It can feel like a bad break up. You build trust and rapport with a medical specialist who feels like family after overseeing your complex chronic health condition for years and then boom out of nowhere you find out they are moving away. Or maybe you’re relocating and trying to rebuild your dream team of health care providers. Whether this change is brought on by you or your care team it can feel a bit overwhelming to start anew.
My gastroenterologist of 8 years announced she was leaving on the Patient Portal in August. I was out running errands with my kids when a fellow IBD patient and friend texted me and shared the news. My heart sank and my stomach dropped, it never crossed my mind that she would ever leave. What do you mean SHE’S leaving? The doctor who finally got me into remission and has kept me there for nearly a decade. The doctor who oversaw all my family planning, pregnancies, and postpartum. The doctor whose rooted me on after each scope and always had an aggressive and thoughtful game plan no matter what twists and turns we face.
Unfortunately, this is the nature of the beast. I wrote a heartfelt “thank you” explaining my genuine gratitude for her efforts to always go above and beyond and all that she did to be extremely responsive and attentive to my needs. For the past 8 years when I send a Portal message, I always received a phone call from her—whether she was in clinic or on her cell. This time was different. This time there was radio silence and a one line canned thank you message from a nurse in the office. Just like that our worlds were not interconnected. I made a point to get my routine safety labs the Monday of her last week so that she could provide insight one last time. This time she didn’t comment on any of them and left September 15th without saying goodbye. It felt a bit like a slap in the face and stung.
As a chronic illness patient, we tend to feel a sense of comfort by care providers who help manage so much of our lives. This was a reminder to me that at the end of the day it’s a job for many and that even though we may feel that closeness, that bond may just be a façade. At the same time, I’ve also learned that some medical settings don’t allow doctors to communicate with patients, so who knows.
This week on Lights, Camera, Crohn’s I share tips for how I’m navigating finding a new GI that I think may help you along the way. I’m still feeling a bit lost and don’t know what the future is going to hold or what IBD Center I am going to land at, but I want to take you along for the ride.
The first steps to take
If a care provider is leaving the office or moving out of state, you will generally be placed with another doctor from the same team. This is not always a seamless transition though. Each doctor has a reputation. Some people want to be seen by a female care provider; others want a male. Years of experience and the college they graduated from and where they did residency may be of utmost importance to you. Just because the office says you can see “so and so” now, doesn’t mean you can’t speak up and advocate for what you’re looking for. In the realm of the healthcare world, you’re back to being “single” now and you can find who is the right match for you. Don’t feel pressured into anything. The long-term goal here is for a long-lasting relationship with a care provider who makes you feel like more than a number.
I have seen three different GIs in my 18+ years since my Crohn’s disease diagnosis. The first was incredible. I just so happened to meet him during my initial hospital stay, the day after I was diagnosed in the emergency room. He practices in my hometown (a Chicago suburb) and oversaw my care for a decade—even when I lived in Minnesota and Wisconsin while I was a news reporter and anchor.
When I moved to St. Louis in 2014 and my Crohn’s was flaring, I knew I needed to find a local provider. So once again, during a hospitalization for a bowel obstruction, I connected with the GI who was doing rounds at the hospital and loved his bedside manner. I felt safe and like I had found another great doctor. Unfortunately, while under his care I was very sick. We couldn’t figure out why my Crohn’s was so out of control. By the third hospitalization in 15 months, even while ramping up Humira injections to every week, and after several ER visits, his partner called me while I was in the hospital and said I needed an MRE to get to the bottom of what was happening. I did the MRE and was called back by that same doctor (not my GI) and he coldly told me over the phone that I needed a bowel resection—either the next day or in 10 days. He said I could go home and build up my strength. I chose to wait the 10 days. My actual GI never visited me in the hospital, never followed up…I knew it was time to drop him like a bad habit.
Enter in my most recent GI. Everyone raved about her. My colorectal surgeon and friends from the local Crohn’s and Colitis Foundation chapter all said she was the one to go to. So, I did…and now 8 years later I feel a bit stressed about starting the hunt for a great doctor all over again.
Amazing doctors can fall right into your lap, but sometimes you need to do some digging and research.
The behind-the-scenes work
At the end of the day, I find the most helpful advice comes from fellow IBD patients. There are several ways you can approach this.
Look up GIs in your area who specialize in IBD. This is key. You don’t want a run of the mill GI, if you have Crohn’s or ulcerative colitis you need a GI who specializes in IBD.
