Ashley’s Journey
From Hope to Despair and Back Again
On April 30, 2007, like millions of other young women, 21-year-old Ashley Killeen had to undergo a Caesarian section to deliver her first baby. Unlike most, however, hers was a rare emergency situation: she was suffering from severe pre-eclampsia, seizures driven by high blood pressure that can endanger the lives of both mother and baby. In addition to her blood pressure, her liver also was malfunctioning.
It was terrifying for Ashley and husband Chris. “The doctors said, the baby is stressed and we have to deliver now, or we will be in a situation where we have to choose between saving you or the baby, and we don’t want to do that,” Ashley said in a recent interview.
During the C-section, Ashley’s blood pressure topped out at 200/101, but she had no idea why the doctors were so concerned. “I didn’t realize it at the time, because I was numb, but the doctors were worried I was going to have a stroke. They kept looking at me, shocked, and asking me if I was okay, like they couldn’t believe it.”
Thankfully, both survived the operation, but Sheamus was born at a precarious 2 pounds, 15 ounces. He would remain in the Neo Natal Intensive Care Unit (NICU) for two months, and doctors weren’t sure that he would be able to walk and talk. After the trauma of not being able to bring her baby home and enjoy normal mother-child bonding, Ashley was excited when Sheamus could finally leave the hospital, but another issue was worrying her. “I didn’t feel right; I was in a lot of abdominal pain, long after I should have healed from the C-section,” she said. “I had followed all the instructions to take care of myself, take it easy. But at the five-month mark I was getting worse, not better.”
“You should be feeling a lot better now”
Ashley’s ob-gyn doctor recommended a forty-minute outpatient laparoscopic procedure to “take a look around.” Afterward, he had answers for her. “He told me my uterus had been stuck to my intestines by adhesions, but it wasn’t too bad, so he cut them away. He said I should be feeling a lot better, and he was right.”
Part of the reason Ashley felt better was knowing that her condition had a name: Adhesions Related Disorder, which refers to a whole host of complications as a result of adhesions. “You can’t imagine what a relief it is just to know that there is recognition,” Ashley said, “and that somebody out there understands what this pain is all about.”
Adhesions are bands of fibrous tissue that form around and among organs as a result of injury, infection, inflammation, or cellular stress. How common is this situation? Surgeries happen at a rate of 411 per day, and the majority are abdominal surgeries predominantly done in women. Adhesions occur in 70–90% of abdominal surgeries, whether minimally invasive (as in laparoscopies) or open, and more than 30% of those will have complications which can occur within thirty days to thirty years and when “lysed,” [SP1] or cut, during a procedure in 90% those bands of tissue re-form. So not only are adhesions incredibly common, they affect millions of people and have been virtually impossible to cure.
Three years after her first adhesions removal, a second son, Oliver, was born. This time Ashley and her medical team were proactive: they a planned C-section, she had an ob/gyn surgeon and a protective film, called Seprafilm®[1] was used around her uterus to hopefully prevent further adhesions. The second birth experience was much better, but even with that proactive preparation, Ashley was quickly again in enormous pain. She determined to live with it in the hopes that it would eventually subside. But ten months after the second C-section, it was the opposite — Ashley’s quality of life had deteriorated rapidly.
She was fatigued and in constant pain. “It hurt when I relieved myself; I could barely move my legs because of the pain in my lower abdomen. I couldn’t get out of my bed or get dressed without my husband’s help,” she said. “The worst was that I couldn’t pick up my children and could barely hold them. When I realized I was having a bad day every day, I finally went back to my doctor.”
Ashley’s doctor told her that given her history, it was likely more adhesions, and recommended a hysterectomy, reasoning that if organs weren’t there for adhesions to attach to, maybe the pain would also subside. This was the worst thing that the young mother could have been told.
“My only sibling is disabled and I had always been her arms and legs as a child growing up. I wanted more for my own and I had always wanted to have a large family. It was devastating.”
But, in the end, the pain and the prospect of a future where she could barely care for the two children she did have caused Ashley to give in. At age 23, the young woman whose primary dream in life was to have a posse of kids had a partial hysterectomy. The memory of making that decision still brings Ashley to tears when she describes it. “I had to grieve the loss of my entire vision of myself, of my planned life, my future, it was…” She just shakes her head.
