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I was diagnosed with Crohn's in 2008 at 23 y/o. I do NOT have any stomach issues.. ie. pain, cramps, or urgency to go to the bathroom several times a day. The symptoms I have presently are pain after bowel movements (throbbing pain in the anus), stubborn draining from a fistula I once was operated on (after draining a peri-anal abscess that formed / fistulotomy), muscle spasms from an anal fissure, and constipation. I am currenlty on Remicade and Diltiazem cream for the fissure. I know Crohn's is a very difficult disease to diagnose but I read alot of the stories on here and start to question if I even have it given I don't have the stomach issues. I trust what the docs tell me and being that my older brother has Crohn's and my mother passed away from Colon Cancer, I'm willing to believe it. The past few months I have been doing nothing but obsessing and worrying about the possibility of one day having to get a colostomy. I consider myself to be a handsome, confident, 24 year old male, with many goals to be met in the future. The thought of this operation CRUSHES me. I feel like my confidence will be long gone, I will have nothing to live for, and no girl or woman would want to be with me. It may sound selfish but I just cant picture someone wanting to start a loving relationship with me if I were to do this. I almost wish I met my future wife already who would be able to accept this and stay with me before anything happened. I am just looking for some insight from anyone out there that has had this operation and how it has changed their lives, both physically and mentally. The doctors haven't even mentioned it to me yet but I tend to imagine the worst. I woud also like to know the difference between a colostomy, ilieostomy, and a J-pouch? It would be greatly appreciated if someone reading this would kindly share their thoughts. Thanks. :)

Sincerely, Dean

 Reply posted for Dean.

Anytime man! If you need more encouragement, let me know.  I'll offer my thoughts & experience for you to analyze and use to your best advantage. 

 Reply posted for Dean.

Dear Dean,

My name is Ronnie, 58 year old female, and I just had my entire large intestine removed, it was completely ulcerated.  I suppose I was lucky in that is seems to be UC, not Crohn's, but all in all, I did have my JPouch formed during surgery 1, and I had a temporary ileostomy bag for about 7 weeks. While not fun, I had an excellent surgeon, who scheduled me for the reversal within 7 weeks of the initial surgery, which was just fine with me. 

As far as managing the "bag", it is doable, you just get used to it, and have supplies at the ready, in case you have to change it, and this only actually happened once, and I was actually at the Doctor's office when it happened. There is another surgery, known as the BCIR, which is done in a couple of places in the country, you can google it, and read about it, although my surgeon felt that I would be happier long term with the JPouch, and eventual reconnection of the plumbing.  This has been done, and I feel fine.

I am on B-12, Iron and Folic Acid, no other medications, and vitamins, because you do not absorb nutrients too well.  You would still have "pudding" like waste, but it is not bloody, and you can control when you go to the bathroom.

There are actually wonderful undergarments for both men and women, designed for intimate moments, just google colostomy underwear, and you should find several sites.  If it comes down to living with the bag, then it can be managable, it is better than suffering, and being in pain all of the time.

I am 4 months post surgery, the bag is gone, the JPouch is working and I have just come back from Mexico on vacation.  So, if you trust your doctor, and have done all the research, you have to make the decision how you want to move forward. Life just has no guarantees, but you know that Fear is False Expectations Appearing Real.  The unknown is always scary, but the known is usually not much better.

Best of luck with your decision.

 Reply posted for GutsyMusician.

Thanks, so much. By far the best advice yet!

- Dean

 Reply posted for Dean.

