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Select a section for more information.

Section 3: Helpful Resources

Helpful Handouts

Gaining Independence as a Young Adult with Rare Disease: Created by Global Genes Children's Hospital of Montefiore. Your Friend Just Had an Intestinal Transplant: Created by Transplant Unwrapped a useful download for friends of teens who just underwent an intestinal transplant to better understand what your friend is going through. Navigating Emotions: Helpful tips on how to navigate your emotions as a teen with a rare disease. Created by Global Genes Children's Hospital of Montefiore.

Helpful Phone Apps for Teens

MyGI Symptom Tracker Learn about and track your gastrointestinal symptoms. Has helpful videos within the app. Transplant Hero Phone app that helps you track your immunosuppression medications. TransplantU Walks you through the transplant process. Although this may seem that it is geared toward a younger audience, it still may help just give you a general overview and help to lessen some anxiety about going to the hospital for your transplant.

Helpful Websites

Nemours for Teens Purpose: Educational content about health and wellness for teens. AboutKidsHealth for Teens Purpose: Basic health information for young adults. Adolescent Health Transition Project Purpose: Information on transitioning to adult care. Got Transition Purpose: Information on transitioning to adult care. Questions for Teens By Teens Purpose: Teen questions answered by teens. About bone marrow transplant, but can be generalized. Teen Written Health Articles Purpose: Sutter Health Teen. Patients write articles on specific health conditions. Teen Health Fx Purpose: Teens ask questions about a variety of health topics which are answered by a variety of healthcare professionals. Youth.Gov Purpose: Informative website on the types of accommodations you can receive in school. Girl's Health Purpose: A site dedicated to young women's health needs.

Section 1: Basics

Basic Overview of the Intestinal Transplant Process

What is intestinal failure? Intestinal or bowel failure means a person's intestine is no longer able to absorb enough nutrients from food. When this happens, a person requires to receive nutrition through his or her large veins, which is known as total parenteral nutrition or TPN. What causes intestinal failure? Intestinal failure is usually caused by short bowel syndrome, which can be a surgical/mechanical cause or a functional cause. In a surgical/mechanical cause, the individual simply does not have enough small bowel to allow for adequate absorptive capacity. The person may have had many surgeries that removed the bowel, or they may have just been born with a short bowel. For functional short bowel, the case is that the problems arise that prevent the bowel from properly digesting, absorbing, and moving the food through the digestive tract. In some cases, an individual may have a combination of the two types. Common Causes of Intestinal Failure Leading to Intestinal Transplant: Mucosal Disorders:

  • Microvillous Atrophy (MVA)
  • Secretory Diarrhea
  • Autoimmune enteritis
Motility Disorders:
  • Chronic Intestinal Pseudo Obstruction (CIPO)
  • Hirschsprung's disease (also known as aganglionosis)
Surgical or Anatomical Disease:
  • Volvulus (twisting of the bowel)
  • Gastroschisis
  • Necrotizing enterocolitis (one of the most common causes of short bowel in premature infants)
  • Crohn's disease
  • Ischemia (death to the bowel)
  • Intestinal Atresia
Gastrointestinal Neoplasm (Cancer):
  • Desmoid tumors (Gardner's syndrome)
Indications for Intestinal Transplant If all other treatment options have been exhausted and a patient is no longer tolerating PN, intestinal transplant may be considered. To qualify for an intestinal transplant, most transplant centers require a patient fall into one of the following categories of PN failure:
  • Parenteral Nutrition Associate Liver Disease (PNALD), also known as Intestinal Failure Associated Liver Disease (IFALD).
  • Central venous catheter thrombosis >2 time in more than 2 large veins.​​​​​​
  • Central venous catheter sepsis >2 times in a year or 1 instance of fungal infection of the blood.
Types of Intestinal Transplant: The type chosen will depend on the needs of each patient and how widespread the disease of the digestive system.
  • Isolated intestine
  • Intestine-Liver
  • Modified multivisceral (stomach, pancreas, duodenum, small intestine)
  • Multivisceral (stomach, pancreas, duodenum, small intestine, liver)
Transplant Evaluation: During evaluation the intestinal transplant team will assess the patient to see if he or she qualifies for an intestinal transplant based on the qualities of their gastrointestinal tract as well as their overall health. The evaluative process needs to make sure that the entire body will be strong enough to undergo such a large operation and recovery. During the evaluation you will be seen by a variety of doctors and will have numerous tests and procedures. Selection and Waitlist: After evaluation, the transplant team and other members of the hospital’s committee will review the case and decide the best course of treatment. If transplant is the selected option, then the patient will be placed on the national waiting list. No one can determine how long someone will wait for transplant, as times vary greatly. The Surgery: Intestinal and multivisceral transplant is a very difficult surgery and is associated with many possible risks and complications, but the transplant team will be there to support you and help you recover. Possible Complications: Infections
  • Since another person’s organ is being put into an individual’s body, high amounts of medications called immunosuppressants or anti-rejection medications must be used to make sure that the body does not attack the new organ.
  • While these medications work well to protect the new organ, they also make the immune system very weak and make the individual susceptible to infections.
  • It is very common in the post-operative period of intestinal transplant patients to get infections due to their weak immune systems.
  • This is your body’s natural immune response to try and get rid of the new organ.
  • This is very common after an intestinal transplant since the intestine contains a high percentage of the body’s immune tissue.
  • Rejection can be treated, especially if caught early, so maintenance biopsies are performed regularly in the early post-transplant period.
  • Bleeding.
  • Kidney disease is common, especially as a long-term complication of immunosuppression medications.
  • Long term: You more susceptible to cancers, such as squamous cell and basal cell carcinoma of the skin.
All of these factors need to be taken into account when deciding on whether to move forward with an intestinal transplant. Life After Transplant
  • After a transplant you will still have many follow-up appointments, frequent bloodwork, routine biopsies to check for rejection, and numerous medications.
  • Since you are immunosuppressed, you are at a much higher risk of infection and must follow many infection prevention strategies to stay healthy.
  • Many patients are able to wean off of TPN and eat by mouth, however, some may still require hydration or nutritional supplements.
  • Intestinal transplant is a possible treatment option for patients with short bowel syndrome who have exhausted all other treatment options and do not have the ability to wean from PN without transplant.
If you would like further information, you can visit our patient and caregiver section here. If you prefer a kid-friendly version, visit our kids korner to download our Kids Guide to Intestinal Transplant here.

