Ostomies

The Day I Chose to Fight: Surgery, Strength, and the Power of the Mind

by Beamlak Alebel (Addis Ababa, Ethiopia)

An image of a person standing on rocks, balancing an extremely large boulder. It looks like they are trying to push the boulder up the incline. In the background is a wide open desert landscape.

There are days that change us forever — not because we are not ready, but because life gives us no choice. For me, it was the day I faced surgery.

That moment came with fear, complications, and a sense of losing control over my body and even my appearance. I wasn’t prepared — not mentally, not emotionally. Yet I had to choose: risk everything or let everything fall apart.

Before that day, I never imagined hearing the words: “You may be moved to the ICU.” No one is ready for those words. Your heart races, your mind fills with unfinished dreams, and suddenly life and death sit together in the same breath.

But when that moment came, I made my choice. I chose life. Even with all the unknowns. Even with the pain. Because sometimes the bravest step you’ll ever take is the most uncertain one.

Over time, I learned that strength isn’t about muscles or energy — it’s about mindset. When your body feels defeated,your mind becomes your strongest weapon. Deep inside me, beneath all the fear, I found a hidden strength I never knew I had.

Yes, I cried. Yes, I doubted. But I rose.

Living with IBD has stolen parts of my childhood, but it has also taught me to fight. My strength didn’t appear overnight — it grew through countless painful moments that shaped me into the woman I am today.

And here’s the truth I want others to know: we don’t need approval from anyone to define us. We know our own limits, and we know our own strength. Scars don’t make us less — they prove we survived.

If you’re standing at the edge of fear right now, please remember: you are not alone. The fear is real, but so is your courage. Even when your body is tired, even when others don’t understand — your mind can carry you further than you think.

We are not broken.

We are not our scars.

Photo from @vicky49 on Unsplash.

A Dozen Extra Organs: 12 Organs You Could Survive Without

By Zahraa Chorghay, Toronto, Canada

“I don’t have guts.”

“Hahaha.”

“No really, I don’t have guts. I’m literally missing my large intestine.”

“Wait, are you serious?”

“Yes, why would I joke about that? Plus, I’m one of those people who like to use the word literally for literally, unlike some people who mean figuratively when they say literally.”

“But… how is it possible to not have a large intestine?” [and still be alive?]


That last part no one says out loud, but I can fill in the blanks. After all, this is a fairly representative template of how these conversations tend to go. Somewhere between awkwardness, disbelief, and my personal favourite, curiosity, lives disclosure – a process that is central to forming and maintaining relationships (Willems et al., 2020). 

So if you want to progress from stranger to friend, or just have more honest conversations with your friends, lover(s), or family, preferably with a [wry] sense of humour about missing organs, here is a list I created. It’s a list of organs, not including limbs and sensory organs, that can be removed from the human body that would still allow someone to survive with a fairly decent quality of life. 

“Decent” quality of life is, of course, a subjective statement. For our present purposes, let’s define it to be that most people who have had this organ removed and fully recovered from the surgery are able to have a fairly independent life, including performing essential daily personal and professional tasks and maintaining social relationships. 

It’s a fairly morbid list. Most of the information comes from my own knowledge on the subject gathered through readings and discussions, though I fact-checked details on the Mayo Clinic website

Without further ado, here’s the list of 12 organs that you could probably survive without: 

#1 Appendix.

If you have appendicitis, in which your appendix becomes inflamed, enlarges, and can even burst, then your appendix may be removed by performing an appendectomy. Since the removal of the appendix did not seem to lead to noticeable adverse effects for most people, it has been traditionally thought of as a vestigial organ, although increasing research suggests that the appendix plays an immunoprotective role.  

#2 Tonsils, including adenoid tonsils.

If you have tonsillitis, in which the tonsils become infected and swollen, your tonsils can be removed during a tonsillectomy. This used to be a common childhood procedure, but given the role of tonsils in preventing pathogens from entering the body and other medical considerations, non-surgical interventions for tonsillitis are increasingly preferred.

#3 Thyroid.

If you have the unfortunate diagnosis of thyroid cancer or dysfunction, such as goiters or hyperthyroidism, a thyroidectomy may be performed. If partially removed, your thyroid may still function normally. However, following a total thyroidectomy, you would require daily hormonal replacement therapy, given the crucial role of the thyroid gland in producing hormones essential for metabolism, growth, and development. 

Digestive Organs

#4 Colon / Large intestine.

Your colon may develop cancerous polyps or inflammation due to diseases such as Crohn’s or ulcerative colitis. During a colectomy surgery, to get rid of this cancerous or highly inflamed bowel tissue, your large intestine may be partially or totally removed.

The remaining colon or small intestine may be diverted towards the abdominal wall to allow faecal matter to safely and easily leave the body through an opening on the belly called a stoma. This is an ileostomy, and people with stomas often refer to themselves as “ostomates.” The ostomy bag must be emptied every few hours and changed every few days for the individual to live comfortably.

Alternatively, the remaining intestinal tissue can be restructured to form an internal J-pouch where faecal matter is collected and then passed through the rectum. Unlike an ileostomy, in this case, no medical aids like the ostomy pouch are required.