Check out online reviews and what people have to say about them.
Do a call out on your social media and see if anyone locally has any recommendations or personal experience. You want to hear the good, the bad, and the ugly. I have gained incredible insight this way. I had one fellow IBD friend message me about her experience with the provider I made an appointment with—and it made me a bit concerned. This week during my well woman visit, another IBD mom, who happens to work as a nurse practitioner in my OB’s office, told me about her awesome GI who is in the same group—so I plan to switch my appointment per her recommendation. This insight is GOLD.
Interview several GIs. Don’t feel pigeon-holed by only meeting with one possible new provider. Make a few appointments and see who jives the best with you. I have two appointments in January with two new GIs. My last clinic appointment was March 2023. I was supposed to be seen in October…that’s the soonest I can be seen.
Come up with a list of questions and see whose responses give you peace of mind and make you feel empowered to take on your IBD.
Be mindful of the office staff and how they treat you on the phone.
Make a pros and cons list of staying with your current GI team or starting fresh.
Decide if the doctor’s gender matters to you. I’ve had two male GIs and one female. I personally enjoyed having a female during my family planning and pregnancies, but now that my family complete it’s not *as* important to me, but still preferred.
To switch offices all your records and a referral will be needed by your current office, so make sure all your ducks are in a row and that the two offices have communicated. I made it clear with my current office that I am being seen by both IBD Centers, to see who is the best fit for me.
What questions to ask possible new providers
You may be wondering what to ask a new doctor or where to even start with your saga-long health history. We all know how rushed clinic appointments can feel. Here are some of the questions I plan to ask in January once we get the basic health questions out of the way.
How often will you be seeing me in clinic?
How often do you like patients to get labs? What kind of labs will you draw?
Will I keep my current medication regiment (ex. Biologic)? Will I stay with the originator/reference product biologic or are you planning to switch me to a biosimilar. Note: For you to be switched, your GI has to write a script for that to happen.
What days of the week are you in the clinic to see patients? If you have childcare or work conflicts, this can help so you know if their schedule/availability matches with your needs.
What hospital(s) do you treat at?
Are you apart of any research studies going on?
How often do you like patients to get a colonoscopy?
If I need pain medication to manage my symptoms, will you prescribe it? My last GI refused to—and I found that to be ridiculous.
Do you perform intestinal ultrasound here and if you don’t yet, when do you plan to?
If I run into insurance issues, will you go to bat for me and write an appeal letter or do what it takes to make sure I receive my medications on time?
Final thoughts
It’s jarring and takes a lot of time and energy to find a new provider but stay positive and know there are so many incredible gastroenterologists out there who genuinely care about patients and about helping our community out in any way they can. You are not civilly bound or married to your doctor—it’s not about hurting feelings or trying not to be a bother, be bold and do what’s best for you. I’m grateful to be in remission right now. My heart hurts knowing so many patients going through this same ordeal, while flaring, don’t have the luxury of taking their time or the privilege of living near an IBD Center with options. I always try and tell myself and I think this perspective will help bring you clarity, too—think of yourself at your sickest, lying in a hospital bed. Would you want that person leading your care? If there is any doubt or hesitation, keep looking for the right doctor for you.
It’s no surprise IBD impacts so much more than just our guts. Not only is there the gut and brain connection, but also the complex nature of our chronic illness(es) that can cause serious anxiety, depression, and mental health issues. The isolating nature of Crohn’s disease and ulcerative colitis, the unknowingness of what the next day holds, and the never-ending laundry list of procedures, labs, scans, and surgeries, year after year is a lot for any person to go through.
Even though I’ve lived with Crohn’s disease for more than 18 years, and have seen three different gastroenterologists in that time, not once has my mental health been brought up during a clinic appointment. When treating a person for IBD, the health of the whole person needs to be considered. I ran a poll on Instagram asking the IBD community if they’ve ever been to therapy. Out of 185 respondents, 70% seek therapy, 18% have not, and 12% are considering it.
I did an article in September 2020 about why a specific public bathroom at a grocery store I used to shop at triggers me and shared tactics for coping. You can read the article that featured Dr. Tiffany Taft here.
This week on Lights, Camera, Crohn’s we hear from those in our community about the advice that’s resonated with them the most since receiving their IBD diagnosis.
