Update and question about stomas

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Regular Member

Date Joined Jun 2008
Total Posts : 221
   Posted 4/29/2009 6:57 AM (GMT -7)   
Hi everyone-
I just thought I would keep you all updated on what is going on.  I went and saw my surgeon here in WA yesterday and he saw the begining of another abcess this on close to the vaginal wall so I  am going in for another surgery today.  With a possible seton placement.  This will be my 4th surgery since the 19 of March.  I am not sure that this is safe or advisable to have this many surgeries so close together but what else can I do.  Plus I trust my doctors.  My sergeon said that I should really consider a stoma as I am on the max dose of all drugs that would help the abcesses (200mg Imuran, 10mg Remicade every 4 weeks).  I will be seeing a GI here next week and we will most likely do more tests and see if my crohns is flaring anywhere else.  And go from there.  I am just getting so tired of all the abcesses and the surgeries and never getting better.  Every couple of days I seem to form a new abcess I think I might be a freak!! JK.  
Anyways I was wondering if anyone has had a stoma and how they delt with it and if it helped heal the abcesses so they stopped coming back.  Or if anyone else has had reacurring abcesses everycouple of days what they did.  Any advice at this point is helpful.  At least I am home so I have the support of my family close by. 

Anniegetyour gun
Regular Member

Date Joined Mar 2009
Total Posts : 20
   Posted 4/29/2009 8:01 AM (GMT -7)   
Hi there
I wish I could tell you that a stoma will take away all your problems.  Perhaps it will for you.  But my son (26 years old) had a stoma (colostomy) in October 2007 due to excessive surgeries because of abscessess and fistulas in the perianal area.  As an encouragement he has said that the stoma part of it was the easiest to handle and he has coped extremely well.  Even in the Corporate world (he is an Accountant) he jokes about the noises that sometimes occur unexpectedly, but has taken the line of just pretending nothing has happened!  And keeps everyone around him wondering what on earth was that noise (ha-ha).  He is married and during this difficult time even became the proud Dad of a beautiful little boy.  He manages the stoma extremely well and it does not inconvenience him tooo much.  When he feels well enough he plays tennis and carries on as normal.  THe only sport he has laid aside is scuba diving - I'm not even sure why.  (Perhaps the bag will explode????) 
Regrettably there has been a recurrance of fistulas which finally after 2 years led to the diagnosis of Crohns.  He is on Imuran Flagyl and Cipro, but is waiting to start Remicade. We are all hoping that Remicade will be the answer for him.
Keep on smiling and believing that today will be better than yesterday and tomorrow will be better than today.
Concerned and loving Mom
Johannesburg - South Africa

Regular Member

Date Joined Apr 2009
Total Posts : 51
   Posted 4/29/2009 4:13 PM (GMT -7)   
When I was first DX and had my first surgery I had a temporary stoma. The idea was to rest the bowel as it was riddled with fistulas and an absess that was draining into my hip. I wore a bag for 9 months until my lower intestine was healed. After the stoma was closed and the bowel was functioning again I felt much better for a few years then the scaring and inflamation returned but I have not had a fistula since. I believe that I have been fistula free because my CD is concentrated in the ileium.
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been very low doses of prednisone. Refuse to take anymore immune suppressants.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 4/30/2009 5:33 PM (GMT -7)   
Hi Dreamer Don't have much expericence on stoma's but hope you make out good at the Dr.s some people seem to do better after a temp. one .Would a resection be of any help in your situation my fistula's were up higher. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 5/1/2009 6:25 AM (GMT -7)   
Hi Dreamer!

I had an abscess reoccur because the first doctor didn't treat it properly. I am wondering if this is the case for you. So I am praying your surgery today will get rid of it for good! As for an ostomy, I have read that giving your rectum a rest can really help with healing. I would get a second opinion, of course, because it is alway good to get one.

Take care!! Let us know how you are please!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Regular Member

Date Joined Jun 2008
Total Posts : 221
   Posted 5/1/2009 10:39 AM (GMT -7)   
I have had abcesses in multiple areas and now have a second fistula. I have had three different surgeons so as far as it being the surgions problem I dont see it as that. Expecially since the abcess are in different areas I have also had my GI and sergion in London recomend a stoma or resection and my surgion here in Spokane as well tell me to think about it. I see a GI here next week and have my post op follow up in two weeks. The stoma will be at the top of my questions to ask the doctors. Right now I am so tired of the surgeries and the butt pain that I would saw off my butt if I could. So a stoma for a few months might be a good idea. But I feel really self conscious with the bag idea, and with summer coming can you go swimming with a bag and everything? I guess I just have a lot to think about. Thank you all for your advice and for caring it helps me get through my day.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 5/1/2009 3:47 PM (GMT -7)   
So many surgeries is really tiresome just to think about -- let alone endure. It sounds like you have an option that may help. I totally understand being willing to get an ostomy if it would get me off the merry-go-round. Still not out of the question for me if the 6MP fails. Back when I was so sick, I checked out the Ostomy Forum just to find out what having one is like. They are a great bunch of people and will welcome you warmly and answer any question you have.

Pet your dog for me! He/she must be so happy to have you home!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/1/2009 4:40 PM (GMT -7)   
I'm very close to that myself and reading this thread has been helpful. I have an unhealed abscess as well as out of control flare for 2.5 years. The only thing that's helped is steroids. I am giving Cimzia a couple months after I get off this steroid taper (next month or so) and if it doesn't work, I'm in for the temp ostomy for healing and maybe even just a little longer until something else comes along.

I am supposed to go in for another seton placement myself in a week (my surgeon is out of town). I am just SO tired of feeling like this all the time. I need a break.

Best of luck with your decision. It's a hard one for me but I somehow realize that if I just go for it, I'll be thankful to feel decent and be healing.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 5/2/2009 3:19 AM (GMT -7)   
Hi Dreamer, it is a big decision to make but I guess if they are talking only temporary then it may be worth it. I had an ileostomy on march 4th due to my crohns being so bad the drugs no longer worked and I became so ill it was a case of life or death for me. Having the bag makes me a bit self concious at times too but it has been the best thing for me as I have never felt this well but in saying that I cant have a reversal so the bag is going to be a part of me for the rest of my life which at times reduces me to tears so physically Im doing great but still have some emotional issues to deal with. Good luck with whatever you decide to do and keep us posted. If you have any questions about the bag dont hesitate to ask me or you will find that they are a great help on the ostomy board as well. Oh and yes you can go swimming, although I havent yet I so believe its not a problem.
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