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Need feedback from past Budesonide users

 
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WhirledPeas
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 22 May 2013

Posts: 135
User's local time:
2017 Sep 22 - 7:14 PM


Food Intolerances : Gluten, dairy, soy, eggs, high fiber, raw produce w/ exceptions pre- May 1 severe flare. 2013 I tested only sensitive to gluten/dairy. C1 test showed some items in 1 category like rice which never bothered me in past.

PostPosted: Thu Jul 13, 2017 1:49 pm    Post subject: Need feedback from past Budesonide users Reply with quote

If anyone has been following my posts, they know I was dealing with painful gas and bloating as well as reflux and gastritis. I started Budesonide 9 mg on June 7. For five days starting July 7 through yesterday afternoon I felt relatively so much better with no significant pain or A difficult symptoms I described above. I had more energy but still got tired if I did too much around the house or had a physical therapy appointment etc. I had to pace myself and rest but so much better! I was feeling more positive and peaceful and was planning on writing a note tomorrow which would've been a week of doing well! Formed BMs. No pain. Just very mild nausea once in a while but nothing to speak of. My massage therapist and my physical therapist noticed a difference in that my muscles were getting stronger and I looked better than before. I had planned on starting sweet potatoes this weekend after my period was over (Tuesday to today - period cramps).

With having my period I have been so very hungry more tha usual. I got delayed at the PT office after I was done and I felt very lightheaded because I had a good gentle exercise regime for an hour plus. Normally under healthy circumstances I need to watch my diet and take it easy when I have my period because I'm more prone to have a regular flare/diarrhea then. My blood sugar was so low and I felt lightheaded which I didn't during the PT session that I drank and way too much coconut water all at once (13 oz. maybe) which I haven't done before. I always sip it. And in the last week I haven't drink much of it at all because my diet was more consistent of the turkey, yellow potatoes in the broth I cooked it in. I should've gone home immediately when I felt that way and dealt with the front desk over the phone later. Insurance stuff. So basically I had too much coconut water plus water and then about 15-20 minutes later had a good portion of my soup concoction. My system got overloaded and I had diarrhea three times within 20 minutes about 15 minutes after eating. The last time I had liquid diarrhea was on May 17. The last time I had a loose broken up p.m. with no pain or cramps was June 21. Before this past week I had various symptoms but not anything close to diarrhea.

It feels like it was the perfect storm of having menstrual cramps, expending a lot of energy and literally feeling starved (hormones make you hungry!) and speeding up drinking and eating in a short timeframe.

My question is have other people who have successfully responded to Budesonide had a fluke episode of diarrhea 5 weeks into being on medication related to their period/cramps and or
making a mistake like I did? In the past, my system would take a 4-5 days of brat diet to calm down then I would add lean chicken or turkey and rice or potato. I skipped dinner last night and drank homemade rehydration solution and today I've had minute rice about a cup every 2 1/2 hours alternating with the rehydration solution. Letting my gut rest.

I'm supposed to see the doctor on Monday and I was so looking forward to sharing the good news that my bad symptoms had subsided and that it was easier since last Friday and feeling so much calmer/positive. Last time I saw him he said if I'm not seeing improvement or I've lost more weight he would want to have and upper and lower endoscopy. I don't think he's going to find anything new since I was so healthy before this. I'm hoping for some encouragement and personal experiences to let me know that this is normal in the healing process on this medication because we all make mistakes. I'm feeling discouraged but trying to stay positive and calm and just go with the flow of feeling so weak knowing it will pass eventually. I miss those 5 1/2 days that were so easy.

I really want to believe I was on the healing path with Budesonide. There's no way those days could be a fluke since my symptoms were so severe before with acid and gastritis and painful stomach gas.

Thank you to anyone who responds and hopefully can be a ray of light and encouragement. I miss having more energy to do things. Hopefully I can eat turkey soon. Feeling this way plus menstrual cramps is no fun.

Wen
_________________
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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brandy
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2011

Posts: 1915
User's local time:
2017 Sep 22 - 6:14 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Thu Jul 13, 2017 2:03 pm    Post subject: Reply with quote

Hi Wen,

I was a 4.5 month Entocort user.

It is very, very commonplace for women to have stool changes around their period.

