Patient’s voice: “I’ve had many different treatments, but the transplant was the first time I saw a clear change.”

Cholinergic urticaria received patient feedback.

The itching and urticaria (redness) of cholinergic urticaria have subsided a bit, but the tingling pain has intensified.” But after all the different treatments I have had, the transplant was the first time I saw a clear change.” He answered.

[Profile]
Disease name: Cholinergic urticaria
Transplant period: August 24, 2022 – October 17, 2022
Number of transplants: 6
Transplant provider: Luke’s Ashiya Clinic

Q1. WHAT MADE YOU DECIDE TO UNDERGO INTESTINAL FLORA TRANSPLANTATION AT OUR INSTITUTE?

We have done a lot of things, but because we can no longer find any other treatment .

Q2. DID YOU RECEIVE SUFFICIENT EXPLANATION AND SUPPORT FROM THE MEDICAL INSTITUTION FROM THE TIME OF YOUR TRANSPLANT APPLICATION UNTIL AFTER THE TRANSPLANT WAS COMPLETED?

I would have liked to have received a detailed explanation directly from the study group office as to why they chose that donor and how the donor’s bacteria would affect me. (I contacted the study group office directly, but the explanation was given only by the medical institution.)

Q3. HOW HAVE YOUR SYMPTOMS CHANGED AFTER THE TRANSPLANT?

As I recall, after the fifth transplant, changes were apparent. The itching and urticaria (redness) of cholinergic urticaria calmed down a little. But the tingling pain intensified. It was like there was a change, both good and bad. However, after many different treatments, the transplant was the only one that showed obvious changes for the first time.

Q4. IN ORDER TO MAINTAIN THE INTESTINAL BACTERIA THAT BECAME YOUR FRIENDS THROUGH TRANSPLANTATION, PLEASE TELL US ABOUT ANY LIFESTYLE HABITS OR WAYS OF THINKING THAT YOU ARE TRYING TO MAINTAIN AFTER TRANSPLANTATION.

Do not take artificial sweeteners or other additives. Be careful with your diet so as not to upset your stomach.

Q5. WHAT WOULD YOU SAY TO THOSE WHO ARE GOING TO HAVE A TRANSPLANT OR ARE UNSURE ABOUT IT?

You should do this after you have tried all other treatment options except transplantation. It is only a last resort. It may turn out for the better or it may turn out for the worse. But for better or worse, in my case, there was a change, so I think it is worth considering a transplant.

Q6. PLEASE GIVE A MESSAGE TO THE DONOR WHO PROVIDED THE STOOL FOR THE TRANSPLANT.

Thank you for the healthy bacteria. I think many people will be saved. Thank you very much.

Q7. PLEASE LET US KNOW ANY OTHER COMMENTS, OPINIONS, OR REQUESTS YOU MAY HAVE.

Anyway, the cost is very high. Can you do something about it? Also, I would have liked to receive explanations about transplantation not only from doctors, but also from the research group secretariat, people who are involved in the process, and from multiple people (even if the explanations are the same). Patients are quite anxious.