Recently taken-down friends

KS1905 Wow! That’s what I was expecting . I don’t even mind getting up once it twice during the night. Have you been treated for your ulcers in the pouch ? And I know you mentioned before you were on two different antibiotics for the pouchitis . Are the two related pouchitis ahd ulcers inside?
Today been a great day so far I have only gone 4 times all diarrhea which is fine with me because it doesn’t cause spasms or major pain. I am drinking Gatorade to keep up my fluids yesterday and today.
But I only ate half a bagel this morning my stomach been off the last few days . Ordering Chinese with some family remembers tonight for dinner so I will see how that goes.

KS I hope it’s not chronic, sorry that you have to go through all this as well.
That’s a lot of meds you were on also.

My doc needed to make sure there was gas, poop, pee and able to eat and hold down food.

Research -yea they want to see poop,gas and pee. Pain Meds kept me in for extra day,they can bind u up so be careful. Be careful of too many meds at home. I had to go back in bc of blockage from painkillers. I needed help to bind me up after I got home after blockage problem. Dr gave me lomitil script plus Imodium. Just keep posting here and let us know how your doing. Happy Thanksgiving

valli1234 said...

KS1905 you said you are now on stelara that is a biologic right did you try others or just this one. Just looked up the price it says 10,000 per month which I dont think my government will pick that one up. They did pick up humria mind you. And is it for pouchitis and your ulcers.

I tried Cimzia prior to Stelara for my pouchitis/cd and I was getting a side effect from it that I got from every other anti-tnf biological so I had to discontinue it. All of the other biologicals were used when I had a colon.

There are Canadians on the CD forum who are being covered with Stelara. http://www.multivu.com/players/english/7999151-janssen-stelara-crohns-disease/

I'm not saying that Valli is going to have chronic pouchitis or CD. I'm just trying to say that it can be a rough road at first and it takes some time to find the right mix.

I stay around here to let people know that living with chronic pouchitis isn't nearly as difficult for me as it was living with UC and a very bad colon.

Hi guys I did write a reply back two days ago and I am assuming I didn't hit post since its not there. Notsosickly girl I agree with what you are saying I have no intention to jump the gun and assume its chronic or I need biologic s at this point or any time at all. I was just curious to see what KS had been using. At this time I know am early into my new pouch I did read it may take up to a year for everything to adjust. I am truly happy for those who have adjusted within a few weeks or a month or two. I am still having the same symptoms pressure, pain, urgency and diarrhea most of the time and my bathrooms trips remain the same over 15 times a day. I have an appointment Wednesday with an gynecologist regarding my endometriosis. When my surgeon went in to create my J pouch she discovered I was covered in endometriosis and assumed I knew I had it which I didnt, we are pretty sure my colitis pain masked that pain. Right now I would like to find out if my pain and pressure down there is caused by the J pouch and the ulcers or is it the endometriosis. Hope everyone else is doing well and getting ready for Christmas. I am heading to Florida the following week for 7 days, I love Disney and the beach I am having such a hard time with this pouch I decided life is short and another vacation break is needed. Here in Canada this time of year the sun hardly shines the weather is cold and depressing and I hate it. Since I lost my Mother a year and half ago and my UC came out of remission I decided to hell with everything I want to enjoy my life and travel more I will never be a millionaire but I can say the family and I created special memories together as a family.

valli, have you gotten your biopsy results? Any treatment plan? I hope you get answers soon. it's tough adjusting, and it takes some patience. Dealing with pouchitis is a setback but I have seen others have it, take a course of antibiotics, and go on with normal pouch function.

woogy & colitisresearch, how are you both doing?

NSSG- tomorrow marks one week since takedown surgery and I think I’m doing OK all things considered. I only spent only 2 days in the hospital which totally shocked me. (Spent 11days for step for 1 out of 2). I’m at home taking it easy. I’m having pain around my incision (stoma) site.. which I’m managing with OTC meds. As expected I’m having a lot of BMs per day. I’m using a portable bidet and ilex to keep butt burn at bay. I take benefiber daily to thicken up stools. My nurse told me today on the phone that I can start Imodium if I wanted. This forum has been invaluable in preparing me for these surgeries! Thanks you guys!!

Valli after hopeing my wife would change after many years of therapy, myself and the therapist understand that she won't change.So after 23 yrs of marriage I'm done trying to make things better.Wife is a dangerous enabler to my 3 kids[23,21 and 18yo] since they were kids.Reason i say this is we each will walk away with good amt of $ and i haven't been able to go on vacation bc of UC .So I'm looking forward to peace in my life and a nice vacation in the future

NSSG thank you for your thoughts my surgeons office canceled my appointment the day before saying the surgeon had an emergency surgery coming up the next day . They rescheduled the appointment for Dec 17, which is fine . Things have seemed to settle down a bit. I am still going around 15 times a day the only difference is the spasms after going have subsided, plus the pressure when walking or standing has slightly eased up . It’s not gone completely, yet I see a dramatic difference from a few weeks ago. Off to Florida on Friday hoping I can enjoy a little sunshine .
3TC I am sorry about your ex and her enabling your children . Divorce does get easier and less painful as time moves on . Don’t change you , it sounds like you have suffered emotionally and health wise these last few years . Now that you are feeling well with the pouch take some time for yourself.

Hey all. It's been 3 weeks since my takedown. Last Monday I finally got the catheter out and things have improved since then. I'm going between 6-8 times a day but it's formed. And only getting up 1-2 times at night. Haven't had D for about a week now which is nice. Had some butt burn the first week but that was it. I still have pressure but I noticed it only happens if I don't empty my pouch fully. I'm actually starting to feel normal again. I started working from home this week so that makes the day go by. Probably won't go into the office until after Christmas.

Valli, sorry to hear you're having a rough time still. I hope your doctor can figure it out and get you some relief.

notsosicklygirl said...
Keith might be right, if you can't get in to see the surgeon, maybe a GI can help. I have never been told I need to get any follow up though personally. I would imagine once you get things figured out, you may or may not need follow up into the future.

Cancer screening — my surgeon was insistent on it but my GI quoted a study to me about people with Jpouches. It’s still good to be safe. I’m going next week for one.