The Patient Experience: The reality of being Jewish with IBD right now

Saturday, October 7th, 2023, the largest mass murder of the Jewish people since the Holocaust unfolded before our eyes in Israel. As of Tuesday night (October 17th) at least 1,400 people have died and 3,400 others have been injured in Israel. The rape, barbaric torture, kidnapping, and killing of Israeli civilians—including, children, the elderly, and infants is an atrocity, opening a wound that has never fully closed. This terrorist attack is unfathomable and unjustifiable. Sadly, this tragedy has been met with denials and rationalizations. People all over the world have paraded in the streets, many celebrating the darkest day in history for the Jewish people.

This week on Lights, Camera, Crohn’s a somber look at what it’s like to be Jewish right now and living with inflammatory bowel disease (IBD). You’ll hear firsthand accounts and perspectives from more than 30 Jews with Crohn’s and ulcerative colitis from around the world, along with Dr. Nathaniel A. Cohen, a gastroenterologist who specializes in IBD and works at a hospital in Tel Aviv, Israel.

Nicholas Kristoff, a New York Times reporter, shared a quote that I want to reiterate:

“If we owe a moral responsibility to Israeli children, then we owe the same moral responsibility to Palestinian children. Their lives have equal weight. If you care about human life only in Israel or only in Gaza, then you don’t actually care about human life.”

As I write this, the Health Ministry in Gaza says that since October 7th at least 3,000 Palestinians have died and more than 12,500 have been injured. As these numbers continue to rise at an alarming rate and as we sit in the comfort of our homes in the United States and watch on in disbelief at the devastation and destruction from afar, it’s important to hold space and prayer for all the innocent lives being impacted right now.

Prevalence of IBD in the Jewish community

Before we get into the heartfelt and painful accounts from the Jewish IBD community, it’s important to look at the history of prevalence of IBD in this group of people. Through my advocacy, I’ve been blessed to get to know and work alongside countless incredible Jewish IBD advocates—both patients and caregivers. Most of the people I know with IBD are Jewish. The only people I knew with IBD prior to my Crohn’s disease diagnosis in 2005 were family friends and neighbors, who are Jewish. This tragedy hits the IBD community right at the heart.

Those of Ashkenazi Jewish decent develop IBD, at higher-than-average rates. Genetics are just one suspected cause of IBD. It’s estimated more than 10 million people in the world have Crohn’s disease or ulcerative colitis.

An article by the Jewish Digest reports, “It now seems that Ashkenazi Jews are approximately four times more likely to develop Crohn’s disease or ulcerative colitis than non-Jews living in the same country. This means of course that the vast majority of individuals with IBD in the world are not Jewish but that the Jewish population is disproportionately affected.”

An article from the Jerusalem Post states, “The prevalence of such problems among Jews perhaps lies behind the well-known Yiddish expression, “Gezunt dir in pupik” (good health to your belly button), which was a common way for European Ashkenazi Jews to wish one another robust health.”

Professor Gilaad Kaplan of the Division of Gastroenterology at the University of Calgary’s department of medicine explains, “Research has found more than 200 genetic variants that make an individual more likely to develop IBD, and many of these genes are common in Ashkenazi Jews.”

In April 2023, a study shared by scientists from Cedars-Sinai and 5 other medical centers investigated the genetics of 18,745 individuals, including 5,685 Ashkenazi Jewish people. Researchers created a catalog of genetic variants to help clinicians screen and identify patients with increased risk of Crohn’s disease.

According to a Cedars- Sinai article, “They found 10 variations of the NOD2 and LRRK2 exomes that are associated with increased risk for Crohn’s and are more likely to occur among Ashkenazi Jews. The study suggests that this difference in genetics may predispose the Ashkenazi population to a higher risk of Crohn’s disease compared to non-Jewish people.”

Variations in the genetic material of an individual can be passed down and cause genetic diseases in future generations.  

In the Cedars-Sinai article, Dr. Dermot McGovern, MD, PhD goes on to say, “These increased genetic risk factors seen in Ashkenazi populations appear to be rooted in a history of migrations, catastrophic reductions in population, and then re-population from a small number of surviving founder families over many centuries.”

Professor Kaplan highlighted that over the past 20 years, IBD has become more of a “global disease with rapidly increasing incidence in regions like Asia and Latin America where it was rarely diagnosed a generation ago.”

He went on to say, “IBD is a modern disease of modern times that is associated with industrialization and Westernization of society. The globalization of IBD suggests that genetics lay down the foundation of developing the disease, but environment builds the disease.” IBD occurs in all races and ethnicities.

Learn more here:

Identifying high-impact variants and genes in exomes of Ashkenazi Jewish inflammatory bowel disease patients

The Incidence and Prevalence of Inflammatory Bowel Disease in the Jewish and Arab Populations of Israel

Why is Crohn’s so prevalent in Jewish People?

Epidemiology of Inflammatory Bowel Diseases in Israel: A Nationwide Epi-Israeli IBD Research Nucleus Study

Underrepresentation of Palestinian Citizens of Israel in Israeli Inflammatory Bowel Disease Trials

A firsthand account from a GI in Israel

Dr. Nathaniel A. Cohen, MD, is a gastroenterologist in Israel who specializes in IBD at Tel Aviv Medical Center. He says this is an exceptionally difficult time for patients with IBD throughout Israel.

“Obviously those in the southern areas have been severely impacted, some were in the communities so viciously attacked by Hamas terrorists and lost family members and witnessed the horrors. Those patients face challenges of access to care as they had to leave their community and move further north,” explained Dr. Cohen. “However, other patients across the country have also been affected. Israel is a small country with very close-knit communities and there is not one person who doesn’t know someone murdered, missing, or held hostage. Israel is so small that when I talk about southern cities and villages (where the terrorist attacks occurred) they are only around 30 miles away from where I am currently sitting in Tel Aviv.”

