Finding happiness with Chronic Illness

When we think of being happy, many of us think of reaching the big life goals such as the perfect job, spouse, house, car and family situation. When we reach one goal, we are overcome with happiness for a short while till we strive for the next. Everything is to come one after another, THEN we will be happy. By meeting pressures put on us both socially and personally we can find this “happiness” and be seen as successful.

Throughout the years living with a chronic condition, I have tried my hardest to meet the goals above to be “happy”. If my disease prevented or delayed me from achieving any, a deep sense of sadness and failure entered my heart.

But what if in this crazy life, you find happiness in the most imperfect situation? If you were to tell people exactly what was happening, they would be sympathetic and maybe even cry for you. However in reality, the sequence of events and outcomes has just been so perfect (for you) that you can’t help but be happy and ready to tackle anything to come.

How is it possible to find even an ounce of happiness when you’re fighting a battle with your body? Well, here’s the thing. It’s not easy and it takes A LOT of learning. But here are a few ways chronic illness has helped me find it.

Finding the beauty in everything. Whilst I was in hospital one January it snowed heavily but luckily I had a bed beside the window. Lying in bed, I watched the beautiful glittery hills, when I finally went outside for a walk (attached to my feed which my husband kindly wheeled along for me) I stood outside in the snow wearing flip flops to feel the coldness and THAT felt beautiful. Nothing beats fresh air and the crisp coldness of snow. Would I have appreciated that if I hadn’t been indoors for a week? Probably not.
A walk in the park pain free, having the energy to have a cooking lesson with your mummy, being able to meet friends for last minute coffee dates are all so precious when you’ve spent the last 3 months curled up on the sofa or a hospital bed.

Learning true gratitude by realising what an amazing support network of family and friends you have. Living with a chronic condition is not fun and being around that person is sometimes not fun either. When you really are at your worst state, that’s when you know who the gems in your life are. Being brutally honest, in the past these situations have upset me as I focused on the people who weren’t around when I expected them to be. But that was just MY mistake. Remove expectations from absolutely everyone, even the person you were there for in their time of need. Now I know what some of you will be thinking, you shouldn’t be doing things for others and expecting something  in return. But in reality, what if you spoke to someone regularly whilst you were well and fun to be around, and then they didn’t keep in touch whilst you are unwell for months? It’s a much harder pill to swallow than any pill the nurse will give you in your hospital bed. But by letting it go, it will make you see those who ARE there for you in an amazing light and that appreciation will just fill your heart with love and joy.

Look after yourself. You may go through periods where you are not be able to do everything as before and that’s okay, take that extra nap/day off to heal your body and do not feel guilty about it. These days are not “wasted”, they are being used to help your healing. If there are negative people or environments you come across that may hinder your healing, respectfully limit them as much as possible.

Be honest when people ask you if you are feeling “better” but you are really having a rough day/week/month and have forgotten what better actually feels like. The fake “I’m fine” is not useful to you or your loved ones who want to help you, let them in and let out how you’re feeling. Chronic illnesses are more than often invisible, we may look fine but are far from it.

Be selfish. If you need a break, take a break. If you want to be left alone, be alone. Not worrying about what expectations other people have of YOU will free up so much time and energy you really need for yourself.

Realise that your story is unique. Don’t compare your life with other people, not even others with the same disease as each and every one of us has a unique story. We all have our individual gifts, strengths and weaknesses, it’s up to us to find them and work on them to better ourselves.

When you can, be the person that cares. Allow your experiences to help you grow as a person and be more empathetic towards people, even if you don’t fully understand what they are going through. Be part of someone else’s amazing support network. THAT is a goal far greater than anything materialistic we are guilty of trying so hard to attain.

Shehnaz Bashir RD

Hajj with an Ileostomy

Hajj is one of the five pillars of Islam and the only pillar which has a chapter in the Quran that bears its name. It is obligatory once in the lifetime of a Muslim providing he/she is physically and financially capable of performing it.

This year I had the privilege of being one of the pilgrims amongst the estimated 1.8 million. It was my first journey abroad since surgery which created my ileostomy, 8 months prior. This journey involved intense heat, physical activity and the complete removal of the luxuries we are used to in the western world. Naturally, I was pretty anxious!! But with the right preparation, duas and protection from Allah SWT I made it through  الحَمْد لله (praise be to God).

Throughout my journey, I had a strong urge to put my experiences down to later put them out there for other Muslim ostomates. This was mainly due to the fact that whilst preparing for the journey I tried several times to look for people’s experiences online with no luck. I kept thinking; surely I can’t be the only one with an ostomy who has made this trip? I wonder what advice these people would give me? Keeping my experiences to myself started to feel wrong, particularly knowing that they could possibly help someone else complete this core pillar of Islam.

