Chrons Disease

[raysnkaysmom]

Anyone familiar with this... How hard is it to diagnose? I'm about to research it as a loved one may be struggling with this... Sad to hope for this instead of a tumor.....

 

[Aimeedyan]

I have Crohn's - it is typically hard to diagnose, as the disease shows itself different in different people and the symptoms are similar to so many other ailments.

www.healingwell.com has a Crohn's message board that has been helpful to me over the years.

Let me know if you have any specific questions =)

 

[Inigo]

Unfortunately, I am very familiar with CD. I was diagnosed 18 years ago, but probably had it for years before that.

CD is different for everyone. I worked with four guys with CD (3 of them were brothers) and each one was different. They never suggested my symptoms were CD since my case was so different than their cases.

I was/am considered to have severe CD. I'm in remission now, thanks to surgical removal of the terminal ilieum (end of the small intestine right before the large intestine), Remicade every 6-7 weeks, and daily immunosuppressives.

I had to quit working at age 29 on a medical retirement because I was so sick. Don't let that scare you. Like I said, I'm now in remission, I have a great job as a probation officer, and life is good. Except for having to take drugs every day, an IV every so often, and having to get regular blood work, I'm good. Well, that and the hernia straight down the midline of the abdomen thanks to three cuts in the same exact spot. (It's going to get fixed this fall, and then I'll have a flat tummy!)

DO NOT LET MY STORY SCARE YOU! I'm just sharing it to show that a person can be really sick, and have a problem getting diagnosed, but can recover and have a good life after. Like I said, I now work full-time in a job I love. The CD is more of a nuisance now than a death sentence, which is how I felt when I was diagnosed.

If I hadn't been diagnosed and gotten so sick 18 years ago, I'd probably still be in that same career field. CD helped motivate me to return to get my masters' degree, and then to become a Probation Officer. It helped get me where I am now, which sounds really weird.

My CD manifested itself 18 years ago with vomiting. Lots and lots of vomiting, combined with lots of pain. I tend to get obstructions because the inflammation causes scarring in the small intestine, and the scarring then blocks the intestines. When the intestinal contents can't go the regular direction, it has to come out somewhere.

I was vomiting and in a lot of pain, and DH would take me to the ER, as it wasn't just vomiting one time. It was non-stop for hours at a time. No one at the ERs (multiple--5 different hospitals in total) couldn't tell me why it was happening. They'd just shoot me full of demerol and pheregan, and send me home with directions to follow up with my doctor. I did follow up, and had scopes out the wazzooo. (ooohh, I made a funny!) Colonoscopies, endoscopies, etc. I had my kidneys checked, my liver checked, my gallbladder checked, etc, etc. The good news is that my liver, kidneys, gallbladder, etc, etc, were in great shape. No ulcers in the stomach. But I was still sick.

Finally, one night, I was in such bad shape, I told DH I would probably die before we made it 10 miles up the road to the big city hospitals, and told him to just take me to the local, rural, podunk, county hospital closer to our house. Now, supposedly, that hospital was just a rural, podunk, not as modern as the big city hospitals, so we never went there. Not 30 minutes after we arrived, and they'd given me the demerol and phenergan to settle down the pain and vomiting, Dr. David Wipperman was leaning over me, saying, "I think you've got Crohn's Disease, and I'm going to operate in the morning." Finally, I had a name for this thing. After the next morning, I had a diagnosis. He was right. All those scopes, tests, etc, and it's was a doctor's gut instinct and surgery that diagnosed me.

Since that time, I've had more intensive testing through enterocolysis, MRIs and CT scans, and my terminal ilieum was in bad shape. All told, I've had three surgeries, and have lost about 2 1/2 feet of small intestine. Like I said above, I tend to scar in the intestine, and get blockages. At the last surgery, the surgeon said the scarring was so bad, there was only an opening about as big as a pencil lead for the food waste to go through at the end of my small intestine. No wonder I was sick. Thanks to the magic of modern pharmaceuticals, I don't plan to ever get that sick again.

Good luck to your family member.

 

[raysnkaysmom]

Inigo - Thanks for sharing...

He doesn't vomit that I know of...but I know its different for everyone...

Is it also more common for females? It seems I hear that more often...

The internet is scary... you can get worked up diagnosing things based on a range of symptoms... With Farrahs death, the thought of anal cancer is a scary thought

 

[crazee4mickey]

My sister has had Crohn's for over 25 years now---it was very hard back then to diagnose, they thought it was her appendix and operated. She has had every test possible (and in many cases this doesn't stop after the diagnosis) and says that if you have Crohns there is very little dignity left after the tests they perform. It took a very long time to diagnose it correctly.

The main thing is to find a very good doctor, one who understands Crohns and all that it is about and cares for them as a person not just a patient.

A lot of people don'y understand the disease and don't think it all that bad--so I am glad you are researching so you have a better understanding.

The disease is very extreme in her case and we have many people in our area with it--she is by far the worst, others look healthy and lead relatively normal lives. For my sister to reach 90 lbs at 5'5 is a reason to celebrate--which rarely happens unless she is admitted to the hospital for awhile.

I am not trying to scare you but in the case of my sister, I don't know if she would agree that hoping for Crohns is better than a tumor. My sister has had a very difficult, limited life due to this disease. It can be a very bad disease for some yet others can cope and live a normal life if they are able to diagnose it properly.

