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Old 12-08-2004, 11:14 PM   #1
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Twisten

One of my specialists for my Crohn's told me that yes we are at a higher risk for colon cancer. I think he said something like 10 times more likely.

I don't know if you answered me about this or not, but what meds are you all on? I think we chatted about this. If we did I can't remember what meds you told me that you were on.

How were you diagnosed? What were your symptoms before diagnosis? How old were you? How old were you when you started having your first symptoms? Have you had any surgeries?

Sorry so many questions, it's just that I don't get a chance to talk with someone a lot that shares this horrid disease.

Paula

 
Old 12-12-2004, 09:53 PM   #2
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Re: Twisten

Its Colitis not Crohns that ups ones risk for colon cancer. I know take 150mg of Imuran and 16 pentasa a day. I have had 3 resections. I was 19 when I found out I had Cohns.I'm now 47. My 1st resection at 19 was how they finally found out what I had. I always had bad stomache aches and diareahe as a young child. I thought it was normal as I had always had this as long as I can remember.

Last edited by gardenandcats; 12-13-2004 at 03:11 PM.

 
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Old 12-13-2004, 03:05 PM   #3
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Re: Twisten

Hi Poo2. Yeah, I had answered before but the board was busy and I didn't bump it up so its probably a few pages back now. No problem though, I agree its nice to "talk" to someone else that shares the same problems and I don't mind lots of questions at all.

I was on pred, imuran and asacol and pantoloc for stomach issues but when my last colonoscopy was good the brainless GI stopped all my meds but the pantoloc. It didn't take long before symptoms started again so now I'm back on the asacol but that's all for the time being. I'm also on narcotics because of back problems and have been for 2 years now.

I've had bowel problems my whole life but was told it was IBS, with no tests at all either. I had a fisula about 5 years ago and the crohns still wasn't found until 3 years ago by colonoscopy. The only surgery I've had because of the crohns was a temporary colostomy from the fistula and then the reversal. I've been lucky in that department.

I just recently read somewhere that we are at an increase for cancer but not as high as if we had UC. There is lots of history in my family of bowel cancer.

My symptoms are usually nausea, vomitting, intense stomach cramps similar to labor pains when they are at their worst, hot and cold flashes, diarrehea and when things are real bad my bowel basically shuts down and I can't even move gas for a few days. The docs told me that is because my colon swells shut and nothing can pass. I also get mouth sores and terrible body and joint aches. There are probably more but just can't bring them all to mind right now. If I missed anything just let me know and I'll try to answer it. What meds do they have you on and what is your story?
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Old 12-13-2004, 06:05 PM   #4
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Re: Twisten

Hi Twisten,

My story is: In my early teens I was having really bad stomach aches and explosive BMs. My mom finally took me to a Dr that told my mom to take me to a psychiatrist. Lovely Huh??!!??

When I was 18 in 1988,I had so much pain in my stomach I thought I was dying. I called my mom (was living with a couple friends at the time) she told me to wait until the morning to see if it was any better. It wasn't, the pain had moved to the right side by my appendix. At the ER they took umpteen tests, didn't find anything wrong and took me in for emergency explorartory surgery. This is when they found it. I had abot 1 foot of small intestine taken out. After surgery I tried the sulfa drugs but they didn't work. Basically I was not on anything from after the surgery until 2002. Sure I would have very minor flares but nothing I could'nt handle. I had a baby via
c-section. Everything went bonkers after that.

I had three different Dr.s We tried EVERYTHING for meds. Nothing worked. I even had Remicade infusions. This only made things worse. I was living on pain pills (still am). I had another surgery 11/02. They took out another 1 1/2 taken out. Since then things have been bearable, I can work and enjoy most of my life. Right now I have abdomen pains. On and off with constipation, time is the only thing that helps with this. I'm nauseated alot. I also have the hot and cold flashes. I did not know thay Crohn's sufferers had these!!!! I thought I was in early menopause or something. I have hot/cold flashes all the time.

The only meds I'm on now are Prevacid, I have ulcers and a hiatel hernia in my duendum (sp). I also take 40mg of Oxycodone for the pain. My Dr. doesn't really like me on these b/c of the onstipation but too bad for him b/c he doesn't have to live with the day to day pain. I get constipated even when I'm not on them.

It would really be great to keep in touch and have someone who knows what I'm going through to talk to. My hubby has no idea.

One more question, are there days when you are sooooo tired you can barely keep your eyes open? This is really a problem with me some days.

Keep in touch okay Twisten.

Take care. Paula

 
Old 12-14-2004, 09:51 AM   #5
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Re: Twisten

Sorry to hear you're having so much trouble and that no meds are working. Once when my mom took me to the doc he said also it was all in my head so I hear you on that one!! Not everyone gets the hot/cold flashes but some of us do and I hate them. I do deal with fatigue but I have stretches where I can't sleep for nothing. I'm lucky if I get 1 hour some nights. I've gone through stretches that last 3 weeks so yeah I'm exhausted but still can't sleep. I think you're talking about chronic fatigue syndrome and while not necessarily common with crohns patients it does occur. Not a problem to keep in touch with each other but if you're looking in here and can't find me I post in the pain management room a lot. I see you suffer with the constipation issue as well. Not too many of us deal with that, most its the other way around. Have they had you on any steroids such as prednisone?
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Old 12-14-2004, 05:32 PM   #6
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Re: Twisten

Hey paula, I was just told i have crohn's almost a year ago. The only symptoms I had was diarrehea and fistulas that were draining in the female area. It started with just one now it is 3. That is what brought on the colonoscope because they could not figure out what was going on. After 2 colonoscopes in less than 2 months they said that I had crohns. They started me on prednisone, asacol, and flagyl(an antibotic) all to try to clear up the fistulas and to put the crohns into remission. they then took me off the prednisone after about 4 month and changed the flaygl to augmentin xr. The diarrehea has mostly gone away but still have the fistulas and fatigue a lot. My question to you is how was the remicade treatments? They have talked to me about starting that but because of my age (23) and my wants to have chilrden I dont know if I really want to do that. Right now i am still on the asacol and augmentin xr. Thankfully though I have only been through 1 surgery because of the crohns and that was before i knew i had crohns. with me being new to the boards and to crohns I too would like to keep in touch with others who have been through and are going through what i am. so please keep in touch. thanks.

 
Old 12-14-2004, 05:41 PM   #7
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Re: Twisten

Hi Rottlover. Sorry to hear you also are in our crohns club. One thing I want to add for you and Paula. When taking steroids such as pred, make sure you take extra calcium. I didn't because I wasn't aware that the pred increases our risk of osteoporosis and I know have that too.
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