#5 Rectum.

Depending on the presence of diseased tissue due to rectal cancer or if intestinal inflammation spreads into the rectum, a proctectomy can be performed to remove all or part of your rectum. People with total proctectomies may refer to themselves as “having a barbie butt,” hinting at the lack of an anal opening just like a doll. In this case, they would also rely on an ostomy bag for daily functioning.

#6 Gallbladder.

A cholecystectomy can be performed to remove your gallbladder if complications or cancer resulting from the presence of gallstones, polyps, or inflammation is detected. Most people recover from cholecystectomies with little or no digestion issues. Since the gallbladder is responsible for storing bile, a fluid that helps your digestive system break down food, in the case of digestive issues, this can be managed through dietary and lifestyle choices or medication.

#7 Spleen.

Following trauma, infection, cancer, or blood disorders, your spleen can become inflamed, enlarge, or rupture. In this case, a splenectomy is performed to remove this organ. Since the spleen plays immune functions like red blood cell filtration, following surgery, some individuals may be more prone to infections and would require specific vaccinations or medications.

#8 Stomach.

There are many types of bariatric surgery that you can undergo. Some surgeries address trauma to the stomach or cancer. Other surgeries are for weight-related health issues where non-surgical interventions have not been sufficiently effective, and the issues are life-threatening (e.g. can lead to cardiac arrest). The stomach can be partially or fully removed, and the stomach can be partially or fully bypassed when connecting the oesophagus (food pipe) to the small intestine. Following surgical recovery, your quality of life can be managed through dietary and lifestyle choices.

Urinary Organs

#9 Kidneys.

A nephrectomy can be performed to remove you kidney, typically for organ donation, in which the recipient has failed kidneys and may even rely on dialysis for kidney function. While you can technically survive without both kidneys, because the kidneys provide an essential function of blood filtration (resulting in urine production), you would need ongoing dialysis, which is an intensive procedure that can highly compromise quality of life. 

#10 Bladder.

In the presence of cancer, or of development or neurological or inflammatory disorders of the urinary system, a cystectomy can be performed to remove your bladder. The details of the cystectomy vary depending on the spread of disease; for example, reproductive organs may also be removed. In the absence of the bladder, a urinary diversion is created so that urine can safely and easily leave the body through an opening on the belly, called a stoma. This is a urostomy, and people with stomas often refer to themselves as “ostomates.” The urostomy bag must be emptied every few hours and changed every few days for the individual to live comfortably.

Reproductive Organs

#11 Testicles / Testes.

In the event of testicular cancer or trauma, an orchiectomy may be performed to remove your testicles. While most people can return to a good quality of life following full surgical recovery, the individual would be unable to conceive and may also experience sexual dysfunction. Given the role of the testicles in producing testosterone, hormonal replacement therapy following surgical recovery is increasingly recommended to prevent long term adverse outcomes.

#12 Ovaries and Uterus.

Following cancer, trauma, conditions such as endometriosis, or for reproductive control (particularly in areas of the world where menstrual care and contraceptive options are limited), an oophorectomy to remove one or both of your ovaries and/or a hysterectomy to remove your uterus may be performed. Following surgical recovery, the individual would be unable to conceive. While most people can return to a good quality of life following surgical recovery, given the role of the female reproductive organs in producing oestrogen and progesterone, hormonal replacement therapy is increasingly recommended to prevent long term adverse outcomes.

Featured photo by Karolina Grabowska from Pexels.

What I Wish I Knew Before Having an Ileostomy

By Carina Diaz (Texas, USA)

It’s been a year and four months since my ileostomy surgery, and I’ve been in a reflective mood about it. This was my first and so far only surgery I’ve had for my Crohn’s Disease. I had first learned about ileostomies and ostomy bags on Instagram and then later on YouTube when Hannah Witton shared videos about her surgery. To be honest, it sounded like the worst case scenario. Little did I know that years later, it was a decision I would have to make.

There was so much I didn’t know about this surgery and what living with an ostomy is really like. I didn’t know that it was reversible (in some cases) and that it’s not considered an invasive surgery. While in the hospital, I accepted a job and ended up moving to a new city a month later The first month post surgery was very hard, and I had not been well prepared by the hospital staff before being discharged. Here is what I learned post-surgery and advice I wish someone had told me:

  • Get the name and number of an ostomy nurse before you leave the hospital. This is so so important. I did have a home nurse come for a few days to help me get familiar with changing my bag, but after that I was basically on my own. I ended up having a lot of blow outs and skin issues and didn’t know of anyone to contact. Make sure to ask your hospital nurse or health insurance for a recommendation.

  • You don’t get to choose how long you can wear a bag for, your body does. One of the hospital nurses told me that some of her patients could change their bags up to once a week and I thought to myself, “That’s perfect, I don’t need to change it too often.” But this wasn’t the case for me. I have eczema, and the skin where the bag goes was not happy about it. It took me almost a full year to nail down a changing routine that worked for me and it ended up being every other day. Everyone is different and there are so many factors when it comes to how long to keep your bag on for. The only way to know is through trial and error. 

