Update on Side Effects and Something New to Deal With

After many tests (MR enterography, Upper GI with small Bowel Follow through, etc), my Gastroenterologist diagnosed me with Radiation Enteritis and small bowel bacterial overgrowth syndrome (SBBOS). I can say that it has been a long road of many days of diarrhea and constipation. They have just issued me a round of the antibiotic Xifaxan. Took a couple of weeks to get approval of this fairly expensive antibiotic (almost $1k for 14 days). I have decided to head to UCLA and their digestive diseases clinic to try to get control of this since the chances of the SBBOS coming back after the antibiotic is high.

Unfortunately, my left shoulder and upper arm has been killing me. I had a frozen shoulder last year and got a cortisone shot and physical therapy. I thought that was what was coming back but after an MRI on Friday, the report came back that I have a 60% rotator cuff tear, AC osteoarthritis and other tendinitis throughout. Looks like I have to deal with this sooner than later. Appointment with Orthopedic Doc on Monday to figure that out.

And the hits just keep on coming. I am glad the primary treatments for the PCa is done and I just have to stay on HT till May. Onward!...

Cali Jr, sounds really tough.keep fighting and moving forward. I too have trouble with my left shoulder. Just going to have to deal with it at this point.
This next Wed. I will be heading to Seattle for a endoscopic resection of a tumor in my small intestine. I plan on asking him about SBBOS and the SE that can happen from having IMRT.
I only have 6 more fractions left as of today. Really looking forward to the end of this marathon.

Like I said keep up the fight!

The Artistic One- Mark

CaliJr - I know a lot about speed bumps. I think I hit them all after open heart surgery. You (and I) seem to have the best approach, though. Just keep on dealing with them head-on. You can find the way over even the nastiest of them after what you've already been through.

Never let the buggers see you sweat (or cry, for that matter).

P.S. I have pain in both shoulders after the contortions they put me through in the heart surgery. No surgery (yet?), but NSAID's are my friends.

So sorry to read what you are going through. As one who has sporadic GI issues, I know how miserable that can be.
I've also had a bad frozen shoulder, but fortunately some intense P/T resolved that issue.

You are putting up with a LOT. Hope things resolve, although I guess it won't be quickly.

I hope you can avoid shoulder surgery

Mel

MT, Mel, RF, Pax, Beth, Cyclone, AM: Thank you all for the encouragement.

AM: I think the initial radiation enteritis hit me within one week of IMRT. The diarrhea hit me hard then and never full resolved. That led to the small bowel obstruction issues. Finally with so much diarrhea, it led to the bacteria overgrowth. So I think it was just one thing leading to another so hopefully you wont start with the first one and get lead down the same road.

Beth: I am concerned about the sling thing 24/7 for like 6 weeks but I guess that is what I have to do.

MT: Hope to see you with Bill in a couple of weeks.

Thanks all. -JR

TA: The first line of defense will be Xifaxan for 14 days. That is very specific for the small bowels with little to no side effects - or so they say. It was a week process for Blue Shield to approve that. I will start Saturday. The only problem is that the bacteria can come back after the 14 days so we will see. I am heading to UCLA to discuss with them because it is recommended to do a specific diet that will also starve the bacteria. I am hoping that works but if it doesn't, then Fecal Microbiota Transplant (FMT) is one of the treatment options. I sure hope I don't have to get that far.

JR -

As a G9 of about the same age and looking at the HDR triple play as well, you've been extremely helpful and generous in your advice and guidance to me and now I see that you've been dealing with all of this the whole time. I had no idea. I am now even more humbled by your kindness and generosity of your time and guidance then I already was. Thank you and I am sending you my strongest wishes for a quick resolution to these ailments. I tore my rotator cuff some years ago and the pain was so horrible for a time. I can't imagine having that and the bowel issue together.

I hate that I have prostate cancer, but I have to say that getting it has allowed me to discover a group of seriously good guys here at Healing Well.

Post Edited (schoolpsych) : 10/20/2016 2:27:28 PM (GMT-6)

CaliJR said...
TA: The first line of defense will be Xifaxan for 14 days. That is very specific for the small bowels with little to no side effects - or so they say. It was a week process for Blue Shield to approve that. I will start Saturday. The only problem is that the bacteria can come back after the 14 days so we will see. I am heading to UCLA to discuss with them because it is recommended to do a specific diet that will also starve the bacteria. I am hoping that works but if it doesn't, then Fecal Microbiota Transplant (FMT) is one of the treatment options. I sure hope I don't have to get that far.

Like TA said, no SEs with diet or fecal implants(far as I know), and SEs are your problem(or part of your problems). Maybe you should hope it does get that far? Or maybe not, you know what is best for you better than I do. But if they want you to go that route, at least consider some advantages it might have for you compared to more traditional medical treatments, which as we all know, almost always have their downside.

