The good days.

Those of us who experience extreme pain (and those of us who just get a glimpse of what others go through), all have those days. The "good" days... Contrasting those days, we look back at "great" days, and "terrible" days; and realize that good days should be appreciated.
A friend and I recently began talking, about how we had been having "good" days. In a way it is encouraging! Good days are always a much appreciated break from the bad ones, and a hope for great ones. But, in the good days somehow lie the foreboding that the bad ones might return. Life seems to be a cycle. Some of us have big, huge waves in our cycle, i.e. years of good "perfect" lives, followed by times that aren't so wonderful. For some of us it changes day to day. In the past month or so I've had of mostly good days, I've been trying to enjoy them to their potential, while preparing for what I deem the enevitable downturn that will come. As we speak my stomach sends a resounding "yes" to the recently quiet rumblings.
Usually, I write to Crohns patients, or those experiencing similar issues. This is for you, but also for everyone! How can we use our good days to prepare for those bad ones that will come? How can we invest in friendships while we have the chance? What projects can we get done, or prepare for? And what in the world really matters in life? Maybe we should concentrate on that.
And those of us with health issues...what can we do now. It is so easy to sit back, and think that we are doing "ok" now, ignoring the fact that even if our issue is under control, there will come a time when we will need to deal with it, or another one, in the future. Or, if we are doing really well (wouldn't that be wonderful!!), how can we help others learn more about how they can do better as well.
All this to say...I've had some good days. Through those God has opened my eyes to so many things that I'd love to be doing, and to share what I've been through and learned. At the same time, fear creeps in, that soon I will be in a state where some of my hopes won't be realized. For me, at this time, it is most likely reality. But what can I, and others, do in the mean time to make the most of what has been given us? I envy those with endless health and energy. Oh, what you can do! Don't take what you have for granted.
My next goal is to continue to research alternative methods that might help me. Be prepared! I am not your average patient, and poo isn't as far as I will go. (see the last post) On to helminths...

Ding dong! May I borrow some poo?

 Our doc went to a conference, and told us they discussed a new therapy. Something is terribly wrong with your intestines. Your bacteria is overrun by negative bacteria, and you need to fix that! So, you get out your Tupperware container, walk to your neighbor's house, and "ding-dong"..."may I borrow some poo??". Sounds crazy, but according to research, just might be they new "medicine" for many of us. It has been shown to help all sorts of things, infection being at the top of the list, but also some autoimmune disease and even obesity.

We finally tried it. We called it HPI (human probiotic infusion). Otherwise known as bacteriotherapy, or fecal transplant.
I started talking with a doctor in NY about the process. He was willing to look into everything, but wasn't sure about the efficacy with Crohns. Although they have seen amazing benefits with C diff patients, and some improvements among Ulecerative Colitis patients, the success rate hasn't been great among Crohns patients for some reason. I speculate that it is because one will encounter trouble getting the implant into the small intestines, which are more commonly associated with Crohns. But, I am getting ahead of myself here...
After many phone calls, and advise from a few friends, I found Dr. Silverman's protocal. He is a GI that has done this proceedure with some success, and come up with a list of test to do on the donor as well as how to go about doing the HPI on your own at home.
Since my husband was going to be gone for several weeks, I was staying at my in-laws while he was away. Since my family seems to be the genetic carrier for many intestinal related issues, we decided to look to his. My mother-in-law is a retired nurse, and was willing to help with the procedure. She also has had no real illness to speak of, especially intestinally. Also, she eats a great diet; which I found important. SO...of we go to the doctor! We brought our ideas, along with the list tests to be done beforehand. The last thing I wanted was something new!! Fourtunatly, he was very agreable. All the tests came back negative, and we were on to step two: infusion.
Before we started, I went again to get hydrotherapy. I figured having it all cleaned out might provide a better atmosphere for her good bacteria to take over mine. Plus, getting the mixture up there when full might not be the best proceedure. In any case, after my trip to the hydrotherapist, we set out to make our first concoction. Our first go round, we added her "poo" to some distilled water, mixed shortly with a blender (a designated one, that we got from a yard sale for this purpose!) and filled an emptied fleets bottle. We had to take out the filter and use lots of lube, but it worked. I took a nap, hoping to keep it intact for a few hours. Unfortunatly, round one kept for only about 45 minutes.
Round two. We mixed up the mix, but this time we decided to get a prescription for saline. Maybe that would keep our bacteria happy. We also tried a larger enema bag, trying to get the mix up there a bit higher, but it didn't seem to work quite as well, so we went back to the fleets. This round I held for a few hours (4 I think), and was satisfied that was a good time frame.
Per Dr. Silverman's protocol, we repeated this 6 times. I did see major improvement in the following days, but I was on a prednisone pack, and I guess it was masking my symptoms, because they all came back in a few weeks. We tried the proceedure again a few weeks later, to find that we didn't get the same results.
I am glad that I gave it a try! There were absolutely zero side effects, and I am always interesting in alternative methods to some of the toxic meds that are out there! I also think that it can be helpful. We don't know what took, or what help my gut got. Just because I don't see immediate or significant effects, doesn't mean we should all give up on the idea. Maybe someday, I'll do it again, not that I'm over the ick factor. In any case, I know what I'd do where I ever to encounter c. diff!! Ding dong...