The words that have made a lasting impact
Olivia: “3% effort is still effort. You’re not going to be able to give 100% every day and that’s OK. Your best can look different from day to day.”
Julie: “It’s not your fault, you didn’t do anything wrong.”
Kristen: “You can’t drive forward if you’re always looking in the rearview mirror.”
Sarah: “Medical trauma is trauma and to give myself credit for all I have overcome.”
Cindy: “Remove all IBD related stressors from the bedroom to avoid impacting sleep. In our case, this meant no Humira injections for my daughter while sitting on the bed or nearby it.”
Tina: “Imitation is the best form of flattery.”
Lauren: “Don’t Google things you’re worried about, like symptoms.”
Jennifer: “Stay in the present.”
Heather: “Sometimes you just need to take a nap!”
Myisha: “If it’s not going to matter in five years, don’t give it five minutes of your energy.”
Kate: “It’s not your fault.”
Susan: “I’ve never seen a therapist, but I always tell myself it could always be worse.”
Stacey said: “You can’t control how seriously people take Covid. You can only control how you protect your physical and mental health. You have to put your health first. And, if people don’t agree with your choices, then that’s their problem. You can’t risk your health just to make it easy for others or to placate them. You come first in your life.”
Robin: “The “things” I do—my work advocating for others, supporting others, helping others face challenges with their diseases—I deserve that, too. Not from other people, but from myself. The beauty in therapy is that you’re receiving a non-biased/outsider opinion. This person that has no side and will sometimes say something you’ve heard 1,000 times in a way you’ve never heard before or even in a better way that allows you to really listen to what’s being said. To absorb it. Even to say it multiple times with no judgement if that’s what’s needed. Also, EMDR, which is a whole other thing and only part of the therapy experience.”
What is EMDR therapy?
Several people said EMDR therapy was their favorite and has been lifechanging. So, what exactly is it? Eye movement desensitization and reprocessing (EMDR) is a fairly new, non-traditional type of psychotherapy that’s popular for treating post-traumatic stress disorder. EMDR focuses on the natural tendencies our brains have for healing from traumatic memories. There are mental blocks (such as feelings of self-esteem issues and powerlessness) that can prevent us from healing. During EMDR, you are allowed to process the bad memories and experiences to start healing yourself. This helps our brains process challenging thoughts and feelings in a healthier way. Chances are through your patient journey you’ve endured several vivid and significantly painful moments that you haven’t been able to process and heal from.
Supportive Resources about managing mental health and IBD
There’s no doubt life with IBD brings on financial, social, and emotional pressure. These constant looming stressors can contribute to flares and unpleasant symptoms. This is where Project Crohn’s comes in. It’s a ministry that supports young adults with Crohn’s disease and ulcerative colitis. The main mission of this 501(c)3 non-profit, which launched in 2022, is to offer free access to mental health counseling, financial planning, and 1-1 mentoring. Anyone with IBD ages 18-30 is invited to apply for support programs that are possible thanks to generous donors.
This week on Light’s, Camera, Crohn’s we hear from the creator of Project Crohn’s and learn more about his mission to make a difference in the IBD community.
How Project Crohn’s came to be
Two weeks after John Christian Kuehnert’s 18th birthday, he started to experience intense gastrointestinal pains.
“It culminated in me passing out and being rushed to the hospital. A surgeon performed an emergency bowel resection, after finding a mass the size of a grapefruit on my intestines,” said John. “My surgeon saved my life, and I spent the next week in the hospital recovering. It took another eight months of slow recovery and meeting with gastroenterologists to discover I had Crohn’s disease.”
For the next 7-8 years, during college and after, John dealt with chronic pain that disrupted almost every aspect of his life. In recent years, he’s reached remission, but it took him a long time to get to where he is today.
“In college I started to see a clear connection between highly stressful situations and flare-ups of my disease. Sometimes, the internal pain would start less than a minute after being put in a stressful situation. Humira and 6MP have been crucial for me reaching remission. However, learning how to manage the primary stressors in my life has had a major impact on me reaching remission. I created Project Crohn’s to help others manage their stress and flare-ups more effectively,” said John.
The debilitating and unpredictable pain from IBD can lead to depression and anxiety and cause college students and young adults to have difficulty managing stressful coursework, while trying to juggle the debt from medical bills and college combined. John is determined to help ensure that no college students with IBD in the US face IBD alone. Project Crohn’s was created to provide the support his younger self could have benefited from.
