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Ulcerative Colitis
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Posted 1/9/2013 3:56 AM (GMT 0)
I have about a week till I have a follow up visit with my GI. This is to see how I am doing on Imuran/prednisone and also to discuss remicade. Dr. Is aware of my apprehension to go on remicade and he's just told me to go online and research it.

Is there a place to find out how successful this/these drugs are? The side effects, if they occur, sound so life altering but there's a difference if your chance is five in a hundred or fifty in a hundred.

I don't like this feeling of trying to make decisions with my back against the wall. I'm fully aware I was at a spot with this disease where what was being done wasn't working

I'd like to come up with a list of some pros and cons and any questions that I should be asking, including some wording. I know I need to be focused and concise because this doc has no time to spend.

I don't want to alienate this doctor,nor discount his efforts to help me (he got me in, contact isolation and all) New Year's Day for a flex sigmoidoscopy

Some of what I can come up with:

I want to know first how to be sure I don't have a mesalamine inolerance. (I'm getting strange pressure and an almost zapping in my back when I use salofalk suppositorienow. Also get prickles on my neck and nausea.

Im going to ask once again (he refused once) to give LDN a try. ( just because it seems totally without risk.

I want to know his opinion of what I would be risking by delaying remicade to try some alternatives

I want to ask how comprehensive the stool tests are in Canada ( there are parastite DNA tests available in the US) and why the standard care approach doesn't include looking for infections.


Please give your opinions. I'm going to be making a list
Posted 1/9/2013 5:02 AM (GMT 0)
Mmm from what I had it sounded like I got tested for C diff and thats it. Im in Canada too.

Also sounds like your GI is like mine, he would say waiting is a waste of time.

After your research is there anything you feel your research missed? Theres a good chance we can answer those questions and free up time for others.
Posted 1/9/2013 1:13 PM (GMT 0)
You can look for the clinical studies in online medical journals. Here is some information about the drug itself and it goes through some of the odds of getting some side effects: Remicade
Posted 1/9/2013 1:20 PM (GMT 0)
Stool tests in the US check for toxins for C-Diff. As far as I know that is all they test for. I believe alternative doctors test for "parasites", whatever the hell that is. Personally I think that it is a total crock. All people have "parasites" so the test will always come back positive and then they will try to sell you something to get rid of the parasites. There are tons of different parasites and I have never heard of anyone being diagnosed with a particular parasite, just parasites in general. Like I said, I believe the parasite thing is a total crock. I don't even believe there is a test to test for parasites in general. They would have to test for a particular parasite and since there are literally thousands of different ones they would have to give you thousands of tests. Parasite testing is a total con.
Posted 1/9/2013 2:33 PM (GMT 0)
I found this lecture extremely helpful when I was weighing the risks/benefits of trying Remicade: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 1/9/2013 2:36 PM (GMT 0)
My son had numerous stool tests prior to diagnosis. We live in the US

They checked for Salmonella, Shigella, Campylobacter, E. Coli, C Diff Toxin, A & B, Glutamate Dhydrogenase Ag, Ova and Parasites.

I remember they were thinking it was Parasites because we were living in Missouri at the time and were drinking well water. Also, we lived on Lake of the Ozark and my son had been swimming in the lake that summer. They told me that ruling out parasites takes numerous stool samples (which we did) because the parasites and eggs can be missed in some samples since they can die off due to antibiotics but then new eggs are still alive and hatch later on.
Posted 1/9/2013 2:59 PM (GMT 0)
Lodi,
I'm in Canada and my daughter had the same tests as Susan's son. The parasite DNA testing I think you're referring to is an alternative test which is not used by GIs in the US, more by functional/alternative drs.
We've had that test (if that's what you mean) and it test for many things. My daughter didn't have any parasites according to the test. Most GIs will dismiss it completely.
If you want to go down that road, it might be worth a shot but it's very expensive and hit or miss in our experience.
Posted 1/9/2013 4:14 PM (GMT 0)
each time they mention a side effect, they generally say "rare", which is moderately encouraging. Still I realize it is scary. I have been holding off on 6mp for similar reasons.

www.drugs.com/news/fda-expands-remicade-indication-ulcerative-colitis-1943.html

If I understand the emission rate is about 35%, and only 20% after 1 year. But, this is in a group that had already not achieved remission on 5-asa and/or 6mp, so maybe 35% is impressive.

I think you need to be aware of what symptoms to watch for and report. I did not get the sense that ny side effect could not be reverse if detected early and Remicade suspended.

Good luck.
Posted 1/9/2013 6:08 PM (GMT 0)
Thanks so much for all the responses!

