Community Forum

It looks like my 20 year old daughter is facing a surgery. The are recommending colon removal as well as her rectum and anus. She has severe strictures and has suffered with crohns for 5 years. We have an appt. with a specialist in January and I am looking for some advice to help her through this. She is a strong, positive person but I am sure this is going to rock her world. Does anyone have any advice about the surgery, recovery or living with an ostomy? Dr. said no reversal would be possible. How has your crohns improved since having the surgery? Thanks for any words of wisdom. (PS: I HATE this disease!)

 Reply posted for wildcat.

Sorry for soem reason I keep hitting report abuse and not reply.  I had a colectomy and then part of my rectum removed.  I think the only thing it helped was I knew when i had to go, if that makes sense.  i have had 5 surgeires where they've cut openthe scar and 4 where they've gone through my bum.  Most people would have no idea unless they see me swimming, i try to swim every day. 

 Reply posted for wildcat.

Thank you so much for your input.  I ordered the wrap and boxers today.  I also am a nurse and work for a colorectal surgeon and was completely unaware of this source, so I REALLY appreciate it.  Have a blessed new year!

 Reply posted for jmkjelsey40.

Ostomy secrets carries a  "swim wrap" they are made out of the same material as a swimsuit. The top of the wrap will sit above the waist band of his suit prob about an inch. I got my son one in black and his suit is black/white. it is not very noticeable. If he's in a 2 piece pouch he can snap on one of the closed end "mini" pouches while he swims. the pouch can be positioned to lie to the side and it "hides" inside the wrap. you can go to whatever manufacturer of pouches you are using and request a sample of the closed end mini pouch. Make sure you are sure of your size because the items from ostomy secret are not returnable. It costs around $45

 Reply posted for mamadwarf.

i am at home still recovering from irreversible ileostomy incl removal of colon and rectum on 12/15/10. i suffered with crohns for 20 years although i mostly showed symptoms like uc until 1 1/2 years ago. then i got fistulas etc and ended up with setons and drains. i did not take this decision lightly and weighed the pros and cons as well as spoke with folks that lived with bags. the most frequent thing i heard is how it changed folks lives for the better. i could not stand going out and having to look for a bathroom at stores, kids soccer games, airports etc - it sucks (sucked). 

 Reply posted for mamadwarf.

my cousin had the same surgery done 5 years ago.  She is a college prof teaching piano after having studied @ Juliard.  She has since married awonderful man and had 2 beautiful children - all of this occuring following  her surgery.  Without the surgery she would have died.  She has a fulfilling and happy life and she doen't even have to get out of bed to poop.  It's a horrible ordeal, but if she can feel well, and function to her grreatest ability, it's a small trade.  Good luck.

 Reply posted for BWickerham.

my husband is having a total colectomy with an end ileostomy done this Tuesday. One of his greatest concerns is swimming and going in the steam room.  Is anyone aware of a swim trunk that is high waisted or will cover his ostomy bag?  Due to his multiple surgeries in the past the ostomy will be high.  Any suggestions would be greatly appreciated.

 Reply posted for LoLoBoFerry.

Thank you for the kind words! I wont lie, it was an extremely difficult time for all of us. It was as if someone ripped the rug right out from under us. But somehow with the help and support of family and friends, you get through it. Looking back last Christmas was awful, yet here we are one year later, so blessed. I think the biggest thing is never letting your loved one feel ashamed for wanting to be healthy. Because you have to go to the bathroom a diff way does not make you less of a person. I also was committed in making my son independent again- he did all his own care from the beginning. And as we supported him we made sure to not allow him to feel sorry for himself. I think that helped him to accept what had happened and move on. Good luck to you, and thank you....

 Reply posted for BWickerham.

BW, thank you for your post. I appreciate it very much. We go to the specialist on Jan. 3rd and will post here what they say. I think being positive is the best tool you can have. I am also encouraged by you and others who have expressed that the surgery was so helpful to them and they have felt so much better since having it. I am grateful to this forum that allows us to connect and discuss such things.  I wish you the best and again, to everyone, thank you for taking a minute to respond.

Jan

 Reply posted for mamadwarf.

