Skip to main content

Had my takedown Monday at Duke.  Came out of surgery feeling very strong.  Walked around a couple of hours that afternoon.  Ate a really big dinner (maybe too big..) that night.  Next day, had a solid breakfast.  Surgeon said I looked like I hadn't even had surgery, but also told me that yesterday would be the "worst pain day," whereas the lidocaine/anesthesia pack she used at the site would start wearing off.   I didn't know that it would be 48-72 hours before my first BM.  With Durham already getting rocked with one winter front, we got out yesterday just in time to avoid the one today, and to get home and get settled in.       

 

Last night was pretty tough for pain, but woke up this morning off of pain meds, and although sore, was able to tolerate.  Still want to keep ahead of pain, so took some.  Rocking the gunshot size hole in my stomach, and changing the gauze as needed.  Was told I could shower with it open, so might try that this afternoon. 

 

And so here I wait for my first BM (and predictably many more to come).  Went ahead and started taking some VSL3 that I had back stocked from UC days.  Didn't realize, per my surgeon, that the original R&D on that probiotic was to bout pouchitis, not initially to be solely used for UC - she said it would be a great thing to take that if I had some...

 

Any thoughts on first BMs?  Not to be too gross, but I'm literally sitting here not knowing what to expect or when to expect it...     

Replies sorted oldest to newest

Sorry that I've been slow to respond, but it's been a really rough 36 hours.  Apparently I was suffering with a blockage or obstruction yesterday during the day. Although my BM's started about 1p yesterday afternoon they were very small, and I began throwing up any medicine I took (and all fluids) starting about 4 PM.  Was really starting to worry when tasting my breakfast from Tues am... (Not to be too gross)...

 

About 1am last night I was massaging the intense stomach cramps I was having, and something felt like it shook loose.  10mins later, I was in the bathroom, and from 1-3a, 3x, everything came out...  Slept like a baby 330-730a, no cramps (no meds).  Got up, took medicine, showered, packed surgery site, and have been holding steady all day on liquids, light meds, and bathroom visits.  A couple of boost shakes today, but I stuck mainly to liquids for hydration.

 

Remember that big meal I mentioned?  Yeah, well I think that and the breakfast the next morning was a bad idea...  The surgical post-op nurse practitioner I spoke with today agreed, and was a little frustrated that I was allowed that big meal (nobody said not to, I wasn't thinking, felt good, and was starving).  She concurred that it was most likely a blockage, and had worked itself free.  She was humorous in expressing that my bowels have been asleep for three months, and dropping that much workload on them that fast was a bad idea.  She gave me clear direction on what to do now, and what to look for if I need to go to the ER (almost went last night...)

 

So tomorrow, I will try to restart with eating sensibly... Small helpings of cooked vegs and an easy protein 6x a day, to keep food in my system, and allow my bowels to get used to working...  She said the cramps are most likely stuff passing through the intestinal surgical site (where they sew the intestine back together), and that should subside with healing and working the site via food intake.  She was extremely helpful on the phone.  

 

I'll try to update in a few days.  Pretty exhausted right now...

 

 

P

I'm glad you are doing well and way to go on taking care of your own blockage!!!  Now I know why the resident told me to order a lot of different things but to only eat a bite or two of each.  The next day she lifted the lids off of my breakfast tray and smiled at me with a thumbs up.  Thanks lady I bet you are an awesome C/R surgeon somewhere now!

 

It sounds like you are about ready to be released.  You know how to take care of obstructions, what do you need to be there for? 

 

TE Marie

I've actually been out since 24 hours following my surgery (got out Tues afternoon).  Duke has enhanced recovery protocols, which are exceptional, and expedite (shorten) a patient's stay via some really great pre and post op preps.  I saw the huge benefits to this following my 1st surgery when I was out in three days.  Most take down patients on their eras protocols are out within about 24 hours..  I capitalized on this by really pushing to feel better (walk around, eat etc), and to beat an impending winter storm that would have captured us there (4 hours from home) for 3-4 more days.  

 

I think you nailed it though.  I needed someone in with me on night one or morning two to guide my eating.  Instead, the base post-op order was to resume a low residue, post surgical, regular diet.  There was no discussion of the mechanics of what just happened (relative to strictures or narrowing in the intestine) at sew sights, and the need to impart "waking the bowels up" via smaller amount of food, more frequent.  I will suggest this as a definite need with their protocols at my follow up visit.

 

Yeah, I was super lucky to shake loose this blockage myself via massaging the intestines. Great news is that I held to a clear diet yesterday.  Everything went VERY smoothly at home.  Went to sleep at 11am.  Up at 440a for one trip, and again had the "feeling" of needing to go at 640a.   A great nights sleep, and starting today, six small helping meals per day for the next week to ease in my system.  Things are looking up.