Dr Cohen says that in addition to the terrorist attacks on October 7th, Israel has been faced with “incessant rocket fire from Gaza and the need to go in bomb shelters through the day” ever since, even in central Israel. In addition, many have been called up for reserve duty or have loved ones called up.

“This severe stress has resulted in a significant uptick in IBD symptoms. I am a medical advisor on an IBD patient support application and many more patients than usual have been sending questions regarding increased symptoms. Also, at our IBD clinic in Tel Aviv Medical Center all our physicians have received countless emails from patients experiencing flares or at least worsening bowel symptoms,” said Dr. Cohen.

He went on to say this is a very trying time for people with IBD.   

Patients with IBD as always need to be assessed by a medical professional if they have a flare of symptoms to rule out infection and perform fecal calprotectin to distinguish symptoms resulting directly from stress and those related to their inflammation. Most GI specialists are still working and available for consultations, so it’s important for patients to reach out and get the help they need,” he said.

Dr. Cohen tells me multiple mental health support services have been set up throughout Israel – mainly virtually – to provide mental health support to those affected.

“I also recommend online mindfulness videos or apps and trying (as hard as it may be) to maintain some sort of routine, exercise if possible and yoga (which can be done online and at home) to my patients. Diet is also a vital component. Many patients will stress eat as well as eat food that may worsen disease activity – fried food, snacks, etc. – so I try to advise them on eating as healthy of a diet as possible, despite the times. Volunteering right now is also important, as it gives a sense of purpose and takes the mind off the difficult situation, we are all facing. Unfortunately, there is no easy solution during this most difficult of periods.”

Dr. Cohen says that in Israel they are fortunate to have a very strong public health system—despite the strains due to the war.

“Most GIs are still working normally and are readily available for consultations. There are concerns for patients directly affected by the terrorist attacks in the southern cities and villages, however the country’s health maintenance organizations are nationally distributed, so if a patient needs to move to a different area all their health records are readily available, and most shouldn’t find it difficult to access their medications. Our hospitals, at least in central Israel, are still performing all routine surgeries and as far as I know we are not delaying elective surgeries yet, so this hasn’t been as much of an issue, and we have the capacity to accept all patients from the south who may need care.”

I asked Dr. Cohen to paint a picture for those of us who are not in Israel about what it’s like to be there right now.

“During the Hamas terrorist attack, Israel and the Jewish people suffered the most significant loss of life in a single day since the Holocaust. I want to emphasize that this attack was against civilians – entire families including children, mothers, fathers, and grandparents were tortured, raped, and massacred. Young people at a music festival, celebrating peace, were massacred. We have close to 200 civilians (children, women, men, and elderly) currently held hostage in Gaza. Every single Israeli was affected. Almost every Jew around the world was affected. The Jewish population around the world is only around 16 million people – so for most of us this is exceptionally personal. At the beginning shock and horror took hold of the country, we felt helpless but very quickly the Israeli resilience has shone through, and the entire country has come together as one to defend our right to live in our homeland. The political divide that was present before 10/7 has largely disappeared and we’re united in the face of this evil.”

Dr. Cohen says he would like non-Jews to remember that Israel is the beacon of freedom in the Middle East.

“We are the only liberal democracy in the region and the only country in the region who truly shares the ideals so cherished by Americans and the western world. Israel is a diverse country where ALL citizens regardless of religion, race, ethnicity, sexual orientation, or political inclination live free and with equal opportunity. The largest group of Arabs who are part of the LGBTQ+ community live in the cities of Haifa and Tel Aviv. Israel places the value of human life above all others and, despite what the news will show, does everything in its power to protect the lives of innocent civilians.”

He says the best way to show support is to continue to stand up to terrorism.

“Share the horrors of what Israeli’s suffered on Saturday October 7th and defend and voice support for Israel’s obligation to defend her people and rid the world of Hamas just like the world did with the Nazis, Al-Qaeda, ISIS, and countless other groups whose aim was genocide and enforcing radical ideology upon others. It’s also important to remember that Jewish communities in the US and around the globe will be suffering emotionally and will also be threatened by radical groups abroad who support the violent hatred Hamas embodies. Please think about your Jewish friends, check in on them and make sure they are OK.”

Dr. Cohen would like to thank the global IBD community for the endless messages and support that he and his colleagues have received.

The Jewish community is reeling: What IBD patients and caregivers want you to know

The Hamas terror attack has highlighted the growing global threat to all Jewish communities. Antisemitism is extremely real and prevalent. This isn’t something to be taken casually or something to ignore or tune out because you don’t feel as though it impacts you.

Here’s anonymous input shared with me by members of our IBD community:

This American Israeli Jew with ulcerative colitis lives in Israel and is studying medicine to become a physician. She says her symptoms worsened after she got home from sheltering in a basement.

“I had a difficult time in the bathroom. My thoughts were: I could die being on the toilet, how would I run to shelter if I’m having another episode in the restroom, I need to bring all the toilet paper I just brought down to our apartment building basement. Because of the architectural layout of the basement, the bathroom is connected and shared by two “apartments” (essentially rooms), so anyone who has to enter the secure room, needs to go through the restroom. It’s just a mess. I’m hoping there won’t be a need to bunker down for awhile. I’m still going to the hospital as a med student to learn and help even though school is technically canceled. I don’t think I will go into a flare. After the shock of the events, I’ve decided I’m staying mentally strong. I’m not letting the enemy win.”

