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Anyone with C.D. and total colectomy ever have a flare?

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Posted 2/15/2012 2:18 AM (GMT 0)
Hi Everyone,
It has been a long time since I posted. I have C.D. and had a total colectomy in 2007. I have been having what feels
like a flare for the past two weeks. At first I thought it was a viral infection but now I am not so sure. I have cramps and
liquid output. I have been getting up 5 or 6 times a night to empty my bag. I am back to having night sweats but no fever.
I have tried everything but nothing seems to work. I have been med free for almost four years and don't want to go
back on drugs. I know that I can always get answers and suggestions here. I had such a bad experience with doctors
before my surgery that I prefer to try natural remedies first. So if anyone has had experience with this or suggestions
please way in.
Thanks,
Fruitcake
Posted 2/15/2012 2:52 AM (GMT 0)
I have an ileo due to an injury not to disease, but I am wondering is Chrones the disease that can be in the small bowel and the large bowel or is that UC? Sorry I can't help but just interested in the info.

I hope you are not having a flare. Someone else will be along soon who is familiar with CD. Hope you feel better. Rosemary
Posted 2/15/2012 2:55 AM (GMT 0)
That does sound like a flare. Have you had small intestine inflammation before?

I tried so many natural remedies before my surgery, with limited success.... hope you have better luck, but if it were me, I'd go see a gi (maybe a new one).

You could try some immodium and thickening foods just to make the symptoms more manageable.

Hope you feel better soon.
Posted 2/15/2012 4:57 AM (GMT 0)
Thank you for your kind words. Crohn's can effect both the small bowel and large bowel as well as other organs.
I did have some problems with small intestine inflammation before. Since I had my colon removed I have had no
problems except for blockage twice and the surgeon gave me mineral oil to drink and within 12 hours it was clear.
My surgeon suggested that I keep mineral oil in the house and if I felt like I had a blockage to try that first. It works!
What caused the blockage? Watermelon, it was suppose to be seedless but it had tiny white seeds. I have decided I
will wait a couple of more days and than if things are not better I will see the doctor.
Bluegrass, my disease sounds like yours, I was told I had both C.D. and UC. I tried every treatment available and
nothing worked. I ended up in the hospital for 27 days and knew the colon would have to be removed but had to
wait until I could make red blood cells. When I say I had bad experiences with doctors that is an understatement.
My doctor did not think I was as sick as I was. This is a problem for all of us. It is bad enough to have a medical
problem that you can not control but most doctors treat us like we are just a bunch of complainers. I found that
they got upset if the prescribed meds didn't work. Even worse was to be in a clinical trial and and be one of the
people that got worse with the drugs you were testing. The one thing I learned from all this is you have to take
charge of your health,ask a lot of questions and chat with people on web sites like this because you are not alone
and usually someone here has had a similar experience.
Fruitcake
Posted 2/15/2012 7:45 PM (GMT 0)
Fruitcake, yes we do have some things in common, although as far as I know, I haven't had any small intestine involvement.

Your experiences w/the doctors sound horrible. Mine were the opposite -- I actually had my gi trying to convince me that I was sicker than I thought I was. He was right, but it's hard to tell when you've been sick so long (I was saying one day that I'd had a great day, only 12 bathroom trips, and he was saying that that wasn't really a great day....)

I have never heard of having both CD and UC .... doesn't fully make sense because every symptom you could have of UC is also a possible symptoms of CD -- so I think UC+CD=CD .... although that alone would be enough to question a doctor.

I never was in a clinical trial -- that was basically my other option besides surgery(or tysabri), but I'd already gotten a 104.6 fever on cimzia where I was in the hospital as sick as I've ever been, and I though no way was I going for such poisonous drugs.

I don't know what I would do if I started flaring, because I have pretty much tried all the drugs..... and I sure tried a lot of alternative things too. I got a bit sour on the alternative practitioners -- with me, they were the ones who got mad if their treatment didn't work (or said it was my fault).... the medical docs could sometimes be pretty annoying, but they never blamed me for my illness.

The thing that worries me about your situation, is that inflammation can just get so much worse if it's not stopped early.... even for a backup, it is so helpful to have a gi your trust. Hope you can find someone better.

hang in.
Posted 2/17/2012 12:33 AM (GMT 0)
My daughter (she's only 5) but has CD and an ileostomy. She was med free for a year and a half until she started showing signs again. It started last March with white spots on her stoma and liquid output. However there was no fever or pain and all of her blood work came back normal so the doctors didn't really think it was an issue. By August things got really bad. high fevers, extreme pain, she developed a fistula close to her stoma. we entered the hospital for iv steroids but they weren't working at all and within a month she was headed for a resection. They removed 5-6 inches of her small bowel.

I know my child is very young and adults are different, but CD can come on very strong and my only concern for you is that things will get really bad very quickly and you'll wind up needing a resection. It's much better to get on the right meds now before things get out of control. I wish I was more proactive with my daughter. I
Posted 9/18/2012 9:30 AM (GMT 0)

Fruitcake said...
Thank you for your kind words. Crohn's can effect both the small bowel and large bowel as well as other organs.
I did have some problems with small intestine inflammation before. Since I had my colon removed I have had no
problems except for blockage twice and the surgeon gave me mineral oil to drink and within 12 hours it was clear.
My surgeon suggested that I keep mineral oil in the house and if I felt like I had a blockage to try that first. It works!
What caused the blockage? Watermelon, it was suppose to be seedless but it had tiny white seeds. I have decided I
will wait a couple of more days and than if things are not better I will see the doctor.
Bluegrass, my disease sounds like yours, I was told I had both C.D. and UC. I tried every treatment available and
nothing worked. I ended up in the hospital for 27 days and knew the colon would have to be removed but had to
wait until I could make red blood cells. When I say I had bad experiences with doctors that is an understatement.
My doctor did not think I was as sick as I was. This is a problem for all of us. It is bad enough to have a medical
problem that you can not control but most doctors treat us like we are just a bunch of complainers. I found that
they got upset if the prescribed meds didn't work. Even worse was to be in a clinical trial and and be one of the
people that got worse with the drugs you were testing. The one thing I learned from all this is you have to take
charge of your health,ask a lot of questions and chat with people on web sites like this because you are not alone
and usually someone here has had a similar experience.
Fruitcake

Hi Fruitcake.

Sorry to message you hear in a public board. I was just hoping to ask you a question about working out and wearing a weight-belt.

Thanks

FF
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