So, before I begin to talk about my experience, I would like to clarify the intention of this article. It has not been written for any name or fame of my achievements but rather to help Muslims in the same situation as myself make an informed decision when intending to go for Hajj. Even if one person out there googles “hajj with an ileostomy” and happens to find this article beneficial, الحَمْد لله! My work here is done.

Before planning for this journey, ask your surgeon if he/she feels you are ready to be thinking about this. If you don’t start off 100% well, things could get difficult on your journey so always be realistic and follow advice from medics. If this year is not your year,
إن شاء الله (God willing) make intention for the next and remember it is not obligatory for you if your health is at risk.

The essential tools

1. Oral rehydration solutions – e.g Dioralyte. Probably one of THE most important things to take with you. Dehydration is a big issue for all pilgrims particularly with Dhul Hijjah now falling into the warmer months. We had a very hot September with temperatures as high as 45-50 degrees (1437h). If “normal” people need to worry about dehydration from the loss of water and salts from sweat and urine, ileostomates have a much bigger battle to face with Stoma output to think about too. I often found myself drinking 2-3 times as much as people in my group and having at least 2 sachets of Dioralyte a day to replace salts lost. The amount of Dioralyte taken is very individual, judge this by how much fluid there is in your output.

2. Anti diarrhoea drugs – e.g loperamide or Imodium. If you are not already taking these to thicken your ileostomy output, I strongly suggest discussing a prescription with your surgeon and getting your bowels used to these prior to your trip. In the heat, ileostomy output can increase and contain a lot more fluid. Not only do you want to prevent the urgency to use the bathroom (in case there aren’t any around) but also prevent dehydration.

3. Non perfume wipes. This is extremely important since you need to ensure Stoma bag care is good but also comply with the conditions of Ihram.

4. No perfume AND no alcohol hand sanitiser. Also to comply with the conditions of Ihram but difficult one to find! I’m sure there must be plenty out there but I only found one from Boots UK and therefore cleared the shelf 😂 anyone who knows me know I use far too much of this stuff even in the UK. But when on Hajj it’s so important to make sure you are sanitising regularly, the last thing you want is to end up catching one of the many bugs typically around during Hajj season.

5. Uncut Stoma bags. Your little Stoma might do funny things in the heat. I was advised by my Stoma nurse that I could expect to see it get a whole lot bigger in the heat, obviously mine did the opposite 🤔 so the little guy shrunk for a few days (probably due to the shock) then slowly started to go back to its normal size. Uncut Stoma bags are a MUST as you want to ensure the skin around your Stoma stays as healthy as possible. The last thing you need to deal with is sore skin, itching etc. Take a measure guide and use it at every bag change! The general rule when going anywhere abroad is to take double the amount of supplies incase you need to increase bag changes. Make sure you follow this, I definitely increased how often I changed my bag due to the Stoma changing size and wanting to protect my skin.

6. Toiletry bag with a hook. Use this as your Stoma changing bag and to store wipes, it just makes things so much easier when you have no surface to use, you can easily whip things in and out of the bag hanging off a hook. Here is mine:

 

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7. Stoma guard. If your NHS board provides you with support wear, talk to your nurse to obtain and Stoma guard. Several different versions are made by different companies but the basic aim is to provide a belt with extra protection around the Stoma for any knocks, elbows and nudges. This is very likely to happen when crowds are big particularly during Tawaf, Sai and Jamarat. If your NHS board does not provide support wear (like mine), you can easily obtain these online or contact a company with your measurements as these should be well fitted. I got mine from http://www.suportx.co.uk.

Let’s talk Hajj!
Mina is where it all begins. This is where you will be spending 4 of your 5 nights of Hajj, you will be in a tent which will be located in a area with other groups from your country so we were surrounded by people from the UK. Toilets are easily accessible but queues are likely! In Saudi the majority of the toilets are a hole in the ground, with one English toilet in the last cubicle (usually a ratio of 10:1) and a massive queue of British people who refuse to use the hole! I have to say as the days went on more people started to use the hole as the waiting times in the heat were too much just to sit down! So here is where I prepare you, then tell you a little secret which actually means us ostomates have it easier than anyone else in this situation 😉

Here are the Mina toilets:

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BUT FEAR NOT!! Whilst preparing for this journey I came across a genius product which honestly made my life so easy in the toilets. With a Stoma you would normally have two choices. 1. Queue for 40 mins each time you want to use an English toilet 2. Use the hole and suffer major splash back (sorry to be so blunt), unless you master a technique to avoid this.

