Living with IBD; The Sick Truth

[Ken]

First, a disclaimer. This topic can be rather difficult. Both to read about and to talk about. Words like anus, diarrhea, and vomit could very well be used. In fact, I will be using the words diarrhea and anus in this very post to help describe some conditions. It's the only way to describe some symptoms while following the AUP. Which I hope everybody replying to this thread will adhere to. I sincerely hope that immature responses will not find their way into this thread. My Intentions of this thread is to raise awareness and allow general discussions for those who suffer from IBD or anybody willing to take this topic seriously. IE, fart and poop jokes are not welcome. This is an extremely sensitive topic for some, myself included. I can say that I have been very nervous and embarrassed to even think about starting this discussion. Hell, my hands are shaking just typing this out. This is life for some. It's not a joke. Just a friendly heads up. Well, with that being said.


With World IBD Day being recognized on May 19th, I figured it was a good time to start a discussion about life with IBD. I know that I can't be the only one that suffers from one of these terrible ailments. After all, 5 million people worldwide suffer from just Crohn's.

So, what is IBD?

Inflammatory Bowel Diseases (IBD) is a broad term that describes conditions with chronic or recurring immune response and inflammation of the gastrointestinal tract. The two most common inflammatory bowel diseases are ulcerative colitis and Crohn's disease.

For those that aren't familiar with Crohn's disease and ulcerative colitis, here are some basic points.

Crohn’s disease and ulcerative colitis are the two major types of inflammatory bowel disease. They’re part of a group of disorders in which the small and large intestines become inflamed. The exact cause is a mystery, but scientists have discovered some clues as to what may cause Crohn’s and colitis. The symptoms of the diseases can vary in each individual, but some symptoms are more common than others.

Symptoms? Well, that's where it gets embarrassing. As I hate to admit to allot of these, if not all of these.

• Abdominal cramps and pain
• Diarrhea that may be bloody
• Severe urgency to have a bowel movement
• Fever
• Weight loss
• Loss of appetite
• Iron deficiency and anemia due to blood loss
• Bowel movements become looser and more urgent
• Fistulae (abnormal passages) and perianal disease, disease in the tissue around the anus; these conditions are more common in Crohn’s than in ulcerative colitis
• Toxic megacolon, which is an extreme dilation of the colon that is life-threatening; this is associated more with ulcerative colitis than Crohn's.
• Lethargy

See, not stuff that a person is usually comfortable talking about. But wait, there's more. You see, IBD can affect more than just your stomach.

IBD, particularly ulcerative colitis, also increases the risk of colon cancer. IBD can also affect other organs; for example, someone with IBD may *(will) have arthritis, skin conditions, inflammation of the eye, liver and kidney disorders, or bone loss. Of all the complications outside the intestines, arthritis is the most common. Joint, eye, and skin complications often occur together.

Fun stuff. But what else do you expect from an auto-immune disease?

So who is at risk?

Men and Women are equally likely to be affected, and while the disease can occur at any age, Crohn's is more prevalent among adolescents and young adults between the ages of 15 and 35.

But what causes IBD?

Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s. Studies have shown that 5% to 20% of affected individuals have a first – degree relative (parents, child, or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have IBD. The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.

The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.

Then they are symptoms that aren't covered by the medical websites. Notably, depression and bitterness. Can you imagine not being able to eat when and what you want? How about being in so much pain that you can't move? Think that doesn't affect relationships? During a flare up, I can't go out to eat with the family. Or to the park. Or grocery shopping. In fact, during a flare up, I rarely leave the house for months. I missed one of my kids school plays yesterday because I was afraid I was going to crap my pants. Just think about that. Now try living with it. Yeah, depression and bitterness hit hard. Very hard.

So, is any of this curable?

The short answer is no. These are incurable diseases. However, there is treatments that help and can leave you symptom free for years. Changing of diets, prescription and herbal medicines. If those don't work, the removal of sections of one's colon is an answer for some.

But honestly. Good luck getting help. Sound bitter? It is. I have been suffering from Crohn's and colitis since 1998. I can't tell you how many doctors I have seen over the years. It wasn't until two years or so ago that I was officially diagnosed. But I am still fighting to get on prescriptions for Crohn's. Why so long? Good question. I have been tossed around from doctor to specialist, and back again. I have spent more time in the emergency room then I care for. I have been misdiagnosed with Celiac, gastritis, and everything else you can think of. I have had biopsy's of liver and stomach taken at least three times each. There is such much footage of my insides that Fox approached me for a new reality show. The only thing that changed all that was my frustration. I started getting more argumentative with doctors. I demanded something different. I stopped being a number, and started to demand that I was a patient. Hopefully things have changed as IBD has become more recognized by the celebrities. Seriously. Yeah, bitterness ensues.

