HealingWell
Search Close Search
☰

Officially diagnosed with UC

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/18/2012 6:21 PM (GMT 0)
I was actually officially diagnosed with UC yesterday after a flex. sigmoidoscopy. I was already on Asacol and VSL#3 and now they are suggesting prednisone. He wants to start me off at 40 for a week and then wean me down each of the following weeks until I am off totally. I am really worried about this. I have not done well on steriods in the past, have struggled with low and high blood sugar in the past, and am only 60 lbs right now so the dosage scares me. Any thoughts? 
Posted 10/18/2012 7:21 PM (GMT 0)
You're only 60lbs? How old are you? I'm just curious.
Posted 10/18/2012 8:09 PM (GMT 0)
tmc,

Welcome to the forum.

I am sorry about your recent diagnosis.

Yes, I agree with therearemiracles... you're only 60 pounds?...

If you've struggled in the past with high and low blood sugar while on steriods, you're going to have to be extra vigilant to make sure you don't have any issues.

What about diet?

Other supplements?

Have you had your vit. d3 levels checked?

 

Posted 10/18/2012 8:11 PM (GMT 0)
What are your symptoms like at this point? I would try some rectal meds too.
Posted 10/19/2012 1:53 PM (GMT 0)
Yes I'm 60lbs and I am 33. I've struggled Anorexia for a very long time. This is actually the most I have weighed in awhile. My diet currently consists of promote tube feeding. I am on around the clock tube feeding which complicates things for me along with the fact that my weight is so low. My symptoms are horrible gas, abdominal pain, diahrrea, and I did have bleeding but that stopped when I went NPO for my procedure. My Doctors nurse said there was significant ulceration in my sigmoid colon. She suggested I try the 40mg for three days, call the office back and go from there
Posted 10/19/2012 2:07 PM (GMT 0)
some very sensitive to steroids can have an odd effect/reaction from even initial dose. in most cases the side effects show up over longer term usage. A taber lasting a month would be less likely to show these kinds of long term side effects.

However your physiology is very unique. I am not sure anyone here can offer advice appropriate to you situation. Between the tube feeding and the extremely low body weight, not to mention what other odd metabolic processes must be engaged as you hover just above starvation.

I think I would want to be taking those steroids in a hospital - at least for the 1st week, until any sensitivities were explored.
Posted 10/19/2012 2:15 PM (GMT 0)
That would be optimal for me except I just got out of the hospital after being there for a year. It's been kind of a rough year. Insertion of a J tube, two bowel obstruction surgeries, one kidney stone removal, then get out of the hospital to discover I have UC. I'm just trying to take things one day at a time but you are right, a lot of the modifications that members make on here are a little hard for me to make since I for the most part am not eating a lot by mouth. Part of me wonders if I could work on getting this more under control if I were. I've just not been capable of eating enough by mouth to gain weight. We used TPN for awhile which worked great (helped me gain about 25 lbs) but it began to kill my liver so we had to find something else. The goal is to get me back to eating so as I begin to do that are there any particular foods that can cause flare ups?
Posted 10/19/2012 4:14 PM (GMT 0)
Everyone's sensitivity to food is unique to them, and generally we'd recommend keeping a food journal. However, you aren't eating anything so that wouldn't be very useful. You might consider avoiding the common gastro demons, lactose and gluten, as you start eating. Avocado are healthy, high calorie and easy to digest. Rice (I'd avoid brown and stick to white until you have more experience) is good. White fish, chicken and broths should be easy to digest also. I like banana and applesauce for easy to digest fruits.
Posted 10/19/2012 11:58 PM (GMT 0)
Thanks for the advice. I have been lactose free for about 7 years now so will continue with that but never have tried gluten free.  The foods that I have eaten with the tube feeding have been things like some fruits and white rice, pretzels (which probably aren't gluten free), and applesauce. What is the general consensus about soy? That has been what I have used in place of dairy/lactose products. After talking with my surgeon today, it was decided that eventhough I was of low body weight, the amount of inflamation I had justified the amount of predinsone. They thought it would be better to go on the heavier step down protocol and get effects than to go on a lighter dosage regimine and have it be only partially effective or ineffective and have to go on another regimine to get it under control. I took my first dose today at noon and didn't have anything too bad yet so I will just continue on tomorrow. Thanks to everyone who has responded. I appreciate anyone's experience and understand that everyone is different. That I have clearly learned from reading other posts. But am sure you all understand that sometimes any ideas are better than having none =)

 

✚ New Topic ✚ Reply