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Posted 3/27/2015 1:23 PM (GMT 0)
Takedown was Monday. Surgery fine, and normal responses so far. A bit more pain than others have reported. My daughter wants out, but food intake is low and yesterday topped 20bm's. On track for that today too.
What's your thoughts...can we manage this at home or am I going to visit the ER? Docs think it's normal so far, but wondering it your improvement was slow and steady, or had a nice predictable drop off in frequency. Thoughts?
Posted 3/27/2015 1:53 PM (GMT 0)
You can manage this at home. Expect frequency to decrease in a period of weeks, not days. I noticed improvement in 6 week increments over the first year.

Sue
Posted 3/27/2015 3:03 PM (GMT 0)
My food intake was very low for a couple of months after the surgery. I started to complain about how tired I was and someone pointed out that I wasn't getting enough calories; once I increased my intake then my energy started to return. Your daughter needs protein and calories to help her recovery.

If her pouch is active and she doesn't have much of a fever then she can probably go home.

Did they fix a lot of adhesions during her take-down? I had a lot of pain after my surgery.

Here is the recommendations on discharge from where I had my surgeries:
  • You are easily tolerating liquids or a fiber-restricted diet. Your appetite will improve after you go home.
  • You are easily tolerating liquids or a fiber-restricted diet. Your appetite will improve after you go home.
  • You are passing gas and your abdomen is not overly distended.
  • Your pain is controlled with oral pain medications.
[list]*You have no fever.[/list]

www.cornellsurgery.org/colonrectal/instructions/wha_var.html?name1=A+Patient%27s+Guide+to+Having+Colon+and+Rectal+Surgery&type1=2Active
Posted 3/27/2015 3:17 PM (GMT 0)
I was sent home after just 2 days. They only let me start eating literally the morning of the day they discharged me and all I had was toast with butter. I didn't have an appetite for a while, same with the first surgery. Now I am eating more but not nearly as much as before since I am no longer on prednisone. The night I was in the hospital I had a few accidents and I went close to 20 a day. When I got home I had no more night accidents and right now am down to about 5-8 a day but it varies. I'm about 5 weeks post op. Still have a lot of pain at night which I am not sure why. Still have some cramping and pressure during the day but nothing like it was. It got better maybe after 2.5 weeks of being home. So I think it is probably something she can manage at home as long as she can tolerate oral meds cause I took those quite often after my takedown! Also if she is having nightly accidents just prepare for that at home just in case by putting pads down where she sleeps. I did just in case but once I went home nothing ended up happening. I just took some of the ones from the hospital!
Posted 3/27/2015 4:57 PM (GMT 0)
She'll be better off at home trust me. What you describe sounds normal. Frequency will go down in the coming days/weeks as her body heals and adjusts. Just have her go slow with food and stick to a low residue diet for the time being. She will get a sense when to become more adventurous with foods. Make sure she stays hydrated too.

Edit: another thing she should have at home is a barrier cream such as Calmopseptine in case she has some irritation/burn. Walgreens carries it and Amazon.com as well. I cannot be without it even five years later. I don't need it every day but at least three times a week.
Posted 3/27/2015 7:22 PM (GMT 0)
How did you guys make the trip home? If I have surgery the hospital I'm going to go to is about a 1 hour drive, at 20 times that's pretty risky. Do you just see diapers and worry about it when you get home?
Posted 3/27/2015 7:29 PM (GMT 0)
UCHater,
It's all very individual. It's not carved in stone that everyone will have 20 bms post op. And most people are not incontinent despite the frequent bathroom trips. You should be able to hold it to get to a bathroom in a timely manner. I never had an accident with my j pouch even right after takedown.

I had an hour drive home too from the hospital and even stopped for a bite to eat. No problems at all.
Posted 3/28/2015 1:35 PM (GMT 0)
I think she will do better at home!!! I was released on day 3 after takedown. Never had 20+ bms but definitely had the pain (which surprised me...pain was worse with takedown than with Step 1 for me!). I also had some adhesions that they fixed during takedown which was the reason for the abdominal pain. I HATE pain meds so did not take anything but Tylenol and Advil once home. At 9 weeks now and averaging 8-10 bms in a 24 hr period, stoma wound completely healed and feeling great. Eating and drinking what I want. My appetite was normal right after the surgery...couldn't wait to get on solid foods and even looked forward to the hospital food! I did have some nighttime accidents for the first few weeks but they stopped around week 6 (never had any problem during the day). I also had an hour + drive home and the only thing that bothered me was the passenger side seat belt...right across the stoma wound!

