What Would I Tell A Newly Diagnosed Crohns Fighter?

What Would I Tell A Newly Diagnosed Crohns Fighter? Have you been diagnosed with Crohn’s disease? What would you expect to be told about the illness you’ve just been diagnosed with? In the face of it being Crohns & Colitis week, I have decided to say what I didn’t know 14 years ago when I was first diagnosed with the invisible “poop” illness.

What Would I Tell A Newly Diagnosed CrohnsFighter?

With hindsight, I now have a better understanding of what my illness entails. Crohn’s disease along with being a “poop” illness is also an autoimmune disease. There are 5 types of Crohn’s and I have listed them below.

  • Ileocolitis: Ileocolitis is the most common type of Crohn’s disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhoea, and cramping or pain in the middle or lower right part of the abdomen.
  • Ileitis: This type of Crohn’s disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.
  • Gastroduodenal Crohn’s disease: This form of Crohn’s disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn’s disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.
  • Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhoea, and abdominal pain that can become intense.
  • Crohn’s (granulomatous) colitis: This form of Crohn’s disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhoea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.

I have Ileocolitis & Ileitis form of Crohn’s, I have had over the last 14 years fistulas & abscesses which make their way through my abdomen from the scar tissue and have had a few of these scrapped out down in theatre and my tummy bears the hallmarks of these scars.It has not been easy but I have managed to continue with life, work and being a mother since diagnosis.

These are the other symptoms caused by Crohn’s

  • The bowels swell, thicken, or form scar tissue, leading to blockage of the passageway inside the bowel
  • Develop ulcers that can involve the deep layers of the bowel wall
  • Lose its ability to absorb nutrients from digested foods, a condition called malabsorption
  • Develop abnormal passageways known as fistulas from one part of the bowel to another part of the bowel, or from the bowel to nearby tissues such as the bladder or vagina

With Hindsight

With hindsight and now 14 years worth of fighting my own body on a daily basis I would now tell newly diagnosed Crohn’s Fighters and myself that regardless of how this illness behaves you can have a normal life. Things that you have to contend with are minor and you should just take it step by step.

Things I wish I had been told

 

  • Acceptance –  Accepting that life will change is a journey within itself. Acceptance will take time but once you have accepted this you will feel better and stronger about facing what this illness has to throw at you
  • Relationships – Those around you struggle more to accept this than you do. My top tips would be to always be open and honest and explain things to them so they will understand what you are going through
  • Take each day as it comes – I can honestly say take each day as it comes. Don’t look 10 years into the future. Just take it slowly and with insight and preparation you can beat this
  • You are stronger than you think – You may shake your head now but you will as you continue your journey through this illness, you gain a resilience and strength you didn’t know you had
  • Life spent on and off of medication – to tackle this illness you need to have trial and error with medication, once you have found the right collection of medication the symptoms lessen and life continues as normal
  • Frequent hospital appointments– during the height of your flare then hospital appointments will be a regular thing, these do lessen once your Crohn’s is under control
  • Frequent colonoscopies, endoscopies, ct scans, MRI’s & blood tests – These are a necessity to establish how bad the flare is and to get you back to full health asap
  • Frequent admissions into hospital- this is when you are at your worst with the Crohn’s, hospital is a necessary evil if the medication is not working
  • The illness “does not” define you or your life- You should never allow having this to define you. You should always try and define it so it doesn’t take control
  • Remission – Remission with Crohn’s is bleeding fantastic. You feel free and sometimes you can be medication free should your consultant agree and takes you off of all medication
  • Side effects of the medication- This is the one I hate, you get rid of some symptoms and gain another 3 due to the medication. Should you ever have anything like this then please talk to your consultant and get the medication changed or stopped.

I remember the daze I was in when I was originally diagnosed. The quote of ” I’m sorry” from my consultant but you have Crohn’s disease, back then the online facilities were not as freely available as they are now.

There is now such a great wealth of support groups to help.Should you have questions or wish to ask about a medication or to share your journey and story with others like you. Medical jargon and Wikipedia will only help so much but those versions are scary and daunting for the newly diagnosed. The support groups are less daunting so please utilise these to gain help and advice.

Summary

So for those of you that read this and backtrack through my older posts, yes I have a stoma and Crohn’s disease, but this does not necessarily mean that it would happen to you. I can honestly say that this illness has made me stronger and made me appreciate life in its entirety. I’m a crohnie and an ostomate and I’m proud of that, it means I’m still here and fighting this illness that thinks it can get the better of me. For those of you reading this you are stronger than you think, more capable than you realised and you will live a full life regardless of this devious illness.

Please feel free to leave any comments.

 

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