help get them into remission.

I was stunned yesterday with this particular dr.'s lack of compassion. Telling me my twisted colon was no big deal made me feel like I'm an idiot for being scared and concerned since I was told this information. I have been waiting for this "expert" GI dr. to explain what could happen, or if it will be something that is part of the problem.

well, katy thanks for sharing your experience. I know I'm not alone...not any more!

let me know if you write your congressmen, I may follow suit.

take care

[tex]

Hi Kat,

I'm sorry to hear that your GI doc is such a loser. I believe your assessment of him is right on target. Apparently his office staff works on the same level of professionalism as he does, (he probably specially trained them to be a few degrees short of competent). I'll bet that someone in his office faxed the page that the prescription was written on, upside down. Duh!

Yes, Entocort can cause hypertension. It's not a common side effect, but it is definitely a problem for some users, (that's why it has the warning about not taking it, if you already have high blood pressure).

It's hard to say if the foot issue is connected or not , but peripheral neuropathy is definitely possible with gluten-sensitive enteropathy. Before my gut completely healed, (IOW, even after I was on the diet for about a year or so), I sometimes had weird pain sensations on the bottom of one or occasionally both feet. For example, I could be standing on a cool, smooth surface, (such as a bathtub, or tile floor), and the bottom of my foot, (or feet), would feel as if I were standing on a burning hot surface. It would feel so hot that it would be painful. I don't recall it ever happening when I was wearing shoes, though. MC can cause weird things to happen, sometimes, and, of course, so can most meds.

FYI, a lot of us have found that once a GI doc writes an initial prescription for Entocort, we have better luck getting a prescription from our GP, if we need to continue using it, and the GI doc balks at renewing it.

Tex

[katbox]

thanks Tex, I just called the pharmacy and ordered the 2nd run of entocort from my initial dr. script.

If my foot, and under toes continue to cause me pain, I will go to my gp and have it looked at.

I was just hoping that the gi would take more of an interest in my strange symptoms. like katy saying that her gi said it's more of a nuisance to over 10 times a day. give me a break!

today I'm on entocort 3 weeks. it is better but am still having multiples daily. it's better than when I was not on any meds initially, for sure.

I'm still concerned with the twisted colon and will find someone in the medical profession to give me answers.

I want to heal a bit more. Like I've said so many times before, I am grateful for this board and all the highly intelligent, charming potty people here! You are a godsend. thanks!

[tex]

Hi Kat,

Well, if most GI docs don't even realize that food intolerances trigger MC flares, then they probably are even less likely to recognize that MC can affect many parts of the body, other than the GI tract, (including the brain).

To be honest, I'm a bit concerned about the twisted colon issue, also. Your GI doc is really letting you down on that one, by not discussing it with you. Do you even know which part of the colon is affected? I'm guessing the Sigmoid section, (the descending colon), since if the ascending colon is affected, that could imply a much more serious situation.

Here are a couple of articles about the condition, but note that these are not published by medical professionals - they are written by people selling colon cleanse products.

http://www.colon-cleanse-constipation.c ... colon.html

http://ezinearticles.com/?Twisted-Colon&id=109349

There's a possibility that it may never become a serious problem, but the risk is that if the blood flow is compromised, the situation can become serious very quickly. If there's no pain, and no obstruction issues, then it may be "no big deal", as your GI doc said, but at the very least, if I were in your shoes, I would request a copy of the endoscopy report, (colonoscopy report), for that procedure. Quite often, those reports can be quite surprising, (in contrast to what the doctor tells the patient in the followup). I'm speaking from experience, on that. You can either get the report from the records department of the hospital, or from the doctor.

If you've never done that before, you will need to know the date of the procedure, when you request the report from the records department. Copies of those reports are usually free to patients requesting reports of their own history, if you pick it up in person. If they have to mail it, there will usually be a charge for it. Attorneys and other institutions usually have to pay for a copy. My experience has been that most doctors offices will furnish a copy without charge, but that may vary by doctor, and institution. I've never asked a doctor for a copy of a procedure that he or she did, (not wishing to burn any bridges, or otherwise alienate them, in case I need their assistance at some point in the future), so I usually get copies of stuff like lab test results from the doctor, but I get copies of endoscopy or surgical reports from the records department.

As always, you're most welcome.

Tex

[barbaranoela]

Hi Kat--so sorry about your xperience----

I am with U on that loopy colon---appears that upon my Colonoscopy--my GI described almost the same issues----and that be I also have a *little LOOPY* descending colon--but nothing to worry about-----and I trust him---

And I understand about Doctors taking the time to listen and HEAR what U are saying to them---also that they FACE U instead of U looking at their BACK!!!

Thats why I luve my GI---GP---and Thyroid Docs-----they take time--and dont hurry U out the door--

Hope your issues get better and take a big *breath* and relax---

OK????
luve Barbara

[katbox]

thanks Tex for the info. I have a MyChart with all my info about tests, procedures, appts, history, etc. where they're done, who conducted them, etc.

In saying that, there are no notes about what the colonoscoper (sp) may have written about my twisted colon. however, when the nurse called me with the results, I had asked her about this and she did say that he made a note of it on my records, which wouldn't necessarily show up in MyChart. go figure. I will look at the results again and see where which part of my colon was affected. If I can't figure it out, I may take your advise and get the records from the hospital where I had it done.

hopefully, at the very least I would like to see how he worded his comments at the time. I know it may not be a very big deal in the grand scheme of things, but it could cause me trouble down the road.

I do experience some terrible stomach cramps, but it's not every day, so like I said I need to heal a bit more.

later!

[katbox]

Thanks Barbara,

I think you are very lucky to have the medical people you describe. good for you!

My gp is very good, and she will not be happy to hear about my experience with the gi. she ordered the referral, but thought I would be seeing someone else there. but their policy is to have a gi doctor see you the first time, and then if there's any issues going forward, you go to see Nurse Practioners.

I will try to relax, since everyone is really telling me that I need to heal a bit more and see if anything new comes up later.

I'm in the middle of doing our taxes, so don't really know how relaxed I'll truly get! but I'll try.

thanks again. take care!

[Courtney]

Hi Kat,

Sorry you're having such issues with your GI. FWIW, when I was on Entocort, one foot swelled for a couple of days, and I noticed some swelling around my ankles, too. Hope you're feeling better.

Love,

Courtney

[katbox]

thanks courtney,

glad I'm not alone in my thinking the pain and swelling may be meds related!

take care and have a good weekend.

love,

[MaggieRedwings]

Morning Kat,

I am so sorry that after such a long wait you scored such a loser. You are not alone. It seems that most of us have had GI's that just don't want to listen or take the time. I thought mine was great but as time went by the relationship went down hill and now I am just going it on my own. They make you feel like you are in a people mill and not a real doc's office. Glad to hear you have a good GP. Makes up for something just a bit.

Maggie