Do what, where?

So last week, I ventured out and tried some new things. We've all heard the saying, "if you keep doing the same thing, you will get the same result". Some therapies take a long time to do good (or harm). For instance, eating healthy can have a huge impact over the course of years, but in one day will not change a whole lot.

In any case, I got this idea from jini patel, and crohn'sboy, to get a colonic, and then to put in some healing herbs and probiotics.

Colonics are new to me, but not to humankind. As far back as 1500 BC, Egyptians used a type of enema to treat disease.In the early 1900's in Battle Creek, Michigan... John H. Kellogg, M.D., extensively used colon therapy, specifically colonics, on some forty thousand of his patients. In 1917 he reported in the Journal of the American Medical Association — that in all but 20 cases — he used no surgery for the treatment of gastrointestinal disease in his patients! The popularity of colon therapy in the United States reached its apex in the 1920's and 1930's. At that time, colonic irrigation machines were commonly seen, and regularly used as a standard practice, in hospitals and physician's offices. But in the ensuing 60 to 70 years the public's use and access to this valuable health treatment greatly decreased.

So, I decided to give this a try for myself.

 This is what the machine looked like. Pretty simple and retro, but seemed to get the job done.

If you've never heard of this before, here is the explanation of what it is:
"Colon Hydrotherapy is a safe effective method of removing waste from the large intestine without the use of drugs.  By introducing filtered and temperature regulated water into the colon, the waste is softened and loosened, resulting in evacuation by natural peristalsis.  This process is repeated a few times during a session." - Pam Craig, I-ACT President

The lady was very nice, and asked me all sorts of questions about myself and my family. Last year, she did 70,000 colon therapies on people in and around the city of Louisville. I didn't know there was such demand! I was told to lay on my left side while she insterted a tube, and then was transferred to my back. In and out went the water...it was a very subtle, and actually nice feeling.

The therapist kept asking me, "don't you feel a little different, Rachel?" I know she was implying me feeling a bit better, but I couldn't help but think, "of course I feel different! I've got water surging in and out of my colon, for heaven's sake!"

During the procedure, the most uncomfortable parts were some small cramps as it was cleaning, and the removal of the tube. I had them leave a bit of water in with some marshmallow root, comfrey root, and slippery elm bark (all known as healing herbs), as well as a few of the natren probiotics that I've been taking orally for the past two months.

After it was all over, they gave me a Vitamin drink, and told me to take it easy, as my colon had received quite the work-out.

Now, it is about a week, post-procedure. For the first 2-3 days I felt no intestinal cramping! It was seriously amazing. I've had a bit more of that come back, but it still is much subdued from what it has been for the past few months. Here's hoping that it continues to be as helpful!

Curious, anyone else had any experience with colonics?? Let us know! I'll keep you updated to my progress!

Keep on hoping!

Rachel

Back on the wagon..

Valentines 2011

It finally happened. I knew the day would come, but dreaded actually hearing it. I went to the doctor, and he said (my GI) that we have basically done all we can do. Ok, not everything...we can go to Mayo. Kinda scary.

I stumbled across this site, listen2yourgut.com. It has quite a bit of helpful information. One thing I found, was that I tried the shakes that they offer. It seems I can down these, when all else fails. The lady on the site greatly enourages a few things, including probiotics to reintroduce good bactieria, oil of oregeno to get rid of infection of things like MAP (more on that later if you don't know about it yet), and EFT (some sort of emotional release technique).

Right now, I'm feeling pretty good. Of course I always do when they put me on steroids. Then the downward taper off them seems to coincide with the downward spiral of how I feel, both in my attitude, and in my physical health.

That being said, each time I resolve that this time will be different. Resolve may not do much, but I believe hope does.I hear over and over that there is no "cure' for Crohns. I believe that to be true, in a sense. Many, many people have been helped through various means, though, putting their crohns into remission for long periods of time...so, that is the hope.

I am fully convinced there are lots of factors that affect the IBS patients colon. Some may be allergies, some infection, maybe toxic overload of some kind. Maybe hormones? Who really knows?

People like me get desperate for something to help. But it seems, eventually our "quick fixes" such as pain meds, and steroids all do us more damage in the long run. If only we could all figure out how to combat that?

I am contemplating doing an experiment, next, where I get a colonic done, and then do a retention enema with probiotics. I think some have found relief with this. Crohnsboy.com has a narrative with him trying one during a flair, and seemed to find some help.  Also, a really interesting idea to me is the one of Human Probiotic Transplant (otherwise known as a fecal transplant). I can't find any doctors here in the US doing this for Crohns. Many have tried it for c-diff with extremely high success rates. Also, a doc in Australia has been doing thousands of them with good results? Will I have to travel to Australia? Surely I can talk some local GI into trying this??

Now that you've all pondered this wonderful thought, go enjoy your next meal. :)