counting success stories with fts (continued)

gary,

Is there a test to check for DAO enzyme? I think it is affecting my son who is having SIBO IBS C type symptoms.

Gary, thanks for your advice. I agree with you, there is probably a problem with metabolizing fruit due to the high level of histamine. However I would react badly to so many other things. I don't think it is just about a low level of a particular enzyme. Had it been a raw vegetable, a piece of meat, fish, turkey, a few nuts, and all the rest of the familiar culprits (such as gluten, corn, diary, soya, yeast), I would have suffered just the same.

Doctor Brandt told me that after 2 weeks I would know. It's been two weeks of daily infusions and I'm still not sure whether it has a positive effect on the gut. Yesterday I bloated badly and was in agony after the first meal of the day at about 15:00. This morning there was no donation so I get a little break. I decided to carry on for another week before I make up my mind. I have eaten only well boiled vegetables and chicken since Monday and I think I should keep it going that way for a long time. I know many other people were able to digest different food after only a few infusions but they were usually on strong medication and I'm on none. Perhaps the severe restriction on diet will have the same effect as steroids when on this therapy. After all, Doctor Brandt advice is probably based on his experience with patients who were on the drugs.

Best wishes,

Sharron

Post Edited (sharron19) : 8/14/2015 9:06:09 PM (GMT-6)

Sharron,
Happy that some improvements are showing up. Formed stools indicates healing is in progress. So try your best to stay on the same diet and infusions.

Best wishes ...

Another week of FTs has passed. It's been 4 weeks since I started this round of daily infusions with my second donor.

This week I'd seen a definite improvement until Thursday afternoon. My BMs became more regular and solid, very much like what I'd experienced prior to the outset of the disease, 15 years ago. I was looking forward to writing my weekly report and letting you know that I was on the way to recovery. However from Thursday afternoon until Friday morning the disease was back in its full blown. It was tough. Somehow, I managed to get to my donor's house and after I felt that my gut was completely empty I administrated my daily infusion. Surprisingly, my body did not reject the fluid and I didn't have diarrhea since then. That was my last infusion for this week. I am going back to work next week and plan to have only 2 or 3 infusions a week for as long as I can. I will have it on Mondays, Thursdays and possibly Fridays.

I'm not sure what's caused the change. I keep the restricted diet of well boiled vegetables, eggs and chicken. Perhaps it was caused by the introduction of a different boiled vegetable. I don't think there is a point in naming the suspect since we are all so different in the way we react to food and in my opinion each one has to listen to the list that his/her own body dictates him/her.

I feel very weak but also down. I've had thoughts that all the good work was diminished during these 15 hours from Thursday 17:00 until Friday 7:00. On the other hand I managed to lift myself up by the acknowledgement of two facts. The infusion of Friday morning went well despite the supposed inflammation. Usually, when inflamed it had been rejected immediately. Second, I've still not had diarrhea since the last infusion. Usually these type of severe symptoms don't just disappear. So, perhaps something has changed in the balance of the bacteria after all.

I have no choice but to carry on because my amazing donor would not let me stop the infusions now.

I will write again in a week time but meanwhile I will be happy to get any comments.

Best wishes,

Sharron

Post Edited (sharron19) : 9/11/2015 10:00:35 PM (GMT-6)

Hi Sharron

Been following your progress and I'm glad to hear you saw some improvement. Could it be worthwhile cutting out all veggies for the time being and just having potatoes instead? You ccan always add them back in later on when you're healed. Worth a try.

The only reason I suggest that is while I was making some adjustments with diet & supplements, I was also eating boiled veggies to get my vitamins in. I found cutting veggies out completely for a short time and adding them back in later is one of the things that allowed me to heal.

End of the the sixth week and there is no much to add. I've had 3 infusions just like last week. I was doing really well for four days until Tuesday when the symptoms came back. During the good days the BMs were amazingly healthy looking. After the relapse, I got better again on Thursday morning and today, Saturday, I'm not great again. There is not apparent reason for the relapses. I will carry on for a bit longer and try to think what changes to make in order to help this therapy work. I've eaten a lot of potatoes and boiled eggs recently and I'm not sure whether it was too early to introduce the carbohydrates.

I will report again next weekend and meanwhile would appreciate any advice.

Hi Sharron -

Sorry it took me a while to get back to you. I went over the updates, and the last post is promising. I hope the progress continues to see an upward slide.

I think Kevin posted some nice suggestions in regards to diet. Resistant starch foods like potatoes, rice and plantains feed the good bacteria, and cooking them thoroughly is a good way to get some easy calories when you are weak. I would also consider experimenting with some healthy fats like ghee, olive oil and coconut oil as you progress, though coconut might cause die-off symptoms. In terms of veggies, boiled green beans and peas until they are soft are very therapeutic. Find the diet combination that works best for you.

