Guest Post – Zero To Ileo In 4 Months

Good morning and happy Monday!  I am delighted to share a guest post from the lovely Julie today.  Julie looked after me when I was last in hospital for my knee which had locked again.  We got chatting as she saw I had a stoma and she told me about her husband who had just had surgery for an ileostomy himself.  We have kept in touch and Julie messaged me to tell me about the skydive she plans to do to raise money for Crohns & Colitis UK.  She asked if I would like to join her and her friend – unfortunately I am not that brave!  I did want to help her however and am asking  that everyone who can spare some money, support this lovely lady and sponsor her crazy antics!  Her sponsorship link is in the post.

julie1

Zero To Ileo In 4 Months – Think Of The Children!

The few months since October 2017, when my husband was diagnosed with ulcerative colitis, have been difficult; sleepless nights, constant trips to the doctors, unexpected stays in hospital and becoming carer to him and his belly butt only being the start of the journey. The disease had quickly established itself, and because of severe flare-ups one after another leading to multiple hospital admissions, and medications being ineffective, the only options was to have emergency major surgery in January 2018. Even surgery isn’t a cure and we still have regular visits to the hospital. Our lives had changed in a relatively short time and we had to find new ways to cope.

When we first heard that the condition was genetic, we tried to find out if any of his family had the disease, perhaps looking for someone to blame for this awful state he was in. It then dawned on me that my daughters had a higher chance of getting the disease, I would hate them to have to go through the same thing and the distress it causes, but I could do nothing to help. Or could I help? I decided the only way I could help was to raise money for research in the hope that if any of my children did get UC, there would be better ways of dealing with it or even a cure.

I looked at various options to raise money and decided that I’d throw myself out of a plane, strapped to a man (hopefully muscular and handsome), and land gracefully with the help of a parachute.

I’m looking forward to it, kind of, I’m actually shitting myself (fitting as it is for ulcerative colitis) but am determined to do it. The date in September is booked, filming arranged, and I have a t shirt and money raising kit from Crohns & Colitis UK. I’ve set up a funding page, donate to Julie’s skydive, and have raised a fair amount in the first three months.

Click here to sponsor Julie’s skydive

All too often, people only think of themselves and the now, how is it going to affect me and what can I do to help myself. But when faced with uncertainty, sometimes we need to look at the future, how others are going to be affected, and what we can do now to help them have a better life.

I met Natalie in the ward on which I work, we chatted and she told me about her blog site. She told me about herself and I discovered she had IBD like my husband. I learned how she coped and was given tips on how I could help my husband. Natalie gave me her contact details and we have been in touch ever since. If I could take one good thing from this disease, it is the lovely people you get to meet, the way they share stories and information, and the support they give each other.

julie

Please help Julie raise lots of money for CCUK – such a brave lady and a great cause which is close to both our hearts.  It was an absolute pleasure to meet Julie and the care I received from her in hospital was brilliant, her husband is lucky to have someone so caring looking after and supporting him.  If you can’t afford to sponsor, please consider sharing this post so more people can see it.  Every bit of help is much appreciated.

Please let me know in the comments below about your efforts for charity – what are you raising money for and what are you doing?  Would be lovely to help share more and more of these.

nat

Top Ten Favourite IBD & Ostomy Support Groups

As this week is Mental Health Awareness Week and this Saturday marks World IBD Day I thought I would do a post combining the two.  When diagnosed with a chronic illness like IBD, mental health problems often come hand in hand.  Being told you have an illness that will never go away, spending lots of time in hospital and having to leave your job because you are too poorly to continue working can all trigger depression.

I am a huge advocate of speaking out and talking to someone if you feel you are struggling and not feeling yourself.  Opening up is a huge, hard step, but the relief you feel afterwards will start to show you how much better you can and will start to feel with the right help.  Your GP can prescribe medication and talking therapy (eg. counselling or CBT) or can have you ‘check in’ on a monthly basis to see how things are going and keep an eye on you.

One of the most supportive places I found were the online support groups.  People with the same illness, going through similar things to you are the only ones who can truly understand.  There are some great ones about and I thought that today I would share my top ten IBD related ones with you which you may like to have a look at and join.

The IBD & Ostomy Support Show

This is the Facebook page attached to our weekly YouTube show where you can see us post about different things to do with IBD and ostomies, ask questions and see what will be discussed on future shows.

IBD Support Squad

A wonderful bunch of people who are like family to me now.  Some amazing, supportive and lovely people here who are always there when you need them.

PW Ostomy Support

A support group connected to the Purple Wings Charity.  Superb support for ostomates, their motto is recover, adapt and overcome.