  • There are different kinds of ostomy bags for different types of stomas. The bags that hospitals supply you with are the cheapest of the cheap. Mine were clear and seeing not only my output but also my intestine was disturbing. Thankfully there are more options out there than just cheap ones with no air filter to let out the gas that can cause a stoma bag to balloon. There are also all kinds of products to help your skin and keep the bag in place. 

  • Your weight could fluctuate…a lot. I was underweight before my surgery and had been for several years. Post surgery, I got back to my normal weight and then some. This has been one of the hardest things about an ileostomy for me. I was finally absorbing what I was eating instead of it immediately going through me. Body image is something that I’ve really struggled with since being diagnosed with Crohn’s, and gaining more weight than I’m used to honestly hasn’t helped that. 

Something that I keep reminding myself of when I got through hard things is that what I need is time. Eventually I will get through it and another difficult time will come, but by then I will be better able to handle it. Living with IBD is hard, and it’s best to be kind to yourself through it. 

How I Prepared for My Surgery

By Maalvika Bhuvansundar

Hearing the word surgery is enough to give a lot of us nightmares. During my early stages of diagnosis, I was told of a future where surgery might be required, but I never thought such a day would come. Well, looking back at it now, I realize how wrong I was for assuming this. For a lot of us with IBD, surgery might be inevitable. However, there are also a lot of individuals with IBD who might not require surgery and could reach remission with medication and lifestyle changes. It wasn’t the case for me though. After six painful years of being sick, surgery seemed like the most probable solution. Got numerous tests done once again for the 100th time and realized that my intestines were narrowed. The good news was that Remicade was working well for me, and the narrowing was getting better but at a very slow pace! I was given two options, either I could get hemicolectomy surgery done or could rely solely on Remicade which might take longer to ease my symptoms. The following steps helped me make a clear decision:

Make a pros and cons list - having things written out helps make a more objective and rational decision.

  • Get all the required tests done and always ASK for a copy of your reports.

  • Always get a second opinion! It’s our body and we have every right to get as many second opinions as we’d like. Don’t let anyone tell you otherwise.

  • Make a pros and cons list - having things written out helps make a more objective and rational decision.

  • Ask your doctor every doubt you have regarding the surgery even if it may seem repetitive or irrelevant. It is better to make a decision with all your doubts and concerns answered.

Luckily for me, my aunt and uncle are both doctors, and they assured me that getting this surgery would be the best decision I took, and they were spot on! There are a few things to keep in mind for post-surgery:

Ensure they have given you the medications required to take at home.

  • Always write down the instructions given for home care.

  • Ensure they have given you the medications required to take at home.

  • Do not leave without the discharge summary!

  • There are chances of having constipation post-surgery; it is a pretty common side effect. Ask the doctors what to do if this situation pertains to avoid anxiety and stress regarding this once you are back at home.

  • Do not miss your follow-up appointments!

Thanks to this life-changing surgery, for the first time in six years, I am symptom-free, and though I will always have the scar to remind me of the pain, it also reminds me of the decision that helped me lead a better life. This experience showed me that life could take a different turn unexpectedly. However, the scary choices may sometimes be the best ones we’ve ever taken!

Traveling With an Ostomy Bag

By Carina Diaz (Texas, U.S.A.)

As the world is opening up a little bit more, I was able to travel a couple times in 2021. Having an ostomy made it an entirely different experience. If you also have an ostomy and haven’t traveled with it yet, here is my experience and some tips. 

Almost every time I’ve been through TSA since my ileostomy surgery, I’ve had to be patted down by someone. I asked an agent if there was some kind of medical pass or something so that I wouldn’t have to keep going through this, and she told me my only option was to get TSA pre-check. Getting patted down doesn’t take too much time, but it’s definitely something to keep in mind while traveling as it can add time at the airport. I wish there was a more accessible option since TSA pre-check costs money. 

Hiking El Yunque rainforest in Puerto Rico and a mirror selfie after emptying my bag at a restaurant.

As a kid, I was definitely a window seat type of person, but now as an adult with a medical condition, I much prefer the aisle. This way I don’t have to ask anyone to get up if I have to go to the bathroom during a flight, and it eases my anxiety. If I bring a carry-on suitcase, I can also easily access it in the overhead bin if I need anything. 

I change my ostomy bag every two to three days, so I make sure to pack my supplies accordingly. I also bring at least two extra ostomy bags in case of leaks or if I accidentally cut a hole through my bag. You can get travel size products from whichever company you order your ostomy supplies through. Adhesive remover spray and lubricating deodorant are two of my essentials. The adhesive spray helps to take off the bag easily and gently from the skin. The lubricating deodorant is a liquid you put in your bag so that output doesn’t cause a blockage or pancake at the top. 

Traveling with friends to NYC for a concert.

I usually always bring a small bag or backpack with me on the plane. This is where I’ll keep a small pouch of my ostomy supplies to use in case I have a leak while traveling. So far, it has only happened a couple times, but I was very glad to be prepared.