If this is what your loved one has I sincerely hope that they can get a proper diagnosis, receive the best care and are able to find a compassionate doctor.

 

[Aimeedyan]

Inigo - Thanks for sharing...

He doesn't vomit that I know of...but I know its different for everyone...

Is it also more common for females? It seems I hear that more often...

The internet is scary... you can get worked up diagnosing things based on a range of symptoms... With Farrahs death, the thought of anal cancer is a scary thought

Yeah, I typically avoid Googling symptoms because you just read all the scary stuff. That said - while trying to get mine diagnosed, an online friend actually suggested Crohns due to Googling she did. I avoided it but friends looked for me I'd never even heard of it! Sure enough, on my next trip to the GI I asked him about it and he admitted it was 'his gut feeling' and after the 'scope, we knew without a doubt that was it.

Unfortunately, there are people that have clean colonoscopies and still have it! Mine has typically shown up easily in the standard tests (labs, 'scopes, CT scans) and because of that, it took less than a year to get diagnosed.

I am considered to have moderate Crohns - I am now on Humira and it's saving me from surgery for now. I still have my entire digestive tract, though my GI has reminded me that I will have some of it removed at some point. I have some serious scar tissue already causing some issues. Just trying to put it off as long as possible. I've only be diagnosed for 5 years or so.

With great drugs, I am able to be fairly normal most of the time. Some people have a minor case and go into remission fairly easily and live symptom free for years and years. Others, like the pp's sister, struggles on a daily basis. It really varies a lot. For some Crohnies, even the big "C" seemed preferable since there is an end to treatment, chance of lifelong remission, removal of the tumor. Crohns is chronic and that just doesn't happen. Even after surgery, your disease will just manifest itself someplace else.

You're a kind friend to look into it for her

 

[powellrj]

My DS has it and has aged him so much. He spent so much time in the hospital last year that he had to go part-time at work. He is much better this year and he credits probiotics for much of it.

It wasn't easy to diagnose like others have said. They thought he had colon cancer.

 

[kacaju]

Add my dh to the list of people who have it. He, as others here had a hard time figuring out what was wrong with him. My MIL says he came home from college and almost died before they finally figured out what was wrong with him. He had many surgeries and the last one he had was in 1994 when he had his ilieum removed. I think he had about 1 1/2 foot of intestine removed.
After he healed from surgery I still to this day remember him telling me he had forgotten what it was like to live without pain!!

After 15 years he is starting to scar up again. He sees his gastro and gets his scopings done.
He is also lactose intolerant. The poor guy when he was in college the Dr's used to tell his Mom to *fatten* him up by giving him milkshakes!! No wonder he was so sick!!

Since his surgery he has been doing great. He had one set back and that was because he had open heart surgery (he was born with a defective Aortic valve and had it replaced) After that surgery his crohns flared up. Right now I beleive he is only on one medicine for crohns....6-mp.

 

[kydisneyfans]

Another Crohnie here, was diagnosed while in college in 1993. I had to drop out for 2 years and just focus on getting my health back. Emergency surgery brought the diagnosis, no doctor thought it could be Crohns. The ER surgeon thought it was the appendix.

I have had 3 surgeries, as the first one failed and my colon literally "broke open" where it never healed correctly after the first surgery. Since then I have been hospitalized 4 times for about 4 days each due to obstructions, but nothing in the past 4 years.

I eat a totally normal diet now, although milk and milkshakes are not options for me. I am convinced that stress causes my flare ups, it was salad and nuts that caused blockages before. Many lose weight during bad flare ups, I lost 80 pounds quickly, and have gained 100 since.

I know more females than males with Crohns. The big problem is that it is nearly impossible to diagnose and does something different to everyone that has it.

 

[Aimeedyan]

Another Crohnie here, was diagnosed while in college in 1993. I had to drop out for 2 years and just focus on getting my health back. Emergency surgery brought the diagnosis, no doctor thought it could be Crohns. The ER surgeon thought it was the appendix.

I have had 3 surgeries, as the first one failed and my colon literally "broke open" where it never healed correctly after the first surgery. Since then I have been hospitalized 4 times for about 4 days each due to obstructions, but nothing in the past 4 years.

I eat a totally normal diet now, although milk and milkshakes are not options for me. I am convinced that stress causes my flare ups, it was salad and nuts that caused blockages before. Many lose weight during bad flare ups, I lost 80 pounds quickly, and have gained 100 since.

I know more females than males with Crohns. The big problem is that it is nearly impossible to diagnose and does something different to everyone that has it.

Stress is my #1 trigger too - every flare I've had can be pinpointed to a major source of stress in my life. I still haven't figured out the best way to handle it (and obviously am still not doing well, since I feel a flare coming on and are bumping up the Humira!). I have issues with food on occasion but it's mostly when I eat fresh veggies, fruits, salad because it blocks. Other than that, I can eat most things.

 

[mjkacmom]

My dd12's best friend was diagnosed in kindergarten, and is doing great! She's on a very restrictive diet (her mom doesn't like to medicate her, if possible), but she's healthy. She's actually coming over with some other girls tonight, and I bought her some plantain chips and walnuts to snack on. She's starting to very slowly introduce more foods into her diet, like a little rice here and there. The hardest part has been for her mom to prepare her food - everything needs to be cooked from scratch, even making her special yogurt.