incontinent - going through a very hard time

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Regular Member

Date Joined Dec 2008
Total Posts : 75
   Posted 2/6/2010 6:46 PM (GMT -7)   
So to shorten a very long saga -I  had surgery almost a year and a half ago for one thing but the lovely surgeon did something entirely different without my consent. While she did the wrong procedure she happened to cut through both my  (very healthy and in perfect working order I might add) internal and external sphincter muscles. She insisted she did nothing wrong and just kept telling me to drink Metimucil and it will get better. HA!  It was then almost 8 months later, I realized that I was 26 years old and could not control my bowels - how could this be??! This wasn't supposed to happen. Even though I have had Crohn's all my life I had no problems with making it to the bathroom in time. Geez,  I could hold it in for days if i wanted to even with the worst D! So a year later I decided to go to the best. There was no room for anymore error and I went straight to Cleveland Clinic. There I met with one of the countries top colorectal surgeons. I was very shameful, embarrassed, and angry at my condition. Angry in so many ways but mainly because it was caused by someone else's stupid mistake. Through all of it I still had a little hope - I thought to myself--hey, its just a little muscle - they can easily reconnect that right up! Boy i was wrong. After tests and x-rays, even the dr's at the CC, who have seen it all, were shocked at how much this surgeon damaged me. They delivered me the news I did not want to hear: "You will never be 100% again" This is a life long condition that may be improved slightly but not guaranteed through surgical procedures. I went through with a pretty serious repair surgery. Jump ahead to 8 weeks of disability and a very sore bum, low and behold i could hold! Significantly improved! But wait. Oh no, an anal fistula formed in the incision site - lovely. I am 2 months away from getting that fixed which is another procedure in itself. But why I am so upset and the point of my long story is that  the control is slowly deteriorating. The accidents have returned, my fear and worries are stronger then ever and my whole life has completely been turned upside down. It has been for almost 2 years now but its so hard because for a moment in time I felt so good and then it came crashing down. I commute 2 hours each way to work in NYC. I now have to drive because the bus has no toilet. My desk is far from the bathrooom at work and it is a nightmare worrying every second "if" I'm going to make it on time. Even when I don't have to go I feel a constant sensation that I do and I am in constant fear of the worst. I've had bad accidents while at work (luckily no one knew - I'm like a ninja) Its effecting my relationship since I am always worrying and let's be honest, the bedroom has gotten to be an issue. I can't just jump in because I have to constantly be protecting myself with a pad or tissues or because I have a fear of smell. No matter how much I clean myself I still have that smell (constant leakage and the fistula) down there and I never want know...because of that. My poor boyfriend -bless his heart for being sooo supportive and understanding but geez, I feel so bad. I feel bad about myself. My mind is in constant anguish and it is so stressful on me. I don't know how to cope. Some days I am strong and pretend I am normal and other days I feel like there is no hope.  My life is on hold. I don't do ANYTHING anymore because of this. I don't know if I should go on medication because I am so down or to help with the worrying. I'm sorry for the long guys seem to be the only ones that would truly understand.
27 yo Female, Crohn's, stricturing type- terminal illeum.
symptoms at age 2....Diagnosed at 6
Bal-resection 1998
Have tried it ALL Currently on Humira, Fish Oil, D3, Entocort, B-12 shots, Align, Multi

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 2/6/2010 7:09 PM (GMT -7)   
Oh LauryLu I am so sorry you had this happen to you! (((((((((((((HUGS!!!)))))))))))))))

I had a bad surgeon too. He totally mis-diagnosed even though the referring doctor got it right. His mis-management of my case caused a huge infection that nearly killed me. And six months off of work.

BUT the damage wasn't permanent. I am so sad to hear yours maybe long-term! What options did the good doctors at Cleveland Clinic give to you? If an ostomy was one option, I suggets you pop over to the Ostomy board and ask those good people about it.

How difficult it must be to function and hold a job when you are constantly worrying and at risk of going. And a four-hour commute -- wow! You need to have this situation brought as much under control as can be so you can get on with your life!

Please let us know how it goes!
Take care!
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 Nov 2009
Total Posts : 1680
   Posted 2/6/2010 7:18 PM (GMT -7)   
I am so sorry to hear what has happened to you! It is bad enough that we are plagued with this crazy disease but to have been damaged by the carelessness of a surgeon is horrendous. I fully understand how betrayed you must feel. I nearly died due to a severe medical mistake. Please stay strong! There are alot of people here who understand your pain and we are here for you when you need us!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
No surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions. 
Been through MANY medications with terrible results.
Currently on Cimzia, Welchol (for crohns), Ambien (prn), xanax(prn), Cod Liver Oil and Feosol iron.
Organic diet has made a big difference for me. 
Learning how to love life and relax. 

Regular Member

Date Joined Nov 2009
Total Posts : 205
   Posted 2/6/2010 10:13 PM (GMT -7)   
LauryLu, what a terrible thing to have happen. I hope you can get your fistula taken care of and regain some of the benefits you were seeing from your surgery.

I wanted to add - when I am flaring, I have severe urgency issues too. I've decided that the next time this happens I want to try some anti-anxiety meds, because I think that part of my problem is the stress from worrying about making it to the restroom in time (which of course is something real to worry about, but I could do without the cold sweat and lurching stomach). I know that some other folks here take anti-anxiety meds for Crohn's-related issues.
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.

