GI Visit & Update

nerdhume · Post by **nerdhume** » Thu Jun 12, 2014 2:12 pm

Saw my GI today. Gave him a copy of the enterolab results. Told him I have been fine since stopping the Uceris on the 1st of June.
He said there are more tests we could do, we haven't totally ruled out celiac, but if I am feeling better without gluten, dairy, soy and eggs then I should stick with that. He said that is the final answer, how I feel. It doesn't really matter what label whether celiac or gluten intolerant.
He also said I should consider myself in remission and come back in 6 months at which time he will schedule another colonoscopy to check for inflammation and damage. I asked wouldn't I know if there was more inflammation and he said not necessarily.
He said if I have a relapse to call him and he will advise me whether I need to go back on the Uceris or not.
All in all great news.

Post by **tex** » Thu Jun 12, 2014 2:48 pm

All in all, not a bad GI visit. Your doc is definitely learning (and he wants to use you to learn more). However, in 6 months (or a year, for that matter), I can virtually guarantee that you will still show the inflammation markers of the disease on colonic biopsies. The intestines simply do not heal that quickly from the damage caused by MC.

It takes the average adult celiac at least 3 to 5 years for their intestinal mucosal histology to return to normal again, and some people never heal completely. Pediatric celiacs heal faster — usually within 1 to 3 years. There is no reason to believe that MC patients will heal any faster than celiacs, so any followup colonoscopy that's designed to verify healing will be a disappointing flop (and a waste of time and money — to say nothing of the health risks of going through such an intrusive procedure for no good reason) if it's attempted within a year or 2 of the initial diagnosis and treatment. 5 to 10 years out, there's a good chance that the biopsies taken during a colonoscopy will show no signs of the markers of MC.

nerdhume wrote:I asked wouldn't I know if there was more inflammation and he said not necessarily.

That's a misleading claim on his part. He will be able to use the pathology results to prove that he was right in saying that you still have inflammation even though you will not be aware of it (simply because as I pointed out above, it takes years for the intestines to heal). IOW the residual inflammation markers are simply a sign of the slow healing that occurs with MC. The point is that those are residual markers, not signs of new inflammation.

Tex

Leah · Post by **Leah** » Thu Jun 12, 2014 5:58 pm

It's great that you are feeling so well, and of course it's totally up to you, but having to go throughout the clean out could cause a flare. Like Tex said, it really is too soon to check for anything. I'm not scheduled for another scope until 10 years after my last one. I'm good with that!

Leah

Sheila · Post by **Sheila** » Thu Jun 12, 2014 7:44 pm

Wonderful news. You are very fortunate to have a doctor who actually listens to you. I doubt very much I will have another colonoscopy. I was so sick after the last one, I told my doctor he would have to catch me first if he wanted to do another one.

You're doing really well, congratulations.

Sheila W

nerdhume · Post by **nerdhume** » Fri Jun 13, 2014 2:50 am

I had the same thoughts, that 6 months was too soon for another colonoscopy.
I know I am new to this, but I think I would know if the inflammation gets worse, and this is a chronic illness which will never be totally healed.

Maybe because of UC? That raises my risk of colon cancer, but again I think I would feel any ulceration and know if there was bleeding.

A friend went with me to the GI, in another city much larger than ours about 30 miles away. After the apt we went shopping and out to lunch had a grilled chicken breast, rice and green beans. Still felt great when I got home and DH and granddaughter (19) wanted to go out for Mexican food. So we went out again, had grilled chicken breast, beans and avocado slices and of course margarita.

This morning I am a little achy and have a headache (no I didn't drink enough for that ). I am assuming a little cross contamination and just thankful for the great day I had.

Also thankful for the support and encouragement here, thanks.

CathyMe. · Post by **CathyMe.** » Fri Jun 13, 2014 4:36 am

What great news and I'm so happy you were able to enjoy a great day with your friends and family!

coryhub · Post by **coryhub** » Fri Jun 13, 2014 3:38 pm

Hi Nerdhume,

My GI concurs with Tex in that he could see no use in me having another colonoscopy until 5 or 6 years out. I'm glad you are feeling better.

Cory

Gabes-Apg · Post by **Gabes-Apg** » Fri Jun 13, 2014 5:21 pm

I agree with the others, unless there is pain or bleeding or chronic symptoms that are constant for few weeks, I wouldn't do a colonscopy.

you have got your body into a good mode for good quality healing... colonscopy clean out could undo most of that.

having the day with friends and family, and eating out at a trusted restaurant is an awesome way to celebrate.
the headache/aches were probably the after effects of a bit of adrenalin or nerves in the lead up to the appointment.

may your wellness continue to flourish!

UkuleleLady · Post by **UkuleleLady** » Fri Jun 13, 2014 10:19 pm

Hi Nerdhume,

I'm glad you're doing so well. I agree with Tex that as far as these GI visits go, yours sounds not so bad. I usually leave furious or in tears.

