Continuing Pain After Surgery :(

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/23/2010 7:12 PM (GMT -6)   
Hi all!
I got my ileostomy on March 18th and then basically had it revised on June 8th because of a twist in my intestine/complete blockage. :(
 
Everything was healing GREAT after my first surgery, but ever since this second surgery, I've had pain in the left side of my abdomen after I eat. I have been to the dr countless times, thinking it was a blockage. I have even been to the ER. I have had a CT with contrast done, a regular CT, a small bowel series, and lots of blood tests. Everything comes back relatively normal. The only weird thing was that the barium small bowel series took about twice as long as my surgeon thought it should have, but it didn't show a blockage. I feel very full after eating just like a pb and j...it's like I've eaten a Thanksgiving meal. I don't know what this could be and I am at my wits' end. My surgeon says it may be adhesions but wants to wait to do surgery (as you can't tell if it's adhesions without actually looking inside/doing surgery) since I've just had two surgeries in such a short period of time. Supposedly my pancreas looks fine so they don't think it's pancreatitis.  As of right now my surgeon wants to wait two more weeks to do anything to see if it gets better, but I'm doubting it will. It feels like a side cramp, but closer to my belly button. I'm so SICK OF FEELING LIKE CRAP!!!
 
Does anyone have any idea what this could be? I feel like I've exhausted every option.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/23/2010 10:35 PM (GMT -6)   
could it maybe be that your stomach just hasnt gotten ready for much food yet? does that make sense?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/24/2010 4:22 AM (GMT -6)   
It does make some sense, but doesn't explain the pain that I have. i'd just get full fast then. Plus, after my original surgery, I had to eat small at first but after like a week or two I was able to eat more...and I never had pain with eating.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/24/2010 2:40 PM (GMT -6)   
did they check your gall bladder?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/24/2010 4:05 PM (GMT -6)   
Yep! That's normal too, and that would cause pain on the right, not the left.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/24/2010 5:32 PM (GMT -6)   
Can you get a second opinion? There is obviously something going on to be in pain after eating...and I don't think that a barium testing taking too long is normal...something caused it to go that slow!!

Is it possible it's another kink?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/24/2010 6:18 PM (GMT -6)   
I really really hope not. I had a ct with contrast so I would assume it would have shown up there. I trust my surgeon and he's going to take another look at the barium test. I have seen like 10 different people about this, so I have had a second and third and fourth opinion...everyone says the tests are normal and to wait a week or two.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/24/2010 8:00 PM (GMT -6)   
Could it be adhesions? I don't think adhesions can be seen on any xrays, ct scans, or mri's. When my doctor went in to do this past surgery, he saw ALOT of adhesions, EVERYWHERE, and he took some of them down, but did not have time to take them all down. What is weird about my adhesions, is he said I was born with them, and they probably contributed to my digestive issues over the years. So sorry you are getting ran from doctor to doctor. Tracy
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 7/24/2010 9:16 PM (GMT -6)   
I have been dealing with the same issue for a few months now. Pain after I eat, feeling full, also lot's of burping and nausea. Two weeks ago I ended in the ER because of this and a weeks stay at the hosptial. All kinds of tests were done. My small bowel test did show two areas of narrowing  ( adhesions ). Waiting for a surgery date and it the mean time what is helping is eating a low fiber/residue diet, small meals, Ensure, and juicing. Oh, my heating pad is my new best friend. For me it's been 10 years since the j-pouch surgery and 3 years since the gall bladder but I guess these adhesions can come up at any time. I was just grateful that the radiologist found something cause my surgeon did not want to go in just based on my symptoms. Adhesions are nastly things and really hard to detect.   
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 7/24/2010 10:15 PM (GMT -6)   
Stephanie  Oh I hate hearing that...My first thought was feeling full is one of the signs of pancreatic cancer, but if it looks fine, that's great to hear.  Maybe you should back off on the meals a bit to see if it passes.  Your so young and its just terrible that your going through all this.  All my prayers are with you sweetie...hang in there.
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/25/2010 4:45 AM (GMT -6)   
Susan, how did the radiologist find your adhesions? If they can't be detected on any test, my surgeon is hesitant to go in and fix them in case he ends up opening me up for nothing.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 7/25/2010 9:58 AM (GMT -6)   
Stephanie,
I just got lucky that my GI and surgeon are associated with one of the best radiogolist in NYC. Just luck. I had a small bowel test done 9 years ago for adhesions in another spot with another radiogoist and that test came back negative (although that test like you the barium went through very slow-much slower that it should have) and I suffered for years with that
( my fault cause the x ray at that time did show a partcial blockage and the surgeon did suggest coming back and taking care of it) until I had my gall bladder out and that surgeon took care of that spot. This time it is on my left side and under my rib cage. A regular x-ray this time showed nothing. I'm really nervous about more surgery and just want to get it over with. I pray that they find your problem cause I know what you are going thru. I'm a mental mess dealing with this.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/25/2010 11:21 AM (GMT -6)   
80'schick, they have to go in and do exploratory surgery to see if you have adhesions. They can do this laporscopically(sp?) too. I had xrays, colonoscopies, ct scans, small bowel follow through, defograms, and the doctors never "saw" the adhesions. It was not until my doctor took a peek inside laproscopically that he saw the adhesions and ended up having to open me up when he did my surgery in June.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 7/25/2010 1:13 PM (GMT -6)   
answers4me2
How bad was the sugery? I am guessing that it helped you?-can you eat anything now without porblems? How was the recovery, etc. Mine will be done lapro as well but was told that if the adhesions are too big I might have a liitle cut.
Thanks
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/25/2010 2:58 PM (GMT -6)   
Susan, the surgery was very hard and even now, 4 weeks later, I still have some pain in my abdomen when I cough, sneeze, or laugh. I assume this is from the removal of adhesions. My surgery was supposed to be 1 1/2 hours, but it turned into a 5 hour surgery when the doctor saw all of the adhesions.
 
