My surgery experience, my new stoma

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answers4me2
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Date Joined Dec 2008
Total Posts : 1149
   Posted 6/27/2010 8:27 AM (GMT -6)   
I had surgery on Monday, 06/21/2010 and am still in the hospital today, Sunday, June 27, 2010. My doctor did the surgery we had planned, a colon resection, 1 to 1 1/2 feet of colon removed, fixed the rectum, hooked me up to a loop ileostomy, and he also found some weird things that he feels I was born with and he feels this probably contributed to my constipation issues. he started the surgery lapro, but ended having to open me up due to the weird adhesions that he found on my small intestines.

Day one was easy peasy....just got checked in, had low potassium, so surgery was delayed while I got potassium, then off to surgery. Surgery was 4 to 6 hours...not sure exactly how long. I woke up, it was painful, but I had a q-ball which delivers a type of novacain directly into the incision and I also had a pain pump. No epidural. This controlled my pain very well. Day one is basically a blur and I don't remember much.

Day two- Another easy day...I was still out of it and don't remember much...pain was well controlled.

Day 3- Horrible day with vomiting, bloating, and nausea....stoma starting producing just slightly. Pain well controlled.

Day 4-Horrible day, vomiting, bloating, and nausea. No med helped with this nausea, and believe me, they tried everything. Stoma producing, but not enough to stop the vomiting. Pain well controlled, but I went real easy on the pain pump due to vomiting and I thought this was contributing to my partial ileus.. This in turn caused my blood pressure to go through the roof...the nurses begged me to use my pain pump to control the pain, but I refused. I can be very stubborn.

Day 5- much better day, still nauseas and still vomiting, but alot less and my stoma is producing more and more.

Day 6- still nauseas, but no vomiting! YAY Pain is well controlled with the use of the pain pump. Antinausea meds are working and I can drink clear liquids.

Day 7- Today....doing much better. Still on a clear liquid diet, but getting hungry for some food. I still have pain, but it is very bearable. I am surprised at how well my wimpy butt has handled this pain.

My output has been tremendous, I mean, TREMENDOUS! I never knew a person could make such an amount of poop. But after putting out 500cc's to 700cc's every 2 hours all night long, my stomach has gone down and is softer. I did not have to stand up every 30 minutes due to burping, hiccuping, gagging....I had to do that every night since the surgery due to swelling up high that pushed my stomach contents up into my throat. YUCK, it was awful. I was finally able to sleep, not straight sleep, but still got more sleep than I have gotten since I got here.

My stoma has been very noisy which is a great thing. This farting has helped so much with the painful bloating. It is loud and me and my mom have laughed and laughed at these wet farts. My kids are sure to get a kick out of this. And it is kind-of nice to be able to fart again. I have been unable to fart or burp for several years now....

When I woke up with a full bag, it was also full of air too...it looked like it just might blow off of my side. LOL Last night I went walking and I walked and walked, not even thinking about checking my bag. Well, when I felt with my hand it felt like a huge balloon. I high tailed it as fast as I could back to my room and luckily, it did not burst. These bags are pretty strong I have seen.

I had 2 accidents yesterday while emptying, but not my fault. Once, the nurse lady did not put the clip on the bag properly....BIG MISTAKE! And the morning nurse was in a hurry and took the clip off of my bag while I was standing up. You NEVER, ever do that. All 750cc's of that foul liquid green stuff went all over my legs and the floor. YUCK So, yesterday, I got covered with poop, twice, but hopefully we got if off quick enough as not to damage my skin.

I am very nervous about changing my own bag. It is not as easy as it looks when it is on your own body....but, I am sure I will learn just as everybody else did. I also can't empty it on my own yet either. Hopefully as my body recovers and my stomach isn't as sore as it is now, then it will be easier to deal with. I also did not get alot out of my stoma nurses visits due to being too sick to participate, so tomorrow, I will be all eyes and ears. I am also going to ask if I can change my bag on my own with her watching because I am terrified to go home and have to change the bag. And believe me, I am on the bowel wing of this hospital and I seem to know more about emptying the bag than some of these nurses and I have only had this stoma for a week.

I am sure I will have lots of questions in the coming weeks for you veteran ostomates. Tracy

Post Edited (answers4me2) : 6/27/2010 7:37:34 AM (GMT-6)


SweetnSassyFL
New Member


Date Joined Jun 2010
Total Posts : 4
   Posted 6/27/2010 10:45 AM (GMT -6)   
Hi Tracy!