“This will fix it”
The surgeon planned for a forty-minute laparoscopy, but the profusion of adhesions throughout Ashley’s abdomen meant that a full-scale incision and four-hour surgery was required to remove her Fallopian tubes, one ovary and her uterus, which had adhered to her bladder.
Following that surgery in February 2011, hopes were high among Ashley, her family and her doctors that the problem had been solved. “I felt that if this was the price I had to pay, so be it. If I had to give up my dream to be able to care for the two children I did have, that’s what I would do,” she said. It’s common that procedures are extended or aborted due to adhesions. And one in five patients get inadvertent bowel injuries when adhesions are cut.[2]
The couple felt the decision was validated when, following another long recovery, Ashley was feeling great. “I was still grieving the loss of being able to have more kids, but I felt good. My energy and mobility was like I was a teenager again. It was incredible. I was kicking soccer balls, running around with the kids.”
So imagine the crushing blow to Ashley and Chris when only a year and a half later, she started having familiar symptoms again. “Almost overnight I went from okay to not okay,” she said, sighing. “I was walking at an angle, always hunched forward because standing straight was too painful. I couldn’t believe I was back there again.”
After trying to live with it a few months, Ashley returned to her ob/gyn who told her because her reproductive organs had mostly been removed, he could no longer do further surgery and referred her to a general surgeon. The new surgeon thought he could figure out what was happening without doing surgery, but after every kind of scan, nothing was visible.
“It’s all in your head”
“One of the most infuriating things about adhesions is that they do not show up on any kind of traditional scan,” Ashley said. “For years people thought it was all in my head, because nothing showed up on tests. Even some of those close to me wondered if I wasn’t imagining things. I’m sure I have some trauma from all these experiences, but this pain is not in my head. It’s in my freaking abdomen.”
Not only have adhesions traditionally not been able to be imaged, there is no blood test. The only way to diagnose adhesions is visually by surgery through a camera, and the only way to get rid of them is to cut the bands of tissue out of the body.
Another issue Ashley encountered time after time was the lack of awareness about adhesions in the medical community and of the impact they have on patients’ quality of life, and how dependent on pain medications they become. “There were nurses and doctors that I had to see every month in order to keep receiving the pain meds, because they’re controlled substances, and I couldn’t believe how uneducated some of them were about adhesions,” she said. “They thought I was an addict, just drug-seeking. I had to try and explain to them that there was a big difference between addiction and dependence. I was absolutely dependent on those medications to survive, but if I wasn’t in constant pain, would I have taken them? Of course not.”
“We need to take all the organs”
It was now November 2012 and there seemed to be no other option than another surgery. After a four-hour, two-surgeon operation to remove the massive amounts of adhesions Ashley had, she was in pain almost immediately again.
The doctors recommended an even more invasive approach. “They told me that the only remaining thing they could do would be to remove all the organs that I could function without.” Even though she initially agreed, two days before the surgery, Ashley changed her mind. “By doing this, aren’t we just creating new wounds that would cause more adhesions?” she questioned. “And now we’re moving up higher — my lungs, heart, stomach — that was absolutely terrifying. I said, ‘I officially quit surgery. I’m done.’”
Though she would have one additional hernia repair surgery and scar revision that couldn’t be ignored in August 2015, Ashley had made her decision.
She was twenty-seven years old and had by now endured six surgeries in nine years, having lived in a constant cycle of surgery-recovery-pain. She was exhausted, physically and emotionally. Her strength to go on came from a strong independent spirit, the immense support of her husband Chris, and a return of faith in God that she experienced after she and Sheamus had both survived his birth. These were the tools she would need for the next phase of her life: acceptance.
After the final surgery in 2012, doctors admitted there was nothing left they could do that wasn’t surgical, referring her to long-term pain specialists to help her learn how to cope. “I finally had to come to grips with the idea that this was going to be my life,” Ashley said. “I was going to live with pain. It became a boulder that I couldn’t push away; I had to learn how to live around the boulder, how to give it space.”