The supplies I bring are:

  • Scissors to cut the hole for my bag

  • My Hollister two piece bag system

  • A trash bag to put the old bag in

  • Adhesive remover spray

  • Skin prep

  • Cream for my eczema that I have on the skin near the bag

  • Stoma powder

  • Barrier strips

  • Tape

  • A small mirror. If I can’t access a family bathroom, the mirror comes in handy when changing in a bathroom stall. 

Besides keeping a pouch with supplies with you on hand, you can also talk to a flight attendant about having an ostomy and feeling anxious about flying with one. I have anxiety and letting someone know how I’m feeling helps me to calm down. This way if I end up needing help, they’ll know of my situation. I usually have snacks with me as well, but I also ask for an extra bag of pretzels since that can help output come out more formed and less liquidy. 

Being prepared is something that really eases my mind. After traveling the first time with an ostomy, you’ll have a better idea of what to expect. I hope that reading about my experience and how I prepare can bring peace of mind to anyone out there who is feeling unsure about traveling with an ostomy. 

My Ileostomy Story

By Carina Diaz (Texas, U.S.A.)

In May of 2021, I went to the ER for what felt like the millionth time. I had been struggling with cysts and abscesses forming in my vagina for the past three years and this time was no different. Or so I thought.

I had already been to the ER earlier that week and was seen by a male doctor who, in hindsight, wanted to quickly drain the cyst and get it over with to move on to the next patient. I told him that I wanted a CT scan, but he said it wasn’t necessary. For my second ER trip of the week, I was seen by a female doctor. I made a comment about this being my eighteenth time having to do this in the last three years and with a look of concern on her face, she said, “That’s not normal. Let’s do a CT scan.” To which I said, “Brilliant idea.”

The part that I hate most about going to the emergency room is having to wait. And wait. A nurse takes your vitals. Then you have to wait. Someone comes to get your insurance information. More waiting. You tell the doctor what’s wrong. Even more waiting. The doctor comes back with a nurse. They do what they need to do. And you wait some more for either discharge paper work or to be admitted. 

After getting a scan, it was decided that I would need incision and drainage surgery. But guess what? My gynecologist only does surgery at one hospital and it wasn’t the one I was currently at. So I had the joy of, you guessed it, waiting for an ambulance to come to transport me to another location. Watching the night sky through the back windows wouldn’t have been so bad if I wasn’t strapped to an uncomfortable bed made of plastic.  

This was the second time I’ve had to get incision and drainage surgery, so it wasn’t a new experience to me. What was new was being presented the choice of potentially having to get ileostomy surgery. It would give my colon a break and let the fistula heal (a surprise that was discovered during the surgery). 

To be honest, getting an ostomy bag was the worst-case scenario in my head as someone with Crohn’s Disease. It sounded scary and uncomfortable. What clothes could I wear? Would people see it? Would I smell? Am I going to wake up in pain after the surgery? When the hell will I be allowed to eat?! I don’t want a poop bag strapped to me. All of these thoughts were floating in my head while three doctors stood in front of me explaining the process. The good thing was that it would be temporary. 

I let a doctor use a robot to cut me open and pull a bit of my intestine out. I didn’t wake up in pain, but I was scared to look at my body. The rest of the week was a blur of learning how to empty it, clean it, and how to live with this new change.

At the time of writing this, I’ve had an ostomy bag for ten months. While it has greatly improved my quality of life and lowered the severity of my symptoms, it has definitely been challenging. I have three different skin conditions, so my torso really hates having something taped to it. I have yet to find a bag that doesn’t irritate my skin. During my second month after surgery, I kept getting blowouts at night and barely got any sleep. It was painful and itchy. My ostomy nurse likes to describe me as “a real head scratcher.” 

Having IBD makes me think a lot about the duality of life. I’m grateful that this surgery was an option for me because it has helped in many ways, but I still have to make sacrifices. I still have to deal with discomfort, and I’ve had to relearn my body yet again. That cycle will continue when I eventually (hopefully) get reversal surgery at some point.

Some people have positive experiences with ostomies and say that it has given them their life back. If that’s not the case for you and you’re also struggling with having an ostomy, try to remind yourself that you’re doing your best. Take it one day at a time and cry when you feel the tears forming. I recommend watching your favorite show if you’ve had a hard time changing your bag. Those stomas can be so unpredictable.  

Tips to Improve Your Quality of Life with a Stoma

This article is by Saravanan Nagappan from Malaysia.

Photo by George Becker from Pexels


Many of my ostomy friends confided that their life has changed since they became an ostomate. They feel their quality of life has deteriorated after having a stoma. They are unable to enjoy their life as before they became an ostomate. They mention changes to their diet, workout, and their social activities not remaining the same as before. Yes, I have to agree with them, because what they say is a common fact for an ostomate to experience and I personally faced the same issue as well even a decade being an ostomate, still my life is not the same as before. I’m going to share with you a few tips on how I have managed to reduce the impact a stoma has on quality of life based on my experiences.