Putting Mental Health and Financial Literacy in the Spotlight
Mental health is the primary focus of Project Crohn’s. The mind-to-gut connection is strong. This year, Project Crohn’s goal is to raise $100,000 to cover program costs for 25 young adults in the United States who are taking on IBD. Every penny from every dollar donated to Project Crohn’s is given to program recipients. By reducing stress and helping those with IBD learn to navigate life while managing their mental and emotional health, Project Crohn’s focuses on providing counseling and therapy services, while also building other helpful resources.
Here’s a look at the three main pillars of support that Project Crohn’s provides:
Personal mentoring: Ask helpful career-specific questions to help process challenging situations, while putting life’s crossroads in a positive perspective.
Financial advising: 1:1 virtual meetings to discuss your current and future financial situation, explore options, and suggest changes.
Counseling therapy: Promotes positive attitudes and develops effective coping strategies.
How to get involved and apply for assistance
You can apply for support directly on the Project Crohn’s website. It takes about 60 seconds. John wants people in our community to apply ASAP. Everyone who is accepted receives a scholarship, but currently, there are a limited number of scholarships available.
“We’re building a world where every young adult with IBD has full and free access to the secondary health resources they need to reach remission,” said John.
Chances are you’ve heard of Pelvic Floor Therapy but may not know what this entails or why so many people in the IBD community are talking about it. Individuals with IBD can have persistent symptoms of fecal incontinence, constipation, rectal discomfort, and diarrhea, despite having their IBD in remission with medical therapy. These persistent and often debilitating symptoms can have a major impact on your wellbeing and quality of life.
This week on Lights, Camera, Crohn’s we hear from two gastroenterologists from Mayo Clinic along with several IBD warriors who provide insight, helpful guidance, and information about pelvic floor therapy.
What exactly is Pelvic Floor Therapy?
Pelvic floor therapy is a treatment program performed by pelvic floor therapists to retrain the pelvic floor muscles to address underlying issues such as constipation, fecal incontinence, or urgency. Many patients with IBD in remission may develop pelvic floor dysfunction which is usually diagnosed from a digital rectal examination in combination with an anorectal manometry test.
“During an anorectal manometry, a small catheter with sensor probes and a balloon is placed into the rectum and is connected by a wire to the computer. During the test you are lying on your side and asked to perform maneuvers to determine how your pelvic floor muscles work. At the end of the test, they inflate a balloon in the rectum to help evaluate for sensation and then ask you to simulate having a bowel movement by pushing the balloon out,” explained Dr.Katie Dunleavy, MB BCh BAO, Gastroenterology Fellow, Mayo Clinic.
Based on normal values for your age and gender, you may be diagnosed with a pelvic floor dysfunction. Dr. Dunleavy went on to say that in IBD, there is less research on the benefits of pelvic floor therapy.
“But we have seen benefit in up to 80% for patients in remission who continue to have symptoms of constipation, urgency, or incontinence once active inflammation is fully ruled out. Similarly, some patients with IBD undergo total proctocolectomy with ileal pouch anal anastomosis (IPAA) may also benefit from pelvic floor therapy if they have issues emptying their pouch,” said Dr. Dunleavy.
Additionally, those with IBD who’ve had pelvic floor surgeries might experience sexual dysfunction and this type of therapy directed towards relaxation of the pelvic floor can lead to a better sexual experience.
Pelvic Floor Dysfunction does not discriminate across genders
Any person can develop pelvic floor dysfunction and may benefit from treatment with pelvic floor therapy in the right setting.
“While most studies describe pelvic floor in females, I believe individuals from all genders deserve evaluation of their pelvic floor the recommendation for pelvic floor therapy. Furthermore, individuals of a transgender experience, might undergo gender affirming surgery that impacts their pelvic floor muscles, and would benefit from pelvic floor therapy,” said Dr. Victor Chedid, M.D., M.S., Gastroenterologist at Mayo Clinic.
Dr. Dunleavy says, “As many as 50% of people with chronic constipation have pelvic floor dysfunction, which means there is impaired relaxation and coordination of the pelvic floor and abdominal muscles during evacuation. Some common symptoms include straining with hard bowel movements, a feeling of incomplete evacuation, pain with intercourse, or urinary symptoms.”