Hey Dean, a few words of encouragement from a resilient musician who experienced 3 major colon surgeries since my 20's.  Hang in there and try to ease your mind from the possible surgeries. Deal with it if it happens; but for now, remember that you are #1 and it is your life ahead of you.  I understand that a girlfriend is important to you, but try and take care of YOU first !  Don't feel like you are selfish about it - you've gotta live your life for yourself, not anyone else.  This means that if you ever had to have surgery and wear a bag, it's better to be alive and feeling better than sick and crapping all the time.   Make yourself happy, healthy and pursue a career that you'll enjoy making money at.  Continue your education if you're not already done because it's really important.   Go on dates but don't rush into anything intimate.  Treat yourself well and with dignity and then as your relationship with girlfriend gets more serious, she will understand your circumstances.  If not, Good Bye 'cause she's not the right person for you.  There are a lot of good fish in the sea at your age.  Hey, God only knows, you might meet a terrific & gorgeous nurse at that hospital who will fall head over heals for you.   Whatever you do, live for U.

All the best to your brother too.  

 Reply posted for breezy.

thanks for the insight.....i am in touch with my surgeon as he is 3 hours away, but excellent communicator......he feels this  slow, if non healing  anal- vag fistula is not due to the crohns, as the tissue was all healthy that he pulled together...I'm just a slow healer, a bruise lasts for 4 months w me.  So I am still gong to hold out a few more months if I can to see where this all leads me to and then make another decision....Seems to me i would have felt a stitch give, break or snap wouldn't you think?

Living with a colostomy doesn't seem all that terrifying after talking with different folks that have them....Are there any real downsides to having one?  thnaks

Flower

 Reply posted for flower.

Flower, 

The colostomy is to let the fistula area heal.  I can not say if it is better to have ostomy surgery or not.  I was in pretty bad shape when they opened me up.  I am thankful to have Stella the Stoma and to be alive.  Talk with your surgeon.  He or she can really spell everything out for you.

Hugs,

Breezy

 Reply posted for breezy.

I am new here, but have crohns, was diaganosed in 1987, resecton in 1992, fistula repairs 1992, lived w impending incontinence for 17 years, until the spchincters were almost down to nothing, i had an overlapping anal spchintoplasty done to repair them, it seemd to have worked, however I developed a fistula thru to the vag....went in to have that repaired and didn't work....i feel like I'm worse off now than when I was before I started this all....Has anyone out there experienced this situation and would a colostomy/ileostomy be the better route..?

I am going to give this time as I am 11 days post-op from the fistula repair attempt. But I know something else will ahve to be done, it's just a matter of what....thanks

 Reply posted for Dean.

Good morning!  I have had Crohns for a looong time.  Colostomy was my greatest fear.  Not anymore.  Last year I started having a flare.  The first major episode in 16 years.  I had just met the most wonderful man.  My kids are grown and have flown the nest.  This was to be my time!  I really went down hill.  I almost died from malnutrition.  Finally the surgeon removed my stricture and fistula.  I awoke from surgery with my new friend, Stella the stoma.  Colostomy was the safest thing to do at the time.  I have learned that it is not the end of the world.  I am still loved.  I am still me.  There is a possibility that the colostomy will be permenant.  I will handle that.  It is not the worst thing.  It takes some getting used to and I have shed many a tear (still do).  I did not want the colostomy but I am so much better now.  You may never need one, but if you do, remember this- you are the same person after that you are before. 

Many hugs!

Breezy

 Reply posted for Dean.

Dean:

My 21 yr old son had surgery for Crohns in Dec. and has a temporary ileostomy. He is scheduled to have it reversed in May. (Ileostomy is on the right side, not using any part of the colon, colostomy on the left side, using the colon. There is a difference in output texture). He also thought he wouldnt be able to go on with life. Hes in college (at a military school, although not able to commission due the the Crohns) wearing uniforms, doing his PT (no situps) and getting on with life. He has shown/explained his ileostomy to his friends, girls and boys and they could care less! They were curious but really only concerned for his health.Although he hasnt had much time for a girlfriend, he has dates who are well aware of his "bag". You will find someone whether you have a colostomy or not who will accept you for your personality, not your "flaws". When the pain is gone and you can eat and gain weight, the ileostomy/colostomy isnt so bad. Weve had some good laughs with our son over his ileostomy and some of his good friends have some "quaint" names for it too! Please dont dwell on it..its not as scary as you may think! Good luck to you!