Accepting your new life as an ostomate

The first tip is acceptance. We need to accept that we are ostomates and prepare for it both mentally and physically. At the end of 2011, my surgeon approached me and suggested that I have to go for Ostomy surgery as it was the best way to heal my fistula. My surgeon informed me regarding the complications I would be facing. At that time, I was confused and worried. I took a few days to decide whether I want to do it or not. The decisions involved many considerations, especially the changes in my life that come from being an ostomate and living my entire life as one afterward. After a long discussion with my family, I finally agreed to go for the surgery. I psyched myself up mentally by listing the benefits of this surgery and the changes it would bring to my life especially the physical ones. Since I accepted my situation and geared up for it, post-surgery changes were not monumental. My goal at that point in my life was to heal my fistula and get my Crohn’s under control. It was more than enough for me.

Adapting to new norms

The next piece of advice is adapting to new norms. This is important for an ostomate because a new ostomate is like a newborn. We are reborn into a new physical self and the changes it brings to our routine are something we have to relearn all over again. Without a choice, we have to adjust to new norms. Common new norms are our diet, daily routine, and social activities. It’s impossible to change everything overnight, but focus on small changes in our daily life and we will be able to see the impact in the long term. Once we learn how to slowly accept and adapt to our new norms, we will find it easier to live our life as an ostomate. The problem occurs when we refuse to accept new changes or routines. Inability to accept the changes can lead to deterioration of life quality.

Pre-planning your days

The following tip is to pre-plan. Pre-planning everything you want to do is one of the ways to improve an ostomate’s quality of life. Pre-planning a daily routine or outing is common in anyone’s life. However, it could be an essential habit for an ostomate. For example, assume that you need to attend an event in a few days’ time. In order to attend this event, you need to pre-plan your diet so you can avoid any food that can cause gases. By doing this you may avoid visiting the washroom all the time in front of others and enjoy the event more. Not only diet, but you can also pre-plan for other matters such as your physical and emotional wellbeing as well. Remember pre-planning can help to prevent any last-minute mishaps or emergency withdrawal from a situation.

Physical exercise for a better quality of life

As a final tip, I personally suggest that ostomates perform some physical exercises. After my surgery, I thought that my workout routine had come to an end. However, my thoughts had changed after I met a few senior ostomates. They advised me to not abandon my workout and they guided and motivated me on how ostomates should do their workouts. I started again with basic workout routines and challenged myself to go for the harder level. So how do workouts improve our quality of life? Doing physical exercises help to build our body muscles, reduce unwanted fats, keep our body fit and flexible and also improve our blood circulation and digestive systems. Moreover, workouts help to remove toxins from our bodies. which will keep our bodies healthier. Exercises also help to keep our minds active and create more positive energy within us. All these could tremendously improve ostomates’ quality of life.

In a nutshell, ostomy surgery is a life-saving procedure for many patients. Therefore, it should not be treated as a burden. Rather, we must take our own individualized care and explore new choices to improve the quality of life after ostomy surgery. I hope these tips can help you in your ostomy journey.

Let’s control our quality of life, it is in our hands!

Ostomates and Intimate Relationships

Imagine you are in a relationship with a person and you want to take that relationship to the next  level by taking the step towards being physically intimate. You take off your shirt and you hear a  gasp. “What is that?” You look at your partner’s face and follow their gaze to your  torso and you realize something at that moment: you had never told your partner what it means to be an ostomate. Ostomates live with a part of an organ exposed outside of their body but  usually secured in an ostomy bag for the rest of their life. Although at first it is difficult to adapt to  this visible change, ostomates soon became comfortable and adapted to their routine well.  However, this new life for ostomates brings some changes to their personal life, especially to their  physical relationship with their partner. Both ostomates and their partners should take steps to understand about ostomy life and give each other the benefit of doubt to further improve their  relationship in a more intimate sense. 

An ostomate should prepare themself physically and mentally to discuss their condition with their  partner. This is important and necessary because post-surgery will bring a major change to their  body. Along with it, an ostomate may feel anxiety, fear and concern about their body. Ostomates have to express their fear and worry to their partners to alleviate their distress of this new  situation. An ostomate should understand that they can never ignore and hide their stoma from their partner forever. They should initiate small talks with their partner especially when they are ready  to engage in physical intimacy after surgery. They can talk about what happened with the surgery,  how the post-surgery life looks like, what is a stoma and how it looks like, ostomy pouch and what  it does and how they change it and so on. These small conversations will directly educate their  partner about what kind of changes an ostomate is going through and give them insights into what  being an ostomy means to their relationship. An ostomate can take the following steps in order to  engage in sexual life with their partner. 

  • Take time and slowly expose the pouch and stoma to your partner. Your partner may show  reactions such as shocked, scared, or even curious. Or they may not show any reactions  as they are not sure on how to react to a stoma. They may not be sure on how to react  also. Don’t get angry or disappointed with their reaction or lack of reaction in some cases.  Most of the time, a partner will worry that they may hurt the stoma and dislodge the equipment during intercourse. Be patient and tell them how it does not affect your sexual life and how they can help you so it does not hurt during intercourse. Give your partner  more time to ensure they feel safe, secure and comfortable to be together with you. 

