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Tuesday, 19 May 2020

Loop Ileostomy Surgery, Six Year Update & World IBD Day // My IBD Journey

I've known for a while, that this blog post could be coming and now it's here I almost feel like I can't quite put everything into words but I'll try my best.

To Recap

In 2014 after 18 months of being told I had IBS, I was rightfully diagnosed with a form of IBD called Ulcerative Colitis. Since then I've had a rollercoaster journey with trying to stay in remission. You can click here to see all the posts I've written over the past six years.

The Three Year Fight

In 2016, I was in a confusion of being told I had a very mild case of colitis to a moderate / severe case. I was also being told that it was only 10cm of my colon that wasn't responding to the previous medication combination I was taking. This is why my (at the time) consultant decided to put me on Humira, a drug used for moderate to severe cases.
I started to research as I was being pushed around the department, seeing different nurses and consultants and I wasn't getting a straight answer.
In 2017, I asked about speaking to a surgeon. With the problematic 10cm I wanted to discuss the pros and cons of a resection. This is where the three year fight started.
I was told by every consultant and nurse I saw that "surgery wasn't needed", "I wasn't at the right stage for surgery" or "It's all in my head" and I constantly felt like I was stupid for asking for help . But over this time the colitis got worse. I had one of my worst flare ups that lasted 9 months, was given the highest dosages of medication on my plan and was then diagnosed with proximal constipation.
Despite this I was still researching, reading new studies, journals and reaching out to other people with IBD.

Why I Fought For Surgery

I had no quality of life. 

I was in a lot of pain. 

I had no control over my bowels.

With all the research I had done, it seemed that surgery was going to be the only option. I had researched other medications, some that were still in testing stages and some that I was too hesitant to go onto. Let me explain... 
After my flare up, all the medication I was on was keeping my colitis "under control" but causing proximal constipation and other side effects. This meant living on high doses of laxatives.
So, I went from having a disease that left me with no control over my bowels, to taking a lot of medicine that caused constipation, to then taking laxatives and living with no control over my bowels. It was a vicious cycle that to everyone else didn't make sense. But my tests came back within ranges to their satisfaction so I was still continually passed around the department. Which is why I didn't want to go onto even stronger medication(s).

At this point I'd actually changed from wanting to speak about a resection to having a bag because I was at my lowest and was losing the will to keep fighting,
Enough was enough, so like I mentioned in last years update, I went to my GP to ask to see a surgeon. That didn't happen as I was redirected to see my previous consultant. I never had the best relationship with her and didn't see her all that much and come the day of the appointment I actually saw the attending registrar. 
In my eyes, she wasn't nice about it all either. I had a lecture about how bad living with a bag was and how they smell, leak and are not good for anyone. I was gobsmacked, it did take a lot for me not to get completely snarky with her. There are always pros and cons but she had never seen me before, had barely had time to read through my notes and didn't even know the reason for the appointment. What if I really needed a bag? What if it was my last option? Colostomy, Ileostomy and Urostomy bags save lives. No one, whether sick or well, wakes up and thinks "I want to undergo risky surgery and have a bag of poo or wee attached to me for the rest of my life". 
My mother and I just pushed for her to put me through to a surgeon.

Meeting My New Consultant

I can't put names here for obvious reasons but I really wish I could. 
In all honesty I didn't see any point in speaking to him as I wanted to speak to a surgeon. I already had a consultant who didn't listen to me why would I need another? Looking back he probably got a lot of attitude with my tears on our first meeting. 
I went in sat down and told him I wanted a bag. 
He reiterated that surgery was the absolute last option and that we should look at everything else and he couldn't give me any information on different surgeries as he wasn't a surgeon. But he listened to me. He could see that the Colitis had complete control over my life and that I was severely depressed.
He of course had to draw his own conclusion, I was sent for another colonoscopy, for other types of tests and it wasn't done in a way that made me feel like I was being fobbed off again. He genuinely wanted to help me and make sure that everything that needed to be done before seeing a surgeon was. I walked out of that appointment guaranteed I'd speak to a surgeon and it gave me the biggest surge of hope.

