Well it has been a long journey since my take-down in August I listened to my surgeon say everything was normal and it will just take time. There is no way what I was experiencing was normal or right. An average of 20 BM or more a day uncontrollable spasm in the anal sphincter and pelvic area. Butt burn like no one should ever have to experience and just a feeling of unwell almost 24/7 . Since working with a new gastro in December he did another scope saw I had cuffitis in the rectum about 7 cm. I tried Cipro and Flagyl and both seemed to work but once I got off after 2 weeks the symptoms all returned, I would have gone back on but I was experiencing heart palpitations so I didn't want to back and suffer with a different issue. After that, I tried 2 more and they didn't seem to help. I started prednisone Friday and as of two days ago, I feel fantastic not 100% but close. No more spasms and my BM are limited to a few times a day and the very best part is I slept last night from 12 am to 6:00 that is a whole night not waking up like the past 8 months 3-4 times a night and almost crawling back to my bed in pain. He started me on 30 mg and I am to decrease it by 5 mg a week. I am hoping this will do the trick. Now when I see a post about someone suffering from UC and they are thinking of getting the surgery I can actually look at it and think or voice that it has made a difference in my life for the better. In the last 8 months I have cried and dealt with so much pain, my family has suffered, my career everything went downhill. I regretted having the operation almost every day, I know I had no choice it was life and death for me at the time. I was losing so much blood everyday they had to limit my blood transfusions and my colon was 100% all ulcerate I had to have the surgery. But every day since August I have regretted it and now finally I feel like my old self back and it feels fantastic. Everyone said I would feel like a new person after the operations and now I finally do. So that's my update.
Thank you for all the posts I have received all these months from my fellow J pouchers and UC folks they got me through some of my lowest points and this site has made a world of difference.

Glad to hear you are feeling better. Pred is magic to help with symptoms but hopefully your doc has a plan on what to do once you are off of it so you don't go through hell again.

Ok Valli I'm calling the newspaper. Need to know what Headline do we go with??? Valli finds the Cure or Valli finds the right carpenter to fix the Back Door or Valli no longer full of sh.........pain or Valli no longer has a Pain in the As.............Back Door. I need a smile young lady The greatest news. Think we all feel a little better knowing one of us is not in pain. Now your headline will throw Trump off front page so which one we go with?? Good luck

ks1905 said...
At least you found some relief — I hope it’s permanent and the Pred has given your cuff the time to help it heal.

Enjoy a good night of sleep. That’s the best thing for me, I never have to wake up and run to the bathroom at night.

Thank you KS you were lucky because running to the bathroom was never fun . Not having the best of evening tonight tons of gas someone suggested beno tablets so I bought a bottle I took them two days ago forgot yesterday and today I have been full non stop gas pains which is now causing some back door pain but still better then before.

notsosicklygirl said...
I am happy to see you feeling positive valli. I hope ks is right, and you get a long break.

Thank you NSSG I thinking the rest of my life break ..a girl can dream lol

songlady said...
O gosh, Valli, I am so glad you have found some relief! Ditto what the others said. I hope this enables the cuff to heal. Enjoy your weekend!

Ohh thank you Songlady I too hope it heals . How are you feeling ?

Well it’s official I had a night from hell . Later in the day I had a fair amount of gas which had subsided the last few days . Well last night it tore me apart each trip to the bathroom was pure agony the gas pain and the internal pressure was unreal. I had 5 epsom sitz baths last night then crawled back to bed with a heating pad attached to my ass. Even this morning the gas is unreal, taking swigs of pepto-bismol to see if that helps.

Ok I don’t eat a large amount of refined sugar but I also don’t avoid it . Coujd that be the trigger
I had a bowl of ice cream last night . I can go a year without ice cream but this week I had two bowls one a few nights ago and again last night. Plus a few Easter jelly beans
Yah not the smartest move I know .



Because I have no idea what else

You could be lactose intolerant. Try some Lactaid

Hey Valli,

Sorry to hear you're back in pain. I have also noticed increased gas if I eat sugar and I have a lot if I have ice cream. I don't think it's the dairy because I have milk in my coffee and I'm ok. I think it's the sugar. I'm trying to not have sweets to see if I feel any better. It's going to be hard, I have a really had sweet tooth.😞

I really hope you find relief soon.

