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counting success stories with fts (continued)

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Ulcerative Colitis
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Posted 3/6/2015 7:25 AM (GMT 0)
Hi Curl,

Great news. I love your updates.

I will add it to the your entry on the list.

Best wishes,

Sharron
Posted 3/25/2015 10:10 AM (GMT 0)
I'm still doing well! And I'm 18 weeks pregnant also! I did 10 FMT treatments in Aug 2012. I still take 4 Lialda and VSL#3DS and alpha lipoic acid.
Posted 3/25/2015 10:14 AM (GMT 0)
I just saw on the list that my donor (husband) age was not recorded. He is 4 years older than me. He was one month shy of 40 when we did the treatments. He is also a tall thin build. 6'2" about 180 lbs.
Posted 3/28/2015 2:30 PM (GMT 0)
Thanks a lot LoLil, I will update your information. I am very glad to hear you are still doing well. Please write again with more updates.

Wishing you easy pregnancy and delivery.

Sharron
Posted 4/4/2015 8:04 AM (GMT 0)
Just to inform that I've had to delay my FTs again. Unfortunately, when I realized that it wouldn't happen as scheduled, I felt bad about it and started engaging in the self destructive behaviour of eating food which I love but cannot tolerate. Mainly raw fruit and vegetables, and different type of nuts. The horrible symptoms are back again...I can definitely see the effect of the inflammation on my lower back.


I hope you continue to have positive results with FTs and don't forget to write about it on this thread.

A full recovery to you all,

Sharron

Post Edited (sharron19) : 5/22/2015 9:48:32 PM (GMT-6)

Posted 4/4/2015 12:51 PM (GMT 0)
:-(

hope you don't suffer too much and can get back on target soon -
Posted 4/5/2015 10:38 PM (GMT 0)
try a "detox" with really strict low residue diet, nothing raw, and step by step things will get back to normal :)
Posted 4/8/2015 6:27 PM (GMT 0)
Want to share my daughter's status. We started FMT in middle of Dec last year. For the 1st time her ESR has come as normal. She still has abdominal pain some days. As of now, no blood and very well formed stools.

Will keep everyone updated as it goes.
Posted 4/8/2015 7:50 PM (GMT 0)
i'm happy to hear it kamakya, fingers crossed! :)
Posted 4/9/2015 7:34 PM (GMT 0)
Was so happy to read your update kamakya. I knew the ESR value would get to the right level eventually. I strongly believe that when the donation is good it's only a matter of time for the healing to happen. Some people just need to do it for a very long time. I will update your entry on the list. Could you please let us know how often you've administrated the infusions and what medication she is now on. If she is only on a low dose maintenance meds perhaps I can move her up to the the success list.

Stud and Ewa, thanks for your support. I feel low at the moment because of the deterioration of the condition which started about 3 years ago, but also because I could not do the FTs at the beginning of this month as planned.

Would love to get more updates from the people on the lists and new stories from other people.

Best luck with FTs

Sharron

Post Edited (sharron19) : 6/13/2015 11:57:18 AM (GMT-6)

Posted 4/10/2015 5:10 AM (GMT 0)
Hi Kamakya, I've added your wonderful update to the list and I'm looking forward to add more information with regards to her current meds intake and the frequency of FTs.

We haven't heard from twiggs and Nenuss for a while now. I hope the process of healing is still taking place for both of them.

Sharron

Post Edited (sharron19) : 5/22/2015 9:52:49 PM (GMT-6)

Posted 4/10/2015 1:14 PM (GMT 0)
She is still on 25Mg of Aza and 2G of Pentasa daily. She was on these drugs before her FMT and her doc does not want to take her out of these drugs yet.

We have stopped FMT last few weeks as of now. She still has abdominal pain and we are closely monitoring her. I may stay with these drugs for now and by the end of this year, she will have her scopes. If her scopes come out clean, and she gains weight and has no abdominal pain then I will try to remove her daily Aza and keep her only on Pentasa. It is still very early days for us. We have seen improvements and are taking one day at a time.
Posted 4/10/2015 11:54 PM (GMT 0)
What happened in LukyLinky; this was the last update he gave that I saw on FMT:

"LuckyLindy
Regular Member

Email Address Not AvailablePersonal Homepage Not Available
Date Joined Feb 2009
Total Posts : 226
Posted 11/18/2009 1:33 AM (GMT -6) Quote This PostIgnore Posts From LuckyLindy.alert An Admin about This Post.
Update: It's been over 5 weeks for me, and I'm still doing well. I've noticed that I cannot go hog wild and eat entirely normal, but I now eat a bowl of cereal every day and other carbs that I could never touch. I've had 2 or 3 days with D, but no blood. Definitely worth every moment for me, and I plan to supplement with a full 5 day treatment at some point in the future.
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)"

Also,
subdued was another user who tried it and stopped posting. Subdued stated it worked then a flare occurred after then subdued used diet and probiotics to regain remission (to me that indicates subdued was easy to get rid of the flare).

