Ulcerative Colitis - This will be of interest to you!

LuckyLindy said...
Hi all, I just signed up after reading this great thread. I was diagnosed with Ulcerative Colitis about 5 years ago after my first time water skiing (swallowed a TON of dirty lake water).

Hi Lindy,

Sounds like you swallowed something bad. Have you tried doing any cleanses? The colon cleanse didn't do anything for me, but then I didn't get Colitis after swallowing a ton of dirty lake water. I'm now doing a liver cleanse. I'm fructose intolerant, which means my liver isn't working as well as it should. Anyway, it sounds like you picked up something from the dirty lake water. Search the Net for different types of Colitis, get tested for anything that might be a factor, and try as many alternative treatments as possible. You might just find your answer.

For example, there is something called Hemorrhagic Colitis that can be gotten from dirty lake water. Usually a stool test for E. coli. would rule this type of Colitis out though.

LuckyLindy said...
Hi all, I just signed up after reading this great thread. I was diagnosed with Ulcerative Colitis about 5 years ago after my first time water skiing (swallowed a TON of dirty lake water). Whenever I eat carbs, I have up to 20 bouts of D per day, often very bloody. about 4 1/2 years ago, after upping my prednisone to 80mg per day (which reduced D to twice per day), the doctor finally said "diet has nothing to do with this ... we need to remove your colon". I haven't been back to a doctor since, and up until recently have been somewhat OK by keeping carbs low and eating no gluten.

Now the only way I can maintain remission is almost 0 carbs. Steak, chicken, salad, oil, etc. The carb response tells me that this has to be bacterial/fungal, but all the tests came back negative. Fecal transplant is sounding pretty tempting, but since the doc said my entire colon was impacted, do any of you know if an enema would be enough? Could I use a long tube and get it closer to my ileum?

Or ... has anyone tried making their own pills by filling empty capsules with the donor feces? I know this sounds gross, but it sounds like people with larger areas of infection have had more success with the application being done via a tube to the stomach/small intestines (which doesn't seem feasible at home). The only alternative I could think of was homemade poo pills (for lack of a better term).

Thanks so much, keep up the informative thread!
Lindy

Hi LuckyLindy,

That’s a very interesting method of performing a fecal transplant, however i never heard of anyone trying that let alone even many trying it via enema. It sounds like you are aware of the infusion being administered through a nasogastral tube which delivers the bacteria directly to the small intestine. This procedure obviously needs to be performed at a clinical level or within a medical environment. Australia may be able to help you with that but it costs some big bucks to go there.

I would think you have a better chance at trying the infusion at home through an enema verses making feces capsules. You will be surprised how far you can reach inside the large intestine using and enema with a diluted saline mix of fecal matter. The bacteria are suppose to implant themselves and eventually multiply anyways to cover the entire colon length. You can also help it to reach the right side and transverse colon by moving into different positions immediately after the infusion.

If you did indeed pick up something from that water like some sort of infection or harmful pathogen that has implanted itself and can't be detected through stool/blood tests (which is usually the case) then you will continuously have recurring inflammation in the colon. In addition to the harmful pathogen that can't be identified right now the normal gut flora has been disrupted and as a result the immune system may be inappropriately responding because of that reason. At least by performing a fecal transplant you have the best possible chance of 1) fighting the harmful bacteria if any and 2) restoring the "normal" gut flora which is extremely important in these IBD cases. If it doesn't completely bring you back to normal it will most definitely improve your symptoms drastically and it's always there as an on going alternative treatment with the likelihood of it eventually working. Also keep in mind how natural and safe of a treatment this is that offers zero adverse side effects and no serious problems like these potent drugs pred, 6mp, remicade etc. cause. As long as you take all the necessary precautions and have your donor screened you should not experience any problems. I for one would much rather perform a fecal transplant every few months as opposed to taking 12 very harmful pills a day and feeling the effects of them that can't be reversed after.