Oh, valli! I am so sorry!

I am having a day with more frequency, urgency, and gas today, and I had ice cream last night also. But, what I don't understand is, usually the food goes through me in about 6 hours these days. (If I have salad with dinner at 6 pm - I can tolerate iceberg lettuce at this point - I see it in the toilet at midnight.) So how would a small bowl of ice cream at 8 pm hit me at 3 pm the next day?!
(In fact, my issues today have been this afternoon, and I think I can pin the cause on the leftovers I had for lunch.)
Likely cutting way back and then adding things one at a time would be a good thing to do. Ugh. Let us know how you do tonight!
The other thing I've noticed is that a single "food indiscretion" usually is fine, but two or three in a row, two or 3 days in a row... that seems to lead to trouble.
Keith - I feel complimented that you learned something from my experience! usually we are the ones learning from you. At this point I am OK with eggs, especially if they are but one part of the meal. Quiche seems fine, for instance. I guess the other ingredients dilute the egg effect..?
Champ - you are amazing. Congratulations for getting to this point in everything!

songlady said...
Oh, valli! I am so sorry!

I am having a day with more frequency, urgency, and gas today, and I had ice cream last night also. But, what I don't understand is, usually the food goes through me in about 6 hours these days. (If I have salad with dinner at 6 pm - I can tolerate iceberg lettuce at this point - I see it in the toilet at midnight.) So how would a small bowl of ice cream at 8 pm hit me at 3 pm the next day?!
(In fact, my issues today have been this afternoon, and I think I can pin the cause on the leftovers I had for lunch.)
Likely cutting way back and then adding things one at a time would be a good thing to do. Ugh. Let us know how you do tonight!
The other thing I've noticed is that a single "food indiscretion" usually is fine, but two or three in a row, two or 3 days in a row... that seems to lead to trouble.
Keith - I feel complimented that you learned something from my experience! usually we are the ones learning from you. At this point I am OK with eggs, especially if they are but one part of the meal. Quiche seems fine, for instance. I guess the other ingredients dilute the egg effect..?
Champ - you are amazing. Congratulations for getting to this point in everything!

Hi song have you had problems with food all along or just now . So was it your ice cream or leftovers ?

All I know is I am limited on what I can eat even the slightest sign of flavour with spice I am in the pooper crying in pain.
Last night I was ok
I truly think it was the ice cream , I will never ever touch it again not after a night and morning of pain gas and burning .
Still not 100% but better then a week ago. Trying to stay away from dairy and sugar this week.
I think ice cream is off the table for both of us song for a bit.
We could do Piña coladas instead 👍🏻

ks1905 said...
Don’t give up on ice cream, try it again and in moderation but make sure you are doing well before you try it.

Me, personally, I would stay away from the cheap stuff with all that artificial stuff in it and go with a single flavor that doesn’t give you issues. Coffee and chocolate ice creams will have some caffeine in them.

Keep it simple, small and if all goes well then add more.

I’d try some Lactaid with ice cream and then try it another day without Lactaid.

I will try it with the lactaid once but after Friday’s night I am so scared to try regular ice cream again .

I so badly want the prednisone to work that maybe I am just looking at blaming any food . I ate very well yesterday ( Sunday ) and I have been on the pooper 3 times so during the night and having fair amount of gas pain plus that doesn’t count the evening 3 then and at least 5 during the day . So I haven’t settled down yet .
I know you suggested it before Fasting do you think that is something I should consider ?

Uniform Charlie said...
Lots of ice creams contain the emulsifier polysorbate 80, which has been mentioned here over the years as a possible gut irritant. I wonder if homemade ice cream would bother you? Ice cream the one and only food on my NEVER EVER eat list since I got UC. Absolutely kills me.

Well it’s on my list as well now with half of the foods of the world.
I would be willing to try it once again when I know I have no inflammation Or if I never have it again it’s not a big issue .