Does the UC community have a good forum like ours (not that it could be as awesome as this forum!) Just wondering if there might be some sage advice on frequency of colonoscopies for UC patients.

Best wishes for further progress.
Nancy

Heady · Post by **Heady** » Sat Jun 14, 2014 12:29 am

That's positive news. Good for you. Hope all stays on track and the future remains symptom free!

nerdhume · Post by **nerdhume** » Sat Jun 14, 2014 3:04 am

Thanks to everyone for all the encouragement.
The IBD groups and Chrohns & Colitis groups focus on Chrohns and most of the advice doesn't even apply to me and my wish to control this with diet and supplements.
I still follow a couple of UC groups on facebook, I have never been part of a group as awesome as this one. The UC group is NOT as awesome. The majority are not willing to even consider diet. They discuss meds and surgery, several advise that as a cure. There is lots of spamming, too. I will ask their opinion on the colonoscopy.

nerdhume · Post by **nerdhume** » Sat Jun 14, 2014 5:24 am

After researching the internet I have discovered that an annual colonoscopy is recommended for UC patients. This is mostly because my colon cancer risk is elevated by the UC.
My last one was Feb 2014 so my apt 6 months from now will be in Dec so that will be about annual.
This is from the Tricare website:

•Individuals diagnosed with Inflammatory Bowel Disease (IBD), Chronic Ulcerative Colitis (CUC), or Crohn's disease. For these individuals, cancer risk begins to be significant eight years after the onset of pancolitis or 10 to 12 years after the onset of left-sided colitis. For individuals meeting these risk parameters, optical colonoscopy should be performed every one to two years with biopsies for dysplasia.

From previous experience I can tell you if they are willing to pay for it then it has been well documented. In other words the cost benefit ratio has been determined. (IOW it's cheaper to pay for the colonoscopy each year than to pay for colon cancer later).
Also from my symptoms I believe I fit the average 9 years to dx.
Guess I will have to risk a flare at least annually

Post by **tex** » Sat Jun 14, 2014 8:07 am

Nerdhume,

Please don't take this as a denial of the need for frequent colonoscopies for UC and Crohn's patients (because it's always better to err on the safe side), but IMO the reason why the cancer risk is elevated for most Crohn's/colitis patients is because they do not bother to avoid their food sensitivities (especially gluten). By controlling our inflammation at the source (IOW, by preventing it), we eliminate that increased cancer risk, in the long run.

This phenomenon can be clearly seen in celiac patients, for example, and the outcome has been verified by published research studies. Celiac disease is also an IBD (even though most doctors don't think of it that way, and some of them may not even be aware of that fact) For celiac patients, those who promptly adopt and strictly adhere to a GF diet totally eliminate any increased risk of cancer after a few years of healing. By contrast, celiac patients who do not change their diet continue with an elevated risk of cancer for as long as they choose to ignore their diet.

There are never any guarantees of course, but I feel confident that some day (in the distant future) researchers will verify that the same benefit is gained by any patient with any IBD who avoids all foods (and/or drugs) that cause an inflammatory response. It doesn't take a rocket scientist to see the connection (though it seems to be invisible to most doctors

)

I'll go so far as to stick my neck out and say that your MC diagnosis may have been a blessing in disguise, because it led you to the diet changes that will reduce your cancer risk down to the bare minimum (probably below the risk carried by the average member of the general population, because the average citizen continues to eat gluten, which increases their cancer risk).

Also, if you are genetically prone to the development of colonic polyps (which arguably are the sites for the development of most colon cancer), the development of polyps can be minimized/eliminated by maintaining an adequately high serum vitamin D3 level. IOW, an enhanced 25(OH)D level can prevent the future risk of colon cancer by preventing the creation/development of polyps. As you implied by choosing "diet and supplements" as your treatment of choice, they are the keys to health.

Tex

nerdhume · Post by **nerdhume** » Sat Jun 14, 2014 8:40 am

Thanks for the explanation Tex. You are always able to 'cut to the chase' and it does make me feel better that I am doing all I can to heal and reduce cancer risks.
I feel blessed to have this group, a GI and a PCP that will at least acknowledge dietary issues. My family and friends are supportive, but as previously stated you can't understand this condition unless you have it!

UkuleleLady · Post by **UkuleleLady** » Sat Jun 14, 2014 6:05 pm

nerdhume wrote:The UC group is NOT as awesome. The majority are not willing to even consider diet. They discuss meds and surgery, several advise that as a cure.

This makes me so sad.

I hate to say to anyone that Tex is right, MC is a blessing in disguise, but honestly I feel that way about my own case. I can actually improve my chronic inflammatory response (upper GI, asthma, allergies, more) by eliminating certain foods. Never would have figured that out if I hadn't come to this forum via MC diagnosis.

I pray that your UC stays in remission with your new diet.

Nancy