Making Ostomies Cool

A fantastic group for ostomates where I will always go if I need advice about something stoma related.  There are knowledgeable people in this group from all over the world so it is never quiet!

Sick But Invisible

I have come across some amazing and inspiring people through his page, which covers all invisible illnesses.  Lots of lovely people here and the #youarevisible boxes are a great idea

Funbags & Shitbags

The name says it all!  A fun, sassy group who are always up for a laugh, are proud of their stomas and aren’t afraid to show them off!

Midlands IBD & Ostomy Support

If like me, you are based in the Midlands this is a great group to find out about local meets and connect with people near to you.

Positivitea & IBD

A lovely group I can always turn to for good advice.  A place to be positive despite your illness, but where you can get support if needed.

IBD Superheroes

The IBD Superheroes group is a great place to go for support and have your questions answered.  It also links to their Facebook page and the fantastic work they do raising money for the Cure Crohns and Colitis charity

The Toilet, Me and IBD

A friendly group where there is always someone to chat to when needed.

 

I hope this brief round up will be useful to some of you.  Meeting other people with IBD and stomas was such a huge help, it has literally, and without trying to be overly gushy, changed my life.  My inbox is always open to anyone wanting a chat so don’t hesitate to contact me too if you need someone to listen.

NatalieThe Spoonie Mummy

Blog Series – Conditions Associated With IBD – Fistulas

So I didn’t manage to get this one up last week.  After the unexpected hospital stay, I took some time off to recover.  Today is the second post in the blog series I am doing on conditions associated with IBD and we are looking at fistulas.

What are they?

A fistula is an abnormal channel or tunnel which develops in between two organs of the body.  These can occur anywhere in the body but generally involve the bowel and intestine.  They may connect two parts of the bowel together, or the bowel to the vagina, bladder or skin.  They are more common in people with Crohns rather than Colitis, as they begin when the whole lining of the bowel is inflamed.  Colitis tends not to cause inflammation of the entire lining of the bowel.

Types of fistula

The most common types of fistula associated with IBD are

Anal (also known as perianal fistulas) connect the anal canal to
the surface of the skin near the anus. These are the most common type of fistula and usually appear following an abscess
Bowel to bladder fistulas (enterovesical or colovesical fistulas)
Bowel to vagina fistulas (enterovaginal fistulas or rectovaginal fistulas)
Bowel to skin fistulas (enterocutaneous fistulas) These mostly occur on the abdomen and often develop following surgery
Bowel to bowel fistulas (enteroenteric or enterocolic fistulas) link different parts of the bowel together, bypassing some parts of the bowel

Symptoms of a fistula

Depending on the type of fistula you may experience

  • Tender swelling or lump in the anus, followed by pain and irritation which is worse when you sit down, cough or poo
  • A fistula can drain blood, pus or poo

From the one above my anus – leaking pus and mucus constantly so I have to wear a pad, occasionally blood or stool passes through too.  I have an abscess which drains through it which can be painful

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs Tiffany Nicole

I suffer extreme pain from the waist down. I get random bursts of bleeding which results in low iron.  I also get leakage constantly and pain on my skin

Alannah, diagnosed with Crohns 2012, permanent ileostomy, ‘pelvis riddled with fistulas’ and runs a blog here
  • Passing air, pus or faeces through the vagina/in urine

Before I had my bag I was leaking stool from my front.  I was passing wind from there too and I ended up developing sepsis. Only symptoms I get now, 3 years on are drainage from the seton and some discomfort the odd time from the seton and then my team just change it

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy, rectovaginal fistula

I have symptoms less often in my rectovaginal fistula but it itches sometimes and occasionally leaks stool which made me panic at first, I thought I wasn’t wiping my bum properly!

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs
  • Frequent UTI’s
  • Frequent urge to pass urine
  • Pain during intercourse
  • The person may experience dehydration or malabsorption issues

How are they diagnosed?

MRI, ultrasound, CT scans and fistulography tests may be performed by your doctor.  They will want to identify the route the fistula takes and where the openings are, the number of channels there are and if there is an infection also present

My doctor had a look, the area was very red and swelled, and knew straight away what it was.  They did MRI’s too

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy

I was diagnosed with a vaginal inspection, MRI scan and biopsies

Alannah, diagnosed with Crohns 2012, permanent ileostomy, ‘pelvis riddled with fistulas’ and runs a blog here

I was diagnosed with a colonoscopy and MRI scans

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs

For vaginal fistulas, a blue dye test can be used.  This involves the doctor inserting some blue dye into the rectum and a tampon into the vagina.  If the tampon is removed and is stained blue, it will indicate a fistula.

