As part of our Chordoma Survivorship Initiative, we are posting a series of guest blogs about the common — but too-often under-discussed — side effects of sacral chordoma. Written by sacral chordoma patients, the three blogs in this series feature interviews with doctors experienced in treating the challenges experienced by sacral chordoma patients.
This is the second post in the series, written by sacral chordoma survivor and Chordoma Foundation Peer Guide Susan Hall. Susan talked with Dr. Stephanie Kielb, a neuro-urological surgeon at Northwestern Medicine, about the impacts of sacral chordoma and its treatments on the bladder and bowel, including options for managing bladder and bowel challenges during and after treatment.
If you or a loved one are experiencing similar issues, remember — you’re not alone. Responses to our Chordoma Survivorship Survey revealed that many of these challenges are common to sacral patients. If you need support or guidance for your specific experiences, we’re here to help.
Guest post by Susan Hall, sacral chordoma survivor
Sacral chordoma patients often experience side effects that impact the critical functions in the pelvis, including bowel, bladder, and sexual. While these functions are critical to the quality of every person’s life and health, they often aren’t discussed publicly.
Our intent with these blog posts is to take the embarrassment out of these discussions and address real questions from real chordoma patients in a candid, direct and — we believe — helpful and hopeful manner.
As a sacral chordoma survivor myself, my goal is not just to survive, but to thrive. I sat down with Dr. Stephanie J. Kielb, MD, Chief of Reconstruction and Neuro-urology in the Department of Urology at Northwestern Medicine, to discuss challenges sacral patients often have with bowel and bladder function, as well as options available to improve the quality of life for patients dealing with these issues. While the main focus of Dr. Kielb’s specialty is bladder function, she also shared insight and support for patients dealing with bowel issues, which we address in this blog, as well as for women experiencing sexual function challenges, which will be covered in the next blog in the series.
Dr. Kielb, let’s talk about bowel function. Who are the types of specialists one should see if they are having issues with bowels?
There are a number of doctors who can help with bowel issues, including:
- Gastroenterologists manage bowel function and do colonoscopies.
- Colorectal doctors perform colostomies and other surgeries.
- Physiatrists do a great job with bowel and bladder. A physiatrist can handle a lot of this. They refer to specialists like me for the more complicated issues. I’d start with a physiatrist for bowel management.
- Primary care doctors can be a good place to start but they may be less familiar with neurological problems than physiatrists.
Problems with the bowel typically include constipation and loose stool. It’s one extreme or the other. What can be done for bowel issues?
The good thing about poop is that it leaks less easily than urine. However, stool accidents are often more devastating than urine accidents because of the odor and the difficulty with cleaning up.
Sacral chordoma patients are typically dealing with constipation. The rectum is equivalent to the bladder in that, where the bladder stores urine, the rectum is a storage area for stool. Certain signals trigger the rectum to empty. There’s also a reflex when you eat that stimulates this. The rectum senses that you need to go. But if you don’t have that sensation, you don’t know the rectum is full. You’re not getting the signal. If you can’t go, the stool solidifies and acts as a plug at the bottom which backs everything up.
""There are a lot of things we can do to help. There are options that are low risk and very effective for helping you get control and get your dignity and your life back."
Stephanie J. Kielb, MD, Northwestern Medicine
The colon is a big tube. Depending on how long constipation goes on, the stool keeps backing up and backing up. And the colon keeps stretching out and stretching out. If you let things stretch out too much, the contraction becomes less effective, and the constipation keeps getting worse. Because of the constipation, liquid stool starts leaking around the plug, so you can start to have accidents with loose stool even though you’re extremely constipated. Eventually, this can lead to a blowout that either causes a massive accident or clogs the toilet. It’s a cycle people can get into if the bowel isn’t properly managed.
How, specifically, do you manage bowel issues?
You have to do two things to manage your bowel:
- Get the stool to pass through more easily.
- Find a way to get the rectum to empty.
Constipation is dry stool. You need hydration, fiber, and sometimes a laxative to move things. But I tell my patients to remember that fiber is like a sponge. If you increase fiber but don’t increase fluids, you’re actually making the problem worse because the fiber is sucking whatever moisture you have out of the stool. You have to hydrate so the stool is not dry and hard. It should be soft and formed. It shouldn’t be hard pebbles and shouldn’t be clogging up the toilet. Sometimes you need a laxative to get things moving. So that’s the first step.
Then, you have to get the rectum to empty. So, how do you do that? There are a few methods.
- Digital stimulation: Use a gloved finger.
- Suppository: There are different kinds — including one called the Magic Bullet which is more expensive but it’s absorbed quickly and acts faster so you’re not sitting on the toilet for hours.
- Enema: This involves putting fluid into the rectum and flushing it out.
- Peristeen device: For a lot of patients an enema doesn’t go up high enough and they are still constipated. This device attaches to the anus and pushes fluid up with pressure. It’s much more effective for neurogenic patients. It has to be prescribed by a doctor and you have to learn how to use it. Insurance doesn’t always cover it. But it’s a more effective option than a suppository to get the rectum clean.
We tell patients to deal with constipation from above and below:
From above, with fluids, fiber, potentially a laxative
From below, regular daily suppository and/or digital stimulation
Patients should plan to do these things at the same time every day — get into a routine. Either in the morning or at night and that will help the rectum empty so you don’t have this plug backing things up. This has to be thought about as daily management. It needs to be done in a pattern on a daily basis.
That way, the laxative, fluids, and fiber can help stool start coming through. But be aware, this process can take months. Patients don’t like it because they are having more accidents initially, but you need to get all that poop out. You need to get unconstipated in order to get control back of the bowels. Neglecting it makes the problem worse. Using a suppository every day may not be the most pleasant thing but it will help you get control back.
If things with your bowel change suddenly, though, or if there’s blood in the stool, talk with your GI specialist to see if you need a colonoscopy.
What about colostomies?
Again, it depends on the individual patient’s situation and goals. If the patient wants to live independently or for easier bowel management, it’s an option. For a lot of patients it’s easier to clean the bag out than trying to clean up your backside or put a suppository in. Colorectal doctors will tell you that a colostomy doesn’t change your constipation.
Any other resources that you can recommend?
Even though chordoma isn’t the same as spina bifida or spinal cord injury, the Spina Bifida Association and United Spinal Association both have great resources.
What else would you want chordoma patients to know about bowel issues?
This has to be thought of as daily management. “I’m going to brush my teeth, I’m going to empty my rectum.” Maybe not in that order, but it’s something that needs to be done on a daily basis so the patient has control over what’s going on in their bowel. Neglecting the problem just makes it worse.
Is there anything else you’d like chordoma patients to know as we close out today?
There are a lot of things we can do to help. There are options that are low risk and very effective for helping you get control and get your dignity and your life back.
This interview has been edited for length and clarity.