Certain risk factors make it more likely for men or women to develop pelvic floor dysfunction, this includes instrumented vaginal deliveries, chronic constipation with straining, prior surgery, prolapse, and age. It is important for men and women to discuss symptoms with their doctor to ensure they get the appropriate testing and treatment.
Apprehensive about getting looked at?
It is important for people diagnosed with pelvic floor dysfunction to seek out a qualified pelvic floor therapist who is specialized in GI and evacuation disorders. These are generally physical therapists or occupational therapists who complete extra training in pelvic floor therapy.
“You should find a therapist you trust and will feel comfortable with during your therapy sessions. The therapists who work in this area are fantastic and work diligently to explain what they will be doing. My patients tell me that the relief they feel from therapy well exceeds the apprehension they had prior to starting sessions,” said Dr. Dunleavy.
It’s important for patients to feel comfortable talking with health care providers and addressing concerns they may have on this topic. Dr. Chedid typically discusses the benefits of pelvic floor therapy with patients during clinic visits as a beneficial treatment option that does not require surgery. He provides patients with exercises and techniques to do at home that will have a major impact on general wellbeing and health.
“Individuals with IBD experience significant “negative” experience with the bathroom and with defecation that can be quite traumatizing, and therefore when they get in remission, they still have a negative association with the bathroom and might have “fear of defecation” despite being in remission. I equate that to “PTSD of the pelvic floor”, which is not a medical term, but an analogy I use. Therefore, pelvic floor therapy is essential to reverse this negative experience with the bathroom and make their bathroom experience a healthier and satisfying experience. Almost all patients who I describe this to get it right away and understand the importance of pelvic floor therapy,” said Dr. Chedid.
He adds that it’s imperative health care providers communicate with patients and ensure that the therapy session will be a safe space with at rained physical therapist who is trained in empathetic and trauma informed care. This is essential in putting a person’s mind at ease, as many patients might have experienced sexual trauma in their lifetime that makes pelvic floor therapy triggering for them.
The impact of Pelvic Floor Therapy post operatively and after IBD pregnancy
If you’ve had a total proctocolectomy and an ileal pouch anal anastomosis (IPAA), you might experience non-relaxing pelvic floor dysfunction or pouch evacuation disorder. This is similar to the rectal evacuation disorder in individuals with pouches.
“Typically, this is identified by history, physical exam, pouchoscopy, anorectal manometry and dynamic imaging of pouch evacuation. Additionally, someone who has had any form of trauma to the pelvic floor, including Perianal Crohn’s disease or surgeries for Perianal abscesses or fistulas or lacerations due to vaginal deliveries after pregnancy, these patient might experience rectal evacuation disorders after recovering and healing. In the proper patient, if identified by history, physical exam and the right testing, these patients will benefit from pelvic floor therapy,” said Dr. Chedid.
At the same time, there isn’t a lot of research on pelvic floor therapy in the post-operative state or following pregnancy in patients with IBD.
“There have been several attempts to find normal values for patients with IPAA who have undergone colectomy to help diagnose pouch related pelvic floor dysfunction. We generally recommend patients wait until the anastomosis following surgery is completely healed prior to having an evaluation with a balloon to ensure no complications. Similarly, patients who have recently undergone delivery from pregnancy will likely require time to heal. I would discuss this with your doctor to have more personalized information,” advised Dr. Dunleavy.
If your GI recommends pelvic floor therapy for your personal symptoms and struggles the overall response is tremendous.
“Recommending pelvic floor therapy to everybody, without identifying the right patient who would benefit from it is not typically beneficial. Therefore, in the right patient, pelvic floor therapy is extremely effective,” said Dr. Chedid.
What IBD patients have to say
Stacey has ulcerative colitis and went from having an ostomy to becoming a j-poucher. She’s a big proponent of Pelvic Floor Therapy. After her 3-step surgery to j-pouch in 2021, she knew she needed at least an evaluation from a pelvic floor physical therapist (PFPT) after urination became a challenge and inserting tampons became impossible during her takedown recovery.
“My surgeon wouldn’t write me a referral, citing that the anorectal manometry tests prior to surgery were all normal. My GI doctor didn’t want to go against the clinical judgement of my surgeon, so I couldn’t get one from her either, and finally I received a referral from my OB/GYN after explaining that penetrative sex was impossible (and felt unsafe to me) to even attempt,” Stacey explained.
These delays resulted in 5 months of significant pelvic pain that she felt ill-equipped and under-supported to handle, and this time could’ve been saved if she had gone into surgery with a referral to see PFPT from the get-go, even if she didn’t need to use the referral; it would’ve been nice to have.
