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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! 

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I hear you loud and clear. I've been playing this stupid BM game for 17 years. I used to think (from reading other post) that I could eat like everybody else. I would read post where people would brag they could eat anything and everything, so I kept on thinking I was eating healthy.  The thing is I'm not like everybody else. I'm not normal. I started noticing nuts, popcorn, raw vegetable, beans, wheat thins, tortilla chips, whole wheat breads, raw fruit, blue berries, they were all causing me problems. I'm still doing all these BM's, so now I'm thinking low residue foods maybe my savior. I must cut out all the cruciferous vegetables I eat along with oatmeal and avocados. My thinking is I have to give my shortened digestive tract an easier time of it, and then maybe my nights will finally be better. Give it a try. I am embarking on this now!

 

@Olina I see a holistic practitioner, and he has this one frequency test that was able to detect the parasites. I asked the same question, in terms of how do we get them, and he said from various places. I had recently gone to Hawaii for a short vaca, and he said I could have picked one up there while in the ocean or hiking. He also said parasites are easy to obtain from the ingestion of foods, etc. I cannot remember the exact parasite I had, though I do have a print out copy somewhere explaining exactly what they were. 

@OldPoucher @Letlive27 Thank you for your responses! I went through a terrible flare in early January and was in & out of the ER 6 different times before I was admitted for 17 days. The flare could have been caused by this OrthoMolecular product I was ingesting (Inflammacore) daily, to help with inflammation. There was a recall on it in February explaining that there was fertilizer in the product or something...crazy, lol. I am sure that wasn't the sole reason for my flare, but could have contributed. 

Anywho, during my admission they were trying to rule out if I had Crohns Disease versus chronic ileo-pouchitis. I was originally diagnosed with UC in 2010, and Crohns was ruled out more times than I can count. My GI doc explained that this phenomena can just "happen" (UC turning to Crohns after J-pouch construction; for no reason in particular). However, my GI doc is leaning towards a chronic ileo-pouchitis picture. I started Humira on February 6th, and just WOW, what a difference! During my hospitalization I dropped down to 104 lbs (I am typically 125 - 130 lbs) and the diarrhea would not stop! The burning/cramping was awful and I barely had an appetite. A couple days after starting Humira, the burning/cramping was completely gone and the diarrhea bouts have greatly diminished. I have a scope scheduled for June 1st, so I am praying it shows healing internally. My GI doc said they will have a better idea of what my "official" diagnosis is once they are in there. 

By the grace of God, I am back up to 122 lbs with no burning or cramping complaints. I have noticed I am a bit more gassy, but I will take that over how I felt before. I also am sleeping much better at night - I will get up 1 to 2 times typically, but I am woken up by the urge to urinate (I drink a ton of fluid throughout the day and tea before bed). So much better in that regard overall, thankfully. I was super bummed to be placed on a Biologic, and I fought it for so long because I wanted to only do the natural route...but I cannot deny the overall improvement in my symptoms/body. I saw a dietician after my admission and am currently following a mediterranean diet (as well as gluten free d/t Celiacs diagnosis in 2010), as well as utilizing Metamucil daily & Lomotil as needed. I suppose a combination of this plus the Humira is what my body needs! 

Thank you again for your advice and support. I hope you both are feeling well and are staying safe during this chaotic time! God bless  

-Sarah 

I was checked for parasites long ago and it came up negative. I'm so glad to hear that Humira worked for you. I did that and then started doing it every week, did Remicade a couple long sessions, another bio-agent that was two shots in the belly once a month, and now I'm currently on Entyvio, but we eventually doubled the dose from 300 mg. to 600 mg @ 8 weeks. Been doing the iron IV's for at least 16 years and now I'm four pills a day for a phosphorus deficiency. This whole thing is hell on the body living without colon. I should just go back to the bag, but I had problems with it, and am not willing to go down that road again. Keep up the good eating and staying hydrated routine and you should fare well.

Hi Sarah, 

First off, I am so sorry that you are going through this after finally finding a balance in your digestive life.

I have a k pouch so my exit is different but essentially the pouch is the same. 

When in San Francisco, in 2003, we ate at a 'good' Chinese restaurant the night before flying back to Paris...by morning I was trembling, emptying out my pouch every 1/2hr, and miserable. The flight home was a nightmare (18hrs including stopovers) but I thought that it would end after a day or 2...

30 days later I finally decided to go see my doctor who is also a naturopath...she yelled loudly. I had dropped over 30lbs in a month. She suspected parasites and gave me something (I have since forgotten the name but it was a total intestinal purge) and after about a week things started to calm down. 

I am not a good 'victim' so I had continued working the whole time, suffering from constant dehydration, dizziness, and muscle cramps. 

She put me on trace mineral supplements explaining that we lose those first and that they are the hardest to ingest in a normal diet. 

I was on rice-water for quite a while as well as other starches (potatoes with olive oil and sea salt) and avoided anything canned, bottled, packaged or takeout/fast food...(you may have to skip the potatoes since they are high in K)

We all have different sensitivities and have different diets that work best, this is not a one-size-fits-all disease.

You may just find that instead of eating earlier and earlier, since it does not seem to be doing the trick for you, you could benefit from eating later in the evening...Around 10 pm ...that gives you the time to empty your pouch once before bedtime (11 pm if I remember correctly) and then maybe be able to get a good 4hrs before everything runs through your system.

The other trick that I have found is to stick to a high protein diet...just fish/Chicken/meats etc but not dairy, carbs or sugars...it is sort of a dietary reset button and not to be undertaken for long periods of time of you could suffer from a lot of vitamin deficiencies. 

You also need to understand that your guts were pretty much run raw and that it may take up to 3 or 4 months for them to heal...and, it is still possible that you have something nasty like pouchitis running around in there too.

If you have never tried it, pomegranate juice is very astringent and both refreshing, healing, and good for the electrolytes...although I do not know if it is high in potassium. They tend to drink a lot of it in Middle Eastern countries where heat and dehydration are common.

You might wish to try only 1-2tbs in a quart of water and then slowly increase the amount if your body can tolerate it.

Moderation seems to be the keyword here...that and trial and error.

Good luck getting a handle on this.

Sharon

ps...once things had straightened out, I did not suffer from any longterm side effects.

 

 

 

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