DOESN'T ALL OF THIS SOUND LOVELY? It's not. It is life altering. It absolute misery. It's no way to live. Heck, I know I left some things out. Like hemorrhoids. I know that I missed some facts. Please feel free to add/correct/discuss to your leisure.

Want to find out more. I invite you to visit http://www.ccfa.org/ or http://www.efcca.org/ for more information.

EDIT: so, does anybody else suffer from IBD? Just trying to get the ball rolling.

 

[Slash]

Definitely not something that can be taken lightly. I had a friend with this and she lives a miserable life. Day to day activities sometimes can't be completed due to it.

I feel for you. Honestly I really do. I have seen the effects it can have on a person first hand and it's tough to just watch and know you can't do anything about it.

Hang in there.

 

[Ken]

Thanks Slash. I appreciate the kind words. My sympathies go out to your friend as well. Missing out on the day to day can be the hardest thing to deal with. That really takes away ones ability to even get their mind off of the pain and misery.

 

[phillgt2002]

****. I don't even know why I continued reading this after "bowel"

I wouldn't wish this **** on anyone. I didn't even know what Crohn's was really before this but I had a friend in middle-school that had it and he described it very vaguely. I used to mess with him about how he was so skinny, never really told me that this happened. He's alright now but ****, stuff is scary.

 

[Ken]

****. I don't even know why I continued reading this after "bowel"

I wouldn't wish this **** on anyone. I didn't even know what Crohn's was really before this but I had a friend in middle-school that had it and he described it very vaguely. I used to mess with him about how he was so skinny, never really told me that this happened. He's alright now but ****, stuff is scary.

Thats why I'm trying to raise a bit of awareness. It gets worse, too. I left out allot of the gory details as well as some of the other problems that were directly caused by IBD.

 

[W3H5]

A woman I used to know had crohn's among other things. Taking the medication for it gave her diabetes.

 

[Carlos]

I'm not suffering from IBD but I have colleagues that have this disease. You could describe my work function as a planner for trains and personal, so I speak many drivers and conductors every day. When they are on the train, and suddenly have to go, they really need to go. It's sad because you feel the pain in their voices and they have trouble to ask me to get them off the train so they can go to the toilet. What is complicated is that they don't know how much time they need to poop. It happens that someone calls it is all okay again, but then have to call me back in 10 minutes that is is not going okay and he has to go back to the toilet. For me personally it's not that big of a problem, only when I really need that guy to do that job.

I had a female colleague who suffered from this heavily and is now at home just over 2 years. Her contract will be suspended. Luckily for her the state recognised her problem so she will still get money.

But yeah, it's really not something to laugh about. Accidents do happen, I have spoken to drivers who have pooped their pants on the train.. Imagine.. I hope they will find something to fix this for you guys.. 👍

 

[Ken]

I've been there so many times. Well, not o

I'm not suffering from IBD but I have colleagues that have this disease. You could describe my work function as a planner for trains and personal, so I speak many drivers and conductors every day. When they are on the train, and suddenly have to go, they really need to go. It's sad because you feel the pain in their voices and they have trouble to ask me to get them off the train so they can go to the toilet. What is complicated is that they don't know how much time they need to poop. It happens that someone calls it is all okay again, but then have to call me back in 10 minutes that is is not going okay and he has to go back to the toilet. For me personally it's not that big of a problem, only when I really need that guy to do that job.

I had a female colleague who suffered from this heavily and is now at home just over 2 years. Her contract will be suspended. Luckily for her the state recognised her problem so she will still get money.

But yeah, it's really not something to laugh about. Accidents do happen, I have spoken to drivers who have pooped their pants on the train.. Imagine.. I hope they will find something to fix this for you guys.. 👍

I know this sounds horrible. But hearing about your coworkers makes me smile. Its a horrible situation that I wouldn't wish upon anybody. However, it's nice to know that I'm not the only person that knows how it goes. Nobody ever talks about this unless they have to. Even my local support groups are generally empty. It makes you feel like your battling this alone.

 

[playnthru]

I've mentioned this in another thread here before. I was diagnosed with IBS (chronic and severe) about two years ago. I suffered through extreme daily vomiting, diarrhea and pain so horrible I could not leave my bed. I've had numerous 'accidents' (in bed, on the floor, my pants, all totally uncontrollable). For the first year and half or two I couldn't even get a diagnosis! One quack doctor had the nerve to tell me "it was in my head"! He acted like I was trying to get 'meds' and faking it..**** him. After finding decent health care, I also had some other medical conditions diagnosed that I was previously unaware of including a heart condition. It may or may not affect the IBS?


Now nearly 4 years later I am doing better. I still suffer from daily pain, occasional vomiting and diarrhea. I take medication daily still. I have medical marijuana which helps with pain and vomiting (the OTC vomiting meds don't work for me). I am now at the point I can leave my house without fear of 'accidents'. They still happen, but rarely now, not daily.