Meeting The Surgeon

It did take a while to meet my surgeon. About 5 months. This is because the surgeon my consultant put me in contact with is one of the best and at my hospital and is a specialist for cancer patients having bowel surgery. On the day of meeting my surgeon I went in with all the confidence in the world, this man was going to say yes to surgery. Instead, I ended up breaking down in tears as someone else who wasn't him came to go through my appointment. My surgeon had been called into an emergency surgery which of course couldn't be helped but for all of 10 minutes I felt deflated. Yes, you read that right, 10 minutes. The surgeon who had earlier been called into emergency surgery had finished and rushed down to try and catch me, not knowing my appointment was delayed. I think I cried a little harder at that. Here was my chance, I had another health professional willing to listen and not just dismiss me by saying it was "all in my head".
After going through all the research I'd done and wanted to discuss and listening to what options he thought would be best for me it was decided I'd have loop ileostomy surgery. My parents being with me had their own questions but as soon as he said yes I was grinning like a cheshire cat.

What Is Loop Ileostomy Surgery

I got this information from the NHS website. It's important information like this is taken from a medical source. That way, there is no misinterpretation of how the surgery is performed.

"To form a loop ileostomy, a loop of small intestine is pulled out through a cut in your abdomen.
This section of intestine if then opened up and stitched to the skin to form a stoma. The colon and rectum after left in place.
In these cases, the stoma will have 2 openings, although they’ll be close together and you may not be able to see both.
One of the openings is connected to the functioning part of your bowel. This is where waste products leave your body after the operation.
The other opening is connected to the “inactive” part of your bowel that leads down to your rectum.
The loop ileostomy is usually temporary and may be revered during a second operation at a later date."

I will still keep my colon and will still have Ulcerative Colitis. By making it "inactive" it will give me the better quality of life I'm after whilst giving everything a rest from all the laxatives.

Surgery Day

Almost 4 months later it was surgery day. 
I'd had a visit before from my stoma nurse to go through what the surgery would entail, the recovery, the different types of bags, the diet changes and just general life with a bag. 
I was excited for this. I wasn't scared of the surgery, I had a brilliant top surgeon performing it, the only thing I was scared of was having a cannula and a catheter! I do really hate things that pierce the skin or sit in the skin (why I have no piercings!) and I'd never had a catheter before so was a little anxious. After being reassured by the surgeon that I wouldn't actually need a catheter I was then reassured by the most loveliest of anesthesiologists. He said he could put numbing cream on the site, freeze it or give me gas and air. I asked for all the above and he agreed!
I remember walking down the hall to the room before the operating theatre, lying on a hospital bed / gurney being given gas and air and not realising he had frozen the site on my hand and got the cannula in. I always go into everything I can with humour and the anesthesiologist and his team were very much on my wavelength. I had mentioned I'd had jaw surgery before and when I was asked to count back from 10 I'd gotten to 7 before going under and was determined to get to 6. When I started to count back as I got to 6 they all counted 6 with me and that was the last thing I remembered. 


I woke up in recovery a few hours later in a lot of pain. My stomach felt like it was on fire. I had morphine pumped into me which made me doze off before I was kind of waking up on the ward.
I was very tired after surgery which felt strange. My brain was alert and wanting to interact but my body was telling me to sleep. I remember being woken a few times to be told to drink and to try and eat something. It wasn't until after 7pm that I managed to sit up and eat a little. 
My surgery only took less that two hours and luckily was laparoscopic surgery so instead of being cut open I had 4 smaller incisions. One which was replaced by the stoma, one on the opposite side of the stoma, one through my belly button and one where women would usually have a c-section scar.
The incision through my belly button and underneath were the ones that ached the most as they are along natural bend lines. 
I managed to get up walking the day after surgery, my cousin came to visit and we went down to the cafe and had lunch. The day after that when my mum came to visit I was doing well but I was very moody. The one thing frustrating about hospital stays is the very little sleep. The ward women were lovely, but some snored, some liked their tv on through the night and with the nurses in and out for checks every few hours I really just wanted to get home. That day my wish was granted,
Only two days post op I was able, ready and very willing to get back home to carry on with my recovery. 