 

Still have stomach cramps, but they are starting to transition also to more of a  "feeling of pressure" near my pouch, giving me a better idea of time to empty.  Also started having my first gas after emptying yesterday, which I thought was a good sign that things are moving in the right direction.

 

Fingers crossed.  First day of the RIGHT amount of food, to get these bowels working right.

P

**update**

 

Either things are working perfectly (like a medical anomaly), or something is wrong.  It's hard to tell when I feel so well, and things seem to be progressing, but my daily improvement is not the status-quo for some one this shortly into a takedown...  

 

Yesterday was a little tough.  I ate small amounts of easy stuff all day, and each time I ate, I felt a little sick, and got stomach cramps when the food hit my stomach.  Those would subside, and eventually (via further cramp notification), I would go try to use the bathroom, and things would come out relatively smoothly (including the closing "gas" presumably signaling the pouch was empyting).  Not a lot of straining, but am having to lean forward a little bit in my positioning to get things flowing.  Diet yesterday was 2 scrambled eggs with a boost shake (830am), cup o' soup (1030am), the remaining soup mixed with cooked green beans, carrots, and peas (130pm), boost shake (430pm), and had some tuna-fish last night mixed with cooked green peas (630pm).  Was hard to finish, and was the biggest thing I ate all day (although probably only 2/3 of the can + peas).  Went once or twice before bed at 11am, and slept all night until 730am this morning.  Got up and went - consistency was what it seems like it needs to be (smooth, porridge consistency).  Went again at 830am, same thing.  Felt GREAT!  

 

Today:  Ate a couple of eggs, with a piece of ham and cheese on a flour tortilla (830a).  No stomach cramps this time.  Went again about 10am, and have felt relatively fine all day.  Had a boost at 11am.  A little tired, but the stomach cramps from days ago are definitely receding.  What bothers me is that I still am getting really no signs of pressure or urgency near my anal canal signaling that I need to go.  I mostly relying on what my body is telling me, and how full I'm feeling.  Additionally, I'm not having to go 20 times a day.  At max I'd put the number between 10-15.  Notably, I haven't eaten all that much and it's only been a few days, but I just have read that I should be feeling much more urgency and frequency when it comes to going to the bathroom.  

 

I'm staying positive, and hoping that this is actually all a GOOD thing.  Upping to some more solid foods yesterday definitely smoothed out what was exiting my backside.  I'm hoping today will be the same.  Just concerned about the frequency, and I don't want to do any straining.  It's clear when stuff is ready to come out, and it seems to flow smoothly, and like I mentioned I'm getting a pretty regular closing "gas" to infer the pouch is emptying.  

 

Taking VSL3 still as of today, just to make sure if I do have anything lingering in the pouch, that I'm proactively keeping good bacteria down there to ward off infection.  

 

Jan, anybody on here who is an admin.... would love your insight.  Have you seen situations where takedowns go so well, that they eventually end up working a little better than the status quo?  Or should anything above be things I need to worry about?  

P

Sounds like normal progression to me. When you read a lot of posts from people needing help and support there's going to be such an abundance of issues, that you consider them the norm. 

 

My general advice is that if you feel well, you probably are well. Suffering is not a requirement! You are early in your adaptation. There is plenty of time for a complication, so don't worry about it unless it occurs.

 

Jan

Jan Dollar
Last edited by Jan Dollar

Thanks Jan.  Makes me feel much better (as you do for everyone).  

 

Like seriously.  I feel GREAT.  Even road to CVS to pick up a prescription with the wife, and not a hint of urgency or issues.  Walking around a lot... had a cup of coffee this am (maybe shouldn't have), and things seem naturally to be squaring away.  

 

Sometimes what I read just scares me though.  I'm hoping this is a really good start to a long-lasting and successful pouch.  

P

It is OK to be scared of complications. THAT is normal. But, don't let it consume your thoughts so that you forget to notice the good stuff. Yeah, you will have setbacks, but hopefully they will be minor and short lived. Even if a dietary indiscretion proves to be more of a mistake than you anticipated, it does not mean it will always be that way.

 

Even after two decades of this, I pay the price for something I ate or drank. I don't swear off of it, but weigh the benefits against the risk, and learn to anticipate. For example: I don't go on a long road trip or a hike after eating spinach. Some things are worth a bit of discomfort. Balance is the key, I think. A little diarrhea will not kill you or give you pouchitis.

 

Jan

Jan Dollar

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×