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Sugery #1 of #3 question?

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Ulcerative Colitis
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Posted 5/15/2016 11:31 AM (GMT 0)
Good M. My colon has been removed, ileostomy created- they left my rectum intact untill surgery #2. This is day 3; 2 mornings in a row I feel like I am having pressure in the rectum like I have to potty. Anyone else have this happen?
Posted 5/15/2016 1:45 PM (GMT 0)
That is common. I had the same question after my step-1, I thought there was something wrong but come to find out that is normal. Your rectum will produce mucus which you will have to release once or twice a day. Your rectum can still flare from UC and if it is bad then you can treat it with canasa.

How are you feeling?
Posted 5/15/2016 2:24 PM (GMT 0)
Thanks Kieth, That's what I thought, just wanted to confirm firm with another fellow UC veteran. :) Had about a 1/4 cup discharge maybe. Otherwise I'm hanging in there, pain is slightly better but still extreme. I'm able to walk a little now with a fancy stroller machine. Output of the ileostomy is proceeding well. Started full low fiber diet yesterday. They are cutting me back on IV fluids slowly to see how I do.I have about 4 or 5 criteria to meet before they let me out. Mobility, output of ileostomy, diet, conversion from iv pain meds to pills, training on how to change the wafer around stoma. They had a complication with the folly catheter. Gonna have to wear it a week due to false passage. Today they put me back on pill prednisone. No more IV steroid. They plan to start cutting me back on the prednisone next week. Apreciate the support.
Posted 5/15/2016 3:00 PM (GMT 0)
That all sounds pretty good! I never had a fancy strolling machine. :) Does it have tennis balls on the feet?

After step one, some people get amazing relief and others struggle with proctits in the rectum the entire time. I was very lucky. Though I passed mucus, I didn't have horrible proctitis. Some people literally feel like they still have UC because of their rectum. They have bleeding, mucus, tenesmus, frequency... After step 2, that all goes away. For me, it wasn't a problem, I could have stayed with my end ileo and everything was great. After step 2, the problem was that my loop ileo was the worst. It was always itching, even if nothing was on my skin. I changed it daily. I hated my loop.

Are they getting you a nurse for your first few changes? I had a home health nurse after #1. After #2, I opted not to have one. I was comfortable doing everything on my own since I was doing it for months with the end ileo.

I never had any special diet. I remember I was eating PF Chang in the hospital a few days after step 1. haha. It was great to be able to eat again without worrying about pooping my pants.

Being done with steroids is truly the BEST feeling ever. I am so happy you're on a plan to good health!
Posted 5/15/2016 3:44 PM (GMT 0)
Thanks Notsosicklygirl, the fancy strolling machine is on wheels adjustable heights. It's really a something. Puts no pressure on abdominal while walking. They are offering home health when I get out. Talking to the hospital doc they might get me outta here in a day or so. Well see what the surgeon says. He has the final say. I'm really ready to go home but I'm a little scared about leaving to early.
Posted 5/15/2016 4:47 PM (GMT 0)
I wonder why our surgeons (and staff) fail to tell us that we will still pass mucus (and small amounts of stool) after colectomy. When it happens, we are freaked out! This happened to me after I got home so of course I called my surgeon's office in a panic! They really need to tell people these things ahead of time. Lol

You'll still pass some after your step 2 when your rectum is removed and j pouch is created. I had a two step procedure so my rectum was removed and j pouch created in my first step.

Hope your recovery is going smoothly.....it sounds like it is. :)
Posted 5/15/2016 11:00 PM (GMT 0)
Yeah this evening was a mess, tried to make it from the chair to the bathroom. Hit the floor like a bomb. This has happened 2x now. Major depression after. Only positive note today I'm unhooked from IV fluids, on pills for pain and as long as the ileostomy output is in line they will let me go home tomorrow.
Posted 5/16/2016 5:51 PM (GMT 0)

GutsAreUs said...
Talking to the hospital doc they might get me outta here in a day or so. Well see what the surgeon says. He has the final say. I'm really ready to go home but I'm a little scared about leaving to early.

You're the person who has the final say if you go home or stay in the hospita, not the surgeonl; your surgeon definitely has a lot of input in this but if you don't feel well enough or are just not ready then tell them that you want to stay longer.

After my take-down (3rd step) I didn't feel well, I had random fevers and pains. They sent me for a CT Scan but it didn't show anything out of the ordinary, they wanted to send me home and I said that I wanted to stay because I didn't feel well enough. 2 days later my fever was worse and they sent me for another CT scan, it showed a small abscess. Once they found it they treated it and I was home in a few days.
Posted 5/17/2016 3:28 PM (GMT 0)
I'm home now, still fighting pain and such but I think I'm on the road to recovery. Many thanks for all the kind words and ileostomy advice. Im emptying the bag ok now, even got a crash course and wafer change before I left the Hospital. Suppose to get some Home health care soon as well. I have a double whammy with the back trouble and trying to get over the surgery. Had an attack of pain even hours before leaving the Hospital. Wound up finally being able to lay on my side somewhat and it finally eased off. Folly comes out Thursday morning, can't wait. Thanks again...
Posted 5/17/2016 4:47 PM (GMT 0)
Glad you're on the mend.....happy healing!
Posted 5/20/2016 9:54 PM (GMT 0)
How are you doing now Guts? Lots of improvement? I was actually surprised at how much I could do fairly quickly after step 1. Initially I had a lot of pain from the surgery, but my UC was gone, and I immediately felt more confident about leaving my home.
Posted 5/21/2016 2:42 PM (GMT 0)
Hi Notsosicklygirl, I am slowly improving. Still suffering with the back and abdomen pain. I can get up and down better now and even walk a little bit without a stroller. I was able to change my wafer and bag yesterday with some hand holding from home health. Positive notes: It's nice to not have the old UC pain and cramping, nice not to have to run to the bathroom 10x+ a day and night. If I can just get the back and abdomen to cooperate I will be a new man. :) All good things in time I suppose. Rectal discharge seems ok now, usually in the morning and I have not had an accident since the Hospital. Had some major depression for a few days but it seems to be better now. There is a psychological aspect to the ileostomy. Having some waves of emotion but I think I'm holding my own. Apreciate...
Posted 5/21/2016 3:05 PM (GMT 0)
The depression can also be from the Predisone tapering. I actually ended up with steroid withdrawal and needed to go back on Predisone for 10 days. I also had lots of joint pains from the withdrawal.

My abdomen pain was more stiffness when standing up/laying down, or getting out of bed. I would need something to brace myself to help me up. It's only been about 9 days since your surgery, you will start to feel better soon. It took me about 2+ weeks to really to start seeing improvements, that's when I went back to work part time. Be patient with yourself
Posted 5/21/2016 3:11 PM (GMT 0)
I was all kinds of depressed afterwards. Surgery takes a toll mentally just as much as physically. That passed in time. I found getting out and doing things helped. Even if it's something small like a walk outside.
Posted 5/21/2016 4:01 PM (GMT 0)
I am sorry you're feeling a bit down. It's not easy, but it does get better. Initially I felt down too, I was scared of the ileo, and I didn't know how to function with it. After a short time, once I was healed enough to get out and do things, I forgot about it very quickly. I did more with the ileo than I did for months prior with active UC.I actually found, for me, the ileo was easier if I had some different clothing options. I went on Amazon and I got some high waisted items. Luckily this is in for the ladies right now. I also got some ostomy wraps through my insurance. Those made a huge difference :) You will do great. Just focus on resting and being pain free.
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