I've not had the experience that you referenced BUT I CAN SEE HOW IT IS PLAUSIBLE. Dehydration and

Quote:
Insurance stuff.
. Heck, dealing with
Quote:
Insurance stuff
alone is enough to cause WD for those having to deal with our insurance system in the US.

It sounds like overall Entocort is helping you.

Consider perhaps pushing your doctor appointment back 2-3 weeks if that is an option if you want to have more complete feedback for the doctor, i.e. a longer timeline to review with him/her.

Be aware that MC healing has it's ups and downs. Sometimes you don't feel like you are improving but if you look back 8 weeks prior, yup, you've made improvements and are pushing forward.

Brandy
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WhirledPeas
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 22 May 2013

Posts: 135
User's local time:
2017 Sep 22 - 7:14 PM


Food Intolerances : Gluten, dairy, soy, eggs, high fiber, raw produce w/ exceptions pre- May 1 severe flare. 2013 I tested only sensitive to gluten/dairy. C1 test showed some items in 1 category like rice which never bothered me in past.

PostPosted: Fri Jul 14, 2017 8:10 am    Post subject: Reply with quote

Thank you Brandy. I really appreciate your reply and encouragement. 5 days in a row with no significant pains or symptoms beyond getting tired easily felt so good after two months of misery felt like someone turned on the sunshine. With not eating more than rice and broth yesterday the acid stomach and throat came back. Tough decision to start eating solid food again or give my gut a rest. I'm sure the acid will subside once I start eating yellow potatoes and hopefully soon turkey tenderloin again. No D since Wednesday afternoon's 3 x's.

I feel so frustrated with myself, but I must move on and do what has to be done to get to feeling better. A friend who shops at Costco for me once in awhile and has been buying the coconut water sent me LAST NIGHT a link saying that coconut water can be a laxative if drank *in large amounts*. My body tolerated and enjoyed drinking small amounts slowly (11 oz container) over a period of time and NOT near eating time and NOT gulping it. I had ONE container in fridge that was 16 oz. but only 3/4 full and for some reason I grabbed it instead of a smaller one which I always do before PT. I've learned my lesson the hard way. I research everything and did NOT research coconut water for some reason. My friend was watching a Tom Hanks movie and he said something about coconut water being a laxative in the movie so she immediately googled it and sent it one day too late.

https://hubpages.com/health/The-Laxative-Effect-of-Coconut-Water

From my system being off (sour coated white tongue) the last two days AND burning my tongue on soup a few times last week I've been brushing my teeth and tongue gently and the toothpaste I'm using is making it worse. I've stopped the other one and started using the more gentle Dr. Bronner's Cinnamon toothpaste and will try not to brush my tongue for a few days. I'll search the site, but do you have one to recommend that is gentle on an irritated tongue?

I think I'll try 1/3 to 1/2 c. of boiled yellow potatoes today with broth because Minute rice is not stopping the acid and is not satisfying.

Wish me luck and have a good day! I look forward to the day of posting good news and being able to support and encourage others.

Wen
_________________
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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WhirledPeas
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 22 May 2013

Posts: 135
User's local time:
2017 Sep 22 - 7:14 PM


Food Intolerances : Gluten, dairy, soy, eggs, high fiber, raw produce w/ exceptions pre- May 1 severe flare. 2013 I tested only sensitive to gluten/dairy. C1 test showed some items in 1 category like rice which never bothered me in past.

PostPosted: Fri Jul 14, 2017 8:11 am    Post subject: Reply with quote

P.S. The insurance conversation wasn't bad. It was just that I had to run to the loo and I was so very very hungry. Next time I will just go home and tell the lady I'll deal with it later. Me first.
_________________
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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jlbattin
Rockhopper Penguin
Rockhopper Penguin


Joined: 30 Jun 2015

Posts: 588
User's local time:
2017 Sep 22 - 6:14 PM


Food Intolerances : gluten, soy, dairy, egg, green beans, olive oil, raw nuts, and probably more but I'm still discovering
Location: Colorado

PostPosted: Wed Jul 19, 2017 6:28 pm    Post subject: Reply with quote

I've used Budesonide off and on for 2 years now..................

What I got out of your post is STRESS! Stress is not your friend no matter what medication you are taking............I had bouts of diarrhea while I was on Budesonide when I let my emotions take over.............when I went back to school for the first time after diagnosis was a biggie............
_________________
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Soy free, Dairy free, and Egg free since July 3rd, 2015
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