This product is the lovely riksack which is essentially a bucket with a clip and adjustable strap.

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It comes with two different types of bags to line the bucket. The first is used when emptying the bags and is water soluble so it can be disposed of in the hole. The second it not water soluble and used when changing the bag, there are plenty bins around Mina which are emptied regularly where you can dispose of these. For more information and images see http://www.stomaworks.co.uk/index.php?route=product/product&product_id=51

I would strongly suggest wearing a small backpack when on the journey and carrying the riksack with you everywhere as you are very unlikely to find english toilets during these 5 days. And if you do, they are unlikely to meet your hygiene standards.

Arafat
The day of Arafat is just so beautiful words cannot describe it. Every single moment needs to be cherished so eat small amounts but always stay hydrated. Toilets are much the same as Mina however there are no hooks. You can pick up a cheap over the door hook from your local pound store and use that to hang your changing bag from.

Muzdalifah
Here is where we spend a night under the beautiful stars! ⭐️⭐️⭐️ I would recommend going to the toilet in Arafat as close to the time of leaving as possible as toilet facilities are a lot more reduced in Muzdalifah. You can expect long queues and poorer standards of hygiene as the toilets are so busy! At this time, I increased my loperamide dose to try to avoid using the toilet but unfortunately after the lovely sleep I woke up to a full bag! Nothing I couldn’t handle with the lovely riksack though.

Back to Mina
To wait for your time slot for going to Jamarat. There can be a lot of waiting around during the next three days where you will be walking to and from Jamarat for pelting, we experienced our hottest day waiting in the Mina tent only to be called after 4pm. The key thing is to stay hydrated during these waiting times, although you are not physically active, your body will still be loosing a lot of water and salt from sweat, urine and Stoma output. From the UK tents in Mina to Jamarat you can expect a walk of around 3km, so staying hydrated cannot be emphasised enough.

Masjid al Haram
One of the final duties of Hajj is to complete Tawaf Ziyarah, without this Hajj is incomplete. For me, it had to be one of the most memorable days, however with all of the millions of pilgrims requiring to complete this, you can only imagine how busy Tawaf and Sai is during the final days of Hajj! Wearing your Stoma guard is absolutely essential at this time as you will get pushed around (intentionally or unintentionally), you want to be 100% focused on the task so take the necessary precautions before entering Masjid al Haram.

Toilets are available around the Haram, my fear was ending up with a very full bag and having a leak inside the masjid 😳  الحَمْد لله that is something I did not experience during any part of my trip but there were times my bag filled up much quicker than I expected. If you can get to a toilet when it’s half full, it removes this anxiety!!!

Amongst all the toilet, Stoma and hydration talk, it is important to remember that this journey incapsulates something much bigger than these mere factors, with or without a Stoma. Hajj is a test of your patience and about sacrifice, always remind yourself of the intention for your journey. Most of all, ENJOY IT!!! The days of Hajj are now amongst the best days of my life and I pray that each and every one of you reading has a chance to experience it. Ameen. ☺️🕋❤️

 

Shehnaz Bashir RD 🍎

The Stoma Bag

The Stoma Bag is a lifesaver for many people. It allows the removal of a diseased organ in order for people to live a fuller, healthier life. For me, this little piece of beautifully designed plastic and material has been life changing.

For people who are not familiar with the topic (like myself 3 months ago), it can be quite difficult to understand the concept of pooping or peeing into a bag attached to your skin. Yes, it sounds pretty crazy. I’ve found a lot of people are completely baffled by the idea and so they avoid talking about it. It’s a natural thing to do if you don’t understand much about a situation and don’t want to offend, but as a result it’s become this elephant in the room. I would like to use this post to break it down, so that you feel confident to ask people “how are things with your bag” or “how’s the Stoma?”.  So far I haven’t met anyone with an ostomy who would be offended by this.

Types of Stomas can broadly be categorised into the 3 types.

  1. Ileostomy:  where the small intestine (ileum) is to be diverted and carries poop
  2. Colostomy:  where the large intestine is  diverted which also carries poop
  3. Urostomy: where the Ureters are diverted which carry urine

Why do people need a Stoma?  Ileostomies and Colostomies are formed most commonly due to bowel cancer and Inflammatory Bowel Disease. These Stomas can be temporary OR permanent, depending on the disease. Urostomies are required for bladder cancer, severe urinary incontinence and damage to the pelvic area. This procedure is always permanent.

