Getting nowhere with my GI guy!

smg2001 · Post by **smg2001** » Fri Apr 29, 2011 5:52 pm

So I went to see my GI guy today and got nowhere. I have VRE again and he is reluctant to do a colonoscopy due to the fact that he didn't want to spread VRE anywhere else or take the risk of my wound coming back open (I had a hysterectomy for endometriosis-the source of the VRE). I can understand that...But he didn't listen to any thing I told him! He said from his point of view there was nothing wrong with me GI wise and didn't see any reason I couldn't return to work, thus refusing to extend my short term disability. I totally went off on him. Thats not like me to do that, but God it felt good! How can anyone come to the conclusion that there is nothing wrong with my digestive tract when I have frequent diarrhea, nausea, wide spread abdominal pain, and a history of lymphocytic colitis x10 years. I told him "Well clearly you would know. I'm just the patient, I don't know anything about whats going on with MY body." Then he tried to say based on my previous CT scan, it didn't show colitis. So that begs the question, would a CT scan be a definitive diagnosis for colitis? I'm highly sceptical and I told him so (I may not be a doctor, but I am a nurse, well at least I was). He's reluctant to try anything other than the prednisone since I responded well to it in the past. I would have preferred to try a different med if possible, esp. since I've had delayed healing, immune and hematological problems.

Soooo... I asked to be referred to the Cleveland Clinic and I'm having a CT scan tuesday. I'm getting dicked around and sick of it. I'm currently being treated for the VRE, but unfortunately ZYvox interacts with my usual pain meds and antidepressant. I've been prescribed 4 percocets a day to get me by until I'm done with the antibiotic, but it's just not enough. I'm losing sleep, can't think clearly, let alone function like a normal person, and I feel like I'm losing my mind. The idea of possibly losing my job and health insurance is just stressing me out more. I see my pain mgmt Dr. on monday and I hope and pray he will at least continue my disability and try something else to help with the abd. pain and fibromyalgia (my epidurals got denied by the insurance company too.)

What other options do I have? My GI Dr. and internal med docs are idiots and I'm running out of time, patience and money. The past 2 years have been hell and I can't take it anymore. This isn't fair. I'm sure there are others on this forum that have had this problem and I sure could use some advice.

Thanks guys,
Sarah[/code]

Pat · Post by **Pat** » Fri Apr 29, 2011 6:16 pm

Sarah,

If you have eliminated Gluten, Dairy, and soy as shown on left over there and are still having symptoms maybe you might want to check out www.nowleap.com and have the MRT test that so many of us have had. There is a new section (scroll down on the main page and you will find it) where we have discussed our tests. Sorry you are having such a tough time - been there.

Pat

natythingycolbery · Post by **natythingycolbery** » Fri Apr 29, 2011 6:42 pm

Just out of intrest what Antidepressents are you on? As they could be contributing to symptoms.

smg2001 · Post by **smg2001** » Fri Apr 29, 2011 9:45 pm

I will have to look into MRT testing. I was really banking on the prednisone. I hope its not too costly. Got lots of bills I'm behind on and oddly enough my cat is having bowel issues and I will have to cough up the cash up front to get him worked up. I wonder if there's a link? Any who... I'm on cymbalta for depression/chronic pain. I haven't noticed it to be linked to the abdominal pain and it seems to help the nerve pain. I am going back on the soft diet which helped the last time I had problems. I'm not thrilled about it since I won't have much of a selection and I will likely lose some of the weight I put back on.

Post by **tex** » Fri Apr 29, 2011 9:51 pm

Hi Sarah,

Since January 1, 2009, a diagnosis of MC is sufficient for qualification for permanent disability. The point is, since the law has been revised, you no longer have to prove disability, (which was required previously) - you only have to have a diagnosis of microscopic colitis. Since IBDs are forever, (there are no known cures), it shouldn't matter that your diagnosis was 10 years ago. It doesn't matter whether your symptoms are under control or not - you qualify automatically. A lot of people still don't realize this, so you might have to locate an attorney who specializes in that area, in order to make sure that you win your case. Please read the following three threads. I think you will find them to be informative.

http://www.perskyfarms.com/phpBB2/viewt ... sabilities

http://www.perskyfarms.com/phpBB2/viewt ... sabilities

http://www.perskyfarms.com/phpBB2/viewt ... sabilities

Regarding your GI doc. Is he for real? Any doctor, (certainly any GI specialist), should know that a CT scan is worthless for diagnosing MC. I get the impression that he doesn't have the foggiest idea what MC actually is. He doesn't deserve to have a license to practice in the state of Ohio. I wonder if he might have found his GI certification in a box of Cracker Jacks.

If you're going to rely on the services of a GI specialist, you desperately need to find one that actually understands MC - your current specialist clearly does not. Also, he shouldn't even be suggesting prednisone, let alone prescribing it, when you are already having problems healing. Entocort might be a reasonable option, but not prednisone. Prednisone is not a valid option for long-term use, anyway, whereas Entocort is.

