Chrons Disease...I have it

[greenbriar]

after the colonoscopy/endoscopy and tests, it has been determined that I do infact suffer from Chrons disease

and it is NOT IBS

[greenbriar]

1. any one here

been diagnosed with it?

[AnotherGreenWorld]

3. Yeah, it sucks.

Also, because it's not a very glamorous disease, the specialists usually aren't as intelligent as you'd expect a specialist would be.

[greenbriar]

5. my doctor is pretty awesome

and sees it as a challenge to make me better


couldn't ask for more

[AnotherGreenWorld]

7. Wow, that's pretty rare.

When I was diagnosed, I wasn't really told anything, and being in the hospital doped up on morphine, I wasn't in a very critical state. I wasn't told anything about the drugs I was on, nor how long I would be on them. They told me--wrongly--that I'd be back to normal in a few weeks. So I assumed I'd take the pills and be done with them. Then when I started having side-effects from the drugs, I was told--wrongly--that my disease was responsible, and that the things I was experiencing would just go away on their own. (If I had known at the time that my disease wasn't responsible, I could've done something to mitigate them. Unfortunately, the damage is done.)

I was also told diet doesn't matter--but to eat ice cream because it's soft. It turns out, of course, that diet does matter, and eating ice cream is pretty stupid advice.

[lizziegrace]

2. No, but

I deal with IBS. How is it managed??

[greenbriar]

4. right now I am taking 9 pills a day

dicyclamine...slows down the colon

acefex....sp for the inflamed Illietis

and acacor for ulcers...


but..have to have blood drawn every month

[NMDemDist2]

6. I've know several people with Chrohn's diease

my mother in law was just diagnosed a couple years ago

i've had people tell me they have good results from drinking aloe vera juice, it helps decrease the irritation

but you'll have to watch your diet carefully

sorry :hug:

[greenbriar]

8. yea, look at the foods to avoid...what is left to eat???

Crohn’s patients should avoid the following foods and liquids:
• Dairy foods
• High fiber foods should be avoided during flare-ups.
• Hot spicy foods
• Alcohol & caffeine
• Foods containing saturated fats, found in meat and dairy products. However some fats such as in fish oil may actually be helpful.
• Products containing corn or gluten, those made from wheat, oats, barley, or triticale
• Foods, such as soy, eggs, peanuts, tomatoes
• Gas-producing foods such as cabbage family vegetables (broccoli, cabbage, cauliflower and brussels sprouts), dried peas and lentils, onions and chives, peppers and carbonated drinks
• Foods that may irritate the intestine (particularly the cabbage family vegetables)
• Simple sugars
• Dried fruits or high-sugar fruits, such as grapes, watermelon, or pineapple
• Sorbitol (an artificial sweetener)

[AnotherGreenWorld]

9. You should also try using pro-biotics for a while...

They've really helped me.

Also, this is pretty interesting:

http://news.bbc.co.uk/1/hi/health/3663336.stm

[Xipe Totec]

10. I'm very sorry

My youngest son is at Beth Israel Deaconess right now. They don't know what's wrong yet. Chrons hasn't been ruled out or in. Same goes for several other nasty outcomes.

Taking it one day at a time; this is week six.

[greenbriar]

11. I have been seeking a cause/solution for 3 years

and until 2 months ago...all anyone would say was IBS


I know it was more than that and persisted!!!


now I have a great endo/gastro doctor and he is fighting WITH me

[Xipe Totec]

12. His PCP tried to pull the IBS BS on us

That's when we transferred him to Beth Israel. Maybe now that real doctors are looking at him they'll find the cause.

Best of luck to you.

:hi:

[stellanoir]

13. Sorry about your prognosis

the only thing I've ever heard of helping is this. . .

http://www.essiacinfo.org/

Though it's mostly a cancer treatment it seems to help one's gastrointestinal ability to absorb food as well.

I know people who've found it to be enormously helpful.

Hope you heal up soon.