Basic Overview of the Digestive System

Section 2: Coping


Having a chronic illness or undergoing a big operation like an intestinal transplant as a young adult can be very difficult on multiple levels. Not only is the operation difficult to deal with, you also are trying to navigate school, social circles, relationships, body image, peer pressure, and finding your own independence. You may often find yourself asking the question "How do I deal with people who just don't get it?" These are all valid frustrations and concerns. Below you will find information on some common topics that you may find helpful when trying to navigate these rough waters.

Dealing with Parents

When you undergo an intestinal transplant, your primary caregiver is most likely your parent. In order to qualify for intestinal transplant, you must have an individual that agrees to be your 24/7 caregiver, making sure you attend all appointments, follow all medication regimens, and doctor’s orders. Because this becomes the job of your parent, it often can make the day-to-day relationship between parent and young adult very difficult.

As a young adult, you probably want your own independence and to have the ability to live your own life without your parents breathing down your neck; however, your parents feel as though they have to ‘be on your case’ all of the time because they have accepted that role as the primary caregiver of a transplant patient.

How do I tell my parent (s) what I want?

As you get older, it is natural to want to be independent and have more control of your health and healthcare decisions. Just because you would like more control, does not mean that you do not need some support from your family, but there can be a balance. You have to remember that parents aren’t mind readers and they are trying to do the right thing, even if it comes off the wrong way. Communicate with them. Don’t’ be scared to talk about it. Because your parents care, they want to know how you feel.

Sometimes young adults are afraid to tell their parents how they are feeling because they don’t want to upset them, but you are still their child, and it is not your job to make sure they are happy. Your parents love you and would much rather know how you feel rather than you bottle up your feelings inside.

If you have a difficult time talking to your parents about challenging issues, try talking to them during an activity, such as while riding in the car to an appointment or when painting your nails. Sometimes it is easier to do when all the attention is not directly focused on you.

How can you convince your parents to let go and give you some independence?

1. Manage your illness. This means get to know your medication regimen, appointment schedule, your medical history, information about your diagnosis, and information about intestinal transplant. Adhere to your treatment regimens. If you show your parents that you are responsible and can take care of your own health, they will feel more comfortable loosening their tight grip and giving you some independence.

2. Peer pressure. As a young adult you will have situations in which you may be offered to participate in risky behaviors such as drinking or using drugs. In these situations, if you make the decision to not participate and remove yourself from the situation, it will show your parents your level of maturity and make them more comfortable in giving you independence. If you find friends that align with your values, this will also show your parents you are mature and thinking about your situation.