Many/most antidepressants are dangerous to take with Zyvox, so I hope that cymbalta is safe. Antidepressants such as amitriptyline, (Elavil, Etrafon), citalopram, (Celexa), doxepin, (Sinequan), escitalopram, (Lexapro), fluoxetine, (Prozac, Sarafem, Symbyax), fluvoxamine, (Luvox), imipramine, (Janimine, Tofranil), paroxetine (Paxil), or sertraline, (Zoloft), and possibly others, should never be taken concurrently with Zyvox.

Also, as Naty can testify from personal experience, some of these drugs can trigger MC. I hope that you can get that vancomycin-resistant infection under control, so that you can get on with your life.

Tex

Zizzle · Post by **Zizzle** » Fri Apr 29, 2011 11:59 pm

I agree with Tex. The CT scan will be absolutely worthless, not to mention the massive dose of radiation you will receive. Your lifetime risk of cancer jumps the more frequently you have them, and you mentioned having another one recently.

Finding a new GI doc sounds like the most important step to take right now.

smg2001 · Post by **smg2001** » Sat Apr 30, 2011 9:48 am

LMAO, thanks Tex, I also wondered if my doc found his license at the bottom of a cracker jack box. I'm really hoping to get into Cleveland Clinic soon, but knowing my luck it will take a month or two.

I'm also concerned about the CT scan, considering I've had about 5 or 6 in the past year or two, and I also have a history of cervical cancer and have had a colon polyp removed. My doctor not only wanted to do the CT scan to diagnose me with colitis, but also because I had free air in my abd. with the last scan (when my wound opened up). I suppose it would be good for finding any abcesses or anything else that doesn't belong in there, but may indeed be absolutely unnecessary considering I'm on antibiotics to treat the infection.

Since I've started the Zyvox, I had to stop taking Cymbalta, Buspar, flexaril, and tramadol. I'm on percocet now to help with the pain (I apologize for any spelling errors and ramblings). I will definitly check out those links you guys posted as soon as my pain medicine wears off and I can think a little more clearly, lol.

natythingycolbery · Post by **natythingycolbery** » Sat Apr 30, 2011 1:28 pm

I've just looked up your Anti-depressent and found this article...

http://www.ccjm.org/content/75/9/677.full

I noticed this paragraph....

Our patient’s medication list includes duloxetine, a serotonin-norepinephrine reuptake inhibitor related to drugs that have been associated with the development of microscopic colitis. We tapered the duloxetine, and her symptoms improved by 50%. Her symptoms were eventually controlled after an 8-week course of oral budesonide 9 mg and ongoing intermittent use of loperamide (Imodium).

Which does make me ponder if it is your Anti-depressent that is causing your symptoms?

As Tex mentioned from experience I myself developed this condition from a Anti-depressent (mine was a SRRI though) and about a week after stopping my symptoms just about dissapeared.

Post by **tex** » Sat Apr 30, 2011 1:40 pm

Naty,

Good article.

Thanks,
Tex

JLH · Post by **JLH** » Sat Apr 30, 2011 1:50 pm

I love "middle age woman in her 6th decade".

To quote a song, "When will they ever learn.......?"

smg2001 · Post by **smg2001** » Sat Apr 30, 2011 2:35 pm

I was on Cymbalta 5 years ago and didn't have the abd. pain and GI issues that I have now. I have been on and off SSRI's over the past 12 years and proton pump inhibitors too. I suppose it is possible that these medications have been triggers. Seeing as how I'm off these meds throughout the course of treatment with the Zyvox, I will have to mention this to my psych doc when I see him this week. What antidepressants have worked for you guys?

Also, I will need to go back on some type of antacid whenever I finish my antibiotics. Has alka seltzer helped for anybody? That would be awesome if I could just take that considering it helps with headaches too. Also, has anyone had luck with anti-inflammatories? I can't take ibuprofen, aleve or excedrin without paying for it. And...one more thing...lol...Can anyone direct me to websites with recipes for soft/pureed diets? Thanks guys!

Gabes-Apg · Post by **Gabes-Apg** » Sat Apr 30, 2011 3:09 pm

Be mindful, if you are having MC symptoms, and fast motility, then any medication you take you may not be absorbing the full dose which then could have a flow on effect of heightened anxiety and pain etc.

one of the antidepressants that is used for IBD patients is amitriptyline , as one of the side effects is constipation and this can be a welcome side effect for IBD patients.

a bit like MC there is no sure one med that will work for you, it may be a bit of trial and error.

natythingycolbery · Post by **natythingycolbery** » Sat Apr 30, 2011 3:34 pm

Sarah, I personally have been told to avoid all forms of anti-inflamatory meds as they can flare MC. a

Also in terms of Anti-Depressents, I was told to avoid all types that have serotonin in them. However I was told that Tricyclic anti-depressents are ok to take.

However as Gabes has said, different meds react differently to different people.

Gabes-Apg · Post by **Gabes-Apg** » Sat Apr 30, 2011 4:22 pm

the anti-inflammatory prescribed by my GI - the main side effect is diarrhea....... go figure???
i stopped it because it was giving awful headaches.

ant · Post by **ant** » Mon May 02, 2011 6:06 am

Sarah,

Sending you good wishes and vibes from Hong Kong))))))))))))))))))))

Best ant