I just read your post, boy are you a trooper! LOL I had a total colectomy in 1995 and then in 2000 I had no choice but to have another surgery... prior to the surgery, my doctor told me that I would have an ileostomy for eight weeks, and then he was going to reverse it and I would have a j-pouch (let me know if youve heard of that). Well, as it turned out, during the surgery, they found cancer where they were going to create the j-pouch. So, I have a permanent ileostomy now. Ive had mine since 2000, reading your post brought back a lot of memories! I left the hospital not quite sure how to change my bag and that was a HUGE mistake! It fell off almost as soon as I got home and the nurse that was going to be seeing me every few days wasnt able to be reached. This might sound crazy, but we put a towel over the stoma and went to the ER. They really werent too happy with me at the ER, but I didnt know what else to do! Feel free to message me and ask whatever you'd like!

Hope to hear from you soon!
Allyson

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/27/2010 11:09 AM (GMT -6)   
I've gone to the ER a couple of times with a towel over my stoma, output dripping all over me. My stomas were incredibly hard to manage and not even the stoma nurse could keep a bag on for me. I got better at it than she was, but changes would take up to 5 hours at times because the output would never slow enough for me to change everything. I found that I knew a lot more about caring for it than any of the hospital nurses.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Starting Humira 6/28


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/27/2010 11:38 AM (GMT -6)   
Tracy,

Way to go girl.. You sound terrific. BE SURE TO ARRANGE FOR VNA (visiting nurse trained in stoma) to come to your house for the first month after your surgery twice per week to see you through the bag change. HAVE YOUR DOC WRITE THE ORDER BEFORE YOU EVEN LEAVE THE HOSPITAL.

As you eat your liquid diet then thicker liquids, this output should calm down. Do not let them send you home outputting this much or you will be right back in for IV's. Sounds like your doc is on target about wanting to slow it prior to discharge. A tiny bit of strained applesauce should help if he sees that as appropriate and like you can tolerate it. You sounded great today. I will message Chris the "apple juice warning" you asked me to. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/27/2010 11:44 AM (GMT -6)   
Chirstine,

Direct message from a telelphone conversation I just had with Tracy, after your ileostomy at first you will be on ice chips. THey want to be sure your intestines wake up and you don't have ileus before they let you even drink anything. Tracy says NO APPLE JUICE! (It is a stimulant to the small intestine as per her post). She drank it prior to ALL the enormous amount of output. I would also add just lightly sweetened DECAF tea is best and she said that is working. Fruit juices tend to really stimulate the small intestine. So just passing along helpful hints from Tracy who has just been through this and from me who is going on 3 years with this. I still cannot tolerate too much sugar, fake sugar except stevia, or too much salt as the effluent just really increases and leads to dehydration. This is only meant as helpful info and I wish you well tomorrow.

Rosemary

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5449
   Posted 6/27/2010 1:22 PM (GMT -6)   
     Thank you Tracy and Rosemary.  I am such a wreck today it isn't even funny.  I keep asking myself if I am making the right decision.  Maybe I shouldn't have told the surgeon I had no trouble with the idea of having a bag.  Because his first responce was ..."we don't do operations for this."  He probably thought I just wanted my rectum removed but I knew they wouldn't do that.
     I am sort of concerned because the surgeon said I didn't have to do a bowel prep...just clear liquids today.  Well, I started on clear liquids yesterday at lunch, just for good measure.  Clear low salt chicken broth, lime jello (they just said no red), banana popsicles and lemon water ice.  I do have apple juice here but only drank 1/2 cup this morning.  Wonder how he is going to remove all that stuff...colon and rectum with no bowel prep.  Do they just clamp some of it off?  I know I will not have it done laproscopically.  He told me I will have an NG tube inserted during surgery.  Guess it is better to have it placed in then than afterwards. What exactly is that for anyway?  My head is just swirling and I feel like getting on the next plane to a foreign country.
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: 20 mgm prednisone, Colazal, Benicar, zolpidem for sleep, Calcium with D, Multivitamin.  Surgery scheduled for June 28th.

