Had surgery but still having problems - need some advice

has anyone suffered from colitis after surgery
0
never - 0.0%
1
yes - 100.0%

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

snowbear
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/9/2008 3:18 AM (GMT -6)   

Hi,

 

This is the first time I’ve used theses and im hoping someone might be able to help me. My mother has Ulcerative Colitis as well as my brother and my uncle. The person I am asking about today however is my mother. She had ileostomy surgery over a year ago but unfortunately this has not solved her problems. The disease came on her very fast so she was rushed into surgery which we didn’t know much about at the time as it was never a road she wanted to go down. They removed her large colon however did not remove her rectum as they said it was too big of an operation and she wouldn’t of got through it. A week later her spleen ruptured and was removed. It took her many months to recover from her two major surgeries. Over a year later and she is having nothing but problems. She has mouth ulcers all the time they never seem to go away. She gets reoccurring thrush in her mouth. She has a skin abscess beside her stoma for the past two months and the main problem she is having is the colitis is back. She is still loosing blood and mucus from her rectum which was left after the operation. We were never advised of this before the operation and we were only advise after months of suffering that it was infact the colitis that had returned. The doctors she is attending do not appear to be doing anything for her as all of these problems are ongoing and they do not seem to know why or have a solution. Instead my mother is left to suffer every hour of every day. I don’t know who to turn to as the doctors in my opinion are doing nothing for her. Has anyone else suffered from any of these problems??? Please help with any advice you may have???


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/9/2008 6:20 AM (GMT -6)   
Hi and welcome to Healingwell...I am so sorry that your mother is going thru so much. Personally I think she should be seeing a different a doctor. One that knows what they are doing! But we also have a great Ostomy board here on HW that may have more answers for you. We do have a couple of members that frequent the Uc board and have had surgery but the majority of us are still suffering with our disease. Good luck to your mother and you are a great daughter/son(?) to your mother just by seeking advice and help.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/9/2008 7:17 AM (GMT -6)   
Snowbear, if the surgeons haven't been helpful your mother might consider seeing a gastroenterologist. Perhaps she would be given additional options, and be checked to make sure the initial diagnosis was correct.

I hope your mother finds relief soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/9/2008 7:26 AM (GMT -6)   
So very sorry your mom is suffering like this! It sounds like her doctors are not doing their jobs. Time for different doctors! Is it possible for your mother to visit a major medical center such as Mayo Clinic or Cleveland Clinic? It sounds like she needs some major care!

Since she still has her rectum, has the doctor given her any Canasa to try to help the inflammation there?

I hope she finds some relief soon!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/9/2008 9:56 AM (GMT -6)   
It sounds like she may need a new GI. My first one misdianosed me for a full year. Your poor mom!! Does she take any probiotics? It sounds like she has a yeast overgrowth. Search for probiotics here, they have been shown to help with UC, and my GI told me they help also.

snowbear
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/15/2008 4:24 AM (GMT -6)   
Thanks to everyone for their replies.... we have now being told that they think it is the colitis that is causing the problems she is having with her mouth and the abscess she is in a small percentage that has these problems after the surgery they are looking into how they will now treat this its sad that it has taken a year to get this far. Please god we will get a solution soon and she can start getting back to some kind of normal life. I hope you all find a solution to your problems its such a curse of a disease and has hit 3 people in my family now. Please god more research will be done into it and one day a cure will actually be found smilewinkgrin

Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 10/15/2008 11:40 AM (GMT -6)   
You may also want to visit www.jpouch.org and the forum board there you'll find others who've had the surgery and how they deal with the complications after surgery. However, if you Mom still has her rectum that is the likely culprit since UC often begins in the rectum. Mark had the surgery and they removed his colon and rectum to remove all the UC.

Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/15/2008 12:44 PM (GMT -6)   
How long out is Mark post-op and how is he doing?
Mark & Megan said...
You may also want to visit www.jpouch.org and the forum board there you'll find others who've had the surgery and how they deal with the complications after surgery. However, if you Mom still has her rectum that is the likely culprit since UC often begins in the rectum. Mark had the surgery and they removed his colon and rectum to remove all the UC.



Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 10/15/2008 5:22 PM (GMT -6)   
bbc, you can get all the news on Mark at the website listed in his and Megan's sig.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/15/2008 5:31 PM (GMT -6)   
Just wanted to know if he is doing well post sx or not...hopefully he is, thanks
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 10/15/2008 6:21 PM (GMT -6)   

Snowbear,

What it sounds like is your mother has diversion colitis.  It is fairly common (one in three was the number my surgeon quoted).  As soon as I decided not to have the j-pouch surgery the surgeon set up the complete removal surgery.  I had the same things post op from my first surgery, blood, mucus, and the urgency feeling 4 or so times a day.  My surgeon put me on some rectal meds to try to help until the surgery but they did little to help.  If your mother is planning on keeping the ileostomy and not going for any reconnect surgery then I would definately talk to the surgeon about removing the remainder now that she is not as sick as she was prior.

