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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/21/2009 8:08 PM (GMT -6)   
It's been two weeks since my surgery and my stoma hurts super bad.  It seems to be all internal.  I feel the output as it goes up and through and it just hurts.  Why is that? 
 
The majority of my soreness from the surgery has subsided and the only thing bothering me is my back (hips, lower and lower/middle, I think from laying on the surgical bed and my minimal activity) and stoma/ostomy site. 
 
What does a blockage feel like?  Have I done something to harm myself?  Maybe it hurts b/c I'm possibly maybe over doing the lifting thing? 
 
Just my thoughts.
 
Thanks you guys!  smurf
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/21/2009 8:15 PM (GMT -6)   
The last time my stoma hurt, it was the beginning of a partial blockage, so make sure you drink plenty of fluids, take some pain medicine to help relax everything, and eat a soft diet until the pain goes away. If you stop getting output and throw up, then you have a blockage and should call your doctor. Keep us posted on how you're doing.
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/21/2009 9:26 PM (GMT -6)   
drink V8. that stuff goes right through me and cleans me out. so does gatorade.
If you are still hurting on Mon., call your surgeon. You can at least tell the nurse and if she's concerned, she'll make you an appt. to see Dr. *******. devil
If you are taking pain meds, and it's still hurting, don't wait-call your hospitals nurse hotline (some insurances have that benefit too)

I have pain UNDER my stoma and it's muscular. From DOING TOO MUCH!!!!!

Don't do it Robin.........don't do it............ nono...........stop cleaning!..........sit on couch to pick up Jackson...........no more shopping for a week..........no more jumping rope..........don't paint your house or chip off the old paint for a while..........don't go bungee jumping just yet.............stop hosting huge banquets.........hanging that new garage door can wait..........sleep as much as you can!

Those are Chassity's orders. (I know you're just like me and can't give up your chores, but like you told me, try to rest. I KNOW you're doing too much).
Have a TV day-rent some children's movies and just veg with your baby on the couch. He'll love just being with Mommy and cuddling, since he didn't have you for a while. Make your hubby do laundry, dishes and cook.

I read somewhere that your back hurts after these surgeries b/c you stomach muscles are weak and your back is compensating for it. Mine is still hurting. It feels like it did when I was pregnant. smhair More weight than what it's used to.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


crazybirdman
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 2/21/2009 9:32 PM (GMT -6)   
Robin,
I have been out of surgery 3 weeks Friday and I have been wondering how you have been doing sence your surgery.
I had the same thing done that you have had done but I was already used to an eliostomy where my large bowl has been bypassed for 4 years.
I had to stay 14 day in the hospital because my small bowl would not wake up and I had a small blockage that worked its self out on its own (Thanks God).
 
I can't drive yet,can you?
 
I want to give you a bit of advice and tell you what ever you do DON'T be lifting anything because I got a hernia in my last stoma and it had to be fixed.
 
Please drink a lot of water and chew chew chew untill everything heals. your body will adjust to having a stoma and things will start to work its self out. Life will be wonderful just wate and see. put that in your head.
I am having the most trouble of losing opionion so to speak, there are a lot of nerves down there and that is where I am having most of my pain.
Another week is going to make a big differance but I think that it is going to take all of that 6 weeks and then some to get through all of this.
Good luck and good health to you and your family and may God keep and bless you all.
                                                                                                                  Troy       

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/21/2009 9:56 PM (GMT -6)   
Robin,
Be very careful lifting Anything for a little while. Keep in mind that your body is adjusting to stuff being totally moved around internally and it is just finding it's new home, so to speak. Stick to a fairly easy to digest diet for a few days and push the fluids. If you don't see a change, definitely call the doc. If you have ANY nausea or the pain does not subside at all, contact your dr or ER right away. This is the time that scar tissue forms, right after surgery. That is natural - just a part of any surgery and you cannot stop it from happening. But overdoing it can cause more problems than it is worth. Take it easy and be patient. It will pay dividends in the end.

Keep us up to date and let us know how you are feeling. I will try to check back in while I'm here in FL on vacation.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/21/2009 10:09 PM (GMT -6)   
It is SO HARD not to do much. I know I'm doing too much with my son, but not lifting him at times is crazy hard. I may need to ask my mother-in-law to keep him at her house during the day so I'm not tempted. Besides, it'll give me a chance to get some things done around the house. Not labor chores, but organizing and sorting...ordering pictures...floral arrangements...etc. I'll call her in the morning.

I'm going to try driving tomorrow. I have some errands to run so I'm planning on driving, but my mom will be with me in case it's not a good idea.

What does a hernia feel like? I'm scared that I've done something stupid that may have done some damage. I will definitely push the fluids and though I don't like V8 I may choke down a can if it means getting things pushed through.

I'm a little pissy with myself for being such a shmuck. Those darn hosting jobs and marathons I've been doing just have to be put on the back burner. : )

THIS IS SO HARD!!!!!!!!

If only I had super healing powers.
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/21/2009 10:12 PM (GMT -6)   
Try gatorade if you don't like v8.
It pours out of me too.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/22/2009 8:15 AM (GMT -6)   
Just remember, even though you "feel" healthy, your body is RECOVERING from MAJOR surgery!!!!!!!

