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Ulcerative Colitis
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Posted 9/4/2008 9:45 PM (GMT 0)
I have seen that a lot of people are misdiagnosed.

I was logging onto the CD forum because that is what my husband's dx is. He has been dx on symptoms alone and to make a long story short, he has had 2 colonoscopies, one a month after the first because he was worse, and a CT scan. Other than that his current Dr has given him meds and said "try this and if it works the you had this dx." he said the tests were all "inconclusive" and "it looks like hamburger meat in there"

We have good insurance, and he is also a veteran. So, he is going to go to the VA to get a second opinion. His appt. with the PCP is on the 10th and it will take a while to get into the specialist.

He was taking:

Ciproflaxin

Metronidazol

Canasa 1000mg, nightly, no change with or without

Colazal 2250mg 3x a day

Entocort EC 9mg, increased frequency and added night trips to RR

prescribed -6MP but concerns are too many

He is currently taking:

Tramadl, as needed, every 6 hours - this takes off the edge for him

Dicyclomine 10mg as needed, every four hours

Asacol 1200mg 3Xa day, 800mg3x a day

Prednisone 40mg taper, tapering near the end

Intestinew, herbal seems to be helping

Calcium

Centrum multi vitamin

Potassium RX - levels were "dangerously low"

We have recently started excluding things from our diet, to see if this helps him.

 

Posted 9/4/2008 9:59 PM (GMT 0)
Do understand that the misdiagnosis aren't usually on the part of the GI. Differentiating between UC and CD is very difficult and can take months! However, both diseases are treated with similar meds and the hope is to throw out a drug that will help which gives the GI information to work. Be sure your husband is 100% candid and open about his symptoms. There is no 100% proof positive test for either CC or UC so patient symptoms play a huge role in identifying which disease it is.

Sue
Posted 9/4/2008 10:22 PM (GMT 0)
Thank you Sue.

It just seems that everything he has mentioned to me, and everything I have read on each of the forums ...we both are leaning to the UC.

I just feel they haven't been agressive enough.
"Be sure your husband is 100% candid and open about his symptoms. There is no 100% proof positive test for either CC or UC so patient symptoms play a huge role in identifying which disease it is. "
I believe we have been very open about everything!, even suggestions. And we have been very compliant.

The secretary at his DR office said there is blood work that can diagnose the CD, but most ins. won't cover it unless the results are positive. Has anyone heard of such a thing? We called our insurance company and it's covered, but the sec. said they can't run the test unless we are willing to pay if the ins. doesn't. It's a $500 test. Of course, since the ins. co. said they would pay, we said yes, but then he was feeling better, and it was all brushed under the rug. This was during his first flare.

I have read that an upper GI should be done, and they never tested for parasites, they haven't done much besides the colonoscopy and testing meds.
Posted 9/4/2008 10:37 PM (GMT 0)

Stick with the VA.  My husband gets such wonderful care there.  It might take patients but they will get to a diagnosis for sure. 

Good luck and hope the medicine is working for him.

ElaineNY

Posted 9/4/2008 10:49 PM (GMT 0)
Testing for parasites should be done. I always thought it was a "standard of care" while ruling out bowel issues.

I had an upper GI done to rule out small bowel involvement when a flare wouldn't end. It was negative. Painless test.

I hope your husbands second opinion with the VA goes well. It doesn't sound like his other doc is really trying!

Would you please edit your signature to 10 lines or less? We require this to save page loading time :)
Posted 9/4/2008 10:52 PM (GMT 0)
I think you were talking about the Prometheus blood test, and like all other tests, it is not 100%. I had two colonoscopies over a 9 month span that both said UC. Then I moved, got a new doc and he did the Prometheus test (my insurance would have covered it but I had to meet my out of network deductible, but that is still one expensive test!) which came back as not consistent with either UC or Crohn's. As my symptoms got worse, he had me come in for a ''scope to see what was going on in me. After my 'scope yesterday, he says with confidence that I have UC in the first 70 cm of my large intestine.