I wonder if most FMT success are easy (mild to mdoerate cases) since it's been stated over and over that your inflammation needs to be reduced before trying for better success. One said best to try while in remission which seems quite silly (meaning, I'm in a sort of remission and would not notice FMT helping since, I''m in remission). I sure wouldn't risk going off Remicade and Imuran to try this although I wish I could buut entirely too risky for me.

This just came along too late for me - It's been used for 50 years but only seemed to catch on wrt UC since 2009. rats!

Not seeing a lot of successes compared to other so it would be great having some other way to track successes and failures - for now it's anecdotal which is unfortunate.

Still say clean out the toilet (sterile and rinsed well) and fill with saline then you use a hand mixer in the sterile toilet to mix your brew right after donor goes. Suck up the mixture in a emptied and rinsed out enema containers (stoppers removed) then after fills you flush it all down. It would contain it all to the bathroom and not ruin a blender or stink up your house.
Posted 4/11/2015 1:08 AM (GMT 0)
Also user "churey360" tried it and said it failed
Posted 4/11/2015 5:07 PM (GMT 0)
Thanks Burli, I wish I could find a way to convince more users of FTs to report on this thread and to keep updating us with their situations.

Kamakya, I will enter the information about the continuation of the drug intake. Could you please write a summary of the FT infusions. When started, stoppen and frequencies used. I hope and pray that the scope at the end of the year will show her cleared of UC.

Best wishes,

Sharron
Posted 4/11/2015 7:51 PM (GMT 0)
Worked as reported for fecaltransplantworks

See Post Here

he said it cured his wife and she was on Remicade at once per month dose and steroid dependant.

see a lot on this about using a relative as a donor and Old Mike said to not use a blender as that introduces oxygen but successes have apparently occurred using blenders.

key seems to be using fresh as possible and small ('don't need a lot' say several)

mixing into a thick paint consistency

5-10 treatments are commonly reported with many not having used antibiotics but some seem to get well with 1-3 transplants

Seems worth a shot. I really cannot risk coming off this Imuran/Remicade but do wish there was a better way. I could ask my mother (or father).

Which is more awkward on that?

So would their bacteria multiply and remain in me even though I have bowel movements?
Posted 4/11/2015 8:30 PM (GMT 0)
Wow, Burli this is a magnificine success story. Poor lady she'd had suffered so much before the FT. I hope she is still doing well. I wish I could get her husband to write on this thread and update us on her condition. Four and a half years have passed since she had the FT!

With regards to your parents, since it will be equally akward using anyone of them, if I were you I would just try either!

However, if you come round to do it don't forget to let us hear about it...

Wishing you the CURE.

Sharron

Post Edited (sharron19) : 5/22/2015 9:56:51 PM (GMT-6)

Posted 4/13/2015 4:02 AM (GMT 0)
A blender does introduce oxygen killing off the anaerobix bacteria, but you'll still have some if you prepare everything pretty quickly. Make sure to submerge the stool in saline as soon as you can. No way to avoid oxygen completely as you'll have to blend it.
Posted 4/26/2015 6:00 AM (GMT 0)
Hi, I'm still flaring and feel quite bad. It's been like that for quite a while now. I'm very careful with what I eat but at the moment it seems like everything agravates my colon. I have been off work for some time and I hope I will be able to get back tomorrow morning. Somehow life must go on. I really don't want to try medication again after the the 3 month intake of 5-asa 2 yrs ago nearly finished my liver. My fear of conventional meds is also caused by the fact that this disease started upon taking antibiotics.

Sorry for moaning and groaning but I just felt that I had to share...

However, despite the 15 years of tough struggling with this horrible disease I have not lost hope in full recovery! I'm sure many of you would say that I'm just an idealist, and for very short moments, I do sometimes agree.