“My Crohn’s symptoms have flared more in the last five days than the last five years combined. It’s totally barbaric and no exaggeration to say it makes me feel physically sick. Four of our family friends were taken hostage, including 13- and 15-year-old girls and their parents, after terrorists broke into their home. My cousin was at the music festival in the desert where they shot 250 Israelis. He miraculously managed to survive, but witnessed so many of his friends being killed, abducted, and other atrocities too barbaric for words.”

“The horrific attacks on Israeli civilians by Hamas has left me heartbroken. My husband is a veteran of the IDF (Israel Defense Forces), and we have many friends living in Israel. The fear of their safety, the hesitance of non-Jewish friends to immediately condemn the heinous acts, and the uncertainty of the repercussions for Jews around the world, has put an enormous amount of stress on me. I feel a weight on my heart like never before and this most certainly is affecting my IBD. I’ve had more symptoms, which I attribute to lack of sleep and increased stress.”

“Although I don’t have anyone personally close living in Israel, I do know people from my prior Birthright trip, as well as some Israelis that are in St. Louis currently, but have lost close friends or family in the recent events and that is heartbreaking. It’s hard to be bombarded by the news constantly with images and videos of the attacks, and yet seeing so few non-Jewish friends posting about it.”

“I just saw my colorectal surgeon and I asked how he’s been affected. His sister-in-law’s cousin was killed. Age 21. So sad.”

“My 13-year-old daughter was diagnosed with Crohn’s a little over two years ago. She has been well managed with Remicade (now she takes the biosimilar Avsola). She woke up in the middle of the night with pain (rare) on Sunday (Oct. 8) night. We shield our kids from the worst of this nightmare, but we have open conversations, and the news is on occasionally. She is worried about my family in Israel. I wouldn’t know for sure if the IBD symptoms and her worry are related…but she rarely has pain…and before this her pain didn’t wake her up.”

“I am Jewish. My mom’s side is Israeli, I have relatives who live in Israel. This is an unfathomable crisis and it’s hard to describe the pain I am feeling for my community. I am feeling the physical manifestations of the grief I am feeling. I’m nauseous and have little appetite. I’m trying my best to limit my news and social media intake, but it’s hard to forget everything that is going on. There’s a fear for being Jewish and Israeli even here in the United States. But also, I feel deeply for those living in Israel dealing with this firsthand who have IBD and other chronic illnesses. My heart goes out to them.”

“It’s a real struggle. Many of us have family who live in Israel and are in the army, and some are on the front lines. I live in Pittsburgh, and we are coming up on the 5th anniversary of the Tree of Life shooting. That synagogue is within walking distance of our house. I had personal connections with many who lost their lives. I haven’t been able to concentrate on my own advocacy work. It’s been super hard.”

“My family is Jewish, and my husband is an IDF veteran. This week has been terrible. I’m angry and disheartened that even many of my close non-Jewish friends have been silent.”

“Non-stop crying over here. I’m a little grateful that I had a scope today so that I could have a long break from my phone.”

“I’m a mess. I was supposed to travel to Israel in two weeks, which is now cancelled for obvious reasons. My 22-year-old nephew just moved there for school 2 months ago. Many friends there are in bunkers…it’s just a horrible situation.”

“I’ve had no energy, I’m sad, sickened, nervous, and not doing very good at hydrating and eating.”

“I was feeling so amazing and symptom free from my Rinvoq, and then after the attack on October 7th, I saw a big increase in symptoms. I feel sad and scared. I’m so worried. And honestly, now I’m starting to feel angry at the alarming lack of response from most people and organizations. My colleague’s brother’s unit was called up and they don’t have enough supplies. The antisemitism is the most hurtful and scary.”

“As someone with IBD and Jewish roots, it’s been especially heartbreaking to read about the destruction of human life—innocent babies and children at that. Huge WTF. I’ve been on autopilot and subconsciously worried about my own child. Can’t say I noticed an uptick in gastro symptoms since the news. Prayers help to ease my mind.”

I am terrified that my daughter Tamar is a hostage of Hamas – she needs urgent medical care. By Yaira Gutman

Tamar Gutman is 27 years old and battles Crohn’s disease and anxiety. She attended the Reim Music Festival and has been missing ever since.

Man with Miami relative kidnapped by Hamas; father shares urgent plea

Omer Wenkert is 22 years old and was also at the music festival and hostage video was released of him. Omer has ulcerative colitis, and his family is concerned he’s not receiving his medication. Hamas denied an appeal to hand over medications for chronic illness patients.

The struggle of coping with the deeply emotional and physical pain

“My family was supposed to travel to Israel for two weeks on Sunday, October 8th. I feel lucky to be safe, but also deeply saddened by the acts of violence against Jews/Israelis and guilty for being safe when my family and friends are not. I work in healthcare, and I know Israel needs medical volunteers, but with my ulcerative colitis, I feel like I couldn’t go. I just started a new medication and am coming out of a flare, so how do I know that the stress of practicing medicine in a foreign country where there is war wouldn’t make my symptoms even worse? I can’t take care of others if I am sick. In a perfect world, I would go to Israel and volunteer to help the injured, but my IBD holds me back from that.”

“While my UC remains in remission, I’ve noticed my anxiety heightened. I avoided a public event for Israel because it was advertised on social media, and I was concerned about anti-Semitic violence that could occur with people knowing when and where a large group of Jews were gathering. It’s a scary and difficult time to be a Jewish person, even more with IBD. Thinking about what could happen for the people being held captive going without essential medications or medical care. Being scared to wear a Star of David necklace for fear of anti-Semitic threats…the list goes on.”

