any drs. out there? have a question about crones

[blazehok68]

about a year and a half ago, my fiance was diagnosed with crones disease. i know there is no cure, i am just looking for suggestions on what to do. she has been in and out of the hospital about 4 or 5 times in the past year for the same thing. she starts to get pains in the infected area, then it shoots up to her stomach, and makes her nautious, and she cant eat. she actually ends up vomiting the nauzia gets so bad. everytime she goes to the hospital, basically they treat her for dehydration, b/c she cant eat for a cople of days. basically i have to force her to go to the er. just this week, she has been getting the same symptoms, but without the vomiting. i am forcing her to eat, but she barely eats anything. now, she is extremely constipated from it. she hasnt gone probably for about a week. she is eating though, so there is stuff to get rid of. she has been prescribed to take 2 antibiotics, one is cipro, but i dont know the other. she takes pentasa daily, i think 4

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at a time, 4 times a day. i just want to know what i can do for her or what can be done to prevent flare ups. i try to keep her on a low fiber, soft diet. but when i am not around, i can not monitor what she is eating. what should i do?? she hates going to the hospital and i hate taking her there cause she ends up staying there for at leats 4 days.

 

[jakebtc]

it sounds like she at the point of surgery bro...
my g/f sister has it and has had at least one operation i'll get ahold of her and get back to ya with her tele # see if she can talk to u guys about it a little bit

 

[blazehok68]

well she actually talked to her gastro guy the other day and he said that he was gonna do another colonoscopy and if it still looked the same as 2 years ago that the next step was to do surgery. he said that the infected area was very small, about 2-3 inches of intestine, but there was alo a chance that when they put everything back together that the infection could come back. thats what im afraid of.
another thing that she takes, medication wise, is she goes in every 6 weeks for an interveinous steroid b/c the

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make her gain too much weight.

 

[jakebtc]

i called my gf and her sis is at work and super busy but im still going to get u her # as she's been through the whole thing it may help u guys a bit

 

[blazehok68]

thats cool, id appreciate it.

 

[michelle l]

My brother had this 25 years ago...I don't know exactly what process his treatment involved but he's 100% healthy now. As a matter of fact, he's actually a little overweight now.
So, keep your chin up!

 

[kimgpk]

I am not a doctor but like others here I have had some experience with this. I am not sure why your gastro guy has not told her to stay away from certain foods. Pickles any veggie uncooked,caffine,high in fat foods, grapes, and stress. Have her keep a food diary and if she gets a flair up she knows exactly what food to stay away from. Plus it's info for the doc. Have her just some Pedi sure it comes in choclate and vanilla and actually tastes pretty good. My mom has cancer and there are times where she can eat absoulty anything and most of the time she can get that down and she likes it and has some nutritional value. Talk to the doc about a stool softener would bo benifiber because all that does is add bulk and you don't want that. A colonoscopy would be a good idea because you can get a blockage and see wouldn't want that and could end up in a ruptured bowl and that can be vary serious. Sounds like she is in advance stage so surgey might be a god option they will probably just remove that peice of
intestine and a little more then the infected area. There are some new med out. Do a search on google and there is tons of information on there. But take everything with a grain of salt. My suggestion is go to your gastro doctor with your info and see what he has to say. And remeber 2 opinions are better then one and 3 is better then 2. I hope that some of this was helpfull and all goes well
Kim

 

[007]

Its been a LONG time since i've posted here . . . I don't even have a tank anymore . . .
But I DO have Crohn's Disease (Thats the correct spelling by the way). I am not going to sugar coat this but be up front and honest . . . this disease is absolutely terrible. Its very painful, its exhausting, unpredictable, and makes life all around miserable when you have a flare up. I have dealt with it since I was 14 (now 25). The good news is that when the disease is in remission, its virtually un-noticeable. This my friend is the trick . . . getting the disease into remission, and keeping it that way.
The above mentioned food diary is a MUST. She needs to keep very detailed records of when she eats, what she eats, how it was prepared (e.g. baked, fried, roasted, etc.), and how much. This information is very useful to a physician first off, but also for her. As mentioned, if she gets sick, look back at the last few things she's eaten . . . try that food again. If she gets sick again, then thats it for that food . . . no more. Process of elimination here . . . .
The following info varies considerably among people: Raw vegetables are VERY hard on the digestive system. This includes salads, veggies and dip, sandwhich toppings, etc. Nuts are also problematic. For many people, spicy foods cause considerable difficulty as well as fried foods. Dairy products can also be very difficult to digest.
Not eating late at night or even several hours before bed is also a good idea. When I'm feeling ill, I limit my meals to breakfast and lunch . . . no dinner. A series of small meals instead of one large meal is also quite helpful.
Stay away from things like Immodium . . . trust me, they can make things a LOT worse. things like pepto and mylanta though can really help the stomach upset.
I know this is a long post, but you can send me an email anytime to ask questions. I know a LOT about this disease and its treatment. my email is millerj24 at yahoo dot com
Also, here's a great website with lots of good information:
www.ccfa.org

