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Ulcerative Colitis
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Posted 4/1/2012 5:00 PM (GMT 0)
I am new to this board, my husband suffers from UC. He also is fighting brain cancer.

He takes Lialda and rowasa as treatment for this. He stopped taking the rowasa because he was having trouble retaining the liquid and was just not feeling well, and he has not been consistent with taking the enemas.

In the meantime, he is having a flare. We go from explosive diarrhea to constipation. He has nausea and pain. He has not been eating, but will drink Ensure and some high calorie nutritional drinks. When he is having the diarrhea episodes, he actually feels a little better because the pressure is off a little bit and he doesn't feel as bloated, etc., and he will eat a little. I insist that he drink a lot of liquid because we have already been to the hospital dehydrated several times.

He is taking Temodar and Avastin for the brain tumor. Either of these meds can cause constipation. In addition, there is a risk of bowel perforation with the Avastin which I worry about constantly.

We've been to see his docs, and no one seems to be concerned that he is not eating, his GI doc has not added or changed any of her treatment plan for the UC other than adding a small amount of fiber and a probiotic to his pill cocktail. We've been fighting this flare now for about 3 weeks.

I don't know much about UC, so any suggestions for helping him would be appreciated.
Posted 4/1/2012 6:22 PM (GMT 0)
Be careful with the Ensure drinks. They contain carageenan and that has been shown to cause UC in rats and also gastric discomfort.

Is he taking anything for nausea? Zofran really helps me hold in foods and liquids. Just try to have him eat a low fiber diet which helps during a flare. The less food going into the colon, the less chances of rouphage scraping against the inflamed colon walls.
Posted 4/1/2012 6:32 PM (GMT 0)
Yes, he takes Zofran for nausea. If he doesn't drink Ensure, he doesn't get anything but Ginger Ale. He will not eat - when he does eat it is only a few bites. This is a big man. He needs his calories. Doc says the Ensure is better than not eating at all. This is why he is drinking the Ensure.
Posted 4/1/2012 6:47 PM (GMT 0)
Ok. Just wanted to let you know. That's what my doctors have all wanted me to drink but they didn't know about the carageenan thing. There is also another high protein drink by Jini Patel called Absorb Plus. I had problems with the whey protein in it but besides that, they taste really good and have a lot of calories. They also have the consistency of milk.

Can he drink broths or pureed soups? Even really thin smoothies would be better than nothing. I know it's really hard to eat during a flare but he HAS to keep getting in calories or else his body can't repair itself. I got down to 90 lbs last year during my year long flare and eating was the hardest part. Just try adding small amounts of soft/pureed foods a day. I'm sure he is really weak right now, too. Does he get bloodwork done consistently to show any deficiencies?

Also, I had to go to Medi Help about 2 weeks ago because of bloating and gas. What has helped a lot is Gas X. I had never taken it before but that with the combo of Flagyl has helped tremendously with bloating.
Posted 4/1/2012 7:52 PM (GMT 0)
carageenan doesn't cause UC....it, in high dosages, induces "colitis" in mice. These mice are bred to be very sensitive as well....

q
Posted 4/2/2012 2:11 AM (GMT 0)
Where can I get the Absorb? It sounds like what he needs.
Posted 4/2/2012 2:51 AM (GMT 0)
Is his tumor operable, and how long has he had both?
Posted 4/2/2012 3:13 AM (GMT 0)
I am so sorry about your husband's cancer dx. I assume his GI doesn't want him on any biologics/immunosuppressants because of this. Which meds is he on, where is his UC located (which part of the colon is affected?) and how long has he had it. He might be able to control it with enemas if it is lower down in the colon.
As for absorb plus, you can buy it on ebay sometimes for less (it's pricey), otherwise here's the link:
http://www.holistichealthshoppe.com/
Posted 4/2/2012 3:42 PM (GMT 0)
I am concerned that your husband's drs aren't worried about him not eating..that's kind of a big deal. Are his UC symptoms getting worse, better or about the same? He must have lost some weight. Make sure his dr really knows how bad your husband is doing, sometimes with this disease you really have to advocate for yourself/the patient and the dr might not just get how bad things are unless you really spell it out for them. They probably see his UC as secondary to his brain cancer(so sorry to hear about that by the way), but he does deserve a decent quality of life and maybe he needs more UC meds to get through the day.
Posted 4/4/2012 1:50 AM (GMT 0)

allswell said...
Is his tumor operable, and how long has he had both?

No the tumor is not operable. He was diagnosed in July of 2011.
Posted 4/4/2012 1:52 AM (GMT 0)

aquafly79 said...
I am concerned that your husband's drs aren't worried about him not eating..that's kind of a big deal. Are his UC symptoms getting worse, better or about the same? He must have lost some weight. Make sure his dr really knows how bad your husband is doing, sometimes with this disease you really have to advocate for yourself/the patient and the dr might not just get how bad things are unless you really spell it out for them. They probably see his UC as secondary to his brain cancer(so sorry to hear about that by the way), but he does deserve a decent quality of life and maybe he needs more UC meds to get through the day.

I am concerned that the doctor isn't too concerned about him not eating too. One day he seems better and the next day not so much. Time to get back on the phone with the doctor in the a.m. He did eat a little today, but not anything substantive.
Posted 4/4/2012 10:14 AM (GMT 0)
I am so sorry for you and your husband. I agree with aqua, how long has he had uc?
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