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I have had Crohn's disease for 28 years.  I have tried just about every medication and end up with allergic reations to most of them.  When diagnosed in 1980, I had constant flare ups for about 9 years.  I did not need surgery at that time but was very dependent on prednisone.  I then went through a 15 year remission.  Do not know how that happened but was very glad that it did.  But in 2004, I started having flare ups again.  I have tried many of the old medications again along with the newer ones and still find that only prednisone along with 6mp does the trick.  I had just gotten off of the prednisone in March and ended up with a flare up in July.  The doctors have just put me on 40mg of prednison again.  The doctor is now talking coloectomy with ilieostomy.  I do not know why, but I am having a hard time accepting this.  I am very active and teach dancing for a living.  I have always worked around my disease, and know when to not push myself so much.   I know that I am feeling better now but also realize that it is because of the prednisone.  I just keep thinking that maybe I will go into remission again.  I really am having a hard time agreeing to this surgery.  Please help.  Has anyone felt like this?  What helped you make the decision to have the surgery?  What can I expect from the surgery and after care?  How long are out of work?  How difficult is caring and wearing the bag?  Are there any problems that the doctors forget to discuss with you that might be a surprise to me?  Can you tell that I am scared to death?  My doctor keeps telling me that my quality of life will improve.  That is hard to imagine since most of my life has been living with Crohn's and working things around the disease.  It is hard to envision a easier life.

 Reply posted for chili.

Sorry to take so long in getting back to you.  Yes I have tried Remicade and deveoped a rash from the drug.  I keep hoping that some other drug will do the trick, but so far, no luck.  thanks for the reply.

 Reply posted for beachlvr.

Thank you very much for the advice and support.  I am trying to get off of the prednisone and I hope that after the surgery, I will also be medicine free. 

 Reply posted for lltapper.

please get off the prednisone...it ruins your eyes teeth and bones ive had this disease for thirty two years and was on prednisone for almost 25 years.. it only masks other problems sure it helps but its not good to be on ..i also became so addicted to this pill if i  felt any type of symptom having and not having to do with crohns i ran for the stuff...Most doctors wont even prescribe more than a very small dose of steroids...it is also a mood drug one day your up the next down... I had my first surgery in January 2008 iam medicine free for now... make sure you have faith and confidence in your doctor that has been my biggest down fall over the years until i found my docor of the last 10 years and my surgeon.Always ask questions if they dont seem like they want to take time to answer them ...move on... good luck

 Reply posted for lltapper.

What about Remicade? You said you've tried just about everything, but you didn't mention specifically.

 Reply posted for Robert.

You have been so helpful.  I really appreciate your honest comments.  I feel that part of the difficulty in making this decision is the self image.  I really just do not know what to expect.  I really have not liked my self image lately due to the fact of the prednisone and all of the weight gain and bloat that comes with it.  I have put on over 40 pounds and feel miserable.  Everytime I get off of the prednisone and start to work cautiously at reducing the weight, I end up into another flare up and put back onto the predisone.  Just the thought of the pouch added to the self image I already have kind of turns me sour.  However, the fact that you state that you drastically feel better having the pouch is a big positive.  That statement alone helped alot.  I may have some more questions when I finish with my second surgical opinion, but for now, you have given me a great boost in the decision making.  Thank you.

 Reply posted for lltapper.

When I say that I am happy for the most part, I am just indicating that from time to time, I wish I did not have to wear a pouch.  As I have only had a pouch for 2 years, it really is probably more of a self-image issue that you learn to deal with over time.  However, my quality of life is DRASTICALLY better.  Since the surgery, I have had zero problems and NO pain whatsoever.  Whenever I remember how miserable I used to be, I usually stop second guessing my decision.  I just sometimes feel like I possibly should have continued trying to pursue other options.  I did not suffer with the disease nearly as long as you have.  Had I lived with it for the amount of time you have, I'd probably feel much more comfortable with my decision.  At some point, enough is enough.  You mentioned developing osteoporosis and consideration has to be given to the impact of your long term health from taking steroids over an extended period of time. 

It is such a difficult decision to make that I really think it is inevitable to experience some level of doubt regarding whether you made the correct decision.  If there are any other questions you may have, please ask, no matter how specific or trivial your question might seem to you. The more you find out, the more comfortable you will be with your decision.

 Reply posted for Robert.

Thank you very much for answering.  I really feel like a fool by trying to make up my mind on this surgery.  I am going for a second consult next week and see by chance if there is another alternative.  I really appreciate the info about the product that works for an active person.  I am like you.  I have been on the prednisone for so long that I now am also dealing with osteoporosis.  the presdnison has depleted my system of so much.  My whole family is very supportive and have all told me that if it were them, they would have the surgery.  but they also remind me that they really do not know everything I have been going through.  They just think that a chance of a better like would be worth the surgery.  You stated that you sometimes second guess your decision.  For the most part, are you happy with the decision? I am reading a book called Straight from the Gut.  It is helping with alot of things but people who have experienced it are still the best source of info. the problem is that alot of people do not really want to talk. 

Help/possible surgeryWith regard to the surgery, unless it has to be performed right now, I would make sure that there are absolutely no other options.  New drugs are continually hitting the market.  Personally, I had a colonoscopy after being sick for the umpteenth time.  My doctor informed me that the steroid levels I was taking were possibly doing more harm than good for me and that the level of deterioration to my colon was so extensive that he really did not see any other alternative than to remove it.  I was hospitalized immediately after this colonoscopy and made the decision, while in the hospital, to have the surgery. 

The surgery itself takes approximately 2.5 hours.  You will be hospitalized for approximately 7-10 days after surgery.  During this time, an ostomy nurse will fit you with your first appliance and will teach you how to empty and change it and will provide you with some pouches to take home with you.  I was able to return to work one month after my surgery.  Given that you teach dance, it may take you longer to return to  work (or at least to be able to resume actively dancing).

The greatest surprise that I experienced was with regard to the quality of appliances on the market.  Being physically active, it really was difficult to locate a product that enabled me to wear it for more than a couple of days while working out, swimming, etc.  There is only one manufacturer, Cymed, that in my opinion, makes a product that can truly meet my needs.

Hopefully, this has been somewhat helpful.  I would strongly encourage you to speak to as many people as possible, who have had the surgery, before going forward.  As I mentioned, I would be more than happy to talk to you and answer any other questions you may have.

Good Luck - Robert

 Reply posted for lltapper.

I definitely know what you are going through and would be happy to speak with you as well.  I had a total Proctolectomy 2 years ago and have an ileostomy.  Prior to my surgery, I had been sick for 8 years; so I definitely had not battled the disease as long as you.  However, like you, I was also in remission for several years prior to the 2 years preceding my surgery when I again became very sick. 

From a health perspective, I do not regret my decision.  I have had no health issues since my surgery and I truly no longer feel sick. 

This being said, I am fairly young (36 yrs) and active, and I must admit that having an ileostomy is a huge lifestyle change for me personally.  I have been newly single for the last year and a half and the largest challenge for me has been dealing with the obvious self image issues.  However, I must admit that no one can tell that I have an ileostomy unless they see me in a bathing suit, etc.  Also, I am extremely active, excercise regularly and am not limited in what I can do.

I would be remiss if I did not say that I often second guess my decision to have this surgery performed.  Perhaps this is because I am losing recollection of how miserable it was to be sick.  (continued)