The Stoma

Stoma

The Stoma has no nerve endings therefore no pain/discomfort is felt when pooping or peeing, and for that reason it is actually difficult to tell when it’s happening! A healthy Stoma will be pink-red, moist and shiny.

The Bag

Bags for all 3 types of Stomas generally have the same features. Here is a bag used for an ileostomy. Meet the Hollister Moderma Flex, one piece drainable ostomy pouch, soft convex, flexwear barrier. I have used it to show you the basic principles of most bags:

stoma bag hollister front edited for blogstoma bag hollister

There is a huge variety of designs to suit different lifestyles, I have been completely amazed at the market for these products. The design takes into account things like: body shape, stoma size, stoma shape, activity levels, preference of material and skin reactions to different materials. I heard a very interesting fact about a bag I tried post surgery – Ted Baker had a temporary Stoma and after experiencing the products available, he used his skills to improve the design of a bag for a company called Coloplast.

Wearing a bag for the first time…

After surgery, when I was asked to get out of bed for a walk by the lovely Healthcare Assistant, I told her I was too scared to move away from my bed in case it “fell off”. Obviously, she laughed. Then reassured me that it would have to be extremely full before that could happen! It’s such a strange and scary feeling relying on this piece of sticky plastic and material to stop you pooing (or peeing) all over the place.

Support

In the UK, there are 3 national stoma patient support organisations. They are: Ileostomy and Internal Pouch Support Group (IA), Colostomy Association, Urostomy Association.

Each of these organisations has a lot of information on their websites, so if you know someone with a Stoma and want to find out a bit more, visit their websites. These organisations also run local support groups. 11 weeks post surgery, I attended my local Ileostomy and Internal Pouch Support Group which was fantastic. If you are nervous about attending on your own, perhaps taking a friend or family member will be helpful for you but also for them to learn more.

Online information/forums and local support groups are only two of the many activities these organisations do. Upon receiving my most recent newsletter, I came across a service by the Colostomy Association called Stoma Aid. People in the UK often end up with many unused Stoma supplies, especially when first trying to find the right bag and fit. Companies will happily post out free samples of several types of bags. Stoma Aid allows these bags to be redistributed to people with Stomas in developing countries. Many of these people cannot afford bags and have to improvise with tin cans, plastic and bags which is truly horrendous and isolating, particularly when you have no control of the output. If you have an ostomy or know someone with an ostomy and unused supplies, find out how you could help someone: http://www.colostomyassociation.org.uk/index.php?p=233&pp=189&page=Stoma%20Aid

Here are some of the different types of bags I have managed to accumulate so far!

mix of stoma bags.jpg

So, if you have managed to get the end of this blog post and are thinking you haven’t met anyone with a Stoma, you are more than likely wrong. Around 13,500 Stoma surgeries take place in the UK every year! Although this is major surgery, once recovery time is complete, people go on to live normal lives and in much better health than prior. It’s a surgery I will forever be grateful for.

Shehnaz Bashir RD

Being gutsy without a colon…

Here is my first blog post as the colon-less dietitian. As promised, I want to share a bit about my surgery in the hope that it will help people to have a better understanding. Since my last blog post where I mentioned surgery, I am amazed at the amount of people who have said “I know someone else with Crohn’s too” or “He/She has a bag too”. It’s great that people are recognising the condition and surgeries but it would be even better if they knew how it can impact people’s lives. Of course my blog is not a reflection of what everyone goes through, this is just my journey but nevertheless it will give an understanding of what Inflammatory Bowel Disease can involve.

Why is surgery required?

Crohn’s Disease is one of the most common Inflammatory Bowel Diseases; it is a condition which causes inflammation in the gastrointestinal tract, anywhere from the mouth to anus. The condition is treated with medication and generally patients move down a line of medications, passing from one to the next after they are no longer effective (known as a “flare up”). When all medications have failed to put the condition into remission (or in cases of an emergency), surgery is required to remove the affected part of the GI tract.

The surgery:

There are many different types of surgery that patients can experience depending on disease severity and where in the GI tract the disease is. Most often, part of the intestine is removed to form a temporary or permanent opening at the surface of the abdomen. This is an ileostomy if the large intestine is a completely removed and a colostomy if part of the colon remains. The rectum is often not removed as this gives patients the option of having the stoma reversed in the future (if their medical condition allows).
This might seem like a lot to take in, for me it certainly was! I tried to prepare myself by reading blogs of people’s experiences, but during my recovery I have realised that no matter how much blog reading and research you do prior to surgery, it doesn’t half prepare you for the actual experience. My consultant warned me I would “feel like I’ve been hit by a bus”. He was right.

