What is it like to have Crohn’s Disease?

by Brandee · 8 comments

This is one of the top 5 questions I am asked over and over again. It is also one of the top three search terms that show up for this blog. If you demand it, I guess I can take a shot at supplying you with an answer. However, these answers are based upon my experiences with Crohn’s disease. I discovered long ago that all cases of Crohn’s are not the same by a long shot. So, with that nestled in your mind… here goes.

Different characteristics fuse together to form the totality of any chronic illness; Crohn’s Disease is no exception. It’s a lot to handle because the effects are all daisy-chained together. Meaning that various effects of a disease join together forming a continuous chain of cause and effect.

This is my daisy-chain:
CROHN’S=Physical Affect=Mental Affect=Stress Affect=Relationships Affect

<> How does it physically feel to have Crohn’s Disease?

For me, ‘flares’, as they are called in the medical field, can start out feeling similar to an exceedingly bad case of menstrual cramps with abdomen pain and back pain. However, they can quickly get out of control and make you feel as if you are giving birth to a 2 ton elephant. Additionally, nausea, horrendous fatigue, rashes and an intermittent low grade fever, which, for me, would only appear outside of a flare and never during a flare. My symptoms always appeared within a few hours of eating. Before my diagnosis and subsequent bowel resection, as my Crohn’s disease worsened, the symptoms worsened until they became so unbearable I sought medical attention.

What a lot of people do not seem to absorb is Crohn’s Disease is a Progressive Disease. Once you have it- you have it for life. Crohn’s can go into remission- that is where I am in this moment. But, eventually it will come back. You never know when or where it will strike next. Crohn’s can present from your throat to your anus and anywhere in-between within the digestive tract. In my case, the small intestine was heavily involved. The Crohn’s was dreadfully close to my colon- I know that chances are it may hit my colon next time. But, I don’t fear it. It may never happen. I liken my familiarity with Crohn’s to that of a mother; her first child and she fears over every issue! By the time her second child arrives, she has the experience under her belt to not sweat the small things and to not worry about that which has not yet happened.

<> My Symptom Summery

  • Skin Tags
  • Mild to severe fatigue
  • Intolerance to all solid foods
  • Lower to mid-line back pain
  • Moderate to severe diarrhea
  • Intermittent low grade fevers
  • Severe weight loss and the inability to eat; tolerating only liquids
  • Cramping to severe pain in the abdomen- above and/or below the navel
  • Intermittent and/or sustained rashes that itch, welt and may form clusters
  • Upset stomach to moderate nausea to significant nausea leading to vomiting
  • Small white spots or red mole-like bumps on the arms, legs, face or skin in general

Other popular questions I will address in upcoming posts:

How does Crohn’s Disease affect your relationships?
What do you do during a flare up?
What is it like recovering from small bowel resection?
Does remission from Crohn’s Disease mean you are symptom free?

Related Posts:

Reminder: This web site does not give medical advice. All content is based upon personal experiences and links to news reports. If you feel you may have any health condition, I urge you to seek immediate medical attention. Please use this site responsibly.

{ 2 trackbacks }

What are the mental affects of Crohn’s Disease? | Life After Crohn's
May 28, 2009 at 5:01 PM
How does stress affect your Crohn’s Disease? | Life After Crohn's
July 29, 2009 at 11:01 AM


avatar ellie May 24, 2009 at 4:28 PM

you have a lot of the symptoms i have – so i know how it feels (yucky). you are one strong lady, though – so i know you can handle it – and if you can’t you know who to call :-)

avatar Jaime May 24, 2009 at 5:13 PM

I promise to use this site responsibly!! But in a seriousness, thanks for bringing so much awareness to Crohn’s Disease. You have inspired me to try and do the same!

avatar Brandee May 24, 2009 at 5:27 PM

Thank you, Ellie. But, YOU are the strong one. Thinking of you is one way I keep self pity away from my door.

avatar Brandee May 24, 2009 at 5:28 PM

Jaime, you do so much to bring awareness all on your own. I am proud of you and the strides you and your family make.

avatar Debbie June 3, 2009 at 6:47 AM

I have had Crohns Disease since 1994 and have had 6 major surgeries since 2001. They removed my entire large intestine…except for my rectum which wasnt disease and about a foot of small intestine over the years. The surgery was actually the best thing for me to have had tho of course they didnt realise how bad it was until they went in! I have these red bumps under my arms and on my chest and I’m not sure if its Crohns or what but they dont really itch but are very red and ugly. I have been under alot of stress as I just got married 2 weeks ago and am having a reception in 3 days. These appeared about 5 days ago and havent changed…very strange. Anyways….Im past the point of meds except for pain for arthritis…Fibro…etc…all the lovely things that come with this disease….But anyways I saw this thread and since Ive had this a long time and went through everything they could do I thought if anyone had any questions or just wanted to talk or anything that Im here also :) Just remember your LIVING with a disease…not dying…tho I know how bad it can get believe me ! Take care of yourselves and If I can help anyone please dont hesitate to ask.

Debbie :)

avatar Gary June 15, 2009 at 8:45 PM

You know so many interesting information. You might be very wise. I like such people. Don’t top writing.

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