It'll take patience, and the trial and error method is an unfortunate part of the cure. Finding what does and doesn't work for you is the only way to get better. Everyone's colitis is different, and everyone reacts to medications, probiotics, and foods differently. Stay with it and you'll get some relief. Eliminating food from his diet is a good way to find out if he has any food allergies or intolerances, just be sure to let your doc know what you're doing as well, because it might provide some info to him that might otherwise not be communicated.

Good luck.
Posted 9/4/2008 11:22 PM (GMT 0)
I am looking forward to the "second opinion"

And I agree with you Brandon. I have realized that this is very individualized. Each person tolerates things differently. Although, I have noticed a few commons....one is milk. The other is corn and wheat. To different extremes, but very common in most CD and UC.

dakotagirl, sorry about the signature line. I just noticed a lot of people ask what your on and what you've tried. I found a solution - cut and paste =o)

I have decided to keep a journal for him and we'll see if we can't get this thing under wraps.
Posted 9/5/2008 1:20 AM (GMT 0)
Journals are great. Especially when you can track food, meds, reactions, and bms. It gives the doc something concrete to look at.

Many UCers are lactose intolerant while flaring - but are okay when in remission. You may find this with other foods as well.

Your husband is fortunate to have you! A good support system is very important :)
Posted 9/5/2008 3:11 AM (GMT 0)
Like Brandon, I also had the Prometheus panel done and it came back with "pattern not consistent with IBD" (the other three options are pattern consistent with IBD, pattern consistent with UC, and pattern consistent with Crohn's). The sensitivity of this test for UC is 90%. My doctor says they're wrong 10% of the time (10-20% in his opinion). Yet he says my sigmoidoscopy showed a classic pattern of UC (and not Crohn's), and the scope is the gold standard.

That said, if I were in a situation where I didn't know which diagnosis was correct, I'd want to take the test. If your husband actually got some results from the bloodwork, it might point you to the best treatment path more quickly.
Posted 9/5/2008 3:23 PM (GMT 0)
Thank you all for your posts. It really helps to have a sounding board. It gives you ideas of which direction to contemplate next.

He mentioned last night weaning off Asacol. He has no more blood, and only LBM, Praise God! I am thankful for recovery even thought it was gradual rather than immediate.

I am hoping the SCD will keep him in remission. He just isn't willing to follow it strict (he likes food-although you can't tell, 6'2", 200 before pred.) He hates yogurt - we are working on that, trying different recipes to make it taste different. The rest of the family loves it, so we don't understand. What tastes good to us, won't necessarily taste good to him.
He loves Oreos, w/milk, ice cream, fried food, pizza, coffee w/cream and sugar, Koolaid, etc. I just gently remind him the sugar is feeding the bad stuff in there.

The "H" word (Healthy) is forbidden, so I just say, "yogurt is the "H" word, and you belly needs it" =O)
We have tried to pick some fun into this.

Again, Thanks for your support to me, while I try to support him.

In the mean time trying to find a path the prolong the possibilities for our 4 children. (I'm hoping a healthier diet will help keep the autoimmune diseases at bay, currently one has vitiligo and another has bowel issues from toddler age on up)
Posted 9/5/2008 6:02 PM (GMT 0)
He doesn't have to eat the yogurt. I didn't tolerate it and nothing I tried, goat milk, etc., made any difference. I take probiotic supplements and avoid dairy.

On the other hand, he does need to avoid things like Oreos, ice cream, fried foods, pizza, etc. if he wants to gain any benefit from an SCD type diet.
Posted 9/5/2008 6:32 PM (GMT 0)
He knows the bad stuff will be few and far between. Although I was told fried chicken is allowed as long as the batter is SCD...ie Almond flour