Diet really has been key imo. I had to quit drinking coffee, no drinking beer and watch certain foods carefully. Ok,
maybe a little coffee and beer.

I wish you the best of luck Ken. I hope you can find some relief from the suffering that is IBS. It's horrible, it completely put my life on hold.

You sir are not alone at all. Keep fighting 👍👍

 

[Ken]

@playnthru, Sorry it's taken me so long to respond. My medication has me a lot loopy.

I can't tell you how close our problems are mirrored. Even the quack doctors. I have been told straight to my face that I was a drug seeker. That was in the ER. Even though I refused any pain meds.

Heck, I even have a heart condition called pericarditis. (I think that's how you spell it.)

I am glad you have found a way to leave the house on a regular basis. I have to say that I am a bit jealous of you. I haven't quite gotten there yet. I am hoping, as I just got a appointment with the best gastroenterologist. Apparently he has some awesome bed side manner and actually listens to his patients.

As far as diet, did you change anything else besides beer and coffee? What worked for you?

 

[Slash]

I've mentioned this in another thread here before. I was diagnosed with IBS (chronic and severe) about two years ago. I suffered through extreme daily vomiting, diarrhea and pain so horrible I could not leave my bed. I've had numerous 'accidents' (in bed, on the floor, my pants, all totally uncontrollable). For the first year and half or two I couldn't even get a diagnosis! One quack doctor had the nerve to tell me "it was in my head"! He acted like I was trying to get 'meds' and faking it..**** him. After finding decent health care, I also had some other medical conditions diagnosed that I was previously unaware of including a heart condition. It may or may not affect the IBS?


Now nearly 4 years later I am doing better. I still suffer from daily pain, occasional vomiting and diarrhea. I take medication daily still. I have medical marijuana which helps with pain and vomiting (the OTC vomiting meds don't work for me). I am now at the point I can leave my house without fear of 'accidents'. They still happen, but rarely now, not daily.

Diet really has been key imo. I had to quit drinking coffee, no drinking beer and watch certain foods carefully. Ok,
maybe a little coffee and beer.

I wish you the best of luck Ken. I hope you can find some relief from the suffering that is IBS. It's horrible, it completely put my life on hold.

You sir are not alone at all. Keep fighting 👍👍

I can't imagine not being able to drink alcohol.

Or eat/drink anything I want really.

 

[Ken]

I occasionally drink alcohol. It helps with the pain that my meds don't touch. I just give in and want to numb the pain in any way possible. But I pay for two or three days afterwards. And I not talking about hangovers, either.

 

[Slash]

It's interesting it has that effect on you as far as numbing the pain. But then again, I can't make that comparison because I've never drank while in pain before.

And I bet. I can only imagine what it does to your insides.

 

[Ken]

It's interesting it has that effect on you as far as numbing the pain. But then again, I can't make that comparison because I've never drank while in pain before.

And I bet. I can only imagine what it does to your insides.

I guess numbing the pain isn't exactly the right analogy. It's more like I drink until don't notice. I most definitely know it's the not way to go. But sometimes it helps more than you know.

 

[Slash]

I guess numbing the pain isn't exactly the right analogy. It's more like I drink until don't notice. I most definitely know it's the not way to go. But sometimes it helps more than you know.

I wouldn't doubt it for a second.

 

[playnthru]

@playnthru


As far as diet, did you change anything else besides beer and coffee? What worked for you?

Yes, I had to change everything.

What is working now is small meals consisting of mostly bland food. I eat once or twice a day, never until I'm full. I can't eat anywhere near bedtime. Anything left in my stomach all night will cause massive pain/vomiting/diarrhea in the morning. I've learned that my body can't handle raw vegetables. Red meat can be a problem for me and must be eaten in moderation.

Many many things. I'm sure more will come to me later.

 

[Ken]

I am struggling with the diet. I am a massively picky eater due to texture issues I have with fruits and some veggies. I am a large carnivore, and find that red meat tears me up as well. I have been trying to stay with potatoes recently. Baked, scalloped, fried. Seems to be working to some degree. Its just so boring. And I eat less often then you do.

 

[playnthru]

I was a picky eater. Still am really, I got to the point that anything was better than what I was going through.

 

[Ken]

I have yet gotten to that point. Well, fully anyways. I am stubborn as a dead mule when it comes to my food. It is admittedly the one thing hindering my progress with IBD.

 

[Ken]

I missed out taking my kiddo to the zoo. It's not her first time going. But it would be the first time she would have remembered. Makes me feel horrible, as I really wanted to go. But I've had to many accidents in the last two weeks to not be within running distance to a bathroom.

She had a blast though.