Vicki
Posted 3/29/2015 2:28 PM (GMT 0)
Still in the hospital. I'm chuckling that I thought I had a voice in the debate over when she would go home.
Last 3 days were 23, 21, then 16 for BM's. Very little food, still low residue. Pain meds oral, but still pretty frequent. Pain considerable. More than she bargained for. Low magnesium, potassium etc, but she keeps blowing IV's. After a bad PIC line a long time ago, years of infusions and dehydration, getting her an IV is impossible. Soma wound healing nicely. Doc wants Bm's at 12 or under. He feels it's a manageable at home #. He doesn't want to start manipulating the output with Immodium etc yet, he want to see what her actual functioning is . Weekend warriors are on, so hopefully we get a released or more info on Monday. Thanks!
Posted 3/29/2015 3:31 PM (GMT 0)
I don't recall much pain after takedown. Is she having gas pains? Trapped gas can be really painful. Moving around, walking ect. should help with the gas. This is just my two cents but if she can handle it, I would skip the Imodium altogether even when she gets the ok to take it. I believe it's better the let the body adjust on its own. I never took it and still do not need to. Of course if she gets home and she's still going a lot then it will be helpful. Hope her pain is better today.
Posted 3/29/2015 7:02 PM (GMT 0)
I agree about not relying on immodium in those early weeks, however I think it did prove to be beneficial for me in getting through the initial onset that first week.

I was having similar issues, katmom (minus the pain). Once I started going after takedown it was almost like I couldn't stop. I ended up staying in the hospital for a week post op due to dehydration, low potassium, etc.

Finally around day 5 my surgeon reluctantly gave me some immodium and after that my bms cut down by about half (from around 18-20 a day to 8-10) and I didn't have a problem after that, nor did I take anymore immodium until about 6 weeks post op.
Posted 3/29/2015 8:19 PM (GMT 0)
My frequency dropped like a rock after I was taken off of IV hydration. At the beginning (and to a certain extent still), urinating or having a full bladder triggers a bowel movement. I went from something like 15 the first day to ~6 once I stopped getting IV hydration. Increasing my food intake also slowed my frequency -- until she starts eating starchy foods it's going to be all "bowel sweat" (bile etc), and that runs through really fast.

Takedown was definitely less painful than my second surgery, but I found it more painful than the colectomy. I think the pain of takedown gets downplayed a LOT. Obviously everyone's situation is different, but I don't think it's out of the ordinary to have significant pain after takedown. It's abdominal surgery like anything else with a pretty substantial wound.

You're experts now so I'm sure this goes without saying, but KEEP WALKING!
Posted 3/31/2015 9:54 AM (GMT 0)
Thanks, all. We are home. 13 yesterday, pain better, appetite a bit better. All looking up. So happy to be in my bed, I may never leave. They do want her to start the Immodium. I am not sure the difference between it and the other prescription for anti-d. Have to look them up, GI doc said one type, and surgeon wrote script for plain ole Immodium.
Posted 3/31/2015 6:08 PM (GMT 0)
The most important thing is that her pain is better and her appetite is returning.

You're probably referring to Lomotil which is a prescription and can cause drowsiness in some people.

I'm so happy that everything has gone so well for you and your daughter.
Posted 4/4/2015 10:04 PM (GMT 0)
I am so happy you guys are home and doing well. Please update us soon, it has been a few days, I bet she's made huge improvements since last time you posted
Posted 4/9/2015 4:45 PM (GMT 0)
Any update? I bet she's doing great now :)
Posted 4/10/2015 3:53 PM (GMT 0)
Thanks for asking and caring. She is feeling pretty well. Frequency about 8-10.
Had a bit of blood yesterday, but only once,so I'm not too worried. Post op visit is Monday.
She has NO appetite. It's what she prayed for during steroid use, but it is worrisome. She spit out chocolate! Everything tastes bad. It's not nausea, just no brain recognition of hunger. Any thoughts....something isn't signaling right. Energy pretty low as a consequence.
No more pain, and she looks great, so that's positive. She is delighted to sleep again on her stomach and does not miss the bag.New boy in the picture too, so there's a nice glow....
Posted 4/10/2015 4:08 PM (GMT 0)
Thanks for updating. 8-10 is pretty good and she's only a few weeks out :)

I bet her appetite will come back with time. I go through phases where I eat like mad and then I don't eat much at all. I am in a low eating phase right now too (thank god) but mine's probably from getting off steroids, i know in her case, it is more worrisome. Did you ask the doctor why her taste buds would be off? I can't imagine not wanting chocolate - but it would probably be good for me if I didn't. I desperately need to lose this pred weight!! I am so happy she is doing well, belly sleeping must be a dream, and dating is fun, no worries about bathrooms. Things are only going to improve from here. So happy for her. I just hope her appetite starts to come back.
Posted 4/10/2015 7:23 PM (GMT 0)
I had no appetite for about three months after takedown. I ate to be social and sometimes for the taste of foods but usually it was like "one bite is enough," even of my favorite foods. Around the three month mark it was like a lightswitch flipped and my appetite came back with a vengeance -- I ate everything in sight and gained about eight lb in a couple of months.

I don't think there's anything I could have done to jump start my appetite before then, and there's definitely nothing I could do now to make my appetite go away (I'm back to my normal pre-UC weight and have to watch my diet to stay slim just like everyone else). I would say give it time and just make sure she's getting adequate protein every day -- that's what she really needs for healing right now.
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