Hey everyone! My name is Sarah and I am new to this site. I am 27 years old and was diagnosed with UC at 18 years old. I battled UC for 8 years (natural, regular medical interventions, diet, stem cell, fecal transplants - you name it we tried it), but finally decided to have a total colectomy in October of 2017. The construction of my J-pouch was in January of 2018, and my reversal was April of 2018. The first week was awful, but it slowly got better over time as my J-pouch adjusted, with the added benefit of Lomotil. Things were actually VERY good this past April/May (2019). I was on a natural regimen and used metamucil twice a day, still used Lomotil PRN, and I was sleeping very well at night...only 1-2 BM's a night and during the day I was well controlled. I was amazed at how great I felt! Then disaster struck 2 months ago when a plate of chicken fajitas decided to betray me....
I wound up with food poisoning, and that night I was ralphing an pooing my brains out. I am stubborn so I figured I would just puke one more time and be good, but nope, I definitely waited too long and finally decided to go to the ER at 0500 AM. My admitting diagnosis was hypovolemic shock (again, I know I am an idiot for waiting that long but I like to think I am tough lol). Since then, my bowel patterns and habits have been all sorts of fudged up It was really bad the first couple of weeks after I got out of the hospital, and I figured it was my gut flora normalizing again but it did take awhile to get even remotely better.
Unfortunately things are not 100% back to normal, especially at night. I have more frequency during the day then I would like but I am able to hold it for awhile, it just gets uncomfortable but no incontinence thankfully. At night I do not have any incontinence either...but my body is waking me up roughly every 2-3 hours in order to have a BM. Due to my metamucil use, they are typically well-formed (as formed as they can be for a J-poucher)..but I am very irritated with the amount I am getting up. It definitely is interrupting much-needed sleep for healing.
I have tried to stop eating prior to 7, even 6 pm some nights to see if that would help. For instance, last night I was done eating my last meal by 6:45 pm and did not go to bed until roughly 11:00 pm...and I was still up every 1-3 hours depending. My body finally lets me rest around roughly 0600 am...and then I sleep in until about 10/10:30 (on mornings I do not work..I am a RN), but I hate sleeping in that late because I feel like my day is wasted...but I know my body needs the rest.
Do any of you have any similar issues or suggestions? I still take Lomotil prior to going to bed, but I am good at staying with the every 6 hours on the days I need it more, etc. (However I do not always use it every 6 hours). I am just very frustrated. I realize it has been roughly 2 months since the food poisoning issue, and maybe my body is still adjusting, but I just want to get back to how I was prior to the food poisoning issue.
I do not have any blood or pain while having a BM. No abnormal smell or color. I did start seeing this naturopath in my hometown who healed himself from UC and he has me on a pretty strict regimen, which I believe to be helping because overall I feel much better...I am just frustrated again at how much I am going in the evening. He did find 2 parasites, so some of my supplements I take are to help kill those off...I was thinking maybe that had some correlation? But not sure.
Also...does anyone know of any electrolyte supplements with minimum potassium content? Again, ever since my food poisoning my potassium has been elevated in the 5.3 - 5.4 range. I am diligent about consuming fluids, especially electrolyte replacement packets, but my K still will not come down. Kidney function is normal. My doc said not to worry about it but I overthink and am concerned about anything with my body after everything I have been through.
Thank you for your time in reading in this. I am so excited to be a part of a group that understands what I am going through. The support system really helps. I realize this disease and subsequent surgeries are not what we envisioned for our lives, but I do believe the Lord placed us exactly where we need to be to help others...so again, I really appreciate any advice regarding this subject (or any helpful tip really...I still feel like a newbie to the J-pouch world lol).
Thank you all and God bless!