counting success stories with fts (continued)

Update:

24th May, Sunday: after the 3rd infusion continued to feel very bad. At 17:00 I had a typically BM of a vey bad flare. All day I was very weak and bloated.

I think it may had been caused by eating a few almonds and dates on the evening of the day before. Something I can't have for 15 years without starting a flare. I decided to eat very little for a while and to stick to the restricted diet of boiled vegetables, eggs and chicken for a little while longer.

25th May, Monday: Diarrhoea in the morning and an hour later I administrated the 4th infusion. I could not retain it at all and it ended up in a big mess. ate very little that day.

26th May, Tuesday: I administrated my 6th infusion early in the morning. No BM for this day. I ate a little more than the day before but only boiled eggs, vegetables and some tahini. I decided to stop taking the Interface.

27th May, Wednesday: I had a BM very early in the morning. It was starting to get better. about half an hour later I administrated my 7th infusion. I had to leave the house straight afterward and had no problem retaining it in all day and all night. Still careful with what I eat. I had some chips outside but that has never been know to be an aggravator of a flare.

I can't tell yet whether the FTs have any effect on my condition. I know and feel the disease is still there.

I will write with more updates soon.

Best wishes,

Sharron

Post Edited (sharron19) : 5/28/2015 9:56:50 AM (GMT-6)

Thanks stud.

What a rough weekend with FTs...

28th May, Thursday: BM early in the morning, better than yesterday but still not normal. 7th infusion 3 hours later. Ate more than usual at that day but only boiled vegetables, grilled chicken and home made tahini sauce (tahini, lemon, garlic, parsley and water).

29th May, Friday: again an early BM which was rather small but solid and I administrated the 8th infusion an hour later. Later on started to feel bad, extremely bloated and tired.

30th May, Saturday: from the very early hours of the morning (2:30am ) until late evening I visited the toilet many many times with very bad diarrhoea. I was very weak and feverish. I ate only 3 boiled eggs. My donor did not have a BM that day and I was glad for that. I felt down and thought about stopping the infusions. However, towards the late evening, I decided to give it some more time and to try to fast or have very little food during the next few days. If it doesn't work I'll have to call the all thing off.

31st May, Sunday: feeling better in morning when the gut feels completely empty. 9th infusion at 9am. so far so good, I'm managing to retain it in and have not had anything to eat yet. Just drank the water from the boiled vegetables.

I whish I knew why FTs do not work for me. Perhaps the disease is too old and severe, perhaps it's because I'm not on the meds.

Wishing a good therapy with FTs,

Sharron

Post Edited (sharron19) : 6/1/2015 2:08:20 AM (GMT-6)

Still doing the FTs and want to let you know how I'm getting on.

1st June 2015, Monday: BM early in the morning and the 10th FT an hour later. Second BM late in the evening. Felt bloated and BMs were more like constipation. Noise and discomfort from colon. Started to feel a bit sick in the evening. Ate nothing again today just drank the water from boiled herbs and vegetables.

2nd June 2015, Tuesday: Bloated, am not sure what is causing it, ate nothing since the 3 eggs on Saturday. Despite the many doubts decided to carry-on for a little bit longer. BM early in the morning - constipation. Feels like this old disease fights for its life, for its survival. Perhaps my strong will and desperation will eventually defeat it. All day drank the water from boiled veg and ate a very small piece of chicken breast. 11th Infusion late in the evening

3rd June 2015, Wednesday: No donation/infusion today. Started to feel uncomfortable with this long fast and ate french fries at work. Ate boiled veg, eggs, tahini later on at home.

4th June 2015, Thursday: ate boiled eggs for breakfast. BM in the morning and the 12th Infusion half an hour later. Stopped using the blender! Ate boiled vegs and chicken during the day. Feels a bit better but the disease is there…

5th June 2015, Friday: A much better BM in the morning but still far from normal and the 13th infusion about half an hour later. Food as yesterday. Started to feel bad again around noon and in the afternoon with urges, bloated and diahrroea in the afternoon. Depressed, will it ever work?

6th June 2015, Saturday: a better BM in the morning. Not diarrhoea. Late donation – 14th infusion late in the evening. Ate the usual: boiled veg, chicken and eggs. Felt bloated but better than last weekend.

7th June, today – was awake during the night with the pain from the colon. Not too bad though. BM in the morning. Not diarrhea but not normal either (if I remember what that means…). I ate the normal boring food and can't wait to have something else.

I will write again in a few days. Meanwhile I wish you a great success with FTs.

Sharron

Post Edited (sharron19) : 6/8/2015 2:18:22 AM (GMT-6)

More updates:

Over the last week I have done an FT infusion every day apart from Last Sunday and Tuesday when my donor had no BMs. On Thursday and today (Saturday) I had diarroea and felt weak. (added later: Saturday was actually another though day. After the infusion I went back to bed feeling very weak, bloated and feverish and slept until the early afternoon when I had diarrhroea). So far from the beginning of the infusions and before that, I'd kept to the very restricted diet until a few hours ago, when I had some cherries and grapes (lovely).

To sum it up: I still can't tell if it is working for me. All together I performed 19 infusions in just over 3 weeks. The last 6 stool samples looked much better than the earlier ones in colour and consistency. I've never had a problem retaining the infusion for a long time but recently my body also seems to take in the liquid much faster than before. Perhaps this is a good sign. So far, over the 3 weeks of treatment I've had mostly daily solid but not great BMs, but I would expect it to be that way due to the severe restriction on diet and the intervals of few day clear liquid fasts. I feel bloated after eating food and during the nights but sometimes better in the mornings. I thought I would do better by now and would be able to have some fresh vegetables. I guess because I'm on no medication the process is much slower or perhaps cannot even start. Who knows.