Regular Member

Date Joined May 2005
Total Posts : 166
   Posted 2/7/2010 5:03 AM (GMT -7)   
I started having those accidents a few years ago. I know what you mean about the anxiety. When it's really 10 accidents a day, it just puts me in such a depressed state I totally isolate myself. I've had too many accidents witnessed by too many people that I would just rather not take a chance and just stay home.
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009

Regular Member

Date Joined Apr 2007
Total Posts : 208
   Posted 2/7/2010 7:39 AM (GMT -7)   
Wow! That's awful. You're so young. Would they be able to give you a colostomy bag to help? I would not like that to be my only option. What surgeon did you see at CC? I live in Cleveland and have seen to C/R surgeons there, but neither treat Crohn's and did not know what to do with me. I have a benign mass and narrowing in both anal and rectal areas. Please keep us posted on how you are doing. I feel for you. i will be keeping you in my prayers.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 2/7/2010 7:48 AM (GMT -7)   
Awww Laurylu I am so sorry you are suffering so. With all you are going thru I think its pretty normal for you to be feeling depressed. Might I suggest a therapist who handles chronic issues. Maybe someone at the CC could recommend someone to you. I take Xanax occasionally just because of the things we all have to live with from Crohns, so please don't hesitate to ask for something to help you thru this trial you are going thru. I hope and pray the docs at CC can help you to have a more normal life. I will continue to keep you in my prayers.

Big Hugs
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Dec 2008
Total Posts : 75
   Posted 2/7/2010 7:58 AM (GMT -7)   
thank you everyone for your caring replies!! To answer some questions: I saw the head of board at CC Dr. Fazio and since he is no longer doing surgeries, he appointed his best surgeon dr. Zutchi to do my surgery. She has done a lot with repairs but not so much with patients who have Crohn's. There is a great risk of crohn's migrating to the area that would be surgically worked on so some dr's are hesitant to do any work. She is wonderful and I highly recommend her! She is doing her best to help me but because of my unique situation, there are alot of factors playing against me.
A bag is not an option yet. (That is my LAST LAST resort, for I really really do not want that)  I no doubt have permanent damage but the next option is a surgical treatment called Sacral Stimulation. It is where a device the size of a pocket watch is implanted in your lower back with wires that lead to a small "chip" that is also planted in the lower region of the back that sends electric "shocks" to the sacral nerves that control the muscles down there. Only problem is the FDA has not approved it yet for fecal incontinence and only is it currently approved  for urinary incontinence. My surgeon is very hopeful for this and it has shown to have GREAT results in all of its studies. Its nerve-wrecking thinking of having a device under my skin in my back but I am willing to do anything (but a bag) at this point. Waiting for the darn FDA once again to have a chance to get better. Although there were high success rates from this trial it is still, like anything else, not guaranteed. I have hope though!
I was thinking about getting an anti-anxiety pill to help things. If I "think about" going to the bathroom, sometimes it makes me have to go. Our mind is such a powerful thing, let me tell you.
27 yo Female, Crohn's, stricturing type- terminal illeum.
symptoms at age 2....Diagnosed at 6
Bal-resection 1998
Have tried it ALL Currently on Humira, Fish Oil, D3, Entocort, B-12 shots, Align, Multi

Regular Member

Date Joined Apr 2007
Total Posts : 208
   Posted 2/7/2010 1:36 PM (GMT -7)   
Thank you for your response about the doctors. I live in the Cleveland area and those dr's you mentioned work in the Inflammatory Bowel Disease Center at CC. My GI is referring me to that center. Sounds like they have some good dr's there. I hope you get some resolution soon to your issue. This disease can be so depressing and anxiety inducing. I get a lot of anxiety about being able to go (I have a partial blockage due to a benign mass and narrowing). Before when I had D I would get anxious about having an 'accident'. Good luck and please keep us posted on what happens. I know many times I feel bad about myself because I can't go places and do things with my friends like I used to. No one understands unless they're going through it themselves. Take care. I can't imagine the anger you must feel towards that one surgeon.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 2/7/2010 2:49 PM (GMT -7)   
My gauge that something needed to be surgically done was my quality of life...I've made many of those decisions, too, while dealing with Crohn's:(

Have you considered a TEMPORARY ostomy until the FDA approves the needed procedure? It would give you freedom to live, work and enjoy your relationship...just a thought!

I am really sad to hear what you are going through...I hope you can find relief!!

New Member

Date Joined Apr 2006
Total Posts : 11
   Posted 2/8/2010 7:55 AM (GMT -7)   
I am sorry too Laurylu... since I had my surgery in 99 I have "accident " issues as well. A sneeze, cough, laughing, all sorts of things can cause me to run to the bathroom. I use pantyliners or pads when the problem gets bad, just as a back up. I also stay home lots. I have accidents a night sometimes too. I have control most of the times, just not like I did before the surgery. On the days when it is bad I take immodium, or if I am hurting I take pain meds which also help. The big D is almost a daily thing for me. I hope you get help.

dx 1994, 52 yr old female. colonectomy with ileostomy, 3 intestinal blockages, reconnect/ remove ileostomy. c-section and tubal. gall bladder removal. so now no Dr. wants to go back in my abdomin due to scar tissue. stricture area near the reconnection. barrett's syndrome. remicade, entocort, xifaxin, paxil, aciphex, donnatol, b-12 shots, vicadin, clindomy acin, plus vitamins and minerals.
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