Had surgery but still having problems - need some advice

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???

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

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