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What Does IBD mean for you?

DJW

Forum Monitor
There is another thread on the forum I want to build off.

General lack of knowledge in the IBD community.
http://www.crohnsforum.com/showthread.php?t=64857

The title is self explanatory.

Nogutsnoglory made a very good point about our advocates making it sound like IBS.

I want to start this thread to see what IBD means to you. Perhaps we can educate our advocates in the way to spread the truth from the IBD suffers point of view..

So, IBD means for me:

Obstruction after obstruction with many hospital visits with off the chart pain.
 
I was diagnosed with Crohn's Disease after coming close to dying of pulmonary embolisms. The doctors say I'm lucky to be alive. Patients with ulcerative colitis or Crohn's disease are at increased risk of Deep Vein Thrombosis because of increased fibrinogen, factor VIII and platelet activity and depressed levels of antithrombin III and alpha-2-macroglobulin.
So far I've spent 5 days in ICU, had 5 blood transfusions, and spent almost 6 months in hospital in the last four years. I had one surgery for an abscess. I have been in serious pain that required morphine. I have developed osteopenia. I had severe diarrhea for about 3 years, which has now let up.
This disease is also a life changer. I had to give up my stressful, hectic job I loved. I don't go out much and turn down invitations that involve food or alcohol.
I will never marry again, because I would lose my assistance for drugs.
I'm not the same person I was before I became ill.
 
I don't think people quite realize how all encompassing these diseases are. For me it means more than just having to be close by a bathroom. It means being in pain a good portion of the time, it means not having the energy to do everyday things, it means thinking about everything I eat and how it will affect me later, it means asking about my life choices now, if they are even possible for me to use them later and it means making concessions.

This disease changes your life. You can embrace it and make different choices so you can still be happy. My life has been derailed in many ways by having Crohn's disease. I will not let this disease control my life or make my choices for me. But, I will have to change the way I live. That is what it means to me.
 
Fear for the future. Not being able to be spontaneous. Like rubberduckie said, changing the way you live your life. Losing the life I loved and now just trying to get on with things as best I can. Not being able to do silly things that most people would take for granted, like going out for pizza and beers, going to festivals etc. And that's without even getting into the pain, extreme tiredness and brain fog!

Tuff, do you mind if I ask if you work now? You said you had to give up your stressful job and that's something I'm having to give consideration to.
 

nogutsnoglory

Moderator
IBD means endless surgeries, living with a shit bag, strong medical cocktails, nonstop anxiety about making plans, what I can safely eat, bathroom access and whether I'll be in pain or severe fatigue. IBD means to me that my life is not in my hands and I am the puppet of a disease that dictates my existence and never let's me forget it's there to wreak havoc on my health, my professional, family and social life.
 

afidz

Super Moderator
IBD to me means a lifetime of complications and complications from complications. I am 25 years old and have to tell my boyfriend, the man I intend on marrying sooner than later, that I can't have his kids because my body will never be strong enough to survive a pregnancy. Add in the pain, depression, anxiety and stress that being in public causes, insomnia and extreme fatigue, let me tell you, I am not exactly winning this war.
 
Can a Parent of an IBD'er join in?:hug:

IBD means to me as a mom,
Just trying to keep my girl's intestines intact through High School.:(
 
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means trying to re-assure my 10 and 14 year olds that Mom is fine, just in a "little" pain. They worry so and I try not to let on about symptoms, but sometimes it is hard to hide a stab of pain...
 
Daisy I quit last spring, but I already had a new job lined up before I left. It was the right decision. I'm currently "between jobs", but hoping to get back to work soon.
 
Having little desire and more fear to eat as you know it will cause pain, cramping and d, and that's a safe food. Non safe food lead to agony and wanting to curl up and die.
 
Location
UK
IBD means to me: constant planning and thinking. Having to plan what to eat & drink. Having to think about toilets. Having to think about what to wear incase its too hot or if i bloat. Generally being somebody who i no longer want to be. I miss being spontaneous. Its a disease that not only affects you physically but also emotionally. Not even mentioning the constant pain and tiredness.
 
IBD means to me: no longer being comfortable in my own body, constantly worrying about the future in case, God forbid, I end up in the hospital again and can't work, always being tired, not feeling normal, being isolated, wondering if I try a new food if I'm going to regret it for the next 2 days, needing to know where every bathroom is, regretting a work out when I used to be a gym rat. I now have to be reacquainted with my own body every day and figure out a new 'normal' for me. I miss my old, constantly busy life.
 
It means not being able to plan. Worrying if my safe foods won't be safe the next time I eat them. Anxiety over which restaraunt to eat in and if their menu will have something I can eat. Hoping that the next drug I try will work. Wondering if my doctors really believe me . Praying that God will help me through it all.
 
I have been told I have IBS... which for me means IBD in waiting. My mom died (80+ y.o.) this year from colon cancer that spread to her liver. She had IBD. So IBD is serious business to me. (I have a brother with Crohn's. He heard about using flax seed to lower inflammation. He uses way more than the suggested 2T per day... <maybe 6 rounded T??> which he grinds up in a small coffee grinder and adds to his cereal or coffee daily. It works for him... his specialist was skeptical at first but is now on board with it-- sure beats the 16 pills he was taking daily).

My mom had intermittent bouts of c and d and I think just thought it was normal. I now see constipation as a toxic condition to be avoided. I take Cape Aloe (NOT related to aloe vera!) which I got from a chiropractor. At first I had to take 2 pills per day. Now down to 1 every other day. I also take 500mg Niacin (Vit B3... you can safely take up to 3,000mg/day if average weight) which I guess helps with inflammation? I drink more water daily (roughly 50oz or more) as I believe my mom was chronically dehydrated. Flushing toxins from the body is always good. I try to eat more raw foods with fiber and eat more green vegetables than I used to. (Which... I never used to eat... so eating more than 0 isn't too burdensome).

IBD means having to take precautions so I don't die early. So far, diet change is helping...eventually it might not, but I will ride this train to the end of its helpfulness. Pharmaceuticals will be used when absolutely needed...but not until then. Good luck to all!
 

my little penguin

Moderator
Staff member
Make sure to get imaging (MRE and capsule endoscopy)
Traditional colonoscopy leaves a lot of the intestine out of the equation.
Some folks only have damage seen on pill cams
Or MRE
 
I live pretty rural now. Pretty sure the options are quite limited and with my work's health insurance I am not sure what imaging will be paid for ... realistically I will be limited to that, barring the death of an unbeknownst to me rich uncle!

Thanks for the info.. if my employment or health insurance changes I may be able to use that info.
 

Lynda Lynda

Member
But how can your treat an illness if you are not properly diagnosed ? Over many years now I have had a lower GI, flexible sigmoidoscopy, endoscopies, colonoscopies, CT scans, blood draws, stool sample tests. I hope you can find a good Gastroenterologist soon and get the testing you need. Take Care. 🌻
 
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