  • Take care of your pouch. The type of pouch plays a role in ostomate sexual life. It  will be good if you wear a non-transparent pouch. Non-transparent pouch prevents your  partner from seeing the exposed stoma and the contents of your pouch. The reason is,  they might be scared to engage in sex when they see your stoma. So try a non-transparent pouch or alternatively you can buy or design your own “pouch covers”. Pouch covers can  become a fashion statement and it can make you feel good too. Additionally, ensure your pouch is empty before engaging in intercourse. This is crucial to ensure there is no leakage  or unpleasant smell during intercourse. You have to keep everything clean and neat  beforehand to make it comfortable for both yourself and your partner.

  • Monitor your diet before engaging in sexual activities. See which food helps you and which  does not. A good diet can lead to an improved sexual relationship between you and your  partner. Avoid foods that create gas and odor especially beans, broccoli, corn, cabbage,  and peas. Experiment about which food causes bad reactions and gas to you and avoid  them or at least eat them sparingly. This will prevent your stoma pouch filling with gas. To  keep it safe, try to use a gas filter pouch as this will keep your pouch flat and deodorize the gas. 

An ostmate’s partner can also take several steps to ensure their relationship with their ostomate  partner is healthy and good. As ostomates, they might go through a difficult time adjusting and even fear rejection. So, as a partner, be patient and give them time. As an ostomate’s partner, you can follow  the following steps to have a better intimate relationship with them. 

  • Don’t jump into a sexual relationship right after their surgery. You should remember that  ostomy is considered major surgery and your ostomate partner needs time to adjust to  their new normal. The surgery does not only put stoma outside but there is a high  possibility of bowel and fistula track removal for those who have Inflammatory Bowel  Disease (IBD). Your partner definitely need considerable amount of time to heal and gain  back strength following their surgery. 

  • Be mindful of your reactions and try not to create any distance with them. Your ostomate  partner may feel rejected and feel lonely. Communication is the key solution in any issue.  If your partner does not initiate their post-surgery life, try to initiate that conversation  yourself. For instance, discuss with your partner about physical intimacy and experiment  with different positions so that they may not feel uncomfortable. Keep in mind that most stoma patients will not engage in intercourse for weeks or months after surgery. 

  • Seek professional advice from sex consultants, Enterostomal Therapy (ET) nurses, or IBD  advocates to educate yourself about your partner's sexual issues. Generally,  professionals will provide solutions to improve on both you and your partners’ emotions  and also how to manage your sexual life. Professionals may not solve the core problem  for you but they will be able to provide suggestions, or solutions from their research and  work with other patients. They can also talk about your concerns, make you understand  your feelings better and give meaningful and constructive advice for you. 

Being intimate is highly possible for an ostomate and their partner if both take time with their new  situation and be supportive of each other.  Be positive and engage in activities that make you happy and healthy. When you find a new  partner, talk to them about your ostomate life and be open to answer questions honestly.  Communicating with each other about your needs, wants, concerns and fears can go a long way  in ensuring a healthy and meaningful life together.

Challenges as a Crohn's Warrior in Malaysia

In Malaysia, Crohn’s disease is also known as “Western Disease” or “Rich People Disease.” The reason behind this is mainly because Crohn’s is a rare disease in Asia,  particularly in Malaysia, as compared to Western countries. Many in Malaysia have never heard of this disease. Therefore, they are not aware of the Crohn’s and colitis patients’ struggles with their pain, medical procedures and psychological issues. 

Crohn's Warrior in Malaysia

At the beginning stage, I had no one to guide me. I had no idea on how to handle my newly diagnosed disease. With no medical background, no one in the family or friends with similar conditions, I struggled to cope with this disease and my normal life. Can you imagine the struggles I faced as a first year university student with my condition? I was  alone and I didn’t even understand what was going on and my normal was no longer a  normal. The internet was my only resource for information other than my doctor. By reading  everything I could find in the internet, I slowly started to understand this disease. Back then,  there wasn’t even a support group for Crohn’s in Malaysia as the disease is relatively unknown to Malaysians. In fact, I didn’t even known about any other Crohn’s patients until I  met one almost a year later after my diagnosis. My gastro doctors encouraged me and other patients to start a group so we could create a support system to each other. Now,  newly diagnosed Crohn’s patients or caregivers in Malaysia have access to few channels  that they could use to discuss, ask, guide and support each other going through this painful disease. 

Living with chronic disease, I had to adjust and adopt to new diet and lifestyle.  Changes in diet were mostly trial and error in the beginning. I had to monitor my  consumption and take note of any changes. Why did I have to monitor those changes? It is simply because I wanted to avoid flare ups that were caused by certain food that I consume.  For me, I found that my Crohn’s is mostly under control when I avoid foods that contain eggs. So I have to ensure my daily food consumption is egg free. If I didn’t, I’d have to visit toilet frequently the whole day. Precaution is needed for Crohn’s patients because flare ups can happen in any situations, therefore any heads up is a good one to have. 

Apart from my diet, I had made some massive changes to my daily activities too. Since I’m an Ostomate, I have to ensure that I don’t partake often in hardcore sports in order to avoid stoma prolapse. 

The understanding and acceptance of IBD in society is still a challenge for me. Most of them, as  I mentioned above, do not know about Crohn’s disease. I remember one of my friends asking me “Sara, is your disease infectious?”. At that time, I just laughed and say “No, it  doesn’t”. The lack of awareness, although understandable, is a huge disappointment when  someone I confided in is not taking any initiative to understand it.