Doctors may also carry out a cytoscope test to view inside the bladder and urethra to identify a bowel to bladder fistula.

How are they treated?

  • Antibiotics
  • Azathioprine
  • Biologics / Anti TNF medication
  • Surgery – seton, fistulotomy
  • Steroids

I’ve been on biologicals called Infliximab for two years till they stopped working and now on Vedolizumab and I’ve had a seton stitch put in place to drain it

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy

Living with a fistula

Regular, warm baths can help ease the pain and discomfort.  Clean the area with warm water and a soft, disposable cloth rather than a sponge or washcloth.  Ensure the area is properly dried by patting the towel, rather than rubbing it on the area.  Avoid soaps, talcs and creams in the area unless prescribed by the doctor (they may be able to precribe a barrier cream to help protect the skin).  Wearing loose fitting clothes and cotton underwear may help.

The hardest part is where it is, I feel I smell all the time no matter how often I shower and try to keep the area clean.  Plus not many people explain it in detail like they did my stoma.  As it’s my vaginal area it can make intimacy a bit uncomfortable (luckily my partner is very supportive) and examinations from doctors as the area can be tender

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy

Cushions and pillows may help when sitting down.  You can purchase memory foam or ring cushions, designed to relieve discomfort and pain.

The worst thing about having multiple fistulas is that no matter how many surgeries I have it will never go away.  I will never be rid of the pain I go through daily.  Some days and nights there is nothing I can do but lay there in pain and cry and wish they would put another seton in

Alannah, diagnosed with Crohns 2012, permanent ileostomy, ‘pelvis riddled with fistulas’ and runs a blog here

Dealing with fistulas can take its toll both mentally and physically.  Taking part in sport and swimming may be harder.  It can also affect your feelings about sex and intimacy.  Feeling depressed, frustrated and embarrassed are common.  Your IBD nurse may be the best person to talk to with the most experience of dealing with fistulas.  You may also find talking to a professional counsellor helps.  Online support groups can also be helpful, especially as you can connect with others in the same situation.

The worst thing is definitely having poo in your vagina… how do you discuss that with people?  I’ve been advised not to have a smear test because of it and although I am not sexually active if I were I’d be very concerned and embarrassed!  The abscess in my bum cheek drains and refills and when it’s full I can only lay down meaning I can’t go to work

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs

I feel very lucky to not suffer from any fistulas as the people I have spoken to have shown just how hard it is to deal with what they do.  There is help and advice out there for people suffering though so please don’t feel alone.  Anybody who would like to chat or pointing in the right direction as to where they can find some help, please feel free to contact me using the contact form on the home page.  A huge thankyou to the people who have shared their experiences with me for this piece.  You can also find out lots more great information over on the CCUK page here

 

Blog Series – Conditions Associated With IBD – Fatigue

Welcome to my new blog series which is all about conditions associated with IBD.  Many people see Crohns and Colitis as ‘pooing’ diseases, which is actually only part of the problem.  IBD can cause many other symptoms and conditions which may need treating with more medication, surgery, or may just have to be tolerated by the person suffering.  I have been very grateful to the many members of the IBD community who have shared their problems and experiences with me.  You will see interviews and quotes with these people throughout the posts to help show what effect these extra conditions and symptoms have on people.

Fatigue

fatigue2.jpg

The first symptom I have chosen to write about is fatigue.  Not only does IBD itself cause fatigue, but so do many other related IBD conditions including anaemia, anxiety and depression.  Regular blood tests should be carried out to check levels of nutrients including iron and B12, especially when you have an ileostomy, as they can drop easily and you may need supplements or infusions.

I have to have vitamins A, D, K and B12 checked every twelve months because the Colesevelam tablets can lower the vitamins in the body.  I have B12 injections every 12 weeks because after having my first ileostomy and having 80% of my colon removed I stopped producing B12

Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)

I find fatigue one of the most difficult symptoms of my disease to cope with.  Fatigue is not the same as tiredness.  When you have fatigue, you wake up still tired.  Taking a shower zaps you of all your energy.  Sometimes you sleep for hours and doze the day away, but it doesn’t seem to make a difference.  I desperately want to do more at times, but my body just won’t let me.