Has anyone mentioned probiotics to you? I am always flabbergasted that physicians- at least the ones I know about for me and my friends/family- almost never even mention probiotics to go with antibiotics, which are prone to kill off the good bacteria in your gut right along with the bad wherever they might be. Leading to potential overgrowth of any surviving bad bugs. And really, seems to me a fecal implant is just another form of pro-biotics, simply starting on the affected end. And most likely that diet also has an affect(effect?) on the growth of good bugs.

Anyway, whichever way you go, I hope you get some good results on all of this soon! I know this has not been fun!

Post Edited (BillyBob@388) : 10/20/2016 5:09:45 PM (GMT-6)

CaliJR said...
Hi BillyBob, It is amazing that my doc didn't bring up probiotics, I did. I had to show her what I was reading about and how it could help... She told me "that should help". I actually had to pull anything out of her on things to help me such as diet, etc. Not a great feeling... that why I am heading to UCLA instead of staying local for help. She got all the test run so I can take those and look for better care. I agree that there seems to be very little side effects for the FMT process but as TA mentioned, it is icky and a mental challenge for me... I understand I have to fail two rounds of antibiotics to qualify for the FMT process. I will be discussing this further at UCLA on November 9th. On a side note, my wife said she would be glad to be a donor for the fecal transplant. I told her no way, as I would never hear the end of it. -JR

You have to fail TWO rounds of AB before they will do the FMT? Wow, more amazement. It could make you scratch your head. But I suppose that is because they deliver it via colonoscopy( or sometimes a nasoduodenal tube)? So a colonoscopy would add both risk and impressive expense.(not that the antibiotic they want you to take is cheap) I have read of some folks who would call for the implants first. I have read of this sometimes being the only thing that would help with C. Diff acquired in hospitals and especially nursing homes. But since it has been performed in China from 400AD, is an expensive and risky colonoscopy the only way this can be accomplished? Oh well, it is what it is.

thefecaltransplantfoundation.org/what-is-fecal-transplant/

Somebody said...
History of FMT

Fecal transplant was first documented in 4th century China, known as “yellow soup”.
It has been used for over 100 years in veterinary medicine, and has been used regularly for decades in many countries as the first line of defense, or treatment of choice, for C. diff. It is customary in many areas of the world for a newborn infant to receive a tiny amount of the mother’s stool by mouth, thought to provide immediate population of good bacteria in the baby’s colon, thereby jump-starting the baby’s immune system.

Fecal transplant has been used in the U.S., sporadically since the 1950′s, without much regulation. It has gained popularity in the U.S. in the past few years, although experts estimate that total number of treatments to date in the U.S. remains below 500 patients.

In late spring of 2013, the FDA announced it was classifying fecal matter as both an Investigational New Drug (IND) and a Biologic, and that only physicians currently in possession of an approved IND application would be allowed to continue performing fecal transplant.

This resulted in less than 20 physicians in the U.S. being allowed to perform fecal transplant. There was a groundswell of opposition from physicians and patients, and on June 17th, 2013, the FDA reversed their position, and announced that qualified physicians could continue to perform FMT for recurrent C. diff. only, with signed consents from patients and tested donor stool.

This has resulted in more and more physicians beginning to perform fecal transplant, but there are still only limited numbers serving the large population needing the treatment. There are also many patients who do not have a donor to assist them.
And there are many patients who have never even heard of this treatment, even though the success rate for treatment of recurrent C. diff. is estimated to be well over 90%.

In all documentation, dating back to 4th century China, there has never been a single , serious side effect reported from fecal transplant.

phenomena.nationalgeographic.com/2015/06/22/fmt-film/

Post Edited (BillyBob@388) : 10/20/2016 6:45:14 PM (GMT-6)

Dang JR,

We know each other. You probably know that already.

Sorry to hear about this lastest misery bro. You gotta get this stuff behind you. I think you fought as hard as anyone putting the prostate cancer down. Gosh, that last proceerdure with the tube through the nose made my hair hurt. Keep going your only carrying the whole offensive line on your back.

You know JR, I've know some guys who must have had to take bovine feces. FWIW. It always shows up in their monologue. (NOT ON THIS SITE)

You said all this stuff hit the fan after heart surgery. Well, it's the same here. Had quad bypass in 2011 and the hits just keep on coming.

Keep us up to date and GET WELL!

Rick

Hi Beth, TA hit it on the head that the icky factor is part of this cure, although seems to be effective. I am still on an antibiotic regimen so that is not the option yet unless it fails.

My PSA is now .03 so happy about that... just dealing with hormone therapy and these side effects. Thanks Beth

Have not tried that vapor... I will ask my wife to check it out. I know I will gag on the green algae one, so I will have her check the ice tea. Thanks -JR