Step two tomorrow!

Good luck!

Goooooooooood luckkkk!!! I hope the surgery goes well and you have quick and uneventful recovery.

Best wishes tomorrow! Hope you have a good recovery and don't have to share a room on the 14th floor!

I remember those days! Good luck!

All went well and settling into my private river view room! More tomorrow

So glad it went well!! And so happy you got on 14 - nice!

Glad that it went well!! Wishing you a quick recovery.

Hi everybody... OMG I feel like I was hit by a truck!!! I can't believe how much more this surgery took out of me than Step 1. I definitely did not wake up in the OR laughing and smiling! I have no memories until I got to Recovery, where I promptly threw up, then didn't have the energy to open my eyes for about four more hours (not sleeping -- just couldn't lift my lids).

So, all in all, I would still say I am doing great. My NEW loop stoma has been burping a lot and put out about 1/4 bag of liquid so far. I am not in much pain, per se, but I have a drain tube up my butt (to keep the pouch from becoming distended) and it is SO uncomfortable! I am also overall way less mobile than I was after Step 1. In January I was up and walking literally six hours after surgery. I tried to get up for a walk this morning about 12 hours post-op, mostly so I would get a break from sitting on my butt tube, and barely made it three feet across the room to the chair. I stayed there until I could summon the energy to get back into bed. I am dying to walk (the nurses think I'm crazy) but every time I get up I get very lightheaded and hot and I have to sit down again. Not sure what the deal is there, thinking it will pass with time and rest.

Random deep thought: is it really a "rectal tube" since my rectum is gone? I'll continue saying butt tube.

The surgeon told me this morning that I had virtually no scar tissue from the first surgery which made me soooo happy. I didn't really know anything about adhesions back in January when I settled on three steps (not that anyone was offering to do me in two steps, but I probably could have found someone) and have worried a little bit that I didn't fully take into account the downsides of being opened up an additional time (though it is laparoscopic, so obviously much better than actually being opened up). Anyway even though I am a whiny baby right now I have to admit that everything has gone well and though I have a tough road ahead in the next few days and weeks, I'll get it through it and get back to livin' life. Until takedown. Then... who knows.

Thank you for checking in. This, too, shall pass - to quote someone here. And I have to say, as another 3-stepper, that takedown was a breeze. I could barely walk into the hospital for that surgery (long story, bad loop ileo) and two days later I bounced out of there. My first surgery was the bad one because I had toxic megacolon and it 'sploded. But there was no way I could even think of walking for days. I couldn't even turn from my back to my side without assistance. So you're way ahead of me. And your loop seems to be behaving exactly like s/he should.

kathy

So good to hear that the surgery went well and you are ok. The second step is a much bigger surgery than the first one so don't feel bad that you feel like you have been hit by a truck. I had the first two steps done together and remember the first few days after the surgery were quite difficult. And, I hated that butt tube!!! It doesn't let you sit, lie or walk. I hope they take it out soon.
And, your bowels are already up? That's wonderful! My stoma didn't start outputting until the second or third day.
Hang in there, walk if you can and enjoy the river views

liz. great job thus far you tough woman! 2nd surgery was definitely the hardest for me. I remember bawling at the top of my lungs like a big ole baby when the nurse came in the first morning after surgery and made me get out of bed and sit in a chair.

And as a very experienced "butt tuber", I advise you trying to sit sideways. Kinda sitting on one cheek. Tuck a little something (like a folded hand towel) under the opposite cheek. Also use extra pillows in the bed to get you turned and positioned on your side to get the pressure off that butt tube.

did you have an epidural? just wondering about the lightheaded and hot thing.

hang in there.
liz

Hey guys. Yes, I have an epidural. I had one last time and it worked so well that I had virtually zero pain... guess I just got lucky with that one! The lightheaded/hot feeling has passed for the most part. I am still not very mobile but have managed one walk and to get up to pee twice (cath is finally out).

Dressings came off the incisions just now and the WOCN will be by later to change my wafer since there's no WOCN on the weekend. Although my stoma is outputting quite a bit the surgeon says "Don't be fooled" and doesn't want me to start liquids yet. I feel so crummy that I'm not particularly anxious to progress diet anyway. Can't believe I've been here less than two days, feels like forever. I know this will pass... but it's really taking its time!

Thanks for the update. You are getting to the I feel like I've been run over by a truck phase of recovery. You know when you can walk to do it as much as possible. Good Luck with the damn bag and watch out for dehydration. That was my problem.