Fatigue affects me mostly through work and travel.  I had to quit a job I loved because the travelling was taking it out of me.  I’m now working close to home but they are not so understanding of my needing more toilet breaks or my fatigue or how sometimes I just can’t function.  I have no social life whatsoever because after a full days work I almost physically can’t move and at weekends I am still recovering

Tiffany, fistulating and severe Crohns diagnosed Dec 2017 and runs the blog Tiffany Nicole

Having an ostomy can also affect your sleep, something they don’t warn you about before surgery.  I struggled at first as the disturbed sleep was hard to get used to.  I generally need to empty my bag at least once during the night and often need to ‘burp’ my bag multiple times, as I seem to get terrible wind at night time!  This does get easier the longer you have your ileostomy and is something you do get a bit more used to, but some people still struggle immensely with this.

I don’t get a good night’s sleep because I wake after 5-6 hours to check my ileostomy bag doesn’t need emptying

Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)

Fatigue affects every area of your life, including work, social life and even the everyday tasks like shopping and cleaning you have to do.

Fatigue has been affecting me every day for the past month.  I can only just manage to go to work and do what I need to do

Suraksha, Crohns diagnosed 2007, permanent ileostomy (January 2016) and runs the blog Guts, Giggles and More

Things That Can Help

Unfortunately, there is no magic remedy for fatigue.  Rest helps, but often after a good night’s sleep you can still wake feeling exhausted.

I don’t know what could be done to help except sleep but that can be hard especially if I am at work.  I find it is one of the hardest symptoms to overcome

Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)

The NHS Choices website has some great self-help tips for fighting fatigue here.

They suggest

  • Eat more regularly, smaller and healthy meals and snacks
  • Exercise
  • Lose weight if overweight
  • Sleep well
  • Reduce stress
  • Talking therapies (counselling, CBT)
  • Cut out caffeine
  • Drink less alcohol
  • Drink more water

I try and rest as often as I can and do things little and often.  It’s important I don’t over do it as it set’s me back to the start and I find myself worse off than I originally was

Suraksha, Crohns diagnosed 2007, permanent ileostomy (January 2016) and runs the blog Guts, Giggles and More

Ensuring you have had up to date blood tests is also a good idea, so deficiencies and problems like an under-active thyroid can be ruled out if the fatigue is severe.

There isn’t much that helps I’m afraid.  Drinking plenty of water, listening to your body and getting checked for anaemia/vitamin deficiencies.  Taking iron supplements has helped a little

Tiffany, fistulating and severe Crohns diagnosed Dec 2017 and runs the blog Tiffany Nicole

Personally, I try and plan my weeks so I have plenty of rest time, especially when I have a busy or full on day coming up.  Daily, I have lists of jobs that need doing, and ones that I would like to get done.  Routine is very helpful.  If I push myself too hard, I know the next day I would really struggle to even get out of bed so it really is not worth it.  I find setting an alarm (NOT snoozing it) and getting out of bed at the same time every morning helps me feel more awake, as does doing a bit of exercise first thing.  If I let myself slouch on the sofa I find myself feeling worse, and after that initial feeling of grottiness goes away, keeping busy does tend to help.

fatigue1

A good night time routine is also key.  Switching off in this digital world is hard but really helps me unwind and get ready for sleep.  I love to read or will possibly watch something on Netflix in bed.  I have a ‘do not disturb’ setting on my phone which turns off my notifications which is easy to do and makes sure I am not distracted while winding down.  Lavender candles and pillow spray, a relaxing bath or shower and sometimes a nice pampering face mask also help me to relax.

As has been said, by me and the people I spoke to – fatigue is one of the most challenging symptoms that affects all aspects of your every day life and there is no easy fix.  Hopefully, you will have read some tips and tricks that you haven’t tried that will help here.  Please comment below with how you try and tackle fatigue, I would love to read some more ideas and share them with my readers

 

 

An Interview With Ali Jawad

If you watch The IBD & Ostomy Support Show you will know our August theme has been exercising with IBD or an ostomy.  This can be difficult for many reasons – fatigue, risk of hernia, malabsorption, deficiencies and many more.  There are many amazing people across the IBD community who are actively taking part and even competing in sports.

Ali Jawad is a double leg amputee and he also suffers from Crohns Disease.  He is a British Paralympian and competes in the -59kg class  in weightlifting.  I contacted him through his Facebook page and asked if it would possible to ask him some questions about his Crohns Disease and if and how it affects his career.  He very politely agreed and it was lovely to get the chance to talk to someone who has overcome so many hurdles in life to be so successful in a sport he loves.

1) What is your diagnosis? What age were you diagnosed? What were your initial symptoms? Are you on any medication or have you had any surgery for your Crohns?