 

[blazehok68]

i really do appreciate everybodys response. i will let her know about everything that i have read here, actually i will let her read it herself. the doctor has given us a couple of packets of info on what food she should stay away from. that food diary sounds like a great idea also. i just hope she sticks to it, but we will see. i will keep everybody posted on her progress.
thanks again,
joe

 

[blazehok68]

well just an update on my fiances progress. the end of april she had a real bad attack and her gi dr. put her back on a steroid. since then she has felt better than ever. but she can not be on the steroids forever. so, last week she went to talk to a surgeon and her surgery is scheduled for july 31st. i hope this will be the last that we have to deal with this. everybody cross your fingers!

 

[sinner's girl]

Good luck. I dated a guy with it...never knew much about it...just that he couldn't eat certian foods, but I never paid attention to what he could or couldn't eat, and he was in and out of the hospital at times. Other times he was perfectly normal. At one point I know he was on steroids of some kind.

 

[thewizzrd]

Just happened to stumble on this, I'm sure it's already been checked but you may want to check again if not, a very good friend of the family was diagnosed with this disease a long time ago and just recently(within the last 2 years) was told that he actually had cancer that was causing the issue, not crohn's. Had the doctor's actually found that in the beginning he would have had a much better chance to beat it, however, after 10 or so years of it eating away at him he doesn't have a whole lot of time left and he is only like 45 or so. Just a little FYI.

 

[blazehok68]

Oh Boy.....well Thanks For The Info, I Hope It Is Not Cancer. But She Is Going For Another Colonoscopy In A Couple Of Weeks, So We Will Ask The Dr. To Check It Out. Thanks

 

[blazehok68]

well the saga has come to a halt, finally, i hope. on july 31st my fiance danielle went in for a laproscopic illiumectomy to remove the infected area of intestine. they went in and removed 6-9 inches of her intestine. before the surgery the surgeon said that he was going to remove her appenix while he was at it because it is attatched to that part of her intestine and since he was in there anyway...
once the surgery was over the dr came in and said that the infected area was so bad and swollen and rubbery, that they couldnt even see her appendix in there. turns out it was all tangled up in the infected mess.
she spent 5 days in university of pennsylvania hospital and she is now well on her way to recovery. when she went for her post-op exam the surgeon said that the pathology came back on the removed part of her and it is indeed 100% chrons. he also said that she now has no infected area in her body, but it is up to her to do a little preventative maintenance so that it doesnt come back. time will only tell.
right now she is doing well, eating well and finally going to the bathroom on a normal schedule. her belly is still really sore and for the first week home she couldnt lie down flat, or stand up straight b/c of the adominal muscles healing and being very tight. she still cant stand completely upright but at least she can lie down flat and get a good nights rest. oh yeah, no more steroids either thank god. she still has to take her pentasa, her preventative medicine though.
just wanted to thank everybody for their advice and support on the issue.
joe

 

[gen1dustin]

That is great to hear that. I hope she does better & I wish her luck. I've got to give props to you though for doing so much. If you posted on this forum for help, you yourself must have done tons of research eveywheres. That shows you are a great person in life & a great husband. Again I wish ya'll both the best of luck.

 

[ryanhayes9]

so how is she now?

 

[blazehok68]

Originally Posted by ryanhayes9
so how is she now?
she is a totally different person. she eats normal, ,she goes to the bathroom normal, shes a lot happier. never in pain. both of our lives are better now. shes not worried about how shes gonna feel while shes out, and im not constantly worried about her.