13 weeks post op & Covid-19

Over the last few months, my recovery has gone well. Before you leave the hospital, you have to be able to solely change the ileostomy bag well. The stoma nurse came out to visit me again post op and commented on how well I've done, as some do not always adapt so well to the changes. I did have a benefit in knowing that it was coming. I'd done the research and had gotten through all the worries and anxiety. Most of the time, stoma surgery in done in an emergency and those people do not get much if any time to come to terms with it, let alone getting a choice.
Before Covid-19 I was starting to get out and about more. I was able to see family, go shopping, out in the car and even walk to my corner shop and back all without anxiety, panic attacks, accidents and pain. As lock down came in it was hard going back to being housebound but I know once everything is over, I'll have my life back.
For me, the pros of having a bag outweigh the cons. I've been very lucky with my stoma; only having one leak, introducing foods back into my diet without any real issues and seeing a huge improvement in my mental health. Don't get me wrong there are still frustrating days where it decides to be active during a bag change, it starts itching or I have to get up in the night to empty but I am better off than I was before.

Why I Didn't Tell Many People

This was something I didn't talk about with many people. Having Ulcerative Colitis I've come to see who is really there for me. I had those who stopped including me or because something better came along, stopped visiting me. 
I didn't want fake-ness from people who could now see me as an option to kill their time. As Marilyn Monroe says:

“...But if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.”

Why Surgery Isn't For Everyone

I wanted to put a small disclaimer here by saying that surgery is not for everyone. This is my story and everyone's is different. It is not a fix it all solution. 

World IBD Day

Today is World IBD Day and I wanted to share my surgery story to highlight a small part of what it's like living with Ulcerative Colitis or Crohn's Disease. 
I also wanted to share this "10 things you need to know about Ulcerative Colitis" article from the Crohn's & Colitis website:
  • Ulcerative Colitis (UC) is one of the two main forms of Inflammatory Bowel Disease (IBD). The other main form of IBD is a condition known as Crohn’s Disease.
  • It is estimated that there are at least 146,000 living in the UK with UC which means 1 in every 420 people have been diagnosed with the condition.
  • Ulcerative Colitis causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel).  The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon.
  • Symptoms may range from mild to severe and will vary from person to person. The main symptoms include; diarrhea often with blood, severe pain, anaemia, extreme fatigue and sometimes dramatic weight loss.
  • There is no known cure.
  • Possible causes – Although there has been a lot of research, we still don’t really know what causes Ulcerative Colitis.  Researchers now believe that UC is caused by a combination of factors: your genes, environment and an abnormal reaction of the immune system to bacteria in the gut.
  • Treatments – There is a wide range of drugs such as immunosuppressants used to treat the inflammation and sometimes surgery is needed when these treatments are proving ineffective. Surgery may be needed to remove the whole or part of the colon which may result in a stoma.
  • Other sports personalities diagnosed with Ulcerative Colitis include five-time Olympic gold medallist Sir Steve Redgrave, former England Rugby Captain Lewis Moody and International Footballers; Darren Fletcher and Russell Martin.
  • Crohn's and Colitis UK is the leading national charity and membership organisation that supports anyone affected by IBD. We provide high quality patient information in the form of information sheets and booklets as well as information and support phone lines.
  • Crohn's and Colitis UK have been leading the drive to increase knowledge of the causes and best treatments of Crohn’s and Colitis for more than 30 years.  As a charity we have funded research that has led to vital discoveries about the conditions – and continues to do so. But we don’t stop there, our aim is to improve lives right now and, ultimately, to find a cure.
It takes guts to start a conversation, Be kind.

As always, thanks for reading...

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