John

Total Colectomy with End Ileostomy May 27th, 2008


snowbear
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/16/2008 3:06 AM (GMT -6)   

John,

 

Thanks for your reply I am interested to find out more about your condition as it sounds so similar to my mothers. Did you suffer from Ulcerative Colitis before your original surgery? How was your Diversion Colitis tested for? Was the operation to remove the remaining part of your rectum a big one as we were told it was major surgery for my mother. Did you have any other systems from the Diversion Colitis?

 

Sorry for all the questions but you are the only one I have come accross in a similar situtaion. I hope to hear from you again

 

Many Thanks smilewinkgrin


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 10/16/2008 5:43 PM (GMT -6)   

snowbear,

Yes I was diagnosed with UC a little over five years ago.  In February of this year I started having the worst flare I had ever witnessed.  My GI put me back on pred but no other meds and that is when I went septic.  Long story short, I was life flighted to the city and spent 7 days in ICU with a 10% chance of survival.  I was in bad shape and when we talked with the surgeon she said I really needed to have the colon out pronto but as sick as I was we would need to wait on the rectum removal.  After the surgery and numerous test of my adrenal glands I was finally able to slowly taper off of the prednisone.  After that the surgeon said I was healthy enough to have the rest removed so that was done August 12th I think.

The diversion colitis is not tested for that I know of.  It is common enough that a patient that has UC type symptoms after surgery is said to have it.  The concern of my surgeon was if we waited to long they may have to put me back on some form of steroids which would compromise any surgery since it makes the tissues thin and harder to hold stitches.  My symptoms were blood and mucus normally only once a day or every other day.  This was a very small amount but the worst part was the urgency feeling 5 or so times a day, most of the time with nothing to show for my running to the bathroom, LOL.  I also started having the worn down feeling again and also the joint aches.

Disclaimer: This is only my account and should not be taken as the standard for most total colectomy surgeries.  As you can tell with the disclaimer it didn't go as well as the first surgery (removal of most of my colon and ileostomy construction).  The surgery itself only lasted about three hours, they had to make a full incision in my belly unlike the first surgery which was done by laproscope (sp?).  The first three days of recovery seemed to go well but on the forth day (the day I was supposed to be discharged) I started felling under the weather.  At first we were thinking blockage until I finally got sick which unfornunately ripped my incision on the front open and exploded my pouch at the same time.  The surgeon on call was called in and he removed the staples from the part that opened up, cleaned the wound then packed it with gauze.  This prompted a longer hospital stay and it was later found that I had an infection in both my front and rear incision.  When my surgeon looked at it that next week she felt it would be best to go back in, open the rear incision and clean it out in the OR.  This made a world of difference and the healing started.  The total time in the hospital was 15 days and after that home health has had to come in and repack my incisions daily.  The surgeon left them open and had them packed so that they would heal from the inside outward.  Again, this is not the norm and is probably a fairly uncommon occurance.  Either way I am totally satisfied because my rear incision is almost completely healed now and the front one has been healed for better then a week now.  I do not have any more symptoms and hopefuly this means I can finally get on with my life and enjoy it without UC.  Today is the best I have felt in over five years and it just keeps getting better.  I don't move as fast as I did prior but I would guess it has a lot to do with a total of 31 days in the hospital combined with over two months of bed rest.

From what I understand the rectum/anus removal surgery is a very delicate one since a number of nerves and muscles run through that area.  My recover has gone well and I haven't noticed anything out of wack so I would say it was a success.  I just know if I would have had the removal at the same time when they removed my colon along with how sick I was at the time that the outcome may have been not so good.  I assume that was my surgeons concerns and why she opted to do it in two surgeries instead of all at once.

I hope this information helps some and if you have any more questions just ask and I will try to answer them.  I hope your mother is doing better and if she is healthy enough she can go through the removal surgery to rid her of all of these terible symptoms.  Again, my story is unussual so please don't be scared by it.

John

 

Total Colectomy with End Ileostomy May 27th, 2008

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, April 21, 2018 7:29 AM (GMT -6)
There are a total of 2,953,872 posts in 324,050 threads.
View Active Threads


Who's Online
This forum has 162117 registered members. Please welcome our newest member, Lynn5406.
326 Guest(s), 9 Registered Member(s) are currently online.  Details
pasayten, Burjou, Livv123, NiceCupOfTea, Saipan Paradise, Plate Blocker, OriolCarol, k07, straydog