“It’s so wild to me that orthopedic surgery has extensive PT rehabilitation protocols, and yet I was met with such resistance to gain access to the professionals who could help support my muscular recovery, even after such extensive GI surgeries,” she said.
During Stacey’s initial encounter with the PFPT, she spent the majority of the visit trying to gain a strong understanding of her entire pelvic and holistic health history, everything from sexual health to physicality to surgery, and all the in-between.
“She asked for consent prior to any invasive exams and explained them in thorough detail, reminding me that I was in control and could always choose to stop an exam if I felt unsafe. She continued to breathe with me during the exams and communicated her findings in real-time, which made me feel at ease. At the conclusion of our visit, I was told that I was experiencing hypertonic pelvic floor dysfunction from a decade of clenching for dear life trying to make it to the bathroom with mod-severe UC, even before my surgeries. The tightness of the muscles, coupled with three extensive pelvic surgeries, contributed to the pain and issues I was experiencing,” said Stacey.
During the visits with the PFPT, Stacey discovered she had no awareness of her pelvic floor muscles whatsoever. She could not distinguish the relaxation of the muscles from the contraction, and the entire area felt numb to her, like it was a holy, empty space. She says this made the exercises challenging to understand initially. She was prescribed specific exercises, not Kegels, including strategies to gain awareness of supportive muscle groups so she could begin to engage with this part of her body and start to heal.
“What I did not expect, however, was for this experience to be as enlightening and empowering as it was. Slowly but surely, the little life things showed me that they’re the big life things: being able to fully urinate in under 20 minutes, FINALLY being able to use tampons again- these were MASSIVELY important to my quality of life, and they became possible through the help and support of a PFPT and my adherence to their prescribed exercise regimen. I even realized one day while holding one of my exercise poses that I could feel the muscles DEEP in my abdomen! They felt heavy, full of pressure, as if they fired on to greet me, and then suddenly… I could feel them gently, slowly, RELEASE. I cried tears of relief realizing that I had been fearful of reconnecting with these muscle groups, and it really was safe and okay to be in my body.”
Stacey says she had NO idea these muscles existed, yet here they were. Had they been here all along?! She says she numbed them out from years of associating the deepest parts of her with pain from UC; and that her brain was protecting her. I truly wonder. All she knows is the day that she could FEEL her body experience relaxation and safety with FULL awareness of these pelvic muscles is the day that she knew that healing from these surgeries was going to be possible.
After one year of PFPT, Stacey “graduated,” not free of pain, but with the tools to know how to live within the ebbs and flows of pain. She tells me she still relies on the tools and bodily awareness that she gained through the experience.
Jessie was diagnosed with Crohn’s disease when she was 15 years old and after more than 22 surgeries later, at the age of 38, she says she completely underestimated how much her pelvic floor was affected over the years by the inflammation, surgeries, and her pregnancy.
“I was “guarding” badly (a response to pain) and so weak. I was having bladder issues, pelvic pain, rectal pain and so much more. After 2 years of being consistent going to pelvic floor therapy and doing the exercises I can say I’m about 85% better. I can’t say enough how much of a HUGE difference pelvic floor therapy made in my life and my IBD journey. My therapist explained it to me like this “you don’t have orthopedic surgery on your knee, wrist, ankle, spine, etc. and not get prescribed physical therapy. Same with an injury. It’s just standard procedure. But, for some reason, even though your pelvic floor consists of tons of muscles, ligaments, tendons, bone, etc. the same process is not considered – but IT SHOULD BE!” Your pelvic floor needs to be rehabbed after any injury, strain, surgery, etc. just like any other muscle/tendon/ligament/bone in your body,” explained Jessie.
Claire started PFPT because all imaging and tests showed that while her inflammation is under control, she still experiences extreme pain.
“I was tested, and they found I have dyssynergic defecation. This was caused by my chronic pain due to long-lasting fissures as well as chronic constipation. I’m grateful my GI thought to have me tested for this, as many don’t make that connection since the symptoms are so similar to Crohn’s. During PT, I have learned that my muscles do not relax and are constantly tense, so we work on trying to get them relaxed in order to successfully pass bowel movements. Like all other PT, one downside is that it is a lengthy process and takes up a lot of time. I have a one-hour appointment every week for 12 weeks and an hour or two of exercises and stretches on my own every day.”
