Summary: This article gives information about feeding tubes and when they become necessary in the lives of those with cancer or other illnesses that affect the body’s ability to maintain the nutrient level it requires for daily living and healing. The main types of feeding tubes are discussed along with tips and tricks on how to bring intimacy back in to your life after adjusting to your new tubes.
Malnutrition is a real side effect for many patients fighting for their lives against cancer and many other illnesses. Malnutrition happens as a result of the body’s inability to keep in or get enough caloric value to help keep the body healthy. There are many methods of treatment before a feeding tube is placed for nutrition and is often a last-ditch resort to give the body what it so desperately needs. Studies have shown that in forty to eighty percent of those with a cancer diagnosis are suffering from some level of malnutrition (IU Health).
In our country this year, over 300,000 Americans have some form or type of a permanent feeding tube installed within their bodies. One of the main reasons for this procedure in many is the inability to chew, swallow and eat food after oral and throat cancer. There are also many other medical illnesses that require temporary or permanent feeding tubes. Some are Gastroparesis, cystic fibrosis, multiple sclerosis, Lou Gehrig’s disease, Scleroderma, genetic disorders and many other motility related stomach conditions.
Those who have a feeding tube installed are often referred to as “tubies.” These ‘tubies’ have learned to live as normal of a life as possible by sporting their tubes, feeding bags and poles to ensure that they have the opportunity and chance to live their lives to the fullest. Without the option of tube feeding, many lives would be lost early in treatment and dealing with these illnesses because there is no better way to ensure that the body is getting the proper amounts of nutrition and caloric value each day.
Having a feeding tube means planning ahead, having plenty of supplies on hand, learning to travel out of the house with your feeds, and being intimate and living life as you normally would. These days they have special backpacks designed to carry liquid feeds, pumps and accessories, and can be worn while you travel the city or do your grocery shopping, if you’re up to it.
There always seems to be a transition time when adjusting to tube feedings and sometimes it can take a few weeks to months to get your drip rate and feed times correct with what your body needs. Many people will choose to begin their feeds running overnight so they can sleep and rest through the procedure, and fend off any nausea, vomiting or discomfort in the early hours of the morning. Tubes are usually hidden under clothing and can be attached to the skin or articles of clothing to ensure it is in place and secure. Many people have tubes without their friends or family knowing right away that this is their life.
One of a tubie’s biggest complaints is regaining the nerve and confidence to be intimate with their partners. It is often a large blow to the psyche to have a new and often protruding tube poking out from your abdomen. At first, embarrassment, dislike, body morphia and image issues, as well as mental walls that did not exist before could appear with your new tube. These feelings are all normal and should be dealt with as such. Being open, honest and communicating about your tube, how it makes you feel, and the things that make you feel fear from it are good conversation starters with your partner. Bringing intimacy to the forefront of your conversations and talking openly about your feeding tubes can make having them less intimidating to deal with. Informing your partner of how they work, their function, need and all of the details about it can help you to feel confident that your partner is on board with your intimacy needs, as well as the new need of being extra careful with your tubes and navigating around your new body. This begins by knowing the type of feeding tubes you have, and then knowing your own personal intimacy needs.
What type of feeding tube could I get?
There are many types of feeding tubes that could be placed for nutritional purposes, and the type of tube you end up with will best match your needs and condition. These are the more common types of tubes with information on each.
–Nasogastric or NG tubes are tubes that are fed in through the nose and nasal passage and in to the stomach. These are tubes used for short-term feedings, or those happening occasionally per month. This is often the first tube a person will receive before something more permanent is in place. These tubes are placed without any surgical involvement. Numbing spray is sprayed into the throat, and a numbing gel into the nostril being used. The tube is then fed through the nostril to the back of the throat, and then swallowed in to place gently. It can be uncomfortable but is not entirely painful. These tubes can be pulled out on their own, which makes long term tubing of this nature more difficult to keep in and are normally taped down to the side of the face or cheek.
