Nikhil Jayswal was just 20 when he was diagnosed with Crohn’s Disease, a type of inflammatory bowel disease (IBD) that has no known cure. He was prescribed a mix of corticosteroids and dietary restrictions which sent the condition in remission, but not for long.
A little over a year later the symptoms of IBD were back. From debilitating abdominal pain, weight loss and frequent diarrhoea, Jayswal suffered for another three years, before opting for a subtotal colectomy and formation of Ileostomy surgery.
The surgery involved removing his entire large intestine save for 10 centimetres of his upper rectum. His small intestine too was taken out and sewn onto the skin of his stomach, where a pouch was attached to collect stool from the small intestine.
He says that while the surgery has significantly improved his condition, he continues to suffer from occasional flare-ups. Crohn’s Disease can flare up at any point, causing him to lose weeks of his life at a stretch – confining him to his room.
“It impacts everything – your education, career, travel, social relationships,” says Jayswal.
But for others with Crohn’s disease – which can affect them anywhere from their mouth to their rectum – the prospect of undergoing the surgery is not an option. Not only is it expensive, but it comes with the stigma of having to constantly worry about the stoma-bag into which their stool is drained.
Jayswal too, who recently founded a non-profit for supporting patients with IBD, says he was worried about it initially. But after having lived with it for a few years and having gotten more comfortable with his body’s response, he says he’s able to do far more than when he was on just medication.
But soon, there could be another option.
Medical researchers across the world have been finding significant improvement of symptoms of those suffering from IBD (whether Crohn’s disease or Ulcerative Colitis) using a technique called Faecal Microbiota Transplant or FMT in short. The treatment involves the transplantation of processed stool from a heathy donor to an individual suffering from IBD and can bring up the level of healthy gut bacteria.
While not approved as a treatment for any condition save for Clostridium difficile, which typically occurs in individuals who have been hospitalised for long periods and has prolonged use of antibiotics, FMT is understood to act on improving the diversity of gut bacteria and reduce the symptoms of IBD.
Dr Vineet Ahuja, a professor of gastroenterology at the All-India Institute of Medical Sciences in Delhi, whose lab has conducted around 300 FMT procedures as part of clinical trials for IBD and IBS, says that the technique has the potential to become a mainline treatment for the dreaded gut conditions, but with care.
“It (FMT) is still in the realm of medical research and has not been approved by any regulatory authorities for regular medical use,” says Dr Ahuja, adding that three to four FMT procedures can help bring symptoms under control of a person with mild-to-moderate IBD. “However, it doesn’t cure the disease, and the benefits of FMT have been seen to diminish over time.”
But Ahuja adds that immunosuppressants, which are today one of the mainline treatments or persons with IBD, are lifelong treatments as well. In the trials that have been conducted so far, FMT has proven to have fewer side effects than other treatments, but more research still needs to be done before it can be approved, he added.
The gut microbiome link
Over the last two decades, the gut microbiome – a complex ecosystem of trillions of microbes including bacteria, fungi and virus that exists in our guts – has been implicated in several diseases. A reduction in diversity of gut microbes has been seen in individuals suffering from everything from anxiety and stress to those with neurological conditions and even heart disease.
In those suffering from IBD, research has shown that their gut microbe diversity is significantly affected. Dr Ajit Sood, who heads the department of gastroenterology at Dayanand Medical College and Hospital in Ludhiana, likens it to a chicken and egg situation as it isn’t clear yet whether dysbiosis (an imbalance in the gut microbial community) is a cause of IBD, or if IBD is causing this imbalance.
Surprisingly, a similar conundrum exists even for immunosuppressant drugs that are today the mainstay for treating IBD.
“Most of the drugs which are being invented or evaluated (to treat IBD), are focused on correcting the dysregulated immune system. Here too there is a similar concept of whether the dysregulated immune system is a consequence of IBD, or its cause,” says Dr Sood. “But it has been established that if we correct a dysregulated immune system, patients do show a good response.”
Dr Ahuja too agrees, saying that it has not been conclusively proven that gut microbiome changes are the cause of IBD, they could very well be the effect also.