So here is a little summary of my journey after being under the knife…
🔪Waking up from surgery: OUCH. 7 hour surgery later, I can hear the anaesthetist reassuring me it was a keyhole procedure (complications can lead to an open surgery). But all I care about now is easing this pain. Where is my magical morphine button?!

🔪1 week post op: today I walked around the whole ward. TWICE. It might not sound like much, but I am chuffed. Still feel like a 90year old lady in a 27 year olds body. Everything hurts. I’ve had my catheter and drain from back passage removed, the most uncomfortable accessories ever.

🔪2 weeks post op: I’m home! The colorectal nurse (also known as a Stoma nurse) assessed my skills on changing my stoma bag independently which were not bad so I managed to get away! Also my blood inflammatory markers are gradually reducing and I’m recovering from an infection post-surgery.

🔪3 weeks post op: My stoma bag has been a complete nightmare. The occasional leakage is what any ostomate tries to be prepared for with extra bags handy etc, but mine has been leaking EVERY day. I can’t go out confidently and just want to curl up to cry. Is this life with an ostomy?! Major breakdown mode.

🔪4 weeks post op: an emergency visit from the stoma nurse later, I got my perfect bag. Because my stoma is so small, a flat flange wouldn’t be secure enough. Therefore I tried a convex flange to push the stoma out more (don’t worry I’ll go into details regarding the bag jargon in my next post). This called for celebratory fish and chips at my favourite spot, Anstruther.

🔪5 weeks post op: I have had a better social life recovering from surgery than I did before. Feeling a bit overwhelmed by the support and encouragement from others, it makes me feel blessed.

🔪6 weeks post op: So I finally drove for the first time after surgery. It feels good to have some freedom back and starting to feel like a better version of my old self.

Not only is recovery dealing with the wounds and stoma bag, it brings a whole bunch of (for me) brand new emotional issues too! I went into surgery feeling very optimistic with the mind-set that this was what I needed to live a healthier life. Don’t get me wrong, this hasn’t changed, however during my recovery there have been times where I’ve felt really down and started to question the situation. It’s such a strong emotion with the change of lifestyle but luckily this is becoming more infrequent.

As time goes on, wounds are healing, life is becoming more “normal” again and the benefits of surgery far greatly outweigh this horrible emotion. The main benefit for me being the ability to eat a wide range of foods again. How many of us take the ability to eat whatever we want for granted? Well, over the last 3 years I hadn’t been able to eat very much fresh fruit and vegetables at all. So naturally, my first craving after surgery was a bunch of cold grapes and I devoured them without an ounce of pain after. That’s when you know you made the right decision. Being colon-less rocks.

Shehnaz Bashir RD

The night before the rest of my life.

Firstly, I would like to apologise for neglecting the blog recently, we seem to have had a little gut trouble at Gutsy…

Most of you will know from my previous post that I have an Inflammatory Bowel Disease (IBD) called Crohn’s Disease. Around 10 years after my first hospital admission, I am laying in a hospital bed waiting for my first surgery. My colon has decided it no longer wants to live in my body. A bit inconvenient, I know.

I am scheduled for surgery to have my large intestine removed, with the end of my small intestine brought to the surface of my abdomen and stool will be collected in a bag attached to this. The formation of this opening is called a Stoma and the type of Stoma I will have is an ileostomy – because my ileum (last part of the small intestine) will be at the surface.

After several weeks of tears and coming to terms with the rejection from my organ I have so lovingly sheltered, I am ready to part with this inflamed piece of intestine in the hope of being pain free.

Since learning that this surgery is a possibility, I have done A LOT of research. Mainly on types of stomas, bags, possible surgeries, complications and diet. I don’t want this blog to simply turn into a journey of my health but I feel that not sharing this information will not raise awareness of IBD, Stoma surgery and all that comes along with it. To be quite frank, I have found it very difficult to explain to some family and friends what is actually going to happen. Although I know there are many people with stomas and other gastrointestinal surgeries, for some reason it is hardly ever spoken about openly. People are not always up for poop chat but sometimes it’s necessary.

Over the next few weeks whilst I am in recovery I hope to cover what I have researched, my own experiences and any questions you may have. So if you would like to know anything in particular, please contact me and I will try my best to answer.

Lastly, I had said I wanted my “last” meal before surgery to be a Wagamama, unfortunately I didn’t make it. I was however reminded by my better half that this isn’t the “last” of anything. Instead, it’s the beginning of the rest of my life.

Shehnaz Bashir RD