In terms of reverse osmosis water - I believe it's the healthiest kind to drink, assuming you have a quality filter set up in your home. The next healthiest would be water sourced from your local spring or just quality spring water. I would avoid tap water like the plague -- it may contain unneeded pathogens and chemicals.

Best.

kamakya said...
My daughter is now in remission for last 9 months and her ESR reduced substantially last week

That's great. I hope she is growing fast.

A mid-week report. The last two days were quite tough. I added sweet potatoes to my diet and perhaps it triggered the relapse. I was in bed very weak and with fever, diarrhoea and again, lower back pain. It could also be caused by the brown rice. I was again in a very low point and thought to stop the infusions but at the end decided to give it another try. I'm going to try to have mainly potatoes and eggs for a few days and see if it can calm down the inflammation.


best wishes,

Sharron

Post Edited (sharron19) : 10/30/2015 11:18:18 PM (GMT-6)

Sharron I just wanted to thank you for the continued updates, I know it takes a lot to keep updating everybody on this drawn out process that you are going through and wanted to let you know it is greatly appreciated that you share your journey.

Thanks for the update Sharron, I've been following with interest for a while.
I know you're quite far in to it now but one of the things I took away from the Briggs Protocol is the need to address inflammation and get it under control before doing any work to help heal the colon. It might be that using steroids for a short period to get TNF nice and low would allow the FT's to really hold? Presumably, you've still got time to add steroids now while you continue with the infusions.

My weekly update (it is actually only now the end of the 8th week with second donor and not as written last weekend):

Thanks for all the comments. Bad Gut, it was good to read your comment and learn that some people do appreciate my work of sharing the process. I really want others to benefit from it as much as I've learned from the experiences and intuitions of the people who've shared thiers. When uncertainty prevails it is harder to share but on the whole it is one more thing that keeps me going, so it's good for me as well. The main thing that makes it happen is my very supportive donor and her determination to do everything she can to help me get better. I sometimes can't believe my good luck.

Garry, though I might have an issue with tolerating histamine, I don't believe it is my main problem. I would flare after eating a grain of air. However, I will take it into consideration.

Kelvin and John (iPoop), I've stated already the reason for my avoidance of medication. In 2013 I took 5-asa for only 3 months and ended up in hospital with a severe liver infection. Also, a few months later I tried taking Wellbutin (as preparation to FTs) for 1 month only and developed UTI which went to the kidney. I am therefore very cautious about taking medication. However, I've now decided to try and get something strong for the inflammation. My GI is careful and wants me to do the medical tests before prescribing anything else and has given me a referral for a blood test. I hope she doesn't insist on a colonoscopy as well as I don't want to upset the process of the FTs.

Rebel, I would like to know more about your experience with FTs. You mentioned reporting it at crohnsforum. Could you please be more precise? My believe is that UC always involves "bacterial issues" otherwise I wouldn't be doing FTs. To be honest, I've tried but could not understand your post. First, I can't understand the way you categorized the types of UC. On one hand you wrote that the cases that can be benefited from FTs are the ones that involves "bacterial issues" but on the other hand you wrote that in the cases that cannot be aided by this treatment "pathogenic bacteria thrive". Anyway, according to what you've written, I should be fine with this treatment - my UC was 100% caused by a dose of antibiotics. I had no problems what so ever with my digestive system prior to taking those bloody pills 15 years ago! Also I don't understand what you meant by writing "...when your colon gets inflamed or ulcerated, due to the inflammation..."?

Kamakaya: I've just moved the entry of your daughter to the success stories list. However there is quite a bit of information missing. I hope she no longer suffers from the abdominal pain.

Twiggs and Nenuss: If you are still there, could you please send updates. I hope you can also be places in the top list!

As for my weekly update: Again, I've had 3 infusions during this week - Mon, Thur, Fri. I'm better today. I plan to carry on with the potatoes and eggs diet for another few days. Interestingly, I've recently started to suffer from nausea, which isn't a familiar symptom to me. I noticed that the nausea starts about a couple of hours after I eat potatoes after I'd had the morning infusion. My theory is that it is due to the reaction of my donor's bacteria to potatoes. As written before she hasn't had carbohydrates for many years now. However, this was better after yesterday's infusion and perhaps it is a good sign of colonization.

Probably, during the next two weeks, due to a planned holiday, I will only be able to have 2 infusions per week but we shall see.

To all of you I wish a full recovery from this dreadful disease.

Sharron

Post Edited (sharron19) : 10/30/2015 11:22:36 PM (GMT-6)

Maybe you should try SCD while doing transplants.