3. Stay honest. Lying may work the first few times, but eventually your parents will find out. If you remain honest, your parents will feel more comfortable letting go.

4. Respect. Remember that your parents have done everything in their power to help you through your illness and transplant. Yelling at them or name-calling is not going to get you anywhere and does not support your claim that you are growing-up and deserve independence. If you disagree with your parent, calmly have a productive discussion.

Dealing with Siblings

It can sometimes be difficult with brothers and sisters who sometimes can be jealous of you getting all of the attention from your transplant. They may be upset if you have special privileges like special things to eat, or not going to school.

The best thing you can do is talk to your siblings in a calm discussion and listen to what they have to say.

Show them you appreciate them with smiles, hugs, and kind words.

Suggest playing a game with them or help them with their schoolwork.

Acknowledging your siblings and talking to them will go a long way.

Dealing with Peer Pressure

Having to undergo an intestinal transplant and being a young adult is an extremely difficult combination, especially in the social scene. In high school, all you want is to fit in, yet, your transplant places many limitations on your ability to meet these social norms. At this age, your peers may try to pressure you into drinking or drugs, both which can be dangerous with your anti-rejection medications.

Dating and sexual relationships can be tricky due to your physical health and items like your ileostomy. Because you are different from the rest of the group, you may be bullied, which can lead to depression and anxiety.

So how can you deal with peer pressure?

1. Educate your friends. If you educate the people your friends about your transplant so they understand your limitations (such as you cannot consume alcohol), then, they should not pressure you into situations that you cannot participate in because of your transplant. If you have educated a friend ,and they still try to pressure you, then that is not a true friend. You should just walk away.

2. Plan for possible pressure situations. If you are going to an event or party in which you know there will be people there that do not know your situation, be prepared for the possibility that someone may try to pressure you into a risky behavior. Prepare by getting comfortable saying ‘no.’ For example, “No thanks, I just had a big operation and I am still recovering.”

If that doesn’t work and you still feel uncomfortable, call your parents and have a prepared phrase to say so that they know it is time for them to come and pick you up, such as “Can you come and get me? My headache is back.”

3. Another option if you find yourself in a sticky situation is to blame your parents: "Are you kidding? If my mom found out, she'd kill me, and her spies are everywhere."

Coping Methods for a Young Adult

An intestinal transplant brings a rollercoaster of emotions. As a young adult you may feel lost amidst highs and lows of the journey. Here are some tips on how you can cope with emotional aspects of intestinal transplant.

1. Identify one or two adults and one or two close friends to act as your support system that you can talk to on a regular basis and share your innermost thoughts. Keeping your feelings bottled up is unhealthy and only leads to more emotional disturbance.

2. See a counselor. On top of those designated people in your life, you should also see an objective, outside counselor that can help you through the journey. It is always helpful to have someone from the outside looking into the situation and is not emotionally involved.

3. Join a support group for young adults with a similar condition or transplant- this includes in person meetings or online support groups. Just be careful with online support groups that not everything on the internet is valid or true. Try joining Transplant Unwrapped’s forum if you are looking for an online support community for intestinal transplant.

4. Journaling. Keeping a journal of your intestinal transplant and daily life experiences and feelings is a great way to share your emotions while maintaining your privacy. This can be very therapeutic for young adults.

5. Meditation. Give yourself 5-10 minutes a day to reflect, sit calmly, breathe deeply, and relax. Removing yourself from a high stress, emotional state will help to lower overall stress and anxiety.

6. Exercise. Get up and moving to the best of your ability. Sitting around all day and moping about your transplant and illness is not going to make you better or recover faster. When you exercise you release certain chemical in your body which can help put you into a better emotional state and feel better overall.

7. Self-Advocacy. Learn about intestinal transplant and share this knowledge with those around you. Start taking control of your own medical regimen and medications. Show your parents you have maturity and independence.

8. Find a passion. Try to take your focus away from the transplant and focus on something you love, such as knitting or painting. If you can put your energy into something positive, it will improve your overall attitude.

9. Practice Yoga or Tai Chi. This is low-im­pact and slow-moving exercise designed to promote relaxation, balance, and health.

Dealing with Medication Side Effects

After an intestinal transplant you will have numerous scars and you will be on medications that can cause body distorting side effects.

Most notably, steroids, can cause a “moon face” or rounded facial appearance. This medication can also cause weight gain. This can be very difficult as a young adult when body image and appearance is of utmost importance. The effects of steroids will be the greatest right after transplant when you are on the highest doses of steroids and will slowly diminish as you are able to wean down from the steroids post-transplant.