“Generational trauma is ingrained in our DNAs as Jews; we instinctively feel the defense to protect ourselves and our community due to the Holocaust and other occurrences in history. If we don’t defend ourselves, who will? That is what is scary. It’s also frightening that in 2023, there are videos of individuals waving flags that appear to be in advocacy for Palestine, but they chant “GAS THE JEWS” and other profanities. For those who did not grow up knowing what we went through, they disregard the truth. The ironic thing is Jewish people have the backs of other humans; we care for our community of fellow humans, regardless of whether people are Jewish. Even in tragedy as family and loved ones have suffered the most tragic things, they still help others in need. They don’t stay in hiding grieving; they help the community. It’s in our values and in our religion to do good for others while giving space for grief.”

“It’s affected me so much seeing people I know with missing family members and friends, uncertain if they’ve been murdered. I’ve been checking in with my Israeli friends every day. My stomach is acting up and is not feeling good these days. I’m coping with it by sharing how I feel. It’s true when they say, “your Jewish friends are not ok.” There’s a lot of fear and uncertainty going on. I had to cancel a flight that I had on Friday 10/13 because there was word going around that something was going to happen in our country to those who are Jewish.”

“I feel numb. I’ve seen an uptick in symptoms. The grief is heavy, and it hurts my stomach. It’s so hard. I don’t know what to say except this is our worst nightmare. I lived in Israel in 2007 for study abroad. Part of that country is my home. We have friends stuck there in bomb shelters unable to get flights back to America. I’ve been nauseous for days and having to take anti-diarrheal medication multiple times a day from the stress. Knowing people are stuck there amplifies the stress immensely.”

“I am Jewish, and I have Crohn’s. I’m so concerned about my possible physical reaction to my emotional reaction that I’ve been concerned about fully engaging in the news of what’s happening.”

“I am coping as best as I can. I make sure to work out and eat healthy to help with anxiety. Thankfully, I haven’t had any symptoms, this month marks 25 years since my ulcerative colitis diagnosis. I would like my non-Jewish friends to check in. Thankfully, I’ve seen some positive posts on social media. I am proud to be Jewish, but scared of what is going on.”

“I’m Jewish and have Crohn’s and my stomach has been a mess this last week and I didn’t put two and two together!!”

“I find it extremely sad that condemning Hamas and supporting Israel/Jews has become a political and taboo subject. I see a lot of “Free Palestine” and “Israel caused this by occupying Gaza” which breaks my heart. This is about a terrorist organization that is hungry for Jewish blood. The fact that this isn’t unanimously condemned doesn’t make sense to me. Of course, no one wants civilians on either side to be hurt. But Hamas did this. They use all their money to make rockets and bombs and tunnels. They could have made Gaza better for their people, but they don’t. They never will. I also don’t understand how organizations like Black Lives Matter can come out and say they stand with Palestine. It seems to me that whenever Israel has to defend itself, more people turn on Israel and Jews.”

“I am not coping. I find myself completely distracted when I’m with my son or when working with patients (I work in healthcare). My mind wanders, wondering about all the civilians impacted…about the state of our world and how it impacts our humanity here in the United States. My heart aches for the babies, older adults, and parents lost. My symptoms are absolutely worse! I can’t sleep, and I tend to flare worse with less sleep. I crave foods that are triggering. The overall anxiety and stress makes my gut hurt and sends me to the bathroom more often. It’s disruptive to my life routines for sure.”

“I’m choosing to surround myself with Jews and like-minded people. If I was at work, and hearing other people talk, maybe I would have worse symptoms.”

“I am a long time Crohnie and lifetime Jew. I appreciate this article and know it comes from a good place. Right now, we are not doing good at all. I’d be happy to circle back to this convo, but right now, we are terrified. There is no coping with these horrors. I feel too overwhelmed to have a coherent conversation and I’m sure others do, too.”

What does the Jewish community want the rest of the world to know?

There are reoccurring sentiments and heartache from the Jewish community about the silence around the terrorist attack from non-Jews. Take yourself back to the major social justice issues in recent years and think about what your online community posted and how they were there in solidarity with others—compared to the last 10 days.

“Check in with us, we’re not doing OK. It would be awesome to just see how we’re doing truly…and just letting us speak our truth without judgement, defense, or justification of something other than our truth. Acknowledge us. See us and fight against anything that brutally harms humans in general. Be a helper. See how you can help anyone whose been impacted by terrorism.”

“The most important thing our non-Jewish friends and family can do is to reach out to express solidarity with the victims and to unequivocally condemn antisemitic attacks. As a Jew and a mother, I’m deeply affected by the murders of innocent Israelis and Palestinians, especially the children. Regardless of anyone’s view of the broader conflict, I think we can all agree that the actions of Hamas cannot be condoned or ignored.”

“I’ve shared a couple of Instagram Stories saying, “Check in on your Jewish friends”, we are struggling in the wake of this massacre and have received responses attempting to justify the brutal murders, rape of teenage girls at the festival, and beheading of people in their homes…making it about ‘complex politics’. Standing up for human rights and against terrorism needs no ifs, ands, or buts.”

“It’s been extremely eye-opening watching who posts and how they post and the deafening silence from those who should know better and don’t hesitate to post on other issues.”

“I have zero family on my dad’s side because they all died in the Holocaust. I constantly wonder how that happened. How everyone just stood by and let it happen. And now, it just feels like that all over again. Silence.”

Dumisani Washington, Founder, CEO of Institute for Black Solidarity with Israel, and author of “Zionism & the Black Church, tweeted: “Imagine being a Jewish man or woman living outside of Israel, especially in the Western world (US, UK, Canada), and seeing hundreds of thousands of people—of various ethnicities and around the world—cheering the slaughter of your people in the Jewish homeland. Imagine trying to figure out where the safest place would be for you and your family. Now, multiply that by 1,000 and you may get a small glimpse of what our Jewish brothers and sisters are experiencing right now.”

