Surgery for Inflammatory Bowel Disease, Part 1: When Medications and Diet Aren’t Enough

Weighing the decision

The dreaded “S-word”. The thought of surgery can bring up a ton of emotions for those living with IBD. Some are negative, like fear, panic, and uncertainty. Others are more positive – change, hope, and healing.

This post is for anyone with IBD who may be considering surgery. Or has undergone surgery…or is supporting someone undergoing surgery.

When I was first diagnosed with IBD in 2016, the prospect of surgery rarely crossed my mind. But by late 2019, things had changed considerably. After more than six months of relative stability, I was in the midst of yet another flare. Physicians were now telling me I was no longer responding adequately to Stelara. This was my 3^rd biologic in the span of 18 months. It was not good news.

Once again…I was constantly on the toilet or throwing up. Once again…I was in and out of the hospital. Once again…I needed high doses of prednisone to control the inflammation.

I was given two options. I could try a 4^th biologic. However, the chances of successful remission after failing the previous three biologics were meager.  Option #2: surgery. Colectomy and ileostomy to be more precise.

At the time, the decision seemed like a relatively easy one. I was so sick of being sick all the time. Meds weren’t working. I was miserable. Surgery gave me the best chance of regaining some quality of life, so I knew that was the direction I had to go. I needed to say bye bye to my colon.

All I could do was hope for the best. It was a scary time.

What are my odds, Doc?

Despite advances in IBD therapies, surgery can be relatively common for people with Crohn’s disease and ulcerative colitis.

Recent data shows that, for people living with ulcerative colitis, approximately 20% (1 in 4) will require some form of surgery in their lifetime. Persons with Crohn’s disease fare even worse on this statistic, with almost 80% (4 in 5) needing at least one surgical procedure in their lifetime, even if it is just a minor operation.

Why might you need surgery?

There are numerous reasons why someone with IBD might need a surgical procedure. One reason may be a failure to respond to IBD medications, such as biologics. Surgery may also be required if you develop antibodies to biologics or other IBD meds, and those medications lose their effectiveness.

When severe inflammation does not respond to a combination of steroids, biologic meds, and other IBD drugs, surgery is usually the next step in the treatment plan. This is often the case when flares become extremely debilitating or life-threatening – think 10+ stools per day, continuous bleeding, abdominal pain and swelling, and severe toxic symptoms like fever and anorexia that don’t go away.

Other symptoms that may warrant surgery are colonic perforation (a hole or tear in the colon), bowel obstruction, major hemorrhage (bleeding), or evidence of malignancy (tumor or cancer). Finally, in the case of Crohn’s, people often need surgery for issues such as fistulas (tunneling sores in the GI tract), abscesses (collections of pus), or strictures (severe narrowing of the intestine).

What are the main types of surgery?

The type of surgical procedure will depend on various factors, such as the extent and severity of your disease and whether you have been diagnosed with ulcerative colitis or Crohn’s.

In Ulcerative colitis

Colectomy with ileostomy: the most common type of surgery for UC. Involves the removal of the entire colon (large intestine). An opening in the abdomen is then created, and a section of the small intestine is attached to the end of the opening (called a “stoma”). Waste is collected in a pouch that is worn on the outside of the body. Depending on the severity of the disease, the rectum may be left intact to allow for future J-pouch surgery.

Proctocolectomy: similar to above, but also includes the removal of the rectum/anus. This surgery is “curative” of the GI symptoms of UC.

J-pouch surgery: involves removing the colon and creating a new reservoir from a section of small intestine. The reservoir is then attached to the anus. Persons with a J-pouch often have more frequent, watery stools, but bowel movements otherwise occur normally.

In Crohn’s disease

Bowel resection: involves removing the affected portion of the intestine and reattaching the remaining healthy sections. It is often done in cases where there is a blockage or narrowing of the intestine.

Stricturoplasty: involves widening a narrowed section of the intestine without removing it. It is often done in cases where Crohn’s disease affects multiple sections of the intestine.

Fistulotomy: involves creating an opening in the skin near the anus to drain a fistula.

Proctocolectomy: only done in severe cases of Crohn’s disease, as it is not a curative procedure like in ulcerative colitis (disease can still be in small intestine).

Weighing the Pros and Cons

Surgery for IBD is a big (and permanent) decision. One thing to be mindful of is to ensure you have explored all other treatments/options to your satisfaction. Of course, this will all depend on the severity of your disease and how urgently surgery may or may not be needed. Some people have had success with things like Total Parenteral Nutrition (TPN), Fecal Microbiota Transplantation (FMT), clinical trials, experimental diets, and other interventions. I can neither recommend nor advise against any of those.

Before deciding on surgery, it’s essential to discuss the pros and cons with your doctor and consider your personal situation and preferences. While surgery is not always necessary, it can effectively manage the condition and improve quality of life.

However, as with any medical procedure, there are pros and cons to consider:

Pros:

• Improved quality of life: Surgery can help alleviate symptoms such as abdominal pain, diarrhea, and incontinence, greatly improving your quality of life.
• Reduced need for medication: Surgery can reduce or eliminate the need for medication which can have side effects or be expensive.
• Reduced risk of cancer: Surgery can lower the risk of colon cancer for those with a history of colitis.

Cons:

• Complications: As with any surgery, there are risks of complications such as infection, bleeding, or damage to surrounding organs.
• Lifestyle changes: Some types of surgery may require changes to your diet or lifestyle, such as needing to use an ileostomy bag. Body image and changes in physical appearance are also important considerations.
• No guarantee of a cure: Surgery is not a cure for IBD and may not completely eliminate symptoms.

Preparation is key

This one is key, and I can’t stress it enough. To the greatest extent possible, be prepared for everything and anything post-surgery. There will be healing…but you might experience complications. You will see improvements…but there also may be some challenges. You will have good days. And probably bad days. Anything can happen.

That is why it is so important to have the proper supports in place during your recovery: physical, mental, emotional, social…spiritual (if that is important to you). The mental part of healing can be just as hard as the physical. This will be the topic of PART  2 – “Coping After IBD Surgery”. Stay tuned!

For everybody healing out there, be gentle with yourselves.