[Roon]

14. It almost killed my Mother

She had all the symptoms but refused to go get checked out. She finally went to the ER and spent five days in the hospital. The DR. said she was days away from death. Take care of yourself, take your meds, keep in touch with your doc.

[greenbriar]

15. I can relate

during the last huge flare up, I was in the br with explosive issues 5-7 times an hour

was so weak all I coudl do is poop and sleep

[Roon]

17. My Mother passed out in the parking lot of her office

That is when she went to the ER.

[greenbriar]

18. wow, there have been times I felt

close, but thankfully I never got that bad away from home

[AnotherGreenWorld]

28. That's not all that uncommon for people with Ulcerative Colitis or Crohn's...

[Shine]

16. sorry about that, greenbriar

one of my hubby's best friends has that condition, as well. it's challenging, but manageable. you have my best good wishes. :hug: hang in there.

[Bjornsdotter]

19. Oh dear

....I'm so sorry. :hug:

[greenbriar]

20. thanks

while it is sad, the results could have been MUCH worse



like colon cancer ect...


at least this is treatable

[AnotherGreenWorld]

21. For some it is; others it isn't.

[undeterred]

22. I worked for a chrons specialist in Chicago

and it is an "interesting" disease. Glad you have the right doc, that makes all the difference. I used to work on family histories and get all the family members to have blood samples sent in for genetic testing. Its more common than people realize- just not mentioned. My boss was good with the immunosuppressives and keeping things under control. I guess we all have something chronic- mine is migraines.

[greenbriar]

24. my daughter

has migraines

[AnotherGreenWorld]

25. Immmuno-suppressants don't work for a lot of people, though,

and do carry a risk of cancer--at least Remicade and Imuran.

[AnotherGreenWorld]

27. Yeah...

Migraines are a lot like having a serious, incurable disease like Crohn's Disease. :eyes: Additionally, most people with Crohn's take drugs which give them headaches. So that's really the only comparison.

(I guess in all your years of working for a "chrons specialist" you never even learned how to spell the disease correctly...)

[huskerlaw]

29. Ever had a migraine?

:eyes:

[AnotherGreenWorld]

30. Yeah. Do you have Crohn's Disease?

The two are not even remotely comparable. A migraine better compares with dandruff than CD.

[huskerlaw]

32. The only comparison that was made

is that they're both chronic illnesses, which they are.

There was no statement about the severity being the same.

[AnotherGreenWorld]

36. Your comment was the comment to which that message,

the one saying migraines better compare with dandruff, replied. Saying, "Ever had a migraine?," suggests that my comments were out-of-line, that, in fact, migraines are as severe as CD. Of course, they are not, and it would be just as absurd if someone said, "You know, I guess we all got chronic problems, me I've got dandruff. I know you how you feel, buddy."

[undeterred]

34. It was two years of my life, more than 13 years ago

There is no comparison between chronic illnesses- someone can have crohns and barely miss a day of work or end up with frequent hospitalizations over the course of many years.

For me the migraines would cause me to be completely disabled without daily meds. I used to have 3-4 ER visits per year and miss so many days of work that it was difficult to deal with work and school. Its not easy to explain migraines- because its about the worst you can feel without really being sick. Now I am on 4 daily meds with about 4 backup meds and my life revolves around having insurance to treat it. So, its not like having chrons, but its a chronic illness. Its not like having MS or lupus or arthritis or depression or shingles either. And meds for all of those illnesses give side effects.

The immunosuppressives can be miserable, but they are a step up from keeping people on prednisone for years, at least thats what the doctor I worked for said.

[AnotherGreenWorld]

37. No. Crohn's Disease is always more severe than having migraines,

assuming the migraines aren't just one manifestation of some other serious disease.

[undeterred]

40. ok

No one has ever suffered like you.

[AnotherGreenWorld]

41. I never said anything of the sort.

Having migraines simply is not comparable to CD. It is like comparing dandruff to MS.

[huskerlaw]

44. That's ri-fucking-diculous

and you know it.

Migraines may or may not be as bad as CD, but they DO greatly affect a person's ability to function. They are horribly painful, and, yes, can be debilitating.