“I can’t begin to thank you enough for bringing awareness to the brutal massacre in Israel. The silence of celebrities and organizations is deafening and feels so isolating. It is not about politics. It’s about right and wrong. There were barbarian Hamas terrorists who in ONE day brutally killed at least 1,400 Israeli civilians (children, elderly, moms, and dads) and hundreds are missing or being held hostage by these Hamas monsters. Jewish people were beheaded, raped, their bodies were paraded by Hamas, kids saw their parents get shot at point blank in their homes, people were gassed, and burned alive. This is the deadliest day since the Holocaust. We need everyone to speak out right now.”

“Can you imagine if after 9/11 people were silent? Or worse, people were in the streets rallying behind Hamas? This is what’s happening right now. It’s sickening. We are grieving so hard. My heart is in a million pieces and I’m crying every hour. Everything else feels so trivial right now. Thankfully my Crohn’s is in remission, and I haven’t had any new symptoms from the stress, at least not yet.”

“I’m destroyed. It’s a nightmare that I want to wake up from. My son goes to a Jewish high school, and I want to keep him home. All we have done is help and stand up for people and now this.”

“Done being silent. Done hiding. DONE. It’s been a hard few days for my family, so it doesn’t take much to make me cry. I have been terrified to share about Judaism and Crohn’s. I’m not scared to share the content; I’m just scared to be Jewish right now. I’m just in disbelief because I was ready to quit on the IBD/ostomy community. I thought if anyone would get it, it would be this community.”

“I have five cousins serving in the IDF right now. I have one fighting on the border of Gaza. I have one extended family member being held captive in Gaza. I’ve only recently begun serving the ostomy/IBD community and felt so passionately about it and my heart is now in such a different place. I’ve had several (I can count on one hand) people say nice things to me, but they won’t speak up publicly themselves.”

“A simple text message means more than you can imagine. Something along the lines of “I’m so sorry to hear about the horrific terrorist attacks in Israel. Is your family safe? How are you coping?” Using social media to speak out against the atrocities committed by the Hamas terrorists and assuring us you stand with Israel means a lot, too!”

“Posting support publicly and checking in with Jewish friends and coworkers goes a long way.”

“There are only 16 million Jews in the whole world. There are billions of Muslims and many Muslim countries. Jews only have Israel. Land all over the world has been conquered. Why is it that Israel is the only land people cannot accept? Also, I’m surprised the Crohn’s and Colitis Foundation took five days to say anything publicly. Jews and IBD overlap. Everyone I know personally who has IBD is also Jewish. They should be supporting us; the silence is loud. As a Jewish woman with IBD I feel alone. Sometimes alone with my IBD, but right now, alone as a Jew who is scared for her people and her country.”

Check out this article one of my Jewish friends who is an IBD caregiver posted this week: Why You Might Have Lost All Your Jewish Friends This Week and Didn’t Even Know It.

The Crohn’s and Colitis Foundation shared an email with subscribers on the evening of October 16th.

To quote part of the email, Foundation President Michael Osso shared, “I want to be clear that we unequivocally condemn the terrorist attacks carried out by Hamas. There can be no justification for such heinous acts, which have launched violence that is now consuming the region and continues to destroy increasing numbers of innocent lives in Israel and Gaza. We grieve for the families that are devastated by loss and hope for peace and the safe return of all hostages.”

The email goes on to say—“for all those committed to the mission of the Crohn’s and Colitis Foundation, this is a moment for us to hold firm the Foundation’s core values, and specifically for me, I am thinking of compassion and inclusion. This Foundation will always stand for respect of human life, and against hate of any kind, including anti-Semitism, Islamophobia, and any form of xenophobia or racism.”

If you are experiencing stress-related flares, or other mental health challenges the Foundation encourages you to contact the IBD Help Center by emailing info@crohnscolitisfoundation.org or calling 1-888-MYGUTPAIN.

Final Thoughts and Resources of Support for Innocent Israeli and Palestine citizens

I want to make it clear that my wish and hope is for freedom and peace for ALL. My heart goes out to all the innocent and oppressed people in both Israel and in Gaza, and all over the world. There are countless victims here. Innocent lives that pay the ultimate price for crimes that have nothing to do with them. To quote a friend, “Supporting the Jewish people that I know, and love is not synonymous with supporting all of Israel’s policies. And it’s not synonymous with not caring about Palestinian civilian casualties as Israel attempts to stop terrorists.” My thoughts and hopes are for the safety and protection of all innocent civilians and for stability in the region as quickly as possible. I hope and I pray all IBD patients and caregivers—in Israel and Gaza—can stay well and stay safe in these soul-crushing times.

As a good friend of mine who is Jewish and has Crohn’s shared with me, “Hamas’ sole mission is to eradicate Jews, brutally and mercilessly while the whole world watches. By supporting Israel and Jews it does not mean that anyone is anti-Palestine or that we support the killing and mistreatment of any innocent human life. It just means we are anti-terrorist. We’re all anti-Hamas and anti-barbaric terrorism.”

Additional resources of support

Credit: Jay Shetty for compiling this list of resources

American Friends of Magen David Adom (Read Start of David): Supports Israel’s primary ambulance, blood services, and disaster-relief organization. Magen David Adom (MDA) provides medical care during crises and trains first responders. They play a crucial role in responding to emergencies in Israel and the region, including Gaza.

Alliance for Middle East Peace (ALMEP): The largest network of Palestinian and Israeli peace builders. ALMEP focuses on promoting peace and understanding between the two communities in the region.

CARE (Cooperative for Assistance and Relief Everywhere): A global humanitarian organization that provides emergency relief and works to fight global poverty. CARE’s work extends to providing assistance and support to vulnerable populations, including those affected in the Israel and Gaza region.

Doctors Without Borders: An international organization providing lifesaving medical humanitarian care worldwide. They respond to medical needs in conflict zones, offer mental health care, and address health crises.

