topic Anyone dealing with Ulcerative Colitis and a flare up? in Wellness

Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 11:43:49 GMT

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 .

Re: Anyone dealing with Ulcerative Colitis and a flare up?

on the bay — Tue, 09 Jan 2024 12:20:19 GMT

@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?

Re: Anyone dealing with Ulcerative Colitis and a flare up?

4kitties — Tue, 09 Jan 2024 12:25:28 GMT

@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. 🙏

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 12:42:43 GMT

@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.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 12:46:18 GMT

@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. 🙏

Re: Anyone dealing with Ulcerative Colitis and a flare up?

catter70 — Tue, 09 Jan 2024 13:14:24 GMT

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

Re: Anyone dealing with Ulcerative Colitis and a flare up?

on the bay — Tue, 09 Jan 2024 13:23:11 GMT

@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.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 13:25:13 GMT

@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.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 13:28:03 GMT

@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.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

vermint — Tue, 09 Jan 2024 13:31:05 GMT

@SouthernBee I don't really know anything about UC, but sending prayers that you can get the help you need to deal with this!

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 13:53:33 GMT

@vermint : Thank you. I appreciate this . Sending Blessings for you.🤗🙏

Re: Anyone dealing with Ulcerative Colitis and a flare up?

4kitties — Tue, 09 Jan 2024 14:00:56 GMT

@SouthernBee

I hesitate to post this as I have no medical or nutritional training,but I just wonder if an anti inflammatory diet could be of help. I personally think that dietary changes can benefit certain issues. Not a cure all, but can maybe help.

I have a good friend that has an inflammatory condition and she has seen some relief with following certain dietary changes. Avoiding certain oils and foods.

I bet your nutritionist can help with this when you meet with them.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 14:31:38 GMT

@4kitties : Thank you and I appreciate this information. This is another reason for seeking other options.

@4kitties wrote:
@SouthernBee

I hesitate to post this as I have no medical or nutritional training,but I just wonder if an anti inflammatory diet could be of help. I personally think that dietary changes can benefit certain issues. Not a cure all, but can maybe help.

I have a good friend that has an inflammatory condition and she has seen some relief with following certain dietary changes. Avoiding certain oils and foods.

I bet your nutritionist can help with this when you meet with them.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

luvzchiz — Tue, 09 Jan 2024 14:44:29 GMT

@SouthernBee I am sending good thoughts and prayers to you. I agree with those who have said that you should see another doctor who hopefully will help.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

Terrywu — Tue, 09 Jan 2024 14:53:30 GMT

Good thoughts and prayers coming your way. Maybe a new gastro doctor would help.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

geezerette — Tue, 09 Jan 2024 14:54:47 GMT

@SouthernBee

The gastroenterologist really said there is no special diet for UC?

You do need to see that nutritionist.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

Cheriblossom — Tue, 09 Jan 2024 15:08:55 GMT

I know of someone who has dealt with this disease for many years. Remission, then flare ups. Finally found a good gastro doctor connected to a major university. It took time to find the right doctor. Check this website for good community support. https://www.crohnscolitisfoundation.org/community-support. There are a lot of people suffering with ulcerative colitis and crohns disease.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 15:17:50 GMT

@Terrywu : Thank you. Totally agree.

@Terrywu wrote:
Good thoughts and prayers coming your way. Maybe a new gastro doctor would help.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 15:21:13 GMT

@geezerette : Yes and some other crazy stuff. He doesn't believe in nutritionist but stated that I need to lose weight.

@geezerette wrote:
@SouthernBee

The gastroenterologist really said there is no special diet for UC?

You do need to see that nutritionist.

Re: Anyone dealing with Ulcerative Colitis and a flare up?

SouthernBee — Tue, 09 Jan 2024 15:26:38 GMT

@Cheriblossom : Thank you for this information and will be reading. 1996 , I was diagnosed with Crohn's and was in the hospital for 3 days. Was put on a high dose of prednisone for 6 months and then other medications. The colonoscopy 5 years ago indicated IBS and recent one : UC.

@Cheriblossom wrote:
I know of someone who has dealt with this disease for many years. Remission, then flare ups. Finally found a good gastro doctor connected to a major university. It took time to find the right doctor. Check this website for good community support. https://www.crohnscolitisfoundation.org/community-support. There are a lot of people suffering with ulcerative colitis and crohns disease.