A similar effort will need to be made to get FMT approved as a treatment for IBD. While it may not surpass immune therapies, FMT can certainly help those who do not respond to conventional medications, just as in the case of Jayswal, for whom steroids and immunosuppressants did not work.
Dr Sood says his lab has found good results of FMT for treating people suffering from ulcerative colitis for who had become steroid dependent – a treatment that has been dismissed as a long-term solution due to complications such as delayed healing of cuts, easy bruising, increased blood pressure and steroid-induced diabetes that occur due to overuse.
According to Dr Ahuja of AIIMS, one of the biggest hindrances to the adoption of FMT is clearly the stigma attached to it. While the stool of a donor goes through multiple stages of processing, he says there’s still an ‘ick factor’ that makes many shy away from trying it out.
Those that have undergone the therapy swear by it. Two persons Happiest Health spoke to who did not want to disclose their identities, said that they got relief from the IBD symptoms right after the very first FMT procedure. Subsequent procedures helped them get back to an almost normal state, albeit with dietary restrictions.
However, Dr Ahuja adds that progress in the United States on the front of freeze-drying stool in capsules that can then be given to those with IBD colonoscopically. “This takes care of the aesthetics part of FMT, and patients will have a much wider acceptance of the treatment and even physicians.”
He warns that not doing so might pose a more serious threat. Several individuals who have undergone FMT treatments have now started doing this in a DIY (do it yourself) manner, using stool provided by family members and spouses. The lack of approvals isn’t holding people back, making it more important to study the treatment and show that it is safe, Dr Ahuja adds.
While FMT as a treatment for IBD does seem to have fewer side effects than prescription of immunosuppressant medications to individuals suffering from the condition, one of the biggest challenges to the treatment taking off is screening of donors.
Donors need to be screened for genes that make them susceptible to antimicrobial resistance or any other infections that they might have. Even the dreaded coronavirus could be transmitted through FMT if the donor is infected at the time the sample is collected.
“We do a strict screening. There’s a protocol in place which is aimed at ruling out infections and upper immunological diseases in the person or in their close family. This way the receiver is not at risk of developing disease themselves,” Dr Sood says.
Moreover, experts across the world have been looking at coming up with a standardised screening for FMT donors. With the treatment now being tested for treating everything from parkinsonism and autism, there’s at least some consensus on ensuring its safety.
With FMT still being a while away from entering into mainstream medicine, Jayswal says he sees a lot of individuals suffering from IBD turning to ayurveda. “For some it works, for some it doesn’t,” he says, stressing on the fact that most individuals turn to ayurveda because they grow tired of the medications not working.
Ayurveda prescribes the extensive use of buttermilk – through diet, enema and even a therapeutic dripping technique – in the treatment of IBD. Interestingly, buttermilk apart from being a good source of Vitamin B1, B2, B12, Phosphorous and Zinc is an excellent probiotic and has been shown to have an effect in restoring the health of gut microbiota.
For this either plain buttermilk, buttermilk processed with herbs such as dry ginger, cumin, pepper, or a fermented form of buttermilk are used.
According to ayurveda, once digestion is restored, therapies focusing on purification or detoxification is advised. It also prescribes modifications in lifestyle such as getting a good sleep, relaxation techniques such as yoga and meditation, and adding more gut friendly food into ones diet for IBD.
For Jayswal, while he declined FMT to treat his condition due to the ineffectiveness of previous drug treatments, he says several individuals he has met through his non-profit and other outreach efforts swear by the technique. While he has come to terms with his condition, he is now set on helping others even as he pursues a master’s in aerospace engineering at the prestigious Indian Institute of Science in Bengaluru.
“Lots of the people with IBD are young – teenagers in school, college who are about to start their life. They have to compromise on their careers, travelling and also in terms of their social life and relationships,” says Jayswal.
“It is kind of a taboo even in urban areas,” he says, adding that advocacy was one of the biggest reasons why he started the support group, apart from hoping that others would get access to more timely and gentler treatments.