We are hoping to make a frozen yogurt version of "ice cream" and the Oreos, well...he'll just have to wait on those and maybe make it a treat for very rare occassions. If it doesn't cause a flare, we should be okay with the rare occassions.
Posted 9/5/2008 10:34 PM (GMT 0)
He won't believe this now, but after a while on the SCD or some modification thereof, he won't miss alot of that stuff. And there's always monster cookies. I found every time I took SCD cookies somewhere, everyone wanted to eat my stuff. LOL
Posted 9/5/2008 10:36 PM (GMT 0)
I never tried the SCD, but all of your husband's favorite foods are exactly the types of things that I have to avoid while flaring. I have very little tolerance for dairy products now, and long ago made the switch to using soy milk. Sugarry stuff really tears me up as well. I'd also be careful about weaning off the Asacol without consulting a doctor first. I convinced my doc that it was in my best interest to go without the Asacol, and even began weaning myself prior to his agreement. Worst mistake I've made. Since coming off the Asacol, I realized how good I had it while taking it. In the two years of taking Asacol, I never missed work because of UC stuff, and since coming off it, I've missed three days just in the last 4 weeks. If he is going to stop the Asacol, be very sure of what does and doesn't upset his system. But honestly, if the med is providing some relief, what is the harm in taking it?
Posted 9/29/2008 5:57 PM (GMT 0)
Well, hubby has been in remission for the past 3 weeks!

We never did completely convert to the SCD, but the changes we did make have been good for the whole family.

We did wean off the Asacol, and everything else for that matter. he is now on only vitamin supplements, trying to get back some energy.

Multi vitamin, C, Calcium, and iron.

Went for his second opinion today and they actually believe like we had (after much searching on our part) this is possibly radiation colitis! He said if it were Crohn's we should have had a diagnosis by now. He said that the tests would have had some conclusion if it were Crohn's.

Now here we are at square one before tests, except there is a direction! Colitis, now which one. He also found hemorrhoids which could be causing the bleeding in between flares.

One step closer to a normal life!

 

Posted 9/29/2008 9:44 PM (GMT 0)
It's important to know that upper GI tests won't necessarily confirm CD either since with CD it can affect any part of the GI tract from mouth to anus and more than one area at a time, but if it's CD and it's only affecting the colon and he has an upper GI that shows nothing that does not mean it's still not CD.

I had my CD affect my small intestines about 15 yrs ago for the first 2 out of the 17 yrs I've had CD but it was also in my colon (where it has remained flared for my entire 17 yrs of having CD) and comes and goes in the rectom (where both UC and CD can affect), it's also stayed constant in/on my anus with perianal crohn's skin tags.

Besides the difference of UC being limited to the colon/rectom and CD being able to affect the entire GI tract, another major difference is that with CD the inflammation can go through the many layers of the intestinal lining (often the cause for fistulas) where as with UC inflammation remains on the surface only (why UCers are not prone to getting fistulas).

This difference can usually be detected via colonoscopy.

:)
Posted 9/29/2008 10:44 PM (GMT 0)
He had 2 colonoscopies in '06, and both came back "inconclusive"
based on biopsies and what the DR saw, there were no determining factors between UC and CD.
I honestly believe that we didn't have a doctor that was agressive enough to look for a diagnosis. I am not charging him for that, but my husband wants a concrete diagnosis.

They have mentioned another colonoscopy - although he is in remission. I read somewhere about one or the other having scar tissue...? we'll see.

Some thoughts:
-none of the medications seemed to make a difference besides the pred-taper.
-some of the meds made the symptoms worse. - discontinued meds, severity stopped (within hours of starting and hours of stopping)
-he had 3 straight weeks of daily radiation on his abdominal lymph nodes as follow up for testicular cancer, 4 years before his first major flare
-his pain has been localized to the lower left side
-milk is an "enemy" during a flare

This doctor seems to think he can help us get a diagnosis anyway. I don't believe one doctor is "better" than the other, I believe this doctor is looking from a different angle and I believe that is what we need at this time.
I have always been uncomfortable with the fact that they "threw" meds at him and said "try this...if it works your diagnosis is..." I would have rathered they ran a few more tests because it is obvious to me (what I have been researching and reading) that other tests could have been done to rule out or conclude SOME thing.

I am encouraged.
Posted 9/29/2008 10:58 PM (GMT 0)
One other thing I forgot to mention which can usually be detected by colonoscopy is that with CD there are skipped patterns of inflammation with healthy tissue in between inflamed, with UC the entire area will usually be inflamed with no healthy tissue in between.

:)
Posted 9/29/2008 11:02 PM (GMT 0)
I think I have read that before, too.
Well, it's up to the doctor now. I'll let y'all know.
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