Palestine Children’s Relief Fund (PCRF): A U.S.-based nonprofit sponsoring volunteer medical teams to treat sick and injured Palestinian children in the West Bank and Gaza. PCRF provides essential medical care and builds pediatric cancer departments to address the healthcare needs of children in the region.

United Hatzalah: The largest independent, non-profit, volunteer Emergency Medical Service (EMS) in Israel. Volunteers provide fast and free medical care 24/7, responding to emergencies across the country, including in Gaza.

UNRWRA: Provides assistance and protection for refugees, including those in the West Bank, Gaza, and surrounding areas. UNRWRA’s work is essential in supporting vulnerable refugee populations.

Please hold room and space in your heart for each innocent soul impacted by this.

The Patient Experience: What the IBD community has to say about Rinvoq

When you have IBD and need a biologic, it used to be all infusions or self-injections. But starting in March 2022 (for ulcerative colitis) and May 2023 (for Crohn’s) a daily pill known as Rinvoq (Upadacitinib), entered the game. Rinvoq is the first approved oral product to treat Crohn’s. This once-daily pill is prescribed for those with moderately to severely active IBD who have had a lackluster response or an intolerance to one more TNF blockers (such as Humira and/or Remicade). Rinvoq is also prescribed for rheumatology and dermatology conditions, such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, non-radiographic axial spondylarthritis.

Doses range from 15 mg, 30 mg, or 45 mg. According to AbbVie’s website, “Rinvoq is a selective JAK inhibitor based on enzymatic and cellular assays. Rinvoq works with your body to fight the inflammation that can lead to IBD symptoms. Rinvoq stops the activity of some inflammatory proteins known as Janus kinase (JAK) to help reduce inflammation.

This week on Lights, Camera, Crohn’s we talk with 29 IBD patients about their personal experience on Rinvoq, along with Dr. Uma Mahadevan about key information for those in the family planning stages of their lives.

What patients have to say about the induction dose and the quick improvement in symptoms

Rinvoq is the first JAK inhibitor medication that Brooke tried and she didn’t know what to expect. She started Rinvoq in July and says her body has done a complete 180.

“All of my immediate issues have healed, and my long-standing symptoms have begun to fade. In the beginning during the loading dose, I felt a bit more tired. But after two weeks, I had more energy and have experienced less symptoms. Most of my extraintestinal manifestations have cleared up.”

Brooke says she has caught two colds since being on it, so she’s still masking and being diligent around crowded spaces, especially during flu season. She advises fellow patients to talk to their physicians about the dosage they need.

“Because of how much I’ve been flaring, I’m on a higher dose longer than I may have been if I started in a healthier place. Make sure you and your care team agree on a dosage that is not only good for you, but also that you agree with.”

Brooke sets alarms to take her meds because she is used to an infusion or subcutaneous injection, and it’s important not to miss a dose of Rinvoq.

Tonya: I’m only two weeks in, so still on the induction dose, but this is the first time my symptoms have been somewhat controlled in four years.”

Sarah: “I just started Rinvoq and it’s helping me come out of a flare up.”

Melissa: “My 17-year-old son has been on Rinvoq for about six months after Xeljanz failed him. He’s doing great on it and it’s super easy since it’s a pill once a day. He has also been on Humira and Entyvio in the past. Rinvoq has been the easiest transition so far.

Jennifer L.: “I went on Rinvoq after Remicade failed me and then went on Cyclosporine to bridge the gap before I could switch to Rinvoq. I started it in December of last year and this has been the one drug that has subsided a lot of the symptoms. No nocturnal bowel movements, the only major side effects I’ve had is some acne, but I would say it’s hardly noticeable. I did have to come off hormonal birth control as a side effect can also be blood clots, so you can’t have two drugs that increase your risk of that together. I’m single and wasn’t really thinking about dating coming out of a huge flare, so it was a no brainer for me there. If you’re looking to get pregnant, I’ve heard you can’t be on it because studies have shown birth defects, so that’s a concern potentially for some women or for contraceptive options given that you’re only limited to non-hormonal options while on this.”

Krista: “My fiancé just started Rinvoq and after one day he was feeling better. His energy is up, he has an appetite again, and is showing significantly less signs of inflammation. We still have a journey, but it’s been a miracle drug for him.”

Lizzie: “I have been on this now for 3 months after Humira and Stelara stopped working. So far, my Crohn’s symptoms have subsided. I’m no longer flaring. I would say since taking Rinvoq, I feel more fatigued, but apart from that, I feel really good.”

Marla: “I started Rinvoq 24 days ago, so I don’t have a lot to tell you. I don’t think it’s anything bad. It’s hard to tell if the medication is working yet. I do blood work in November.”

Lauren: “I’ve been on Rinvoq for about one year now. Didn’t work at first, but found out I simultaneously had C-diff. I was on vancomycin and Rinvoq for about 4 months and was scoped for the first time in 4 years because I was in remission. I ended vancomycin and flared again. I will be transitioning to Skyrizi soon, but even though I’m not in remission, Rinvoq has been the only thing that has gotten me in the best place I’ve been in 4 years. I love the ease of one pill a day, no infusions, no shots, etc.”

The main reason Lauren can’t stay on Rinvoq is that it’s not safe for pregnancy and she hopes to have another child. She’s bummed this medication is the only thing that’s shown her improvements and that she needs to switch.

Amber: “I just started Rinvoq last week, so perhaps it’s too early. I am adding Rinvoq to Entyvio for fistulizing Crohn’s. The one thing we are trying to figure out is how it works with an ileostomy. I tend to have a fast track and has passed pills in the past and Rinvoq is an extended release.”

Dana: “I’m currently on Rinvoq! Although I’ve only been on it for 3 weeks, I don’t have any real side effects so far.”