For most patients, you will never be able to completely go off steroids, so you may always have some sort of ‘moon face’ or fat pads in other areas of your body. The best thing you can do is explain these medication side effects to friends and family, so they understand why you look that way. It may give you comfort to show them a ‘before transplant’ picture of yourself so they know what you looked like before you began taking the steroids.

Real Example: “I know for me this always was, and still is, a big shock. My body is really sensitive to the steroids on multiple levels of side effects, especially moon face and fat pads. Even after lowering my steroid dose to the lowest possible amount, I still have a significant moon face. I still picture myself as a thinner face and I am always surprised when I look in the mirror or see a picture and see something different. Of course, I would rather not have the moon face, however, I also know that the steroids are essential medications for me to take to keep my graft healthy, so I strictly adhere to my medication regimen.” ~Kayla~

Other possible medication side effects can be hair thinning or hair loss and acne.

If you are experiencing these side effects and they are affecting your body image and self-esteem, the first thing you should do is talk to your transplant team and parents or primary caregiver. They may be able to make changes to medications that could help to diminish some of the side effects. You should not make any of these changes yourself nor should you decide to stop taking the medications.

If medication changes cannot be made, then education of those around you and highlighting your features you do like, can help you move forward. It never will be an option to stop taking your prescribed medications since that will cause you to lose your graft. Try to be open and honest. Give people a chance to remind you that your appearance can’t change your personality – which is what makes a lasting impact on the people around you.

Don’t body shame yourself, rather, focus on the qualities you like, such as your legs or hands, and accept those things. Focus on the things your body can do and look past its looks, such as reading, riding a bike, or the ability to knit a scarf.

Take care of your body by continuing to stick to your medication schedule, go to all doctor appointments, eat a healthy diet, and remain active. Be the best you, you can be. This will show through and overcome any negative body image feelings you may have.

If you still are experiencing strong emotions, left them out through writing, blogging, playing music, drawing, painting, or another way that you like to express yourself. You can also talk to a counselor or psychologist.

Returning to School

Going back to school after an intestinal transplant can be a scary venture. Before returning to school, you should make sure your transplant team has cleared you and deemed it safe for your return. If it is safe, you should communicate with your school about your situation and possible accommodations you may need.

Most likely, you will need to form a 504 plan, if you do not have one already. The 504 plan lists the accommodations, special services, and adjustments that may be required for your successful return to school.

Possible accommodations you may consider, include, but are not limited to:

  • The ability to go to the bathroom whenever you need.
  • Permission to use a private bathroom, such as in the nurses’ office.
  • A place to put emergency supplies, such as a stoma kit and/or a change of clothes.
  • Permission to eat snacks and drink fluids throughout the day.
  • Have extended deadlines or time to complete assignments.
  • Take tests or assessments in a room alone.
  • Excused absences due to illness, treatments, or medical appointments.
  • Home tutoring services if long-term absence is required.
  • Use of the elevator if stairs are not an option.
  • Increased test taking time.

When you make the transition to college, you will no longer have a 504 plan, however, you can still request reasonable accommodations under the American with Disabilities Act (ADA) and the college’s special student services office.

In order to receive accommodations, you must request these accommodations, submit ac­ceptable proof of having a disability, and meet with the proper people to determine which accommodations will apply to you. The accommodations can apply to the classroom as well as the dorm.

For instance, an accommodation could be that you require a private dorm room or bathroom. Classroom accommodations may be in the form of testing adjustments, seating, or absence policies.

Transitioning to Adult Care

As you get older, you need to start taking more control of your care and managing your treatment so you can be prepared to take over full control when you become an adult. This is also a way to show your parents you have matured, and they should give you more independence.

Some questions you should be able to answer about your care include:

  • Are you able to identify the members of your transplant team?
  • Can you describe the type of intestinal transplant you received?
  • Can you describe the reason why you received the intestinal transplant?
  • Can you explain how the intestinal transplant affects your daily life at home and your life at school?
  • Can you name your medications?
  • Can you describe what will happen if you don’t follow your treatment plan, including taking medication?
  • Do you know how to make appointments with your transplant team?
  • Do you know the signs and symptoms of acute rejection?
  • Do you know the basics of infection prevention and why this is important for a transplant patient?
  • Do you know what health insurance provider you have? Do you carry your insurance card with you at all times?
  • Do you understand the interactions of alcohol and drugs on your medications?

There are many websites and informational packets available on this topic. Please see the helpful resources section for a list of resources on this topic.

References found here.