I have Crohns disease. I was 19 years old at the time my symptoms started. Unfortunately, at my first Paralympic Games in 2008, I got sick the night before I competed and no one knew what was wrong with me. I had diarrhoea, vomiting, right side pain and a lot of sweating. It took 9 long months to diagnose me. I had surgery in 2010. I’ve been on prednisolone, pentasa, azathioprine and am currently on humira injections.

2) You were born without your legs from the mid thigh down. When you were younger were physios etc involved in your care? Were you given exercises, hydrotherapy etc?

I used to where prosthetic limbs, but I gave them up when I was 11. I used to have to attend physio to learn with different legs. I hated it. So I gave them up as I thought I’m far more independent without them. I love having no legs! I’ve never wanted legs ever.

3) What age were you when you started weightlifting and how did you get into it?

I was 16 years old when my friend forced me to go to the gym across the road. I got spotted by the owner.  He said I had massive potential if I chose to pursue powerlifting, not knowing at the time it would be  the start of a rollercoaster journey.

4) What is a typical day/week like for you with your training?

At my busiest I’ll be in the gym for 12-15 hours a week. But that’s without weekly physio, nutrition meetings, coach meetings and monitoring. Remember being an elite athlete is my whole life so my nutrition and the way I live my lifestyle is optimal for training.

5) How does a Crohns flare impact on this schedule?

My Crohns only impacts me when it flares.  Obviously as my diet has to be optimal, I lead a very strict life to try and reduce the symptoms as much as possible. But at the end of the day, it’s about fighting through whatever Crohns throws at you.

6) How do you amend your diet to coincide with training alongside having Crohns?

My diet is all about anti inflammatory foods to reduce inflammation in the body. Technically, Crohns disease is inflammation, so a diet that tackles this has to be implemented. Also as powerlifting is a body weight sport, I have to make sure I’m in body weight for competitions, so all my food is weighed. It takes a lot of meal prepping! However, this strict approach had to be done for me to be able to compete.

7) Do you take any supplements, vitamins etc to help with your Crohns?

As with any auto immune disease, absorbing micro nutrients is hard. So I take Vitamin D mainly. I try to take the natural approach through food as much as possible. You can’t rely on supplements, but I understand that most people can’t keep such a strict diet schedule like I can.

8) Do you feel like Crohns disease has held you back from achieving any of your goals? How do you motivate yourself to get back on top again if/when this happens?

When I first got diagnosed, I thought all my dreams were over. I was told by doctors no Crohns disease sufferer (not Steve Redgrave, as he has colitis) has ever medalled at any Summer Olympic or Paralympic Games. They told me to retire, as to compete with such a unpredictable condition against world class athletes would be a massive disadvantage. Luckily, I knew that if I put everything I can in place to reduce my symptoms, be mentally tough with whatever comes my way, I may have a shot. It also excited me that no one has ever won a medal, I thought how good would it feel if I was the first? Ironically, I wasn’t the first Crohns sufferer to medal at an Olympics…that honour goes to Kathleen Baker from the USA in swimming. She got her silver medal two weeks before me. The 2016 Olympic and Paralympic Games in Brazil were certainly historic for Crohns sufferers across the world with two Crohns athletes winning Olympic and Paralympic medals! However, no Crohns sufferer has won gold yet in an individual event at the Olympics/Paralympics so that is something to aim for.

9) How does it feel winning a gold medal? (My 8 year old son watched the Rio Paralympics with me and thought you were amazing and should have got gold, especially when I told him you had Crohns too!)

I won silver in Rio…however after everything I’ve been through it felt like a gold. I’ve won World and European golds in the past, but this meant more to me as it has always been my dream to get a Paralympic medal since I was 6. Sometimes I look at the medal, and I’m still in shock that I managed it after the struggles I’ve been through. It was a proud moment for me.

10) What advice would you give anyone with IBD looking to get into exercise?

My best advice is that everyone with IBD knows not to take good health for granted. Flare up, symptoms, and daily life with such a condition is hard. So why not live optimally to reduce it? Optimal dieting and exercise is so important, I can’t stress how much it helps, even though the discipline and commitment to it is big. But I promise it’s worth the good health. No matter what aims you have in life…don’t let Crohns or Colitis limit your potential. You can achieve anything you want, don’t use the condition as a excuse.

Unfortunately, Ali is currently in the middle of a huge flare so isn’t competing.  He is looking to treat his flare and make his comeback next year and I hope everyone will be cheering him on when he does.  To stick to an athlete’s training and eating regime is tough for anyone, never mind when you suffer from IBD as well.  Thankyou so much to Ali for taking the time to talk to me and share his story.  I hope it helps inspire people to realise that so many goals are not out of reach, just because you suffer from IBD.

Colitis To Ostomy