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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 11/25/2007 12:19 PM (GMT -7)   
brand new here. my daughter age 19 just diagnosed with keft side uc. she has been in flare for a month now with bloody d many times a day. dr put her asacol 4 ppills 2x daily. she was home for thanksgiving had colonoscopy and went back to college today still going a nd bleeding. the dr didn't tell us much, i feel crazy about her going off with this. he said that the asacol could take 2-3 weeks if it is going to work. but he didn't advise us on diet nutrition and at what point do we do something else.he just said make an appointment for her next break in mid december. is this normal? do we need someone more communicative? she is a thin person to begin with and the weight was dropping before our eyes this week-end. i don't want to frak her out, and she wanted to go back because they have finals coming up. what should i do next.and does anybody get into remission and stay there? thanks for any answe i hope i can find my way back here to any replys you may give. thanks in advance.

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 11/25/2007 12:57 PM (GMT -7)   

Welcome...sorry to hear about your daughter. Everyone here has a different stories and advice, but we are all very encouraging and helpful, so please feel free to visit here as often as you like. There is probably no question that someone here won't have some advice for, or an experience to share what has worked for them. I hope you can find help for your daughter here.

Me.... I had UC (in and out of flares) for 8 years and my doctors tried a lot of different drugs, usually when the ones they prescribed didn't work or eventually stopped working. My lifesaver was Rowasa, a mesalamine enema. My symptoms disappeared within days of starting it, but I didn't really like the fact that I had to continue on it or my symptoms would come back. Actually, at one point, Rowasa's effectiveness decreased the longer I was on it. I point blank asked all my doctors about diet, since I started makng connections between the foods I would eat and my flare-ups, and they always said diet didn't affect my symptoms, just don't eat what I found to bother me, which at that time was dairy, onions, lettuce, bread. I have since realized on my own that I cannot tolerate yeast in any foods, even now. When I finally decided to make a conscious change to my diet after finding out, again on my own, that UC symptoms can have a fungal etiology, within 2 weeks I noticed a remarkable improvement, enough for me to continue watching what goes into my mouth, even today. Certain foods (sugar, yeast, grains) can feed fungi, or contain mycotoxins (corn/peanuts). And, when I told my last doctor about how I got well, he said it was a coincidence and passed me yet another prescription as I headed out the door. As I sit here typing, I am drug free, symptom free. I won't say that I am "cured", but I do suspect that if I choose to go back to my old way of eating, I will most likely incur my old UC symptoms again. For me, limiting yeast, processed sugar and my grain intake is key to staying well. It is a conscious daily effort. Nothing worthwhile comes easy in life :) That's not to say I never eat those foods, I am only human :), but I don't make them a regular part of my diet anymore. I am not the only one who has been helped with monitoring their diet. Maybe they will jump in here. As well, there are others who, for whatever reason, claim diet change has not helped them. I leave it with you. If you want to email me, I can be specific what I followed to get well again. Take care. I wish your daughter the very best.


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/25/2007 2:34 PM (GMT -7)   
Just for a point of reference, here's what my doctor (who is AMAZING and has exceptional training) does when I have bleeding and am losing weight:

1) up my oral drug dose, if possible (This we have not done in a while)
2) Prescribe a rectal med (Rowasa enemas, Canasa suppositories, or Cortifoam)
3) Ask me to call back in a week to check in.

After a week, if everything is the same, she will usually tell me to use the rectal meds twice a day, instead of just at night. She'll tell me to try that for 3-5 days and check back with her.

I hope this is helpful. My doctors have *never* sent me off with just some pills to take while I'm bleeding and said, "see you next month." The pills should help eventually, but bleeding can usually be best controlled quickly with rectal meds. No one enjoys using them but they really do work. It might be difficult for a 19 year old to deal with, but hopefully she could use them to get this flare under control.

Questions about diet are difficult. Everyone is different. If you think she isn't getting enough nutrition, you could encourage her to drink protein drinks (non-dairy) so she doesn't lose any more weight. I've had the same problem and I drank Ensure. It was hard to find the non-dairy ones but they were pretty tasty.

Let us know how things are going.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 11/25/2007 4:50 PM (GMT -7)   
to kime123 and julee, both of your answers are great information. I'm working on getting her to understand the diet , but hte suppositories seem to giver her more diarreah in the night, she tried the canasa ones and they gave her bad cramps and got her up to the bathroom 5 times a night, is that something she will get used to, i do understand therir importance along with the asacol pills. would the rowasa suppositories be more comfortable, and what is the differense?thank you again.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/25/2007 5:07 PM (GMT -7)   
Hi Please, when I was diagnosed, I was handed a pamphlet and sent on my way with sulfasalazine and rowasa enema prescriptions (that GI retired a month later and I had to find a new GI, I'm on #3 in 7 yrs).

I second everything above and the rowasa enema's really helped me when I was first dx'd. At the begining they are hard to hold in but after the first week or so the benefit to me was amazing. I did really good for 7 years after that as long as I took all my meds (I was 24 when I was dx'd and thought I did not need to take them all the time, I will not do that again, I would have small flares). Now I had to find some different meds but I am doing good. I Just wanted to let you know that once you get this flare under control your daughter can have a very normal life, I have and do.

Find the best Doc you can (advice I need to follow too!) and keep a notebook of all the meds, what works and what doesn't and question everything.

I am only in my second bad flare so my advice may not be the best, but it took me a couple of weeks with the enemas recently to start to get my flare under control, meaning I still had some bad nights getting up every hour cramping w/diarreah and blood before they worked. I think there is something called rectal foam which may be easier to hold in. Also I did the enema's in the am a couple of times b/c the nights were worse for me.

HTH!
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 11/25/2007 5:10 PM (GMT -7)   
I have used both, and had better success, and reduction of symptoms, with the Rowasa enemas. They are more messy :) (squirting a liquid substance as opposed to a solid), but once you get the hang of it, seems to work great. Maybe she can't tolerate them, but don't give up too soon. It is all a learning experience. Just try to hold it in as long as possible. For some reason, I never had a problem, even the first time. You need to relax, and squirt real slow, maybe start with half a bottle. (What does Quincy think here. She is an expert in this area!) It may feel like a burning, or cramping at the beginning, but try to breathe through it with long, deep breaths. The key is to relax. It ain't a walk in the park, that's for sure. And have an old towel underneath, as it can stain. I swear by the Rowasa. They were like gold to me!

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 11/26/2007 7:30 AM (GMT -7)   
thank you for your replies.

tats
Regular Member


Date Joined Aug 2007
Total Posts : 54
   Posted 11/26/2007 9:50 AM (GMT -7)   
Hi, sorry to hear about your daughter. I was diagnosed with UC @ 21, and have been living with it for 3 years now. Your doctor doesnt know what he's doing or saying.  If your daughter is bleeding and losing weight as we speak, i dont wanna scare you but she might end up in the hospital with a low blood count and dehydration.  I'm not trying to scare you, but i weighed 150lbs when i was diagnosed and within 3-4weeks i was down to 120lbs with a blood count of 6 (normal blood count 12-15). I had a blood transfution and they didnt feed me for a week..Okay so what your daughters best bet would be going on prednisone. Prednisone will stop her symptoms and give her some life back, along with Asacol and maybe the enemas.  Get a new doctor asap...And i'm tired of doctors saying it has nothing to do with your diet. It really does have alot to do with diet. It's just really hard to follow a bland diet. well good luck.

diagnosed with ulcerative colitis 6/05
 
CURRENTLY TAKING
 
40MG PREDNISONE
9 ASACOL
 
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