Stress is another thing that I started to consciously manage. What is the connection  between Crohn’s and stress? Well, stress generally affects a person emotionally and mentally as it damages a person’s emotional equilibrium. But it also affects the person’s health. Even a person without chronic disease can feel their health being affected by high stress levels. So, anyone with chronic health issues, such as IBD patients, have higher  chances of having a relapse and flare when they are stressed. It is imperative that I  recognize my stress inducers, my stress level, my tolerance level and ways to reduce stress  so that I do not have chronic flare ups. Although it is impossible to live stress free all the time, I  believe that I should try to manage stressful situations to the best of my abilities.

Navigating relationship with Crohn’s is complicated and challenging. Crohn’s has created ups and downs in my relationships with my family, friends and loved ones. In the beginning it was really hard to explain to them my condition. They did not understand the condition or why and how I got this disease in the first place at all. It took a while for my  family to accept my condition and now they are slowly getting used to it. They are a great  support for me at the moment, and my heartfelt thanks. 

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Dealing with Crohn’s is tough enough and unfortunately, Crohn’s is not something  that we can ignore or that it will disappear one day. Every single day is a challenge for me because I go through physical and psychological pain. I have to survive, improve my quality of life and live my life as normal as possible; I hope more people will become aware of  Crohn’s disease, of patients’ struggles, and accept their conditions. Be kind even if you don’t see someone’s struggle, their pain or their decreasing health.

My IBD Life: The Road Not Taken

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Hello everyone. I hope you had a wonderful World IBD Day! 

The month of May is special to me because May 17 happens to be my stomaversary! Three years ago, on May 17, I received my ileostomy. It was a decision that I made after Infliximab a.k.a Remicade gave up on me. My doctors wanted me to try some more meds, but I insisted on the surgery. I wanted a permanent ileostomy, which was quite a surprise for the surgeons. I remember them coming up to my hospital bed and asking me questions about my education and background. I smiled and assured them that I did want my ostomy to be permanent. In a country like India, where stigma and taboo exist even with the state of being ill, it is rare for a 24-year-old person to ask for something like an ileostomy, additionally, a permanent one. 

I actually wanted an ileostomy back in 2015. I would have had a temporary ileostomy then. I had already failed most meds and immunosuppressants with the exception of MTX (methotrexate) and biologics. I could not afford biologics and the doctor I consulted then had already told me that only biologics or surgery could help me get better. Soon thereafter, I started visiting the outpatient department of the All India Institute of Medical Sciences (AIIMS) in New Delhi, which is considered to be the best hospital in the country and it is a government-run hospital, so consultations are free. However, owing to the massive burden of patients that it bears, not every patient gets the same level of care. The doctors try their best, but they are humans after all. 

When I went there, I begged the doctors to give me an ostomy. I had already watched countless videos on YouTube about young people living their lives with a stoma, and I figured a surgery would buy me some time and my intestine would heal, and I could get it reversed later. I was 22 then, and the doctors told me that a stoma at 22 would make my life very hard in India. I was thus advised to try the same medicines once again that I had already failed along with some new antibiotics and brands of aminosalicylates. I did not do any better on them. My condition was deteriorating and my scans were not good, but it was still not bad enough to get me into a bed at AIIMS. Meanwhile, in addition to my symptoms of constant bloody diarrhea and weight loss, I was beginning to experience some pain in my pelvic regions whose intensity and duration were growing day by day. 

In December 2015, I went to the GI OPD at AIIMS and cried straight for 4 hours in pain. It was then that a senior doctor saw me and I got to consult with him. I begged him to operate on me. He consoled me and assured me that I would be treated better and I was then admitted to the GI ward. I stayed there for a month amid more courses of steroids, antibiotics and scans. On January 2nd, 2016, my 23rd birthday, I was given my first dose of Exemptia (a biosimilar of Adalimumab a.ka.a Humira) which was cheaper than Remicade, and patients at AIIMS were provided with some assistance by the firm that manufactured the drug to lower the financial burden. I went home with some hope which lasted for only 2 weeks. After 2 weeks, I lay 24/7 in pain in my bed, 10 steps away from the toilet. I managed to pass some firm stools, but that made the pain even worse which was now affecting both my hips and lower back and my thighs. It felt like a thousand hot steel knives carving into the flesh inside my intestines and my pelvis. I frequently visited the ER in the middle of the night, screaming in pain to get a dose of IV Tramadol.

As I write this, it almost makes me want to stop writing further. I remember taking sleeping pills, antidepressants, and tramadol pills to sleep and kill the pain. I remember trying to end my life for 2 nights. I remember trying to hang myself. I remember giving up. My younger brother had received an offer of admission from Imperial College London, but he was working instead, to run the house and afford my treatment. My parents had separated. I figured it would be better for everyone if I killed myself. I really didn’t want to die though. I just wanted the pain to end. I eventually ended up admitting myself again in the hospital in February. An MRI of my spine did not find anything. Psychiatrists thought I was exaggerating my pain because of past emotional trauma. The SR (Senior Resident) who oversaw me in the ward did not believe me when I told him that Adalimumab was not working anymore and my symptoms were worsening. After a month, I ended up faking wellness (I told my doctor I wasn’t feeling any pain on Clonazepam, when in fact, I stayed up all night in pain and additionally did not ask for a pain shot) to get out of the hospital. 

