My Bag of Tricks is Empty

[Murph00]

Hey All,

I've been irrigating with great success for over a year and a half. For the past month things have not gone well. I have no issue getting the water in but getting it out seems to be another story. My normal routine is roughly 45 minutes but the other day I was still having returns 3 hours later. Most of the time the returns are just water. And because the water is staying in I'm experiencing allot of bloating again. The amount of output has also decreased. Every once in a while I'll get a good amount of output which makes me think that it's passing but the next day I'm back to the water issue.

I haven't had any diet changes and don't take any meds. I've played with water temperature, water amounts and upped my hydration but things still aren't right. I've thought about cutting back to just one infusion or just irrigating every other day, but I feel more comfortable doing it daily. Could this be a partial blockage? Should I consider using a laxative to flush things through? Or as gators is this just something we go through from time to time?

My wife and I are traveling to Australia for 3 weeks, leaving between Christmas and New Years so I'm really hoping I can get things under control before the trip.

Thanks for your help,
Merry Christmas to all,
Murph

[Lisa]

Hi Murph
Sorry to hear things aren't going smoothly. I still feel too new to be of much help but for what it's worth I think I would try stool softener and or laxatives. When I feel like I'm having insuffiecnt output I start taking colace for a few days and things seem to get back on track. It can't hurt.
Your trip sounds amazing! Hope you get things straightened out soon and enjoy your vacation!
Merry Christmas!
Lisa

[Jimbob]

Let me suggest that you try every other day. It might be that you have slow motility like I do and the colon is just not ready to spew on a daily basis.

Also going to Australia you might want the two day cycle to hold you over for the long flight.

[markstan]

Hi Murph,

I would second what Jimbob has said about trying to irrigate every other day. I have issues like yours but they are due to chemo meds causing dehydration. When I am well dehydrated I put 2 liters of water in and almost nothing comes back. My solution to that temporary problem is to take Miralax once a day in the morning. In your case I would just try irrigating every other day. If you still are nor getting outout I would try the Miralax once a day. On a positive note you are not exhibiting symptoms of a blockage. i have had that. It causes extreme abdominal pain accompanied by nausea. You would be headed to the ER because of the blockage pain if it would occur. With time and experimentation you will find the solution.

Good Luck with you experiments,

Mark

[BobinLJ]

Hi Murph- I infuse approx 1000cc just 1 time a day now. Down from originally 3 infusions and then 2 last year. I rarely get late returns or output during the day. Maybe worth a try?

Just my 2cents worth... Best to you, Bob

[Murph00]

Hey Folks,

I had a near normal session on Friday with a good amount of output, however I was still very uncomfortably bloated pretty much all day. I skipped yesterday's session and tried again today. I didn't have as much output as I had expected and the last return was only 1/2hr after my usual 45 minute time frame. So far I only feel a mild amount of bloating. I had already cut back on the amount I was infusing but haven't tried just one infusion yet. I may give that a shot, and the Miralax in the next couple of days if things don't improve.

I'm going to give the every other day cycle a try and see how that goes. The timing actually works out perfect for our travel plans. I think there may be a bit of anxiety in the back of my head because of the travel plans so that may be contributing to the situation too!

Thank You for your replies, I'll follow up in a few days.
Best,
Murph

[ot dave]

Hey Murph,

Do you have a hernia at all? Or at least that you know of? I have one and it will occasionally mess with my irrigating success, especially if I have thick output blocking the water around a "tight bend". Sometimes if I move my stomach around I can get a "clearer" path. Sometimes when it feels like it is ready to produce output, it is dramatically slowed down by one of those tight bends, and is almost immediately released if I lean to my right. That's just something I do with my particular hernia.

That said, I saw my surgeon last week, he took one look at my hernia, and said, "we need to get that fixed." So, I'm looking at a June hernia repair. Hopefully that will get me back on track to successful, easier irrigations.

David

[Murph00]

Hey Dave,

Yeah I do have a grapefruit sized hernia. I know there is a fold roughly 2 or 3 inches in and I've found that manipulating that a bit will allow the water in but its never stopped the returns from coming before. I have tried working that area and the rest of my abdomen when my returns won't come but to no avail. I'm not in any pain or haven't done anything to strain the hernia, so I'm left scratching my head as to what has changed. It actually has me somewhat concerned because my cancer all started with changes to my bowel habits. If things don't improve I will be looking into it once I return from Australia.

Good luck on your hernia repair. I'm sure there must be some apprehension with that. Please keep us posted. I always read the hernia related posts just in case I have to have mine repaired someday.

Thanks,
Merry Christmas,
Murph

[markstan]

Dave,

Good call on the hernia. It always helps to have all the medical info regardless of whether the patient thinks its relevant or not.

Mark

[ot dave]

Also, in regards to my hernia and irrigating, I had a colonoscopy back in March, and for almost a month after that, my irrigation success was sporadic. At that time, since I was free and clear from cancer, I decided that I needed to lose some weight and focus on overall health.... Well, I've since lost around 20 pounds, and the irrigation success has improved. I'm sure there are multiple factors with that, including the fact that there is less output from eating less! But, I did find that losing the weight helped my irrigation success.
I know how frustrating it can be...we get to have some control back in our "output" routines, and then all of a sudden it doesn't work like it did. Even through struggles, I never quit irrigating.....just can't imagine having to go back to not being able to irrigate.
Hope you find an answer....

David

[Murph00]

Hey Mark,

You're right in that it helps to have all the relevant information available. I did not intentionally leave that out and it wasn't until Dave brought it up that I realized I had failed to mention it.
A couple of days prior to starting this thread I went to see my family doc for an unrelated matter. He was reading a report on his computer that he had received from my oncologist and for some reason he read the last sentence out loud, where it said that I was "at high risk of recurrence" for my cancer. Oncology told me I had a 50/50 chance so when I heard the high risk term my mind automatically related my recent irrigation issues to a cancer recurrence. I've always remained positive but vigilant and hearing this shook me up a bit. It was another one of those long drives home from the doctors. I think this is why I never even considered the hernia as a contributing factor.

After reading the responses I received here and things going better so far with the every other day cycle, I feel a bit better about my situation.

Thanks again to all,
Murph

[markstan]

Hi Murph,


Yeah, I can see why the note from the Onc would be disconcerting. Just let the data drive the actions. What will be will be and you will deal with things as need be. I had a recurrence after 2 yrs NED and have been dealing with it ever since. One just has to play the hand your dealt. In the meantime enjoy your health and abililty to irrigate. You fill find a workable irrigation solution. I still irrigate everyday even though I am on chemo and it throws a bit of a wrench into it. Never the less I have have no plans to stop.

Happy Holidays,

Mark