“You have reason to hope”
Today at age thirty-seven, her two boys are teenagers, and Ashley still lives with ongoing episodes of debilitating pain. She has become an advocate of awareness about adhesions, and manages a Facebook group of nearly 1,000 people who suffer similarly. She has learned how to choose happiness, to not make her entire life about adhesions, and to find joy in goals that she can manage. She and her husband have started an antiques business, and purchased a giant Victorian house in New Jersey, their dream home.
And now Ashley and others like her have new reason to hope. After nearly two centuries of inability to treat or prevent adhesions effectively, according to a 2020 Cochrane Review article[3], researchers have developed a new drug candidate called TTX333, a proprietary formula developed by Temple Therapeutics. It has been shown in clinical studies to inhibit the development of post-surgical adhesions, which are very common, but until now there has been no effective way to prevent adhesions from occurring. Administered in liquid form into the abdominal cavity just before closure, it works to inhibit the over-production of the collagen. In normal amounts, collagen forms protective scars that help heal wounds, but if over-produced, creates the adhesions that wreak havoc in the body.
A paper describing the research around TTX333 has just been published in the distinguished European Journal of Obstetrics & Gynecology and Reproductive Biology, which celebrates and marks the first time in 187 years of medical literature that a pharmaceutical approach, after being tested in a double-blind randomized controlled study, resulted in a “complete absence of adhesions” being achieved at all abdominal sites in 93% of the treated patients. More importantly, it showed no harm or adverse events. An important factor especially after what Ashley went through.
The medical world is addressing the problem on a global scale. After five months of investigation, a group of researchers from more than twenty international universities will meet in August 2023 at the Global Recommendations Meeting 2023 Adhesions Prophylaxis to look at improving procedures to limit or eliminate post-surgical adhesions.
And a new technology called “CineMRI”[4] might finally bring adhesions into the imaging spotlight, making them for the first time visible without surgery.
Temple CEO Sanjeev Singh is on both a professional and personal mission to help patients who suffer with adhesions. Though the development process has been long, the results are well worth it to him and his colleagues. Upon the publication of the paper, Sanj said, “Pioneers are resilient and driven by a cause greater than themselves and know ambiguity and uncertainty is high during that journey. Conceiving, championing and creating a truly novel approach and innovation requires the validation of peers in the scientific community, and today we have achieved that for patients like Ashley who have suffered so much. We met many doubters but we knew that the struggle and journey was for millions who suffer in silence or die in the process. I have personally witnessed death in my own family from adhesions. It’s so common, yet it’s not talked about.”
Ashley is hopeful that actions like these might help people like her to finally have a less painful or pain-free life. “It’s thrilling to think that after all this time, science may be finally finding answers to something that has flown under the radar for centuries and that is, in fact, so incredibly common and debilitating.”
FOOTNOTES
[1] Seprafilm is a registered trademark of Baxter.
[2] Krielen P, Stommel MWJ, Pargmae P, Bouvy ND, Bakkum EA, Ellis H, et al. Adhesion-related readmissions after open and laparoscopic surgery: a retrospective cohort study (SCAR update). Lancet. 2020;395(10217):33–41. doi: 10.1016/S0140–6736(19)32636–4. PubMed PMID: 31908284.
[3] Ahmad G, Kim K, Thompson M, Agarwal P, O’Flynn H, Hindocha A, et al. Barrier agents for adhesion prevention after gynaecological surgery. Cochrane Database Syst Rev. 2020;3:CD000475. Epub 2020/03/22. doi: 10.1002/14651858.CD000475.pub4. PubMed PMID: 32199406; PubMed Central PMCID: PMC7085418.
[4] van den Beukel BAW, Stommel MWJ, van Leuven S, Strik C, IJsseldijk MA, Joosten F, et al. A Shared Decision Approach to Chronic Abdominal Pain Based on Cine-MRI: A Prospective Cohort Study. Am J Gastroenterol. 2018;113(8):1229–37. Epub 2018/06/27. doi: 10.1038/s41395–018–0158–9. PubMed PMID: 29946174.
