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My Midlife Struggle With Crohn’s Disease & How I’m Conquering It

Imagine if you will!

One day you’re a fully fit and active forty-something, and the next you are reduced to the best achievement of your day being making it to the local shop, buying some soup, cooking it and eating it! It all began one Sunday night last November. I went to bed feeling fine. Next I was awake in the middle of the night, vomiting and sat on the toilet.

I had to take the week off work and went back the following week, really not feeling very well. I had unbearable stomach pains, unable to sleep and very fatigued. My company sent me to their GP, who referred me to a gastroenterologist. Fortunately, I am lucky to have private medical insurance, so was able to get an appointment the following week.

The consultant began by asking me lots of questions and weighing me. I had previously weighed 83kg but had lost 6kg. He felt I had Crohn’s disease, but wanted to carry out various tests. Over the following months, I had:

  1. Many blood tests.
  2. Stool tests.
  3. MRI scans.
  4. CT Scans.
  5. Ultrasound scans.
  6. Colonoscopy.
  7. Two different types of endoscopy.

After my first endoscopy, it was revealed I have Barrett’s Oesophagus. This is where the cells in the esophagus grow abnormally. It can lead to cancer, in a small number of people.

The final test was a capsule endoscopy in late April. This involves swallowing a large pill, with a camera. This takes hundreds of images, that are then sent to a portable monitor, which are then reviewed.

What did the test show?

A couple of weeks later, I then received a call to see the consultant that evening. Naturally, I fretted for the hours before. The consultant informed that I did indeed have Crohn’s! Crohn’s is a long-term condition, that causes inflammation of the lining of the digestive system.

A relief you might think. In some ways yes, in others very frustrating.

I queried that if it was felt that was the diagnosis in November and the proximity of pain, why was the capsule endoscopy not done firstly! The response I received was very disappointing.

You see, for the six or so months that all these tests were done, and nothing is found, you go mad with worry, and assume the worse.

You spend a lot of time on your own. Time to fret! Time to think worse case scenario! It affects your mental state, no end.

In this whole process, I had to visit my GP regularly. I have to say, they have been very good and supportive, as have my company. My GP was the one who persisted with having more and more tests done, until the final diagnosis was reached.

Off my own back, I had three sessions with a dietician, to help me come up with diet plan and keep food diaries. You learn what foods you can and can’t eat, by trial and error. Foods such as garlic, chilli and tomato cause the Crohn’s to flare up and bad nighttime pain. I have pretty much given up alcohol. Thankfully I don’t smoke, which is apparently bad for sufferers.

Eventually, my GP and I decided we should change consultants. Neither of us were happy with previous consultant.

Time to switch consultants…

Within the week, I was seeing the new consultant, who advised he would have diagnosed me after my colonoscopy, which was one of the first procedures I’d had, back in December!

My new consultant and I came up with a course of treatments, including infusions of a drug called Infliximab, a biological drug. I have now had three of these and await to see if more are required.

I joined Crohn’s and Colitis UK. They have a lot of useful information and support. This helped me to decide on the infusions of Infliximab.

In addition to this, I decided to pursue some alternative therapies and treatments to help me.

Firstly, some reflexology, which showed my digestive system to be “shot to pieces!” When she touched certain parts of my feet, the pain was unbearable!

The reflexologist advised me to add papaya, aloe Vera juice and pro/probiotics to my diet. This would help my digestive system to rebalance, with all the drugs I have taken. In addition she recommended yoga.

Giving Yoga A Shot

Next step, try yoga. I was sceptical, but as I hadn’t really exercised for over seven months, I was willing to give anything a go. I found it both enjoyable and invigorating. A real eureka moment.

I continue with the reflexology and yoga.

I mentioned previously, that my mental state was affected hugely. Speaking to my employer, they offered some counselling sessions. Again something else I was skeptical about, but was referred to a counsellor called Nick. Having had six sessions with him, I realise now how much I was affected and how low I was. I’m still not back to full fighting strength, but I am well on the way.

My physical state is improving as well. I lost a total of 9kg (1 ½ stone), but have now regained 3kg!

The infusions are also making a difference and I await to see if more are required.

My personal life has suffered. I was in a long-term relationship, but that recently ended. Without going into too much detail, when you go through telling times, you really find out a person’s true colours!

The lessons to be learnt:

  1. Never be afraid to challenge the medical profession.
  2. Try and stay as positive as you can.
  3. Talk to others, don’t bottle it up!
  4. Join support groups or online organisations.
  5. Don’t be afraid to ask questions!

There’s a saying, “What doesn’t kill you, makes you stronger!” And this life experience has certainly proven that!

To find out more about Crohn’s disease visit: https://www.crohnsandcolitis.org.uk/

By Paul Baynham

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2017-10-13T10:06:09+00:00