She says she’s started to notice improvements and found ways to make her pain more bearable, though it’s something she will have to continue working on for a long time.
Tiffany has accessed pelvic floor therapy for herself and having previously been a physio and a fellow Crohnie, she recommends people speak with their doctors because it can make a world of difference, especially after surgery, hospitalization, or a flare.
“The neural connection we have to our trunk and pelvic muscles can be re-trained and strengthened, allowing less pain, and for me an improved sense of control over urgent bowel movements.”
Preslie was diagnosed with Crohn’s in June 2016, and after two years of battling severe symptoms, she had a colonoscopy that showed she was in remission. It may sound like lovely news, except Preslie was still living with a ton of pain, so her and her care team started digging for answers.
“This led to an Endometriosis diagnosis in August 2018. That was great news, except I STILL was not getting relief, and started having severe burning anytime I urinated, but always tested negative for UTIs. I went to a male urologist who told me I was just constipated, which was not the case. After well over a year of extremely painful sex, constant pain, and burning when I peed, I went to a urogynecologist who talked with me for less than 10 minutes and had the diagnosis: Interstitial Cystitis and Levator Ani Syndrome. I finally felt heard. I started pelvic floor therapy shortly after and immediately felt relief.”
Rocio says pelvic floor therapy was recommended to her by a home health physical therapist who was treating her for neuromuscular issues after bowel resection surgery for her Crohn’s in 2020.
“During my resection recovery, I was struggling tremendously with constipation, which was unfortunately always my issue with my IBD. Although uncommon, it’s been my reality for the last 20-plus years. The reason I share this is because I wish someone would have recommended pelvic floor therapy to me over all those years.”
She began seeing a pelvic floor therapist in January 2021 and completed two years of treatment. During that time, Rocio says she learned a lot about the intricacies of all the muscles, the nerves, the internal blood flow, and so much more. Because of two fistulotomies and a stricturplastly, she has numerous anatomical issues which prevent her from having normal bowel movements.
“Pelvic PT changed that completely and I have normal/formed BM’s every single day, without any signs of constipation and without any straining. I’ve learned ways in which I can help relax and release the pelvic floor should I face issues in the future.”
Separately, Rocio has learned how beneficial pelvic floor therapy is for many IBD patients post-operatively, including the ileal resection she had. Her therapist worked on her abdomen significantly during appointments to prevent adhesions and scar tissue. She says there are so many benefits to pelvic floor therapy that it does make her wonder why more IBD health care providers aren’t encouraging patients to pursue care.
Annie started pelvic floor therapy two weeks ago. She was referred based on suspected interstitial cystitis, not her IBD. She was shocked to learn during her first appointment that treatment was for all conditions that involve urgency of any kind.
“The game changer was the pelvic exam itself, I never realized what my PT noticed right away, which is that my first layer of pelvic muscles are unnaturally sensitive. This is massively helpful for IBD and IC, but the most validating part was having a lifetime of excruciating intercourse and painful pap smears and knowing the reason. My PT told me this is not how my life has to be. After just two weeks of exercising my pelvic muscles with a vaginal wand and daily targeted yoga, my urgency, both with my Crohn’s and IC, has gotten so much more manageable. I started this journey running to the restroom every 30 minutes (even at night), now I feel like I’m starting to get my life back.”
Jasmine says pelvic floor therapy helped her a ton following j-pouch surgery.
“I truly believe it should be integrated into post-op care plans, I had to seek it out and ask for it.”
Amy says that while she doesn’t have experience yet with PFPT, she has a complicated Crohn’s history for the past 25-plus years. Now that she’s over 40 and has had three vaginal births, she recently asked her doctor about pelvic floor therapy.
“Because of all the IBD women sharing their journey with this on the Internet, it inspired me to look into therapy for myself. In my first request, the response was that it might be a fantastic idea, but to wait and see. My next visit is in a couple of weeks and I’m looking forward to utilizing this article to share and take with me to help me advocate for myself.”
A look at the insurance piece
Yes, pelvic floor therapy can be covered by insurance, but it can vary based on the type of insurance. It is also important to ask about coverage for biofeedback therapy which is an essential part of the therapy based on prior research studies. Many insurance companies will need proof of diagnosis using an anorectal manometry with balloon expulsion test or defecating proctogram.
