constant pain after end ileo; also bright yellow output!

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Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 7/23/2011 4:45 PM (GMT -6)   
Hi Everyone,
 
I know I haven't written in a while; sorry!  I read all of your posts and pray for everyone constantly.  Even tho we are a small percentage of the population (people with colon/ileostomy problems) it seems we are a big enough group for doctors to focus more on solutions!!!   I had a brief period of time after converting from a loop ileo to an end ileo where I felt fairly good (end ileo performed on 4/26/2011).  Since about June 20th though, I am in almost constant pain and end up taking percocet almost every day.  I know percocet "slows things down" but I just can't stand the pain anymore!  I have been to Emergency twice in the last 3 weeks, they do CAT scans and say they can't find anything wrong!  Now I have been having this bright yellow (looks like lemon pudding) discharge from my stoma; kind of scary.  I do eat a little each day so I am not sure it is Bile.  I used to get more of a thicker, yellow-brown output at times and that, I think, was Bile.  Does anyone know what this bright, lemon pudding colored stuff
could be caused by?  Also, now I am seeing a pain management specialist.  He wants me to try a Lidocaine Pain Patch; put it right over the pain spot; well that would mean I put it over part of the adhesive (like a bandaid) that holds my wafer on.  That doesn't seem good, does it?  I am afraid the Lidocaine either won't get thru this "bandaid " or will cause harm to the skin so close to my stoma.  any suggestions?
 
Thanks,
Gilda

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 7/23/2011 5:21 PM (GMT -6)   
Hello Gilda,
I'm Serenitee, and I had a Temp. Loop ileostomy May 10, 2011. I see my colon/rectal surgeon September to discuss about making it permanent & removing my rectum. I definitely want this surgery. However, I had a couple questions for you...What is a "end ileo" does it just mean its permanent. When you went from the Loop to the End, did they leave your existing stoma site or change it? The reason I was asking is I like me current stoma, the size and its function is great. So I am concerned if I have the permanent surgery will they change my current stoma in any way?
 
As to your concerns. I am so sorry you are having such pain and worry over the color of the output. I can relate to unbearable pain day in and day out. Especially with having to worry if there is something really wrong that the Doctors are just missing. Very Stressful & scary I'm sure. I am so sorry to hear all you are having to go thru.
 
I currently suffer from absolutely excruciating, unbearable pelvic & bladder pain. I was just diagnosed w/Pelvic & Bladder Trauma & Dysfunction. I can hardly walk, sit, lay down, sleep as it is the most pain I have ever had to deal with. I'm am supposed to be starting physical therapy for pelvic floor dysfunction at the Hospital. They literally want me to go 8-12 times a week (thats at least 2x a day, I might as well bring my sleeping bag...Lol) Apparently, they attach electrodes inside the vagina and rectum. I am so not looking forward to this at all.
 
Besides all my intestinal problems...Between having 7-kidz (and the damage it caused in my pelvic region) along with a little over a year ago my colon tore thru the vaginal wall and then the colon and bladder fell out of my body. This was my 2nd bladder prolapse but the first one didn't fall out of my body. I've had 2x bladder lifts w/mesh, 2x rectoceles, 2x enteroceles, hysterectomy, C-section, ruptured appendix (almost died from), Psuedomembraneous Colitis, C-Diff too many times to count.
 
I'm so sorry I rambled on & on...Would love to chat some more. Look forward to anymore of your posts or if you wanted to email me my email address is listed under my member profile. Best of luck to you, and I will be saying prayers for things to get resolved for you and the pain under control.
Hope to receive an email from you and would love to chat.
Your Healingwell Friend, Hugz & smiles sent your way.
Serenitee
 
Bipolar 2, Manic-Depressive, Borderline, Anxiety/Panic Disorder, Ptsd
 

Beethoven's wife
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 7/23/2011 8:29 PM (GMT -6)   
Hi Gilda,
I just want to let you know that bile is green, not yellow or brown. I hope you get your pain issues under control.
Rhoda

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/24/2011 12:55 AM (GMT -6)   
Gilda,

Is the stoma output clear yellow that comes out very rapidly and fills bag after bag and you need 4 immodium to thicken it and slow it down?

If so, I have had this and in my case it was either due to too much sugar, too much salt, bad tap water I had swallowed, or in one case unknown cause. The last time I had this it went on for 7 hours and I ended up with dry heaves from dehydration. Luckily 4 immodium kicked in.

OR is what you are saying is that your actual out put is the color AND consistency of lemon pudding? This I would not even have a guess as to what is going on. The pain, my guess is may be adhesions as by now you have had multiple surgeries. Only a guess on my part. You can have adhesions that are painful yet are not obstructing your small intestine. If these were obstructing, they would have showed a narrowing of the bowel on the CT scan. A more accurate imaging test you can have is a CT enterography, just like a CT scan you drink stuff and they put in IV contrast. Then the scan itself is fast.

Sorry things went downhill for you as you had been doing quite well and moving on with life.