 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/27/2010 1:57 PM (GMT -6)   
Oh, Christine, you will be fine! Like I said, I had an NG tube placed, too. It is easier to have it put in when you're rather than have it later if you need it. It's no big deal. You really don't notice it except if you drink something. Your surgeon knows what he is doing. If he says no prep, then you'll be just fine! I can't wait to see you posting about how much better you are once you're all healed. And it's good advice to get a home nurse. I have had one for months. It was nice to be able to call them when I was really frustrated with the ostomy bag (not that they could do it any better, but sometimes just having someone there is nice).
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Starting Humira 6/28


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5449
   Posted 6/27/2010 2:04 PM (GMT -6)   
My surgeon's assistant said they will NOT release me from the hospital until they are positively satisfied with my output, how I can manage the bag and I can eat a normal meal and my output is good. Sounds very encouraging...that they will not just throw me out into the storm.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1149
   Posted 6/27/2010 2:05 PM (GMT -6)   
Christine, the ng tube is a great idea. Maybe this will keep you from having those few days of vomiting and nausea like I did. YUCK I bet you will be much, more comfortable with the ng tube in and it will be placed while you are asleep. I wish I would of insisted on an ng tube with my surgery. This should keep your tummy empty and then you shouldn't experience any nausea.

As far as no bowel prep...I think they clamp off each end of the colon and just pull it out. No chance of leakage this way.

I know you are very nervous. I remember thinking, I can't believe I am doing this the morning of surgery, but very glad I went through it since the doctor found more wrong than we thought. I can now burp, which I couldn't do before surgery, and fart through my stoma, which is nice to be able to get rid of gas.....again passing gas pre-surgery was almost impossible.

The bag has actually been through alot of trials and tribulations, yet, it is still on....YAY Hoping it will stay this way. The stoma nurse has already called Edgepark and ordered me some stuff to be mailed to my house....she also ordered me some special scissors to cut the thingy, not sure the name, around the stoma....she told me when I am released, I will leave with plenty of supplies until mine arrive. I do plan to call Edgepark tomorrow and order some more stuff, like m9 drops for odor, which by the way, hasn't been an issue with me not being able to eat....the output has been pure green liquid....not that gross at all. Now today, it is changing a little since I ate 4 crackers, 2 teaspoons of pureed cream of chicken soup and 1/2 teaspoon of chocolate pudding. Some of the output is stuck around the stoma and it has thicker pieces in it, but still lots of green liquid....

I have had too much output, but now I am worried I may not be having enough output. I am sure this will be a major worry until I learn what to eat and what not to eat. UGH, I hate the learning and wait game.

What time is your surgery? Please post as soon an you are able and don't worry about pain. They have pain management doctors that worry about your pain and will get it under control.
Tracy

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/27/2010 2:14 PM (GMT -6)   
SO GOOD TO HEAR FROM YOU TRACE!!! gosh you sound good, like the good old, good spirited Tracy we all know :):):) oh myyyy so sorry about the 2 miserable accidents, it sounds aweful, i'm so terrified of that :((( so please tell me, how does it feel like to have that spout/muzzle/nozzle placed on your abd????? how d'you feel about it?????? oh gosh, i'm so nerves about having it..... o.k o.k, i am not nerves, no no no i am not!!! i shal take it real easy peasy (hahaha learned a new word from you Trace... don't mind me, just freaking out a bit over here, but nothing major)

LOL!!!!! so glad you can fart again :D OMG....... Rosemary, thanks so much for reasuring us about this gas business on the other thread, that sure helped a lot to calm me down lol.

i've also been so nerves about how to handle changing the bag and all that comes with it, it's all so new, isn't it?? but i'm sure we both will get the hang of it soon enough, won't we? oh i'm just so excited.

so glad you're feeling better today hon! pls keep us posted. LOVE YOU GIRL!!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1149
   Posted 6/27/2010 2:30 PM (GMT -6)   
Hodaya, it feels weird...the stoma is squishy and if you accidentally push down on it, it absolutely has no feelings. I can actually feel the gas moving through my intestines, which is very strange, but this could be post-op gas pains????I can tell when poop is going to come through the stoma and I can also already tell when the stoma is fixing to fart, therefor, I should have time to either run away or try to cover the stoma to muffle the fart. HEEEHEEE So funny! It has been awesome to just be able to poop with no effort on my part.