Howdy

Any surgery is a scary thing, but there comes a point in time when it may be the best option. Crohns/Colitis is such a tricky and individualized disease. What works for one isn't always the best thing for another.  I was diagnosed with Crohns Disease in 1993 when I was 18...just 3 months after I graduated from high school.  I tried every medication under the sun over the next 8 years and they provided varying amounts of relief. Eventually, medication was no longer providing any relief and my quality of life wasn't where I wanted it to be.  I was starting to allow the disease to control my daily actions and it was time to take charge and make a serious decision about how I wanted to live my life. When I was 26, I had my entire colon and rectum removed. I had a couple "touch up" surgeries over the next 4 years, but in my particular case, the intial surgery was the best possible thing that I could have done. I'm 35 now and have been symptom free for the past 4 years. I believe in my heart that it was the right choice.  For all the good that the surgery did, it was only a part of healing process.  I have always been blessed to have unwavering support from my family, a slew of dedicated doctors, and the ability to always look for the bright side to even the most serious of situations. 

I wish your daughter the best and would encourage her/you to continue to seek out others that have had this type of surgery.  This may sound crazy, but what may seems like an ending of sorts, may very well turn out to be the beginning of something very positive!  I encourage her to be open about her concerns and fears and ask plenty of questions.  It sounds like she already has a great amount of support from you and that is a very valuable thing. If I can be of any help in answering questions based on my experiences, please dont hesitate to ask.   

BW

 Reply posted for wildcat.

Wildcat you are awesome! Parents like you are amazing and thank you for this post.....I originally was diagnosed when I was 18 and felt as if my world was falling apart. After 8 years I am looking at undergoing another surgery, but life is worth it!!! Thanks for the encouraging words and tell your son he is amazing!

 Reply posted for mamadwarf.

I am a 27-year old woman and I have been in remission of Crohn's disease since I was diagnosed in 2002. I recently ended up in the hospital with nothing but a tube keeping me alive because I had a severe flare-up resulting in bowel blockage. Two days ago I went to my specialist and found out that surgery is necessary. My first surgery, back in 2002, resulted in about 3 feet of removed intestine. I have been very blessed over the past 8 years; however, I am now having to undergo more removal of my intestinal tract. Living with Crohn's disease has been difficult to say the least, but it has made me stronger and opened my eyes to the many blessings we all have in this world. My advice would be to show as much support as necessary and always remember to tell your daughter she is wonderful and beautiful. Those of us with Crohn's deal with a different lifestyle and this life is what we make of it as individuals.

I would like to say I am thankful to learn of others with this disease because support is of grave importance when dealing with such a lifestyle of Crohn's. After all this time I have suffered in silence; however, with the support of a great medical team many things are possible. I am here to support my fellow Crohn's patients and their families; these times can be difficult.

 Reply posted for mamadwarf.

I am 28 years old with Crohn's/Colitis, and just had most of my colon removed (11/30/10). I currently have a loop iliostomy and a mucus fistula for drainage. I feel better then ever. However, the doctor's say that I may have a chance of reconnecting, but there is no guarantee. I 've been also had perianal disease to the point where I could not sit down, but that seems to be healing since the iliostomy surgery (7/9/10). I know what both your children are going through, I should have made the decision for surgery when I was their age. If the reversal doesn't work (which would be at least a year from now) I will also have to have my rectum and the rest of my colon removed.

 Reply posted for wildcat.

Wildcat, thank you so much for telling me about your extraordinary son and the success he is having in his life. What a great kid. Thank you for the recommendation on the book. I will definatly get it. Thanks again for posting.

 Reply posted for mamadwarf.

my 21 yr old son went through the same thing last year. his crohns was in the rectum very close to the sphincter- he developed a stricture the size of a straw. we tried to treat things aggressively medically- but he couldnt go to the bathroom and that made him not want to eat. he lost almost 30# before the dr said-no more. he was devastated. he was on an athletic scholarship for wrestling- he thought his life was over. he got an ileostomy 1/26. hes back up to 170#- he looks and feels the best he has in years. he got a cover for his ostomy and works as an asst coach.- yes he wrestles- hell grad in march with a double major and just got an awesome job. he made the decision to make the most of his life early on- and hes never looked back. there is a book called great comebacks from ostomy surgery- i recommend you get it. i read it in one day- he wouldnt touch it for months- but slowly he did. there are wonderful ppl who can help your daughter....it will be ok....