Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee · ‎09-16-2010

I was diagnosed in November. My medical team includes my primary care doctor that I been with over 20 years, normally very good, and supportive but retiring in two years. I have been with my gastro doctor 2 years.

My medical history includes being a premature baby with cerebral paslsy , base line temperature of 97.6. Previous medical problems and medication have a history of dealing with the rare side effects both.

Asked both doctors to explain UC and help me understand everything. My symptons included the tummy pains that were all over the tummy or on the left side, joint pain all over that and extreme episodes of chills and no fever.Plus the extreme dirreah or constipation. I was told that could be some of the symptons with UC but did not prove that I was havinvg them?! I have been keeping notes on everything .I was prescribed medication that I take 4 capsules in the morning and drink with plenty of water to prevent kidney stones. All my symptoms were worse but after taking the new medication: my feet and legs were swollen and very uncomfortable. Gastro Doctor and nurse had blood work to check my heart,kidney and liver functions : had slightly elevated liver function and blood sugar of 72. They were stating that I had the flu or covid and not any side effects of the UC or new medication?!!! Urgent care nurse stated negative for both, but agreed with me that it was side effects of UC and new medication. She suggested that I start wearing light compress socks and schedule follow up with doctors. Called gastro doctor and requested to stop the new medication, he said no and I insisted. Put on prednisone 10 mg with two in a.m and two in p.m for 21 days and follow up appointment next week.

Two days after visit with gastro doctor, had appointment with primary care doctor.He was upset about the high dose prednisone because I have very bad eyes, bones and muscle weakness. He ordered more blood work to recheck everything and included thyroid test (currently taking thyroid medication 50 mg) to see if thyroid problems causing the extreme cold and fatigue. His test results and his thoughts: heart ok, blood sugar 80 and thyroid normal. I am 69 ( older than both 60 year old doctors). He said all things considered ok for a post menopausal and breast cancer suvivor. My other issue is being overweight and a constant struggle.

Current problems with the prednisone : Swollen red face and increase appetite, very nervous energy and can't sleep. Trying to stay busy and not over eat. Really not happy with the gastro doctor . I hope someone can understand this long post. I am totally frustrated and worn out .

on the bay · ‎03-09-2010

@SouthernBee ,

I'm sorry you are going thru all this.

Really if it was me, I would get a new gastroenterologist. He shouldn't disregard your concerns about the side effects for a medication or make you feel like you have to take it. And you shouldn't ever feel like you have to take any medication. It is your body not his or anyones.

Also I have found over the years as have many friends, that it is very difficult for a gastro doctor to determine what is wrong and the best treatment. I don't know why this seems to be so difficult. They seem to order numerous awful procedures and still don't always know a definite cause or solution. But at least it seems they have given you a diagnosis. Now you just need to feel better.

Not everyone does well with prednisone but it can be a great anti-inflammatory and can be for only a week or so.

It can make you feel super anxious, or chills, headache, many things. Everyone reacts differently and at different times.

Anyway, at least it seems you have a pc who can listen to you.

and were you advised about which foods to avoid with UC?

"If you walk the footsteps of a stranger, you'll learn things you never knew. Can you sing with all the voices of the mountains? can you paint with all the colors of the wind?"

4kitties · ‎03-09-2010

@SouthernBee

I wish I could be of help to you.💕💕

Will be saying a prayer for you to have healing and that those doctors will listen to you and be able to help you. 🙏

“I heard the sound I had to follow”
In Your Wildest Dreams by Justin Hayward

SouthernBee · ‎09-16-2010

@on the bay : Thank you. My gastro doctor is different. When I was in the procedure room for the colonscopy, me and the nurses were struggling to get me in a better position. The doctor came in and upset. My left arm was hurting and had the IV, because the breast cancer on the right side. He said he didn't believe in that junk. Wish you could have seen the nurses face.

He is the size of a Santa Clause and demands that I lose weight. He stated that there is no special food or diet for UC. Before all this started , I was down 14 pounds. I have other help scheduled. I will be seeing a nutritionist on Friday. A exercise coach to help me do my chair exercises correctly. I have mobility issues and use a stand up walker.Everything has been scheduled through a Wellness and Weight loss center and the endocrinologist. I haven't asked for any weight loss pills but extra help and support. I have the Cubi2 Jr. I haven't used it since the UC and all other stress.

SouthernBee · ‎09-16-2010

@4kitties : Thank you. I need as much help as possible. I am desperately trying to stay positive. Trying to laugh instead of crying and not get depressed.

@4kitties wrote:
@SouthernBee

I wish I could be of help to you.💕💕

Will be saying a prayer for you to have healing and that those doctors will listen to you and be able to help you. 🙏

catter70 · ‎10-11-2017

I don't really know anything much about this disease, but I'm sending prayers your way to help as best that can be.

on the bay · ‎03-09-2010

@SouthernBee,

I'm glad that you have other support for all this. And yes if it was me I'd get rid of that gastro dr. He sounds very insensitive, really awful. You shouldn't have to deal with that kind of dr with all this.

"If you walk the footsteps of a stranger, you'll learn things you never knew. Can you sing with all the voices of the mountains? can you paint with all the colors of the wind?"

SouthernBee · ‎09-16-2010

@catter70 : Thank you. I am praying for you to receive a good report and healing.🙏🙏🙏🙏

@catter70 wrote:
I don't really know anything much about this disease, but I'm sending prayers your way to help as best that can be.

SouthernBee · ‎09-16-2010

@on the bay : I totally agree and understand. Currently researching gastro doctor in my area and have one more option.

@on the bay wrote:
@SouthernBee,
I'm glad that you have other support for all this. And yes if it was me I'd get rid of that gastro dr. He sounds very insensitive, really awful. You shouldn't have to deal with that kind of dr with all this.