Hello, I’m from Austria.
My husband has had aggressive bile duct cancer since 2023. At that time it was already relatively large, about 4.5 cm and a second tumor around 3 cm. We treated only alternatively and alone at home because they only offered a major liver surgery to delay things. He refused that and went home the next day.
The tumors actually shrank within a few weeks to about 7 mm according to MRI. Doctors were speechless. It grew again somewhat, we reduced it again.
Last December there was an escalation. Sudden jaundice, stent infection, 2 broken stents. The doctors had forgotten to inform him that the stent should only stay in for a maximum of 3 months! He had it 25 months... Severe cholangitis, CRP 10. He almost died and was saved with many antibiotic infusions.
Unfortunately it started again soon after. A bile duct swab repeatedly showed Enterococcus, E. coli and Klebsiella. May be a mirror from his gut microbiome. Antibiotics then hardly worked anymore and I said we will now simply do a fecal transplant.
I was the donor. I have not taken antibiotics for 27 years, I am now 50 years old and had them maybe 8 times briefly as a child. I have no illnesses, no depression, no gut problems, take no medication, have 1–2 bowel movements daily, well formed, no bloating at all.
1st transplant: 26.2.26
One day after stopping antibiotics he felt ill again and fever rised also as usual. Now we started with 50 g stool from me in 150 ml distilled water with some salt, given as enema. At first he was like sedated, completely exhausted for hours, slept the whole night and the whole next day. I was extremely worried.
In the evening he had a slight temperature around 38°C, but only for about 1 hour, then extreme improvement!
He had pain in the ascending colon for 20 years. I suspect this plays a role in bile duct cancer as some studies now suggest (colibactin and DNA damage). https://www.mdpi.com/2528306
Finally he had appetite again, no fever, slight weight gain, no signs of cholangitis, no more mucus in stool. Stool smell was sometimes extremely strong. Much more energy overall.
6.3.26: new stent change. CRP was already the lowest ever at 4 without any antibiotics. Some liver values suddenly normalized. Only GGT remained high.
Very interesting: He now only eats what I eat. I am vegetarian, mostly vegan. He used to love meat, now he is disgusted by it since the transplant. He hates green salad - as I.
Blood tests now show a completely normal immune system, everything in range, several liver values dropped strongly. CRP is now only 2.8, but GGT still high. We don't know why, may be also a new stent problem?!
One for sure: The transplant clearly helps against cholangitis, better than any antibiotics!
Only tumor markers have increased (but that does not mean much, because when things were worst last year and the tumor had grown, they were negative. Maybe this is still from inflammation or the transplant itself?).
25.3.26: second transplant
Strongest reaction so far. He slept again one night and one full day, and since then lower abdominal pain and some bloating.
31.3.26 third transplant: in the evening again 38°C, but otherwise no symptoms. Urine clear, normal skin color, normal appetite.
Note: Tumor is currently about the same size as at the beginning in 2023, around 4 cm.
My questions:
Can anyone estimate where this abdominal cramping comes from? Sometimes he also has gas. Maybe from to much prevotella? I love fruits and vegetables and eat them daily in very huge amounts.
I personally do not have such symptoms im my gut. I have no IBS, always flat abdomen, no skin issues, nothing noticeable. My blood values are all normal.
I was planning to continue weekly, because one study on cholangitis mentioned around 8 transplants until no relapses occurred. Now he fears further cramps because they occus direct after the transplantation. Maybe we should try capsules to reach the bile duct better?
We tried first other bacteria as lactobacillus acidophilus oder plantarum, sacc. boularddi etc. but they worked not enough.
I’m very grateful this forum exists, because otherwise there is almost no information available. I'm thankful for every idea or link!
My husband has had aggressive bile duct cancer since 2023. At that time it was already relatively large, about 4.5 cm and a second tumor around 3 cm. We treated only alternatively and alone at home because they only offered a major liver surgery to delay things. He refused that and went home the next day.
The tumors actually shrank within a few weeks to about 7 mm according to MRI. Doctors were speechless. It grew again somewhat, we reduced it again.
Last December there was an escalation. Sudden jaundice, stent infection, 2 broken stents. The doctors had forgotten to inform him that the stent should only stay in for a maximum of 3 months! He had it 25 months... Severe cholangitis, CRP 10. He almost died and was saved with many antibiotic infusions.
Unfortunately it started again soon after. A bile duct swab repeatedly showed Enterococcus, E. coli and Klebsiella. May be a mirror from his gut microbiome. Antibiotics then hardly worked anymore and I said we will now simply do a fecal transplant.
I was the donor. I have not taken antibiotics for 27 years, I am now 50 years old and had them maybe 8 times briefly as a child. I have no illnesses, no depression, no gut problems, take no medication, have 1–2 bowel movements daily, well formed, no bloating at all.
1st transplant: 26.2.26
One day after stopping antibiotics he felt ill again and fever rised also as usual. Now we started with 50 g stool from me in 150 ml distilled water with some salt, given as enema. At first he was like sedated, completely exhausted for hours, slept the whole night and the whole next day. I was extremely worried.
In the evening he had a slight temperature around 38°C, but only for about 1 hour, then extreme improvement!
He had pain in the ascending colon for 20 years. I suspect this plays a role in bile duct cancer as some studies now suggest (colibactin and DNA damage). https://www.mdpi.com/2528306
Finally he had appetite again, no fever, slight weight gain, no signs of cholangitis, no more mucus in stool. Stool smell was sometimes extremely strong. Much more energy overall.
6.3.26: new stent change. CRP was already the lowest ever at 4 without any antibiotics. Some liver values suddenly normalized. Only GGT remained high.
Very interesting: He now only eats what I eat. I am vegetarian, mostly vegan. He used to love meat, now he is disgusted by it since the transplant. He hates green salad - as I.
Blood tests now show a completely normal immune system, everything in range, several liver values dropped strongly. CRP is now only 2.8, but GGT still high. We don't know why, may be also a new stent problem?!
One for sure: The transplant clearly helps against cholangitis, better than any antibiotics!
Only tumor markers have increased (but that does not mean much, because when things were worst last year and the tumor had grown, they were negative. Maybe this is still from inflammation or the transplant itself?).
25.3.26: second transplant
Strongest reaction so far. He slept again one night and one full day, and since then lower abdominal pain and some bloating.
31.3.26 third transplant: in the evening again 38°C, but otherwise no symptoms. Urine clear, normal skin color, normal appetite.
Note: Tumor is currently about the same size as at the beginning in 2023, around 4 cm.
My questions:
Can anyone estimate where this abdominal cramping comes from? Sometimes he also has gas. Maybe from to much prevotella? I love fruits and vegetables and eat them daily in very huge amounts.
I personally do not have such symptoms im my gut. I have no IBS, always flat abdomen, no skin issues, nothing noticeable. My blood values are all normal.
I was planning to continue weekly, because one study on cholangitis mentioned around 8 transplants until no relapses occurred. Now he fears further cramps because they occus direct after the transplantation. Maybe we should try capsules to reach the bile duct better?
We tried first other bacteria as lactobacillus acidophilus oder plantarum, sacc. boularddi etc. but they worked not enough.
I’m very grateful this forum exists, because otherwise there is almost no information available. I'm thankful for every idea or link!