I wil send more updates in a few days. Meanwhile I wish you all a great success with FTs.

Best wishes,

Sharron

Post Edited (sharron19) : 6/15/2015 12:05:31 PM (GMT-6)

Hi Sharron,
Happy to hear FT is slowly making a difference in you. As Ewa suggested, please stick to fully cooked and pureed vegetables over fresh vegetables.

Best wishes..

Hi, just want to write my final words about my recent experience with FTs.

On Tuesday morning I administrated the final infusion and in the evening my donor flew back home. On the whole I have done 29 enemas in nearly 6 weeks. Unfortunately I'm not sure the treatment has had a positive effect on my condition. from my last experience of a flare, which was during the treatment, I've kept to the strict diet of boiled vegetables, eggs and chicken (I also limit the tahini intake to 1 tbs a day). So my gut is not too bad at the moment but I can feel the disease is there. The colon doesn't bother me too much but I think this is probable due to the food restriction. Also I still suffer from lower backache, weak knees and general fatigue which all appeared after the onset of the colitis.

I'm not finished with FTs yet and in fact I'm planning to start it again with a different donor probably at the end of this month. I might take some medicine this time, before, during and after the FTs. I've tried to avoid it so far because of my past bad reaction to it.

As from this evening I'm also starting to take the InterFase again.

I might try to eat some fresh vegetables soon, just to learn if the FTs did make any alteration to the colon after all. Perhaps the changes in bacteria balance is happening now! I should do it some time before the first infusion of my second donor to allow the predicted flare to heal.

I'm very thankful to my vey very very kind and caring donor.

I will update your again soon.

Best wishes,

Sharron

Post Edited (sharron19) : 7/25/2015 11:41:27 AM (GMT-6)

sharron19 said...
I have not decided whether to take medicine, such as Imuran, before I start the second round probably at the end of this month. I just have no idea how long it takes for the drug to have an effect.

Sharron, Imuran takes at least 2 months to reach therapeutic levels in your body.

Hi, I'm back again and this time with a new donor. I'm planning to start the infusion next Thursday, July 30th.

Juts to recap, I've recently done 29 FTs with no much success. The last time I had a scope (Dec 2013) my condition was defined as moderate to severe and the flare covered about 80cm of the colon from the rectum upward. I'm not on any medication, as these triggered the disease (antibiotics) and nearly caused me to lose my liver (3 months of 5-asa). I first fell ill 15 years ago and for the first 12 years I'd managed to control the condition with a very strict diet. However, from 2012 my condition got deteriorated from unknown reason and since then I can barely eat anything without getting to the stage of losing control over my BMs. Apart from the usual symptoms related directly to the colon I suffer from fatigue, very weak knees and pain from my lower back.

I was so lucky to have such a kind and compassionate donor who came to stay with my friends/neighbours. I was very impressed by her willing to do so much in order to help another human being whom she'd never met before.

This round is going to be more complicated. I'll have to travel every day back and forward to my donor's house who lives in a different city. I'll have to come back home to do some work and some care for my son who is nearly a full grown-up now. I don't own a car so each way might take about 2 hours by public transport. Luckily I didn't take time off work with the first donor so I can quite easily take it now for this round of infusions.

Now, I just hope the reason for the failure was the unsuitability of the donor.

Guardian, I have not heard from you or saw anything written by you for a long time now. I really hope you are doing well. You'd always been a great source of support to me with regards to this therapy.

Best wishes,

Sharron

Post Edited (sharron19) : 10/30/2015 11:03:54 PM (GMT-6)

Kamakya...so happy to hear the remission word!! Is she still on any meds?

Tx a lot Bloom93. Your advice at right time was god sent for us.

She is still on Pentasa and 6MP (even though this combination before FMT did not help her much). Her GI does not want to remove them.

Before FMT
========
Her ESR was 116 and Calprotectin was 1400

During FMT
=======

her ESR had dropped to 16 (her best ever) and calprotectin 300

We stopped doing FMT at this stage.


After 2 months her blood report was

ESR 25 and Calprotectin had increased to 424. We are now doing some more FMTs to see if it will reduce her ESR numbers further.

Also on another note I just got off the phone with a reporter who is doing a news segment for a major online news magazine about Fecal Microbiota Transplant (FMT.) The reporter is looking for people who have done or are in the process of doing FMTs who are willing to share their experiences as part of the news story. Please contact me if you are interested in participating.

One week into the treatment and I'm just now starting to feel slightly better. I'm still restricting the diet. I will try to keep it going on a daily infusion bases for at least one more week and if by then there will be a significant improvement I will consider reducing the frequency or/and adding a small amount of fresh vegetables.

Best wishes,

Sharron

Fruits can be high in histamine, the riper the fruit the more histamine. Many UC'rs are low on the digestive enzyme DAO, which helps to metabolize excess dietary histamines. An overdose in histamines can lead to worsening UC symptoms. While I believe successful FMT treatments for UC can greatly improve a patient's condition, in almost all cases it will never be a cure and the underlying root causes will still be there, such as the body's underproduction of DAO. Since avoiding high histamine foods or taking DAO supplements before eating them I have done much better. Just something you may want to check into in addition to doing the FT's.