The reading materials are so helpful. Pluot, the pdf you supplied is fantastic! I feel tons better about Imuran anyways.

about Remicade (thanks ipoop), the info is hard for me to understand, which may be reason enough to hold off on it. I sort of feel like colon removal might be even on the scale to that. If anyone has experience about not rushing into Remicade and just waiting to see if the Imuran works.

killcolitis, did you work with a functional medicine practitioner in the US for that test? My first one wasn't readable (they said it could've been because of the medication or could've just been because there wasn't really any stool for the test, just mostly blood). Are you saying even a GI in the US won't recognize that test? It did cost a boatload of money and I was devastated when my sample was rejected. I still see value in finding out if there is a treatable organism or not, especially when my flare was preceded by drinking contaminated water.

Susan, are those tests from a standard regular GI in the US?

I'm also wondering once you go on an immunomodulator, do you just give up trying to support your own immune system? I see some of you have probiotics and stuff like that in your signatures.

gary, I don't agree with you 100%, I've read a few stories about people having treatable organisms. It fits the UC story. Opportunistic bacteria get a hold of your system, crowds out the bacteria that live symbiotically, gives off bad toxic stuff, human body starts up their immune system, the imbalance, along with the wrong body environment, allows this non stop immune attack. This is why I thought FT works. I agree that a lot of it is experimental, but no more than these drugs?

DBwith UC, you got a perforated colon with a test? Thant sucks! You're less worried about the
prednisone than the 6mp then?

Madcat, If its just wasting time to explore alternatives, that's OK in my book. I see this disease progressig it's own way regardless if I explore alternatives or drugs. Bottom line as far as I see is no one really knows.

Thanks again, keep contributing.
Posted 1/9/2013 6:32 PM (GMT 0)
It is just that I seem to be doing OK on the low'ish 10mg dose of Pred. Still hope to taper lower. Bone density scan was even improved form one I had before Pred. At 40mg I had a little rage, anxiety, and trouble sleeping. I got through that without any other side effect except a 2nd chin. If I can't taper and maintain, I will eventually have to do 6mp. But, 5-asa and probiotics, and occasional enemas are slowly helping me. It has been a long 3 year flare, but it has been tame'ish for 1.5 years now.

I was more prone to infection when I had undiagnosed diabetes. I had many sinus and bronchial infections over a couple of years, and my appendix got a long-term low-level infection that was misdiagnosed as muscle spasms. In fact the incision I got from the appendectomy (because it was too yucky to do laparoscopically) is the one that herniated, leading to the repair that led to the complications where I got perforated during scoping.

I just feel real unlucky where infection is concerned. Also, during a brief 6mp trial, I found out two things. 1) 100mg was not enough for me, 2) I felt lousy even at 75mg.
Posted 1/10/2013 3:49 AM (GMT 0)
Ask the doc whether he/she has had any patients develop the cancers, etc.
Mine had not, so that was real, good information.

I dont think you risk anything by delaying, it just depends on what discomfort etc you are willing to tolerate while you continue to try other approaches. Unless you are taking large doses of prednisone instead! (Same could be said for surgery, I suppose).
Posted 1/10/2013 4:19 AM (GMT 0)
Lodi,
My son had all these tests done at the emergency room at the hospital in the city where I live.

When he first became sick, I thought he had the stomach flu. After several days, he wasn't getting better and I brought him to an urgent care. They did blood work and saw that his white blood cell count was very high and had me take him to the ER at the local hospital. That is where all the tests were run. The ER Doc told me that it is quite common for people to get these bacterial infections. You can get them from food, well water, being around animals, etc.

My son's Pediatrician also ran all of these bacteria tests a second time just to make sure. The pediatrician thought he had Shigella or Parasites because it has the same symptoms as UC. The pediatrician told me that these bacteria infections are much more common than UC.

Hope this helps you out.
Posted 1/10/2013 4:28 AM (GMT 0)
It's standard to test stool for parasites whenever someone has chronic diarrhea for no known reason. There are numerous types of worms that can infest our digestive systems; they're more commonly found in children (they put everything in their mouths), but can and do occur in adults. Usually they test for eggs of the parasites too. If you've seen an order for "stool O&P", that's what it is.

A stool culture tests for the presence of any abnormal bacteria in the stool. The c. diff toxin test is a quicker blood test which is often done for that one bacterium only.

When I was first diagnosed and couldn't get into remission, I had all of these tests several times. Now my GI does a c. diff test any time I've been on antibiotics, as she says she's seen the infection be silent for a time then suddenly become symptomatic. She's thorough, and I like that.
Posted 1/10/2013 4:17 PM (GMT 0)
More great points, thanks.

If its just my own discomfort, waiting is fine by me. I will ask which specific stool tests I had (I like the idea of getting retested with a possible latent infection)

DB, what if you found the way to increase bone mass with low dose prednisone? Well, it's great you're feeling better and maybe there's more to just feeling good than we know. Do you eat gluten free as well? Seems like there's some kind of connection with gluten/celiacs, and respiratory stuff. I'm still freaked out with your perferated bowel. I watched the GI do a flexible sigmoidoscopy on me, and they're non too gentle with that scope.
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