Oh Liz I hope things improve quickly for you. Takedown should be a breeze compared to this. You'll be so happy once you're on the other side of all this! Keep your spirits up and keep us posted.

Thanks for the kind words everyone. I feel like I improved a lot today. My friends came to visit and I always push myself a little harder for visitors so I walked a few laps with the BF and then sat on a chair in the lounge chatting with them for wayyy too long (I finally had to kick them out ). I started laughing as soon as I saw them and that was not fun!! Feeling tired now but definitely in less pain that I would have expected given how much I was moving around.

I've got "full clears" now (so... jello in addition to juice and water) and we're talking about trying some very soft solids tomorrow. Epidural to come out tomorrow (wahhhhh -- switching to Tylenol and oxy for breakthrough only) and rectal tube probably on Monday. It sounds like they are setting me up to go home on Tuesday which doesn't sound TOO crazy. Fingers crossed!

So far good, keep up the good work!

Hey Liz,

Been a while, how are you doing?

Thanks all... I was discharged on Tuesday. Having kind of a rough start. It seems like my bowels are super sensitive to anything that can slow them down. I had to drop back to liquids in the hospital after taking two oxycodone tabs (ended up in more pain from no output than I started off needing the oxy for).

When I was discharged the surgeon felt my output was too high and said I had to take three Imodium per day -- I knew that was WAY too much for me so I took only two, but that ended up still being too much. I foolishly ate a small dinner after taking the two Imodium (before it was apparent that I was going to have a problem) and was in abject agony. Luckily I started to have a tiny bit of output and never became nauseated so I was able to stay home.

In any case, I had to drop back to liquids again as a result. I'm hoping to speak to the surgeon on the phone this morning and see if he thinks it would be OK to start on very soft solids (like yogurt). I'm dying for some protein. There is definitely no way I'm taking any more opiates or Imodium. I have a PCP in town who will give me IV hydration if I need it, but the thought of going through another partial blockage is terrifying.

Anyone else super sensitive like this? Any tips? I'm scared that I might still have a bolus of food stuck in me (my output is all liquid now, but that makes sense to me since I'm only taking in liquids) and it will cause the same problems all over again once I start solids. Am I crazy? Maybe it just got disolved by all the liquids yesterday which is why nothing ever sort of 'popped out'?

Things should improve when the swelling goes down. Give it six weeks or so from your surgery date. If you are on liquids and need protein, try Odwalla protein monster drinks - that's what they had me on in the hospital when they were worried I wasn't getting enough protein. They had me drinking one with every meal.

Whenever I felt I had a blockage I would drink lots of white grape juice. Seemed to always get things moving. It worked wonders. I never am without a bottle at home. When I want to eat something like popcorn, I wash it down with the white grape juice. I got the tip from this website a few years ago.

And, if you need the oxy, try taking only one at a time. I, too found that 2 was too much.

liz. I'd definitely be sticking with liquids for awhile longer if I was you. You surely don't want a real blockage. Try massaging the area, take a hot bath or shower if you are allowed. Move around as much as you semi-comfortably can.

Your abdomen and stoma are probably swollen from surgery still. Also if you did have a bit of a partial blockage, then your intestines may be swollen for awhile after that.

I think you would be ok on full liquids. So do a glucerna shake (less sugar than the boost junk) or some cream soup. Chase it with grape juice (or red wine!) if you need to get things cruising through.

I seriously can't believe your surgeon told you to take 3 immodium. I thought most surgeons were anti-immodium until people were a ways out of surgery.

hang in there. This is all part of the normal healing process.

If cream soup counts as liquids then I think my idea of slowly starting solids is the same as liquids... So far today I've had some greek yogurt and a bit of apple sauce, chased with juice and lots of water and tea. No problems yet but too soon to tell. I don't mind sticking to this kind of liquid diet for longer, I was just going out of my mind on clears.

Thanks for all of the advice everyone

You can even have cream of wheat or oatmeal on a full liquid diet. Just don't have it real thick, but sort of runny (like porridge). If you use milk, take lactase or use lactose reduced milk, but still use it sparingly.