This is all I can offer for ideas. I would not let anyone put a pain patch in a place that would interfere with the adhesive or too near the stoma. But ask your surgeon. Good luck. Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/24/2011 3:52 AM (GMT -6)   
hi Gilda,

i'm sorry to hear you're in pain. have you seen your surgoen about the pain, or just the er docs? i had pain all around the stoma for a while few mons ago. it continued for about 3 weeks and just the day before i was supposed to go see the surgeon it stopped. i ended up not going to the surgeon and the pain never came back since. i have no idea what that was. it was very painful tho. i'm just glad it's gone. my first guess would be a hernia or some kind of an infection of the muscles neer the stoma. hope it's nothing serious for you too.

bile can be either green or yellow. i had yellow lemon jelly like (not pudding) output few times. it happens to me only after not eating for long periods of time. like if i eat my last meal at 16:00 and then eat only the next morning. but it wasn't much. it was something like one tea spoon and i didn't give it much thought. what do you usually eat? do you drink enough water?
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/24/2011 10:47 AM (GMT -6)   
     Gilda, what does your diet consist of?  Perhaps the yellow color is from something you are eating.  Bile is usually green but I suppose it could be yellowish. 
     If you continue having this pain, I would consult the surgeon.  I had problems post op, not so much pain but bleeding from the vagina and I am twenty years past menopause.  My surgeon thought it stemmed from the surgery but still insisted I see my gyn doctor.  Had to have a transvaginal ultrasound..ugh and MRI's.  All were fine, so the surgeon was correct but better be safe than sorry.  Did any doctor suggest MRI???

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/24/2011 2:55 PM (GMT -6)   
When my Crohn's flares up and cannot eat much then I get bag fulls of very watery yellow liquid. This is bile and mine is yellow not green, colour is different for person depending on what they eat and how much. Also if you are drinking lots but not eating much this can also cause it.

The pain needs to be investigated by your GI/surgeon so that is can be sorted for you. It could be scar tissue healing or muscle problems, whatever it is they need to run some tests like contrast MRIs to get to bottom of it.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 7/25/2011 4:30 PM (GMT -6)   
Thanks for everyone's replies. The output I had was I guess more the consistency of jello and it was a bright, bright yellow! It really scared me and I felt awful for several days. Then, 2 days ago i got some Lidocaine Patches and they are helping to control the pain. Usually I have absolutely no energy but the Lidocaine seems to be giving me some! I have lived my life at doctors for many, many years now so I am hesitant to go see anyone else. If these patches continue to control the pain then I will use them and stop "searching for answers" none of my doctors seem to have. The biggest problem I have tho is that my pain is usually coming from the stoma or an area near the stoma which is covered by the wafer. I have used the lidocaine patches for 2 days now and I just put them as close to the wafer as possible; sometimes they overlap the adhesive that holds on the wafer. Whatever, as least yesterday I was pain free and had some energy. Thanks everyone for your responses! I still have a problem with almost always feeling weak and very tired but like I said, yesterday I had energy and the LidoCaine Patch is the only new thing I am trying. Talk to you soon. My best to all of you.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/25/2011 4:36 PM (GMT -6)   
Good I'm glad the patch helped. That is weird about the yellow jello type output, but whatever at least it passed. Are you sure there is no food blockage behind your stoma that is causing the pain? Like has what you have been eating been coming out.

I am finding that if I feel something is feeling trapped behind the stoma if I stretch way up straight then it comes out. I KNOW I am having slight issues from gaining so much weight since my ileo, so am working to lose some weight.

I know what you mean about being sick of seeing doctors. If you are up for ONE MORE TIME, you might want to get a CT enterography and just drink plain water for contrast. THis dilates the small bowel and if there are no narrowings you at least have the peace of mind to know that your pain is not going to affect the function of your stoma. Maybe skin or muscle level adhesions may be the issue. Is it better or worse if you move? Sometimes movement is good, sometimes not, only you know. Anyway, glad you are getting some relief. Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/26/2011 2:34 AM (GMT -6)   
gosh Gilda, i wonder what this pain is all about. you didn't have it right after surgery, did you? when did it start? how far from surgery did you start feeling this? what most concerning is that the drs don't know what it is either. i'm so sorry. i hope it goes away just like mine did.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/26/2011 2:13 PM (GMT -6)   
The only problem with scans is with the wafer in place it is sometimes difficult to see ehat is going on right behind the stoma. I had that problem 6 years ago when I developed an abcess. They drained what they thought was the main abcess but it kept coming back repeatedly over the next 6 months. It was only when it came back for the eighth time and I also had blockage and strictures that they fully opened me up and after repairing the strictures they moved onto the abcess. When they tracked it back to the primary site it was an abcess wound around the base of the stoma underneath the skin but couldn't be seen on the scans because of the wafer/bag.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/26/2011 4:51 PM (GMT -6)   
Gilda,

I'm glad the patch helped .... sounds so hard. Thinking of you.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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