I have been having way too much output, several liters in 24 hours alone! WOW! I was drinking apple juice, but have since stopped that! But today it has really slowed down and it it has some thick pieces inside of it....I am not sure what my totals are for today after my several liters yesterday, but it is probably 1/3 of what came out yesterday. I hope this is normal......:(

Your surgery should be a little easier since you already had your colon removed. Did your doctor tell you this too? Is yours going to be temporary? When are you having surgery? How long will you be in the hospital?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5449
   Posted 6/27/2010 2:59 PM (GMT -6)   
Tracy..how much longer will you be in the hospital? The nurse that gave me some pre-op tests said I may be in ICU following surgery...gulp. Why? Because of my age ya think? Because I have situs inversus? I am going to remind them a thousand times about that and I want it posted in large letters above my bed...this is a biggie. I think I am more worried about someone flubbing up about my organs being reversed than the actual operation. I am actually having anxiety attacks this afternoon. Guess I better take a xanax. You think it is safe to take a sleeping pill tonight or maybe that will be bad since I am going into surgery tomorrow?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5449
   Posted 6/27/2010 3:06 PM (GMT -6)   
OH...and how long do you have to have a catheter in you? Did they give you heparin? The surgeon said I would probably get that...ugh...what a b**** to be old.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1149
   Posted 6/27/2010 3:24 PM (GMT -6)   
Oh yeah, I have had heparin shots into my stomach, 3 times a day, since I got here. YUCK and they hurt really bad. I am not sure why you would go to ICU, but try not to worry about it since it is only a possibility. I would also make sure everybody knew about your organs being reversed....maybe you need to hang a sign around your neck or write it on your chest with permanent marker....I don't know, but I would try to figure out something so everyone knows. I got the catheter out Thursday and should be able to leave the hospital sometime this week. They have kept me so long because my nausea was so out of control, that I could only eat ice chips. I have just today been allowed to eat soup and pudding, but am still on a liquid diet....I am assuming my doctor will advance my diet tomorrow to include mashed potatoes, eggs yogurt, soft foods like that. I have yet to take a pain pill because they left me on the pain pump due to nausea. I should get the pain pump removed tonight and then onto pain pills.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/27/2010 3:30 PM (GMT -6)   
I got Lovenox shots every day every time I'm in the hospital. It's pretty standard, I think. They do not hurt me at all, though. No big deal. I always got them in the thigh. I do bruise like crazy from them, though.
I had a catheter in only for a day every time. I demand it out because they bother me. I can't stand them and I'm really sensitive to them and have to move them around or they don't drain right. They prefer to keep them in longer, but I say "no, I'll get up"
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Starting Humira 6/28


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/27/2010 3:40 PM (GMT -6)   
yeah, my surgoen told me it has no feelings. some ppl wouldn't believe me/us saying this, but it actually sounds SOOOO great to me to be able to poop with no effort on our part..... it sounds SOOOO good. i'm REALLY tired of straining so hard, working on it so hard for hours to just get the urge and then eventually getting unsatisfying results, feeling so uncomfortable all day..... i'm exhausted!! i'm so ready to bye bye that and have the stoma do the work for me, YEAH!! well for some ppl that sounds crazy.

sure my surgery should be easier, cuz no removing parts this time, my surgeon said it's a very little procedure, about an hour. it's going to be an end ileostomy, no need for a loop. that end can always be reattached to the rectum (i hope the stoma works great and i feel so good with it that i wont want to be reconnected). i'm supposed to have it on July 8th or maybe 6th - well the secretary said she'd let me know about the exact date. my surgeon said it will be only a few days at the hosp, in hopes there will be no complications, of course.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/27/2010 7:19 PM (GMT -6)   
Tracy,
Sounds like your ileus is over and your "dumping" is slowing; that's all good. Remember mashed potatoes and my experience...go easy on those they are starchy though soft. You are really doing great. Pudding is good to eat and so is yogurt if you have no issue with dairy.

Christine,
Best wishes for tomorrow. Remember everyone's experience is different. But Tracy's recovery is pretty typical of what I know of this. Mine was not the norm because I had all that internal damage going into the ileo surgery. But Tracy is coming along right about on schedule.

Hodaya, Yeah already not having a colon, your surgery should be a piece of cake, but expect some ups and downs as they are the norm. I think you will be thrilled as 17 years is way to long to fight the battle that you fought.

Rosemary

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 6/28/2010 9:36 PM (GMT -6)   
hi!
 
im sure uv heard this already but i just wanted to chime in about the changing of the bag.  When i first had my surgery, my mom had to help me, i couldnt do it without crying and gagging, and it took like an hour! now i do it in like 5 mins and i may even wanna change my bag so it stays flatter for an outfit and i can do it really quickly! i hardly ever smell it when i change...its a process but before u know it its a piece of cake :O)
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you

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