If you plan to have surgery for Crohn’s disease, a long-term recovery game plan can help ease anxiety about your procedure. Good preparation can also make the years after your surgery easier to manage, both physically and emotionally.
Like any surgery, Crohn’s surgeries carry risks of complications. Major long-term complications are not very common, but it’s important to know the different signs. Some types of surgeries also carry higher risks than others, so talk to your doctor about your specific procedure.
Pain after Crohn’s surgery is not uncommon, but it can be caused by many different things. If you have pain that lasts even after several weeks or months of healing, talk to your doctor. They will first want to make sure you don’t have an infection. Sometimes, it can be normal to have soreness for 6 months or longer.
Sometimes an infection after surgery can trigger an extreme response throughout the body, called sepsis. Some people are at higher risk than others, so talk to your doctor about your risks. Sepsis can be caused by:
- Abscesses, areas where pus collects during an infection
- Fistulas, infected tunnels that can develop between your bowel and the surface of your skin, another piece or loop of bowel, or another organ
- Marginal ulcers, when the stitches that connect pieces of your bowel have trouble healing and develop sores
- Anastomotic leaks, when fluid leaks through the stitches that hold together the connected parts of your intestines.
These may not show up until several weeks after you get surgery. Tell your doctor right away if you have any signs of these complications, including:
- Fast heart rate
- Fever or chills
- Stomach, chest, or shoulder pain
- Trouble breathing
- Fluid leaking from a cut made during surgery
- Nausea or vomiting
- Less urine
- Skin irritation or discharge near the anus
- Throbbing and persistent pain that may be worse when sitting down, coughing, or going to the bathroom
- Problems controlling bowel movements
Abscesses, ulcers, and fistulas can happen as a result of your surgery, but they are also common complications of Crohn’s disease itself. Your doctor can help you pinpoint the cause.
Problems With Your Stoma After an Ostomy
Some people with Crohn’s will get an ostomy. This is when your bowel is rerouted through a hole in your belly wall called a stoma, where waste leaves your body and is collected into an ostomy pouch.
Sometimes food or scar tissue can keep waste from moving properly through your intestines after an ostomy. If you have cramps or nausea, and no waste has left your stoma for several hours, you could have a blockage. Call your doctor right away if you think this might be the case. You should also call if your stoma sticks out farther than normal, called a prolapse, or if it retracts farther inside your body than normal.
Short Bowel Syndrome (SBS) After a Resection
Normally, your small intestine absorbs vitamins and nutrients from digested food as it makes its way out of your body. If too much of it is removed by surgery, you will start to have trouble getting enough nutrition. This is called short bowel syndrome. Call your doctor if you’re having symptoms of SBS, such as:
- Weight loss
- Belly pain
- Oily or foul-smelling bowel movements
- Weakness or fatigue
- Bacterial infections
- Food sensitivities
Changes in Bowel Function
Crohn’s surgery will probably change your bowels’ behavior. You may have to go more often, sometimes with little or no warning. You may feel bloated and pass wind more. It may take a little while, but you will adjust to your “new normal” in time. As a rule, stay hydrated, and you might want to avoid “gassy” foods like beans, broccoli, onions, cabbage, and cauliflower for a while.
Some surgeries carry higher risks of problems going to the bathroom. For example, up to half of patients who get anorectal surgery can have trouble controlling their bowel movements, depending on how complex the procedure is. Talk to your doctor about your risks of fecal incontinence.
Adjusting to Lifestyle Changes
If you have had an ostomy, your ostomy pouch can be hard to get used to at first, and it may make you feel self-conscious. But you will be able to return to your normal activities with time, and it is up to you how much you want to share about your surgery. Remember that your ostomy pouch is much more obvious to you than it is to others.
Changes in bowel behavior may also affect your confidence. To help with your symptoms, avoid fatty, greasy, or spicy foods, and talk to your doctor about how much fiber you should be getting. It will also help to steer clear of alcohol, and don’t smoke. Keep your body moving; frequent gentle exercise can help keep you regular and help you regain your confidence.
You might also wonder if Crohn’s surgery will affect your sex life in the long run. Many people find that things return to normal after several weeks of healing, but some changes can be permanent. It can help to be open with your partner about your feelings. You may also feel embarrassed to talk about sexual concerns with your doctor, but they are used to talking about these subjects. Try to use them as a resource for any questions you may have.
Sometimes after a resection, things like diarrhea and cramping may stick around even several months after your surgery, as your bowel adjusts to its smaller size. This depends on what part of your bowel was removed, and how long the removed section was. You may be able to manage this with diet and medicines, but lifestyle changes will also help you stay in control. Be prepared when you go out in case of an accident. This means you should know exactly where the bathrooms are, and take spare clothing, soothing skin care products, and plastic bags with you, just in case.
Crohn’s Recurrence after Surgery
Surgeries are not meant to cure Crohn’s. Instead, they are used to control symptoms and keep the disease in check. This means that many patients -- around half -- will see their Crohn’s come back in the years after their procedure. Around one-third will need more surgery sometime down the road. Talk openly with your doctor to learn as much as you can about your specific type of Crohn’s. Ask questions like:
- What are some possible complications from this surgery?
- What kind of lifestyle changes should I expect?
- How long will my recovery take?
- How will my surgery affect my diet and bowel movements?
- What supplies should I have at home?
- Will I need more surgery in the future?
This will help you stay prepared and know what you may need to manage in the years to come.