Everything in your abdomen is looking for its "new home" the back pain is normal, but my guess is that the stoma pain you are having is from doing TOO MUCH. I'd been through MANY resections and ostomy surgeries and I thought I would sail through my proctocolectomy...I had the wind taken out of my sails when I was down for a good 8 weeks...I've never experienced the stoma pain, like you mentioned, but I didn't even lift a laundry basket for those 8 weeks! My family would bring everything to the laundry room and I would put one piece at a time in...think body healing...activity is BAD, but only for a short time:)

Take it easy for a few days...

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/22/2009 12:17 PM (GMT -6)   
I know I know. It really is HARD!!!!!!!!!!!!!

I'm definitely going to take it super easy the next few days. My mother-in-law is going to keep my son during the day a couple times during the week, and my mom is going to be here a lot while my husband is at work. It just really sucks b/c I'm not the 'lay around' kind of person, so this is torture.

It's also taking everythig in me not to scrub my bathroom floor and sweep the kitchen. The next home I have we are not using white tile in the bathroom...I had no experience when I designed that room. I have a white tile floor with a white pedestal sink and a clawfoot tub...along with lots of mirror and glass. That room shows the first sign of dust and mess just minutes after it's scrubbed and cleaned. Grrr.

Oh, something else I feel is the urge to pass gas the 'normal' way. Is that b/c my small intestine is settling toward the bottom? It's a weird feeling and I call it phantom farts. : ) I don't know what to think of it. And the pain I feel is both muscular and a burning sensation around and in my stoma. Does that sound familiar to anyone?
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/23/2009 5:34 AM (GMT -6)   
That's good that you're going to get some help. Maybe you can work on a project that involves sitting, like putting photos in a scrapbook. It's completely normal to have phantom urges in the beginning. They will go away. Oh, regular coffee flushes everything, too! :-)
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/23/2009 1:55 PM (GMT -6)   
ugh white tile is AWFUL and no matter how many times you clean it it still looks dirty, it's like you just push the dirt around, lol
the phantom gas feeling is normal, i have that too, and the phantom poo feeling. I still get it sometimes, esp if i have to pee really really bad, it gets worse. The only thing i know to do is to sit on the toilet and pretend, or just deal with it. It happened more often at first but now it doesnt happen that much.

crazybirdman
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 2/27/2009 6:13 PM (GMT -6)   
Robin watch that burning thing it sounds like you are doing to much.
I had that same burning thing when I caused my hernia.
4 weeks today and I feel good but I think I am getting a cold.
Troy

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/27/2009 9:08 PM (GMT -6)   
Troy...

Can you tell me more about your hernia and what it felt like? How was it treated? My pain isn't as extensive as it was when I posted a week ago, as I have tried to take it easy this past week. However, it does still hurt and sometimes there's still some discomfort when output passes through. I'm just very tender internally as well.

I would really appreciate information regarding a hernia.

Thanks!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


crazybirdman
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 2/28/2009 2:56 PM (GMT -6)   
Robin,
The first thing that I want to tell you is that the type of stoma that you and I have now is harder to get a hernia in than the stoma that I had 4 weeks and 2 days ago.
If you have created a hernia you have picked up something way to heavy. way over the 10 pounds that my doc said to pic up.
If you have created a hernia your gut will push out the side of your stoma the gut pushes out between the skin and your stomac liningyou will be able to see the bulge and when you lay down on your back it willgo back in like it is suppose to.
Hernias of this type do not have to be fixed unless you have one that is huge and it bothers you, mine bothered me alot unless I had my hernia belt on, I never got out of the bed unless I had it on.
Even though it is fixed now I still ware it because it gives me security.
You may want to get one gust to have or ware to give you security and support around the abdominal area
it will take some getting used to but what isn't in all of this. I use Edge park to get my supplies and they have them.
That burning thing makes me think you may be lifting to much to quick!!!!!!!
Troy

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/28/2009 7:58 PM (GMT -6)   
I admit...I was lifting my son, and I did the bent over lifting quite a bit...like I lifted him into his beanbag. I've picked him up out of his crib, and put him back in it. He's about 25lbs. I haven't done much of the picking up from the floor. I did today my complete accident and by habit, but I didn't hurt and I do not feel hurt. But I am going to continue watching myself. I'll also admit that I walked him to sleep last weekend. It felt so good. I used to walk him to sleep before each nap, each bedtime...it was so lovely. However, I will not do it again until my 6 weeks are up. I also feel some pain in my bootie area...that it's fun.

Anyway, I am going to take it super easy and try to not do too much. I made taco meat tonight and I just really do not like standing much right now. I went out of two to visit my grandma in the hospital yesterday and did a little shopping afterward. I was in pretty bad shape after coming home, going to dinner with my family and then doing more shopping afterward. So, today was kind of tiresome. : )

Anyway, thank you so much for sharing your experience. I do not want a hernia, and I have not noticed the bulges you spoke of, so that's a good thing!

Thanks again!!!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


crazybirdman
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 3/1/2009 3:39 AM (GMT -6)   
Robin
Walk alot!!!! It will not hurt you and it well help your back and everything I would bet I walk 5 miles a day.
Troy
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