–Nasoduodenal or ND tubes enter through the nose similarly to the NG tube but is extended in to the beginning of the small intestine, or duodenum. These tubes are great for those needing temporary nutrition but can not tolerate any food going directly to the stomach. These can be placed in the body without surgery but is usually done in a hospital setting as these feeding times run over eighteen to twenty-four hours on a slow feed schedule.
–Nasojejunal or NJ tubes are quite identical to the ND tubes, except this tube is fed further into the small intestine to the jejunum. These are also designed for children or adults who cannot tolerate any food within the stomach itself. With this style of tube, it can be secured to the face or cheek, and also runs very slow feeds just as the ND tubes do.
–Gastric or gastrostomy tubes are the most common type of feeding tubes. They are placed in the hospital via a surgical or endoscopy procedure directly through the skin and in to the stomach. People requiring more than three months of feedings are likely to get this type of G-tube. There are different types of G-tubes with different exterior parts and hookups. The PEG tube or skin-level button devices are the most commonly installed. Once the tube tract inside of the body has healed, most care can be done at home by the patient or in an outpatient setting.
–Gastrojejunal or transjejunal tubes are similar to G-tubes in that they entire into the abdomen directly through the skin using a stoma site just as G-tubes. Most of these tubes have two feeding ports: one that goes in to the stomach, and the other which extends into the small intestine. GJ-tubes are not usually installed as a “first” tube and are often used after a G-tube begins giving trouble, or the stomach fails to tolerate feeds directly. These feeding must be run slowly, over an eighteen to twenty-four-hour period, and any maintenance on these tubes is most often done in the hospital.
–Jejunal tubes or J-tubes are tubes that are directly placed into the small intestine. These tubes are not very common and require surgical installation and replacement.
What are some tips and tricks on how to regain control of my life and add some intimacy back in to our routine, and make sexual time fun and exciting again?
There are so many things, simple things, that you can do to get some intimacy back in to your life right this minute, if you’re willing. For the first six to eight weeks after having your tube installed, your body and incision sites will still be healing. After you have been cleared, consider trying some of these things:
-Cuddle on the couch with your partner simply holding hands and watching a television show or movie you both like. Idle chit chat and simple touching are two of the most basic forms of intimacy where you can truly show someone you care while reconnecting in a non-sexual way.
–Make a romantic evening with a nice drink list to discuss your tube, what it means to your body, and how it affects your daily life. In this conversation, also discuss the importance of intimacy and feeling close to yourself as well as your partner during this time of change and transition.
-Be open to new ways of doing things!
-Invest in an abdominal tube wrap. These are made to gently wrap around your entire abdomen to securely cover and protect your tube site during swimming, exercise, intimacy, sex and more. They are often in a variety of colors, patterns and materials. Not only does this provide an extra barrier during any intimate or sexual play, but also helps the person know and see that they are no different from anyone else by hiding the tube and area. This also ensure that the tubes do not get caught on anything or anyone during this close and special time.
-Try new positions for sexual play. If you have a tube, you will surely not want to be in any position requiring you to lay on your abdomen. Positions like “doggie style,” “side by side” or “tubie-on-top” positions are often best. Avoid straining your abdominal muscles too much or too soon after the tubes insertion.
-Do not count on sexual or intimate times happening while your feeds are running. This means planning ahead and figuring out when the best times to run your feeds might be. There are really no wrong ways or times to run your feeds but skipping them should not happen.
–If you are self-conscious about your tube and are having trouble being naked in front of your partner, consider keeping on your t-shirt or buying a special “sexy” shirt to wear during the act. This provides you discreet cover and mental ease knowing it is not sticking out for all to see.
If you have tried multiple methods and tips for adding intimacy back in to your life after having a feeding tube installed, be sure to check in with your doctor. Often times, hormones or other medically related issues can be another level of blocker added to your life and these can be adjusted and treated by your medical care team to ensure that you are getting all the nutrition and intimacy that you need in your life to feel like a whole human once again.