“If the proper indication based on testing is identified with the referral to pelvic floor therapy with a script written by someone’s GI provider, then typically insurance should cover it,” said Dr. Chedid.
Closing thoughts on Pelvic Floor Therapy and IBD
It is important to discuss with your doctor if pelvic floor therapy is right for you. Once patients with pelvic floor dysfunction have these basic tools, they can begin retraining the pelvic floor muscles with biofeedback. Biofeedback provides auditory and visual feedback to help retrain the pelvic floor and relax the anal sphincter. Biofeedback training is the treatment of choice for medically refractory pelvic floor constipation, with some studies showing improvement in more than 70 percent of patients. Patients also learn to identify internal sensations associated with relaxation and long-term skills and exercises for use at home.
At Mayo Clinic patients have had more than 70% response at 3 months following initiation of pelvic floor therapy. The response usually takes weeks to months to see a clinical difference and requires patients to practice their exercises and biofeedback at home.
“Although many centers are familiar with retraining techniques to improve pelvic floor dysfunction, few have the multidisciplinary expertise to teach patients with constipation how to appropriately coordinate abdominal and pelvic floor muscles during defecation, and how to use bowel management techniques, along with behavior modification, to relieve symptoms. Because pelvic floor dysfunction can be associated with psychological, sexual, or physical abuse and other life stressors, psychological counseling is often included in the evaluation process,” said Dr. Dunleavy.
If you have chronic pain, you may also need to see a physician to have these issues addressed prior to starting pelvic floor therapy.
Key takeaways from fellow IBD patients
PTs are an excellent resource, but just like getting an IBD-ologist is superior to a general GI doctor, PFPTs are an even stronger resource, ESPECIALLY in the context of chronic GI disease where so many of our deepest muscles are constantly working on our behalf.
You can always say “no thanks!” You don’t need to agree to any sort of exams or exercises that you’re not ready for, and a compassionate PFPT will empower you to make decisions and communicate in alignment with your body’s needs.
ANYONE can benefit from PFPT: any age, any gender.
Normalizing pain and discomfort is a survival instinct, but it’s not necessarily serving you for the GOOD life- it’s okay to get evaluated if you’re concerned about sexual pain or dysfunction, pain with periods, or if you also have IBD and simply want to be sure that you’re supporting your pelvic and spinal muscles the best you can so that you can, especially in the bathroom!
YOU get to decide! Having an evaluation may be all you have the capacity for, and that’s okay! You can return for a plan of attack later, or you can wait until you have the capacity to dive in head-first! There’s no one right way.
If you decide while talking to a PFPT before they do ANY manual evaluations that something doesn’t feel right- YOU GET TO CHOOSE, and you can always, always say, “nevermind”. Advocating for your body is always progression in your healing journey, every single time.
SPEAK UP! It’s RIDICULOUS that patients have to ask and ask and ask for the bare minimum, but if it helps your quality of life and it’s within your capacity- it’s certainly worth it.
A big deterrent for patients can be cost, but the investment is worth it, if you can swing it. You would be surprised how much every system of your body is so connected and feeds off one another!
Helpful resources to check out
Find a Pelvic Floor Therapist Close to Home
Utilize the “Section on Women’s Health” or the “Herman & Wallace” websites. Both these groups train therapists who specialize in pelvic floor disorders.
The Section on Women’s Health (SOWH) website has a “PT Locator” tab. You can enter search criteria including your geographic location (e.g., zip code) and specialty (e.g., constipation) to identify a therapist closer to home.
The Herman & Wallace website has a “Resources” tab under which you will find a “Practitioner Directory.” Use the map features to locate a therapist near you.
Utilize the “find a provider” section of www.pelvicrehab.com for a local PT by zip code.
The therapists who work with pelvic floor disorders may be in Gastroenterology, Urology, Gynecology, Physical Medicine, and/or Women’s Health, etc. You may be able to find someone through your local physicians or contacts.
For those in Canada, check out the Canadian Physiotherapy Association. It has a “Find a Physiotherapist” tab which allows you to connect with the sites of participating provinces/territories. By specifying a “Women’s Health” therapist or equivalent, you may find someone who specializes in the field of incontinence, pelvic pain, constipation, etc.
The benefit of pelvic floor therapy also involved patient education, relaxation exercises, diaphragmatic breathing, and correction of maladaptive toileting behaviors. Some studies have shown improvement in quality of life relating to symptoms, and mental health.
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