Best wishes,

Sharron

Post Edited (sharron19) : 5/22/2015 3:32:37 PM (GMT-6)

Posted 5/16/2015 4:48 PM (GMT 0)
I have great news, if everything goes according to plans, I will be starting the FTs in a few days time! My friend (and neighbour), who was found not to be a suitable donor, will have a guest from abroad staying with her for about 6 weeks and she wants to be my donor. I was just notified that the results of her stool and blood tests are fine! She is arriving on Tuesday. I have been waiting for this moment for a very long time.

I'm flaring at the moment and feel very weak. My lower back is sore and I find it difficult to walk up stairs because of the inflammation in the knees. It's not great to try the FTs when the colon is so badly inflamed but I will not miss my chance...

Just a question, anyone knows were to order the large enema syringes? In the past I've had clogging problems using the bucket set.

Thanks,

Sharron

Post Edited (sharron19) : 5/22/2015 3:34:05 PM (GMT-6)

Posted 5/19/2015 10:28 AM (GMT 0)
I hope to start the FTs on Thursday evening. My colon is still quite bad and I hope I can manage to fast and just drink the liquid of the boiled vegetables until the first transplant. I have been taking a lot of Interfase over the past week (maybe 2 weeks) and I plan to take the L-glutamine while doing the transplants.

I still haven't managed to find the plastic syringes so if anyone knows of a company that can ship it quickly I will appreciate it greatly.

Wishing you a full recovery.

Sharron

Post Edited (sharron19) : 6/13/2015 12:01:25 PM (GMT-6)

Posted 5/22/2015 3:01 AM (GMT 0)
Update: I administrated the first infusion last night at 10 o'clock and I still have it in me, 8 hours later (It's 6am here just now). I didn't manage the full fast, as planned, prior to FTs, but ate very very little over the past week and only some chicken, boiled vegetables and tahini. Yesterday morning, just before the first infusion, my gut was starting to get better for the first time in a long time. After a debate with myself I've decided to carry on taking the Interface during the enemas. I hope it won't interfere with the treatment. Also, Using mainly my intuition (gut feeling) I've just asked my donor to try and avoid dairy and meat.

I'm now going to add myself to the list which I myself created so long ago. This list can be found on page 10 of this thread. I will put my name under the title "In Progress" but I hope to move it eventually, to the "successful stories".

To remind you all, we are trying to conduct a kind of longitudinal research based on self reported experiences with FTs. Therefore the follow-ups, the updates sent from the different participates, are very crucial.

Wishing you all a complete recovery.

Sharron

Post Edited (sharron19) : 5/22/2015 10:01:24 PM (GMT-6)

Posted 5/22/2015 11:24 PM (GMT 0)
I wish you all possible luck and keep my fingers crossed that everything will turn out great :)
Posted 5/24/2015 4:54 AM (GMT 0)
Thanks a lot ewa. Do you think of trying it yourself?

Update:

1st infusion - Thursday 21/5/15 at 22:00. BM 20 hrs later, on Friday 18:00 and again on Saturday at 8:30.

2nd infusion - Saturday 23/5/15 at 11:00. Haven't had a bowel movement since then yet!

Comments:
The donation was very small on Saturday because my donor didn't understand the importance of the volume and flashed part of it down the toilet...
I was lucky to have a late evening stool for 1st infusion but unfortunately it seems like her body is adjusting to the local time here and is going back to the habit of morning stools. Which means that I might miss some FTs during the week due to work schedule.
I put two quite thick books underneath the two legs of the end of my bed to create an angle that might help the bacteria travel up the colon after the infusion.
I want to keep the very restricted diet during the initial part of the treatment to allow the donor's bacteria to focus of colonising and not on surviving the attacks.
I keep taking 2 capsules of Interface every few hours.

Results:
I can't say that there is a definite improvement yet. I'm badly bloated and there is a lot of noise coming from my gut. Also, shortly before the first FTs I'd managed to calm down the flame by consuming very little food and only what is known to be more agreeable to my digestive tract. I suppose I will know more when I start eating normal food.
There is much less pain from my lower back but my knees still feel badly inflamed.
I will write updates every few days.

Best wishes,

Sharron

Post Edited (sharron19) : 5/24/2015 11:45:59 AM (GMT-6)

Posted 5/24/2015 5:54 PM (GMT 0)
another update:

3rd infusion - Sunday 24/5/14 at 9:00.

Started to feel bad today. Mainly pain from abdomen, very weak and feel feverish. BM at 17:00 which was pretty bad! I'm not going to stop the infusions right now but if the situation doesn't improve I will probably have to space them out a bit.

Best wishes,

Sharron

Post Edited (sharron19) : 5/24/2015 11:45:35 PM (GMT-6)

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