Dandruff, on the other hand, isn't even physically painful, for starters.

If you're wondering why nobody is taking you seriously, it's because of your broad statements and overly dramatic analogies. Your main point may be valid, but the way you're arguing it is not effective.

[Name removed]

45. Deleted sub-thread

Sub-thread removed by moderator. Click here to review the message board rules.

[huskerlaw]

43. Really?

You've done a scientific study involving everyone who has ever suffered from either affliction?

Cool!

That's why my other post involved a :eyes:. While your point is likely true generally, the eye rolling is directly related to how you seem to think that you have the be-all-and-end-all knowledge about the amount of suffering each and every person with either of these problems goes through.

[AnotherGreenWorld]

46. Suppose I said that

CD is always more severe than dandruff. No scientific study is necessary to realize the truth of that statement. The same is true of my original statement.

[SPKrazy]

23. sorry, i hope that you are

able to control your symptoms well...

:hug:

[Cabcere]

26. Sorry to hear that, greenbriar.

:hug: One of my dad's former employees suffered from it too, and of course growing up in Staunton, VA I always heard a lot about Lew DeWitt (even though I was too young to remember him as a Statler Brother; it's always been Jimmy Fortune for me). Best wishes for you in your fight against Crohn's - I hope things go well for you, and I'll be sending good vibes your way. :hug: Peace.

[tigereye]

31. I seem to know many people who have it -

my SIL does well with Remicade (sp) - it's the healthiest she has been in years. It seems to affect everyone differently. I know several people who have become quite ill, but they manage with life-style and other changes...


best to you.

[greenbriar]

33. thanks all

I don't feel so scared now

[UrbScotty]

35. One of my favorite Michigan bloggers has Crohn's

http://liberalloudandproud.blogspot.com/

[begin_within]

38. Here's a web site with lots of information about it

http://www.ccfa.org/

[begin_within]

39. What medications have they prescribed to you for it?

This is not medical advice, just anecdotal evidence. My Mom takes Asacol (mesalamine) for colitis, and it seems to keep it from flaring up. I don't know if they prescribe that for Chron's. Oils with omega-3 fatty acids have been shown to reduce inflammation. A fish oil supplement (or flaxseed oil if you are vegetarian) can supply omega-3 fatty acids. An herb from India called Boswellia has been demonstrated in India to have anti-inflammatory action in the intestines, but is almost unkown here. I think systemic corticosteroids, such as Prednisone, should only be used as an absolute last resort, if nothing else works. Taking steroids as pills is extremely risky because of the many and severe side effects. The side effects of Prednisone are numerous and can be disastrous to your general health. Topical steroids such as hydrocortisone enema or Rowasa are far less hazardous to your general health, because they are locally used. They may not help with Chron's though. These are just suggestions - as always, your doctor is the one you should trust. I would try to find a gastroenterologist who specializes in Chron's disease, and has experience with it, and not just go with a doctor who thinks this will be a "challenge" (translation: "I've never dealt with this before").

[AnotherGreenWorld]

42. Good advice, especially about Prednisone.

Budesonide (brand name, Entocort) is an option you might consider in Pred's place. I haven't tried it, but it has less side effect than Prednisone.

And if your GI wants to put you on an insanely high dose--like 80mg or higher--like my GI did, you probably should find a different GI. It will give you other serious health problems that you'll have to deal with for the rest of your life, and that's the last thing you need with this disease.

[huskerlaw]

47. I'm so sorry, greenbriar

I hope the doctors figure out how best to handle your case.

:hug:

I also apologize for the hijacking of your thread.

[THUNDER HANDS]

48. i have two uncles who have it

and I've had bowel issues since I was 13. Eventually when I was 18 I was diagnosed with an intestinal ulcer.

I'm sure in 20 years I'll be diagnosed with it too.

BTW, my uncles who have it are on different sides of my family.

[REP]

49. Same here; Crohn's after years of "just" spastic colon

I do have spastic colon but I also have Crohn's in the terminal ilieum (small intestine). Mine's mild yet still painful and bleedy!