Back home, I started taking more pain pills and anti-anxiety drugs. The biologic was not doing its job anymore and after another month at home, I was back in a bed at the hospital. This was my worst. I was totally incontinent, bedridden, and weighed 80 lbs. I passed blood and mucus incessantly even when I was ordered not to eat/drink anything. Doctors had given up on me, and Infliximab was just too costly. There was no way I could afford it. One night, the SR came in and told my mother to take me back home. That night, once again, I found myself thinking about death. I was not afraid of it, but I regretted that I could not do anything significant. My ambitions and dreams were dying with me. The next day, I and my friends started a crowdfunding campaign to gather money for Remicade, which was very successful owing to the kind generosity of my college batchmates, and I gained some more time on Remicade. But the pain never went away. It was constant and Remicade had minimal effect on it. I was still incontinent. All that any drug could do for me was to decrease the number of my visits to the toilet. Incontinence and pain were chronic. I depended on diapers, a cocktail of many pain meds, and many unhealthy, unsafe, and drastic measures to get through the day and night. I was getting Remicade infusions every month instead of the usual 8-week frequency because there were signs that Remicade too was not working. I found myself in the hospital every other month.

When Remicade finally gave up on me, and I had lost 2½ years, I decided it was time to get rid of my colon once and for all. My GI tried to persuade me to try some more treatments like FMT, but I aggressively denied. While I was being taken into the operating room, my surgeons once again asked me to permit them to retain my colon. I told them that if they found anything worth retaining, they could. When they opened me up, they found - “Hepatic flexure, transverse colon and up to upper rectum thickened. Descending colon and sigmoid colon densely stuck to parietal wall, mesentery shortened and thickened”. These are the intraoperative findings as written on the operation note from the day of surgery. The surgeons could not save any part of my colon except for the lower rectum and anus. When they told me after the surgery that they could not save anything, I was not sad. I was relieved. My pain was gone. I had a chance to re-build my life now. I would not have to stare at the outside world from the window grills of the hospital hallway anymore. I don’t know if that operation note explains my pain, but I firmly believe that I was never insane or exaggerating my pain because I never needed IV Tramadol after the surgery. Earlier, I had been labeled an addict and treated like a liar. All my self-doubt disappeared after my surgery. 

Getting back on my feet with my ostomy was not easy. I suffered from ileus immediately after the surgery and I could not keep anything down. I was sent home prematurely because that is how things work in a hospital with too many critical patients and too little beds. I was dejected and did not want to go to the hospital. I was scared because this surgery was supposed to work. I was vomiting furiously. Reluctantly, I admitted myself back after 3 days of discharge and finally after 15 days, my stoma ejected out gallons of intestinal juice like a fountain, and when it stopped, I could eat again. I went back home. After 6 weeks, I was back to work and I never went back to the hospital again, not even for a follow-up or to get my discharge papers. I had lost a lot. Now I had to get everything back. Finally after 2 years, in August 2019, I found myself in the best graduate school in India - the Indian Institute of Science.

I never want to tell my story to people, because I’m not sure what kind of message it sends out. When I go to the annual meeting of ostomates at AIIMS, I find nobody in my age group. I feel alone and wonder if I made the right decision. I wonder if I would encourage another 24-year-old in India to get the surgery. I often did many things that bordered on insanity to get through the intense pain I felt for over 2 years. I often ask myself if I could have done anything else. What do you think? What would you have done if it were you instead of me? What would you choose? When I told other patients that I was getting an ostomy, I received many messages urging me not to go for it. They told me it would destroy my life. Here I am though, living with minimal pain and no meds, in the best graduate school in my country studying Aerospace Engineering, which was my childhood dream. However, I have a very limited social life. I might never be able to work for an industrial organization. I don’t even know if I can make a career in academia. My future is still uncertain. With every passing year, statistically, my chances of falling into a relapse increase. My rectal stump still passes out mucus and blood frequently, and my stoma health is not so good. In a hurry to make up for lost time, I also haven’t given myself time to process everything that has happened to me. 

I guess in the end, it’s a journey of self-discovery where you find out who you really are, what matters to you the most and what you are capable of. I am content with the choices I made, good or bad. Things could have gone more wrong because of my choices and I might not have survived. I was prepared to take that risk though. I had dreamed a dream, and when that dream was lost from me, I wanted it back so desperately, that I was ready to sacrifice anything to get a chance to work on those dreams again. That’s who I am. I never knew if it would work out, but I sure did believe. And I hope you believe it too. No matter how bad it gets, I want you to believe that things can work out well in the end. And I want you to hold on to that belief firmly. 

I share my story in the hope that you don’t give up like the many times I did in despair. I hope that whatever road you choose for yourself ends in a brighter place than where you began. I hope that your story becomes a greater force of hope than mine. I hope.