Lindsay: “I’ve only been on Rinvoq for about 3 weeks. I was hoping for a more dramatic change based on things I have read. My fevers have gone away, and I feel like I have more energy, but I still go to the bathroom just as much and the urgency has not changed. I also had to give up breastfeeding to start Rinvoq, so that was hard!”

Sarah: “I started Rinvoq after Humira was not putting me in remission after 1.5 years on it (even with methotrexate added to help). I saw an immediate improvement in my stools. I might have a few pimples as a side effect. It’s only been 3 weeks, but so far, so good!”

Erica: “I’ve been on Rinvoq since May. I haven’t had any improvement. I was hoping when I started that it would work for me. I heard so many people call it their miracle drug. I was scared to try it at first because of all the warnings, but once I started it, I was hopeful. Unfortunately, it was not my miracle drug and I had to add Skyrizi to it…I’m still not better.”

Denise: “I’ve been on Rinvoq for about 7 years. I’ve been part of a clinical trial. I don’t think I have anything bad to say about it. I was so sick with few options, so I took a risk, and it fixed me. I don’t think I’ve had any side effects. I still get scoped annually as part of the study and my intestines have looked great. Sure, I still have tummy troubles, but not the main Crohn’s ones! I get blood work done every 3 months and everything has been normal there as well.”

Abigail was prescribed Rinvoq in late August 2022. At the time, she was hospitalized with the worst flare she’s ever had and was admitted 3 separate times for a 37 day stay. She was facing steroid and Remicade failure and running out of time before requiring emergency surgery. Abigail was given the option of trying Rinvoq for 2 weeks. If it didn’t work, surgery would be required to remove her colon. Her care team got insurance to approve it and she started it right away. Abigail took a double loading dose. Usually, you do 45 mg for 8 weeks, but she did it for 16 weeks instead.

“This medication not only saved my colon, but arguably my life, as I had faced death twice during that hospitalization. I was able to get off steroids. I now take 30 mg of Rinvoq daily and I’m in clinical remission. My next colonoscopy is at the end of this month, so it may show even further remission. I was nervous to start Rinvoq, since it is so new, but given the circumstances, I agreed to it. I am honestly so glad I did. The only side effect I have experienced is high cholesterol. My care team will be addressing this after my colonoscopy. I am forever grateful to Rinvoq for giving me my life back. I choose to do medication and therapeutic diet (SCD). For me, this combination has really helped.”

The visible side effects

Jessie started on Rinvoq to treat her Crohn’s before it was FDA approved because of a flare she couldn’t get under control. She was put on the 45 mg dose for 2 months and saw quick improvements in how she was feeling. After years and years of being poked and prodded for infusions and labs she says she’s so grateful to give her body a rest and just take a daily pill.

“Rinvoq has been like a miracle drug for me. Despite the side effects of weight gain, constipation, and acne on my face and body, I don’t even care because it’s the best I’ve felt in more than 5 years. I’ll take the acne and backne any day.”

Jessie spent hundreds of dollars on skin products and through patient support groups she was recommended CeraVe Moisturizing Cream with Salicylic Acid and CeraVe Body Wash with Salicylic Acid and has noticed a huge improvement. Both products are available over the counter.

Madison: “I am on Rinvoq and I hate it. Let’s say first, it works fast. Within 48 hours, my symptoms were gone, and it’s done a great job at keeping my UC in check. However, the side effects are awful. Acne is the most common side effect and I have it everywhere. My face used to be dry, but now it’s VERY oily. My cholesterol has gone up, which is a known side effect and doctors are keeping close tabs on it. Lastly, weight gain. Weight gain was recently acknowledged as a side effect and I’ve had that, too. The first-generation JAK inhibitors were notorious for weight gain, so I’m not sure why it wasn’t acknowledged in this second generation.”

Madison adds that it’s hard to acknowledge that Rinvoq is working well, but it comes with its fair share of side effects. While the side effects are annoying, she says they are not as bad as a flare.

Alexandra: “I took Rinvoq for 5 months. It did absolutely nothing for my UC, but it gave me horrible acne.”

Lisa: “I was on 45 mg for 3 months. I hated it. I had some sort of infection the entire time and had bruises everywhere. I started Skyrizi three days ago.”

Elizabeth: “I’ve had great results on Rinvoq, I take 30 mg along with Entyvio. My only complaint with Rinvoq is the acne.”

Jenna: “I just stopped Rinvoq. I had a horrible face rash as a side effect. It seemed like an acne flare when it started back in early August and no matter what I tried, it got worse and worse. My dermatologist and doctors both believed it was some sort of rash caused by being on immunosuppressant drugs and stopped my Rinvoq. I took an anti-parasitic and the acne is mostly cleared up.”

Kelly: “I started Rinvoq and only completed 6 weeks (the loading dose and start of the treatment). Insurance issues were part of the reason why I stopped taking it. I also knew that I wanted another child. If I was able to…and there were minimal to no studies for a safe pregnancy. The only symptoms I had were small rashes on my hands and feet, kind of pimple like, not painful or concerning…just something I noticed.”

Jennifer V.: “On Rinvoq and love it!! It’s a pill so it’s easy and it has put me mostly into a therapeutic remission. The cons: weight gain, fatigue, elevated liver enzymes, and anemia. All in all, if you are not having any more children, I would highly recommend this medication. I would need to see more time and research if I were to recommend it prior to pregnancy.”

Jennifer V. had to go off Rinvoq last week while she was taking Paxlovid to clear up Covid and she lost weight for the first time in ages. Now she says she’s back on Rinvoq and the weight is coming right back.