Jan

If you have too much liquid output you need to eat some solid food or you are going to get dehydrated. I had had had your step 1 + 2 in 1 step and was in the hospital for 16 days as I kept getting dehydrated. Usually headed up with projectile vomiting but also with high output. I'd suggest scrambled eggs as that would give you protein and Greek yogurt had good protein too. Bananas and marshmallows too as marshmallows are good for slowing things down. If all of that works then you might want to add plain old campbells chicken noodle soup and all the saltine crackers you want. It's loaded with salt but that is ok as without our colon's we need to have the salt. I also liked cheese, mashed potatoes and baked chicken.

These are some of the foods I started out on when I came home I didn't feel like eating anything really. I was also drinking tons of gatorade until I found out the food coloring and sugar wasn't good for me. The hospital was giving me 3 a day. I explored around until now I order NUUN tablets off the internet. There are lots of others out there. Pedialyte is good too.

Good luck!

Thanks! Wow, I can't believe cream of wheat would be considered a liquid. It seems that most hospitals have a different dietary progression than mine -- we go straight from clear liquids to full GI soft. I wish they served an in-between liquid diet like what you all are describing, I think it would be a better transition!

I'm pleased to report that after the yogurt and applesauce this morning I'm finally seeing (for the first time) some really nice looking applesauce-consistency output. Still nowhere near what I got out of my end ileo but I am feeling more optimistic. I think I will stick to the 'liquid' diet for the rest of today and start testing the waters tomorrow with shredded chicken, water crackers, etc.

TE Marie The NUUN tablets look great! I had been thinking about getting something like that for the upcoming summer months that I could carry around easily. Favorite flavors?

I like soft boiled eggs with toast too but many don't like promotion of yokes not fully cooked

I'm glad you are feeling better today.

My grocery store carries NUUN but I get them cheaper on-line. I like all the flavors but the tea like ones and the all day ones I have to mix with the regular flavors, like 16ozs of the all day with 8 oz of a regular flavor. You can mix flavors. I order the variety packs, there are 2 of them, so I like all of those. Each tablet can be split in half with a full tablet for 16 ozs. I think it was Lionspride on this site suggested them for me as he takes them with him when biking etc. There is some kind of artificial sweetener in them and their flavor is not strong.

They emailed me this special today which is a 4 pack of 12 16oz tabs of one flavor, in case you are interested. Check out the prices you might want to still buy a 4 pack of one tube of each first. They have specials once you start buying from them. You can also look to see where a retail store is close to you from their page.

http://shop.nuun.com/?utm_medi...-pack+select+flavors

Peanut butter on toast, protein in PB. I use natural non chunky. My husband makes it but you can buy it in the refrigerated section of the grocery store or just use the regular on the shelf kind. I also put in on the saltines. Honey on top of PB or oatmeal is good too.

Protein shakes are good. I like PlantFusion but there are a zillion out there. When you get further down the line you can add fruit and/or veggies to them. You will want to wait, maybe until your take down for that.

yes most hospitals go from
clear liquids
full liquids
GI soft

full liquids is probably a good place for you for a day or two- creamy soups, runny yogurt, liquified applesauce, fruit smoothies- made at home and extra well blended, ice cream

and then stick to a soft GI soft for another day or so - like TE says - scrambled eggs with cheese, mushy casseroles, mashed potatoes, oatmeal, peanut butter toast, bananas, rice, grilled cheese, hummus, etc. Many years ago some nurse somewhere explained GI soft as anything you can cut with a fork.

Also - you can try eating 5 or 6 mini meals a day. But put protein in each of those meals. Will help you heal faster.

So would a creamy pureed veggie soup be OK? The GI soft guidelines the hospital gave me say I can only have soups made out of "allowed foods", and no veggies except for potatoes are allowed.

Only if the veggies have been cooked until they are mush. Absolutely stay away from mushrooms of any kind. They are little obstructionists and caused me a bad day and night once. If I were you I'd stick more soups without veggies and beans for now.

I think it's a good that you feel like eating so much! Rice Krispie treats are not very nutritional but are made with marshmallows and cereal. The marshmallows help firm up the stool. A UPS member wrote in once that he eats several a day as they help keep him from going too often during the day. He already had his j-pouch.

Interesting! Rice Krispies certainly make sense...

I feel like I am really torn between trying to slow my output vs. making sure I don't block again. I am eating thickeners for the most part, but also drinking a ton while I eat which I know kind of works against me.

Anyway, just checked my 24 hour output and it's 980 cc -- that's with no Imodium, and liquid diet for 16 hours of it. So I'm thinking with soft solids it should be OK.