Probiotic said...
MAD- good to see you staying actively on this thread. I have not got around to contacting Australia yet for the consult, but in the meantime I was wondering if you could elaborate on the tests you listed earlier in this thread. Specifically, for some of the blood antibody tests you specified the pathogen but did not specify whether the blood test needed to be for IgA, IgG, IgM etc. If you can specify exactly which tests they recommended, that would be much appreciated. Since insurance won't cover my donor's tests, I would order the requisition via a site such as directlabs.com and pre-pay online, but they offer a vast number of tests for every pathogen so I need to know exactly which type of test, not just the pathogen. Thanks again for posting all of this. Just like helminth (parasitic worm) therapy, one is unlikely to find any North American doctor willing to have anything to do with this, so it really depends on this online sharing of knowledge.

Hey Probiotic,

It's the least i could do to try and help anyone’s situation, even if it's just a small amount. I hate this disease and God knows i used my share of valuable information from here that everyone has offered overtime. I'm trying to figure out how to post the file "Home Infusion Protocol" i got from Australia but i can't figure it out. That document has exactly those tests i mentioned earlier. To be honest there is not much more i can elaborate on those tests just because i didn't research that far into them. I did have a few problems with the labs when getting tested and all i did was look up any abbreviations they did not recognize (maybe 2 or 3) and point them in that direction. They eventually figured it out and took it from there. I wish i can be of more help in that department but i'm not exactly sure what your asking. I did notice the test for Igm is included in the list but can't recall what that is even for.

Do you know how i would go about attaching a file here or should i just copy and paste it? The complete document is good to have as it outlines everything you need to do when performing the infusions.

Hi do you have any reference to studies "phosphatydlcholine (sp.) capsules because such capsules were used in a series of studies in Germany which resulted in very high UC remission rates, 80%+. "

I would like to find more information.

I am very curious as well about the home protocol. I can't afford to go to Australia but I am VERY interested and willing to do fecal transplant HPI. Can anyone tell me if the protocol was posted, where, when, how? PLease let me know.
Thanks!
Justin

Here's what I did:

Supplies:
- One syringe with removable long tip.
- Small plastic bowl.
- Warm water.
- Poo.

Procedure:
- My older daughter gave me my granddaughter's diaper as soon as my granddaughter had a bowl movement. I immediately scoped up the yellowish gooey mixture (breastfed poo) from the diaper and mixed it with a bit of warm water. My granddaughter was six months old at the time so there wasn't much mixture--about enough to fill one to two syringes. I then put the mixture up my butt with the syringe. It was as simple as that.

Results:
- Before doing fecal transplantation, I was having trouble tapering off of Prednisione. Every time I lowered my dose to under 25 mgs, the bleeding would come back. All bleeding stopped after the third day of doing fecal transplantation. I was in remission. My goal was to get off of Prednisone ASAP. I ended up tapering too quickly, and got side effects. Those side effects included inflammation of the joints. During this time, the inflammation in my colon did NOT come back. I thought it was amazing that I was inflaming in my hands and NOT my colon. I clearly was not producing enough Cortisol to keep my colon inflammation at bay, and yet I was having NO signs of colon inflammation. Is there any Colitis medicine that works so well? I think NOT.
- My GI did a colonoscopy soon afterward. He said my recovery was remarkable.
- I had to take antibiotics about two years later. and ended up getting another flare--most likely from having taken the antibiotics.

Notes:
- I used the poo immediately, before the bacteria had a chance to die.
- I used poo from someone who didn't have any diseases and has never taken antibiotics.
- I have read that fecal transplantation should be done once a day for 10 days. I did it for only three days.
- I have heard of only a few others trying fecal transplantation with mixed results. A couple have had results like me: it has put them into remission. A couple have said it did nothing for them; however, they did not mention any negative side effects.
- I have read that fecal transplantation has best results for those who have C-diff Colitis.
- Please remember. I'm not a doctor. I can't recommend fecal transplantation. I can only tell you my experiences.