Emily: “I have had Crohn’s and lupus since 2020 and I took the highest dosage of Rinvoq, and it didn’t do much to help me. While I was on it, I thought I saw some improvements, but as soon as I went off it, I realized it wasn’t doing much good. It made my skin break out really bad. I often would pass the pill whole when going to the bathroom. It’s a big pill, easy to see. I’m on Skyrizi now and hoping to reach remission.”

Kendall: “I’ve been on Rinvoq about 3 months. My symptoms have improved, but I’m surprised at how many of the side effects I have experienced: styes, mouth sores, cold sores, and acne. I’m planning to stay on it. My IBD is not stable yet, but I’m hopeful Rinvoq will get me there. Afterwards, I’ll see if diet and lifestyle can maintain remission. It’s nice that you can start and stop Rinvoq!”

Implications for pregnancy and breastfeeding to consider

Sarah: “I just started Rinvoq and it’s helping me come out of a flare up. I am wrapping up my third month. I started to feel improvement after two weeks. It’s such a relief to take a pill after self-injecting for the past 15 years. So far, I don’t have any bad side effects. The only thing that stresses me out is that you can’t be pregnant while taking it, so as a 34-year-old, ready to have a second child, it’s in the back of my mind—how am I going to get off (and back on this), how will I keep my Crohn’s under control when I’m pregnant next? But, in the meantime, I’m grateful that it’s helped me get control over a bad flare that caused me to take a medical leave from my job.”

Allie: “I feel like I had a good experience on Rinvoq. I would say the good is that it works very fast. I was starting to feel better from my flare within 3 days. I was able to get off prednisone because it worked so quickly. The bad is that Rinvoq made me gain weight that I haven’t been able to lose, but my doctors won’t confirm it’s related to the medication. I also felt very bloated all the time. I did not like having to take a pill every day (going from being on Entyvio), so I would sometimes forget to take it. The last thing for me is that I’m still hoping to have another child and it’s not safe for pregnancy, so it was not a long-term option for me, even though it helped me achieve healing from a flare.”

Carmen started taking Rinvoq in February after multiple biologics and non-biologics failed to treat and manage her ulcerative colitis. So far, she says her experience has been very positive. She went into clinical remission within the first month of being prescribed 45 mg.

I’ve since been tapered down to 15 mg and it’s still looking very positive. Bloods, calprotectin, and how I generally feel has massively improved, along with my quality of life. The negatives I’ve experienced so far have been some mild skin issues, mainly rashes on my face, chest, and upper back, this is currently controlled by over-the-counter salicylic acid face and body wash. I’ve also picked up a few fungal infections and have lost my big toenail because of one of the infections that required antibiotics. For me, these are minor issues and outweigh the overall treatment plan. My GI believes as we’ve decreased the dose to 15 mg, that these minor side effects will disperse over time.”

Carmen says taking a once daily pill is much simpler than some of the other biologic drugs that require visiting an infusion center and taking multiple other medications either intravenously or orally. The cost for me is relatively high for Rinvoq at $150 a month, but this will depend on what medical insurance and copay you have. All in all, Carmen says Rinvoq has been a positive experience and has done what other medications have failed to do.

Important Considerations Regarding Family Planning While on Rinvoq

Dr. Uma Mahadevan, MD, Director of Colitis and Crohn’s Disease Center at University of California San Francisco and lead investigator of the Pregnancy in IBD and Neonatal Outcomes study (PIANO) says when it comes to Rinvoq, the medication has been associated with birth defects in animals at the same dose as given to humans (30 mg), so she avoids prescribing this in pregnancy.

“I do not prescribe Rinvoq to someone who is about to get pregnant. However, Rinvoq is generally given to people who have not responded to anti-TNF, so if Rinvoq is the best medicine for them, I do not hold the fact that they are a woman of child-bearing age against them and give them the therapy to best put them in remission.”

Dr. Mahadevan says if a woman is on Rinvoq and becomes pregnant she has successfully transitioned patients to Skyrizi. This can be more challenging with UC as there are fewer options. The PIANO study is currently researching the safety and efficacy of these drugs. There are several Skyrizi patients being monitored right now and 2 Rinvoq patients so far. You can learn more about being a part of PIANO here. I participated in PIANO with my youngest child as an IBD mom who is on Humira. Being a part of this research is invaluable for our community and helps current and future families.

It’s believed that Rinvoq crosses into breastmilk, so you should avoid feeding your baby that way if you are taking this medication.

Rinvoq Complete Patient Support

Much like other biologics, there are patient support services in place that you want to be aware of. RINVOQ Complete provides personalized patient support when you need it. With RINVOQ Complete, you get 1-to-1 assistance with finding potential ways to save on the cost of your prescription and more. I use Humira Complete for my prescription needs.

You can also get help making sense of your insurance and finding ways to fit Rinvoq into your everyday routine.

If you have commercial insurance, you may be eligible to pay as little as $5 a month for your prescription with the RINVOQ Complete Savings Card. Click here to sign up for your RINVOQ Complete savings card.

Final thoughts

It’s important to remember that just because someone has a miraculous experience or a terrible one with a specific drug, does not mean that you will. I will say, with all the biologics that I’ve covered on Lights, Camera, Crohn’s the visible side effects (weight gain and acne specifically) were the most widespread and common among the patient population. So many of you said you felt guilty feeling “vain” about not wanting to be on a drug because of that, and I want you to know those feelings are valid and matter. At the end of the day, we all must measure risk vs. benefit and what matters most when it comes to keeping our IBD in check.

You can check out other Patient Experience articles that I’ve covered here:

Humira

Remicade

Entyvio

Stelara

Skyrizi

Puberty and IBD

Trauma and Worry Surrounding Blood Draws and IVs

Living with IBD and Additional Chronic Illnesses

Biosimilars: What Leading GIs want you to know

My J-Pouch changed my life