Difficult GI appointment

I have just got back from my appointment with my GI. The plan was to discuss possibly being prescribed LDN with him (I had sent him an email prior to my appointment outlining my reasons for wanting to try this) however he was vehemently against this option, and in fact, he stated he wouldnt write me a prescription for it, and therefore I know that his colleagues will have the same view, things are very much behind the times where I live, this is a country that doesn't stock rectal Meds, Nictotine patches and E pens in their pharmacies .....so go figure!!

So I although I am not surprised, I am annoyed at such closed-mindedness. He then went on to berate me for undergoing the FMT with my husband, he said that was not a good idea as I am taking Prednisone, and mentioned something about introducing unfriendly bacterias, not sure what he meant and I can't find anything online, so if anyone knows please tell me as unfortunately I cannot remember the exact reason he said for that, only that he wasn't happy with me going ahead and doing stuff without letting him know first!

The thing is if I had told him I was planning on the FMT route, he would have advised against it, and just to remind people, I had C- Difficile, and took the Meds for C-Difficile, which cleared it up at the eleventh hour, and due to the real risk of it reoccurring I decided to strengthen my immune system by doing the FMT. I somehow knew I was a prime candidate for it reoccurring, mainly due to the fact, that I have been unable to take any probiotics, supplements, anything that most people with UC take to arm and strengthen themselves against further problems. So, I am still doing well, with no obvious sign of blood, stools okay, no mucus or urgency, and yet he was not happy.

On a different matter I had a CPR blood test last Saturday, and the results were 21.0, he then asked for another yesterday, and the results were 40.0 which seems odd after five days for it to have gone up. But, fortunately, my white blood count on Saturday was 17.76 and has dropped to 10.93 which is good, and so I now have to repeat the test again on Monday and think about what my next move is.

At this point I don't think I can hang around any longer, as my body really needs to start receiving some medicine, as I stopped Pentasa four months ago, and I am of the view that I should take the AZA for between 6-8 months to start some healing, as it's not just the UC that's not being treated, as I have Spondyloarthropathy too, and by then hopefully I will have found a doctor that will be prepared to write me a presciption for LDN, and I can switch over to that.

I think with my history of Pentasa not working (I became allergic to it, because of the aspirin in it) and all my other problems with allergies etc, that it would be wise to take this course of action, and at this moment in time, I need to start taking something fast, as I have been having problems with my left hand going into spasms when holding a knife, I ended up with a claw hand.

Always interested to hear people thoughts.

Sorry this appointment was frustrating for you.
I can try to explain a little...

lDN has helped some with UC, however there is no good evidence that shows it can help. Doctors cannot prescribe unproven treatments for several reasons. Of them, ineffective treatment is just as dangerous as no treatment. If you would "waste" time waiting for the med to work and it didn't your disease can progress further.
You are correct that you need a medication to get your disease in control becuse having inflammation is dangerous. I can cause progression of disease which comes along with complications. And it increases risks for cancer.

FMT is known to be great for curing c diff but there are a few studies that show it is slightly riskier in IBD patients, especially those in steroids or immunosuppressants.

As for the aza it doesn't usually induce remmission without some kind of push. The prednisone should do that. But 8 months is a very long time frame.
You should be retested for c.diff as well as have a check for ova, parasites... And CMV.

I really think you should look into getting an anti-tnf.
If not, you can look into cyclosporine as a bridge to something like entyvio which works slower than anti-tnf

Sorry this has been so tough
((Hugs))

There could be liability issues if your GI tries alternative methods; so he isn't going to support them.

I did FMT about 10 years ago when nothing else would work. I used my granddaughter's stools. I was able to do three treatments over three days. It put me into remission immediately. I believe FMT works best when the stool is filled with good bacteria. My granddaughter had never been on antibiotics and was only drinking breast milk. So I had a good donor.

If you can't get stool from a good donor, then I recommend consuming fermented foods, such as homemade yogurt, kimchi and sauerkraut. Fermented foods are the next best thing to FMT and far superior to probiotic supplements. Also, I find that some probiotic supplements can cause diarrhea.

My GI wasn't not happy. He was shocked that I had improved so quickly and that my colon had showed no signs of having been inflamed and ulcerated. He soon retired after that.

Post Edited (subduedjoy) : 8/11/2016 9:25:41 PM (GMT-6)

Sorry your doc appointment went so rough. Are there other doctors you can choose from in your area?

Some have had luck getting their primary care/general practitioner doctor to prescribe LDN. Worth an ask at least.

Poppie said...
subduejoy..glad it worked out for you. I used to be able to drink water kefir, but now my body doesn't like it, anything that is fermented makes me unwell, and so a couple of days ago I fermented some veggies which I am hoping should be easier for me to tolerate.

Yeah. I'm not surprised. The worse one is flaring, the less one can usually tolerate orally and the more one needs to get everything through an IV.

iPoop, your right, it is just too difficult to say what is going on right now, and so I will just have to discontinue the smoking and wait for the blood results on Tuesday...Thanks!

I love fermented foods, veggies, kombucha, water kefir... Unfortunately it didn't do anything for my UC. I eat a lot of it too. Always eating bubbies and drinking kevita or GT's.

What you mentioned sounds like a good plan. The only other thing to do would be really commit to doing the FMTs and getting on something else, like LDN or going fully forward with nicotine patches. You definitely need to be taking something for maintenance. The problem with the alternative options is that they really do not have the medical backing that a drug like 6mp/Aza have. It's uncharted territory to some extent. Some people have luck, some don't. Same with everything and this stupid illness. Is it uncharted because it's ineffective? I don't think so, I would imagine it's because there is no money to be made in a lot of these things. At the same time, if they were ultra effective, people wouldn't ever have surgery. I tried smoking, diet, probiotics, MMJ...

You know, regarding FMT, I've read that the best donor is actually someone that doesn't live in your household. I've also read babies have very low counts of good bacteria because they haven't been exposed to anything. Though it sounds like a great option since baby stool is probably the "cleanest" you're going to get so far as a stool goes - it seems like it's not necessarily the most potent. Using random people's stool, of course, comes with tons of its own risks.

Once I went into remission almost completely spontaneously. I was doing all sorts of recommended stuff, but I can't attribute any of it to really being the catalyst because it didn't coincide on timing. I feel like there is just so much we do not know.

Hi Poppie...

I bought my LDN from an online pharma without issue.

www.buyldn.com

I hope this helps.