I am ALOT better, a different person, since surgery and it was so worth it. Even with the ileostomy, I can eat food and not blow up like a balloon. My nausea "attacks" are decreased by atleast 75%. I can sleep laying down instead of sitting up because my food always came up in my throat and I have only had to take rolaids twice since surgery when before surgery I used to take a bottle of rolaids everyweek.
 
I am a little different than you though because I have colonic inertia, which ia a slow transit constipation. I also have a rectum that does not work.
 
My doctor said I was born with these adhesions and these probably contributed to my digestive issues. I have been accused of having anorexia since I was a teenager and I am not anorexic.
 
I asked my doctor if he thought these adhesions would kill me one day and he said he didn't know. smhair That freaked me out a little, but what can I do? Right now I feel so much better and am so glad the doctor has given me a better quality of life.
 
 
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/25/2010 6:05 PM (GMT -6)   
answers4me, why would the adhesions kill you if you had them removed? I am glad to hear you feel better after having the surgery.


susan, do you have a plan currently if your radiologist/surgeon thinks you have adhesions?

I've been through SO MUCH in the last year and I just want to get on with my life. I'm an emotional mess as well. I just want to know that things will get easier.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 7/25/2010 6:54 PM (GMT -6)   
They don't remove the adhesions they cut them loose. My surgeon is trying to get me on the surgical schedule this week. I'll know more tomorrow. I hope that I don't have to wait too long to have this done cause the waiting is making me nuts! and every time I eat I'm like-ok-will this put in back in the ER. Hanging in there!
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/25/2010 10:10 PM (GMT -6)   
Oh, I forgot to clarify that I still have a ton of adhesions that were not even touched. There were just too many for him to get them all. He did not just come out and tell me this, I just said, "doc, do you think these adhesions will take me out one day?", and his reply was, "I don't know." But he did go on and reassure me that I had been living with adhesions since birth and was still alive. LOL He also said more adhesions are formed with each surgery and this was my 3rd abdominal surgery.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/26/2010 7:46 AM (GMT -6)   
:(

This info is not good. This will be my third abdominal surgery (in just 5 months!) and even if they cut my adhesions, I feel like they're just going to come back and I'm going to be having surgery for the rest of my life.

:(
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/26/2010 9:32 AM (GMT -6)   
They did place some kind of an adhesion barrier in my abdomen. It is supposed to prevent further growth of new adhesions...not sure what it is called, but I will ask my doctor next time I see him. Ask your doctor about this...

It is very depressing, I know. :(
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 7/26/2010 10:32 AM (GMT -6)   
My doctor does not believe in those barriiers. This will be my 6th abdominal surgery-first time for adhesions. They might or might not come back. That is why the surgerns don't rush into things. Hopefully we will all the the lucky ones. ( I had 2 c-sects over 25 years ago-and nothing from that but a friend had adhesions come back after 15 years after a c-sect so go figure. (Actully, the radiogoist told me that there are adhesions all over-it's when they start messing with your bowels is when something needs to be done.)
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 5:56 PM (GMT -6)
There are a total of 3,006,220 posts in 329,318 threads.
View Active Threads


Who's Online
This forum has 161825 registered members. Please welcome our newest member, TheRayf.
308 Guest(s), 12 Registered Member(s) are currently online.  Details
Youngguy90, swimmer2, HeartsinPain, BangedUp, mattamx, oceanfisher58, Ides, Serenity Now, Admin, 61Impala, Alxander, CCinPA