Community Forum

hey!
Is somebody there with colectomy done?
Does it improve the lifestyle and all??
please tell me all its limitations and advantages.
I'm a worried daughter of a patient suffering from UC who is to be operated as early as possible.
thank you.

 Reply posted for mjk708.

Mike:

Best of luck to you on Jan. the 11th!  I'll be saying a prayer as I always do for those if us who suffer, or have suffered, through these dreadful diseases, as well as for the medical staffs that so skillfully heal us.

I had the surgery over 20 years ago and have lived a full life since with no regrets for having done it, so you have much to look forward to!  I've read some of Angie's posts across other threads and they are 'spot on' in terms of getting through the surgery; my memories of those days are thankfully hazy at this point.    In addition, I wrote a multi-page post under another thread (I think the thread is entitled "Which surgery is the best option") to touch-on long-term life with the Jpouch; please check it out.

Again, best wishes, and if you have any long-term lifestyle-related questions, just start another thread and I'd be happy to share my experiences! (for what they're worth) 

Sincerely, Steve

 Reply posted for Ang300.

Angie,

Thanks for your posts.  I am having the same surgery on January 11^th at the Cleveland Clinic.  It really helps to hear the experiences of others. 

Mike

 Reply posted for shruti.

Hi, Shruti!

I remember having a tender abdomen for several weeks after surgery.  I had staples and the ileostomy pouch adhesives would not stick very well over the staples.

I had my entire colon removed and my small intestine is hooked up to my rectum.  I had only one bag, the temporary ileostomy.  However, I was told mucus coming out of the anus was normal.

All waste material from eating lefty my body via the ileostomy only.  Immediately after surgery, I also had a foley catheter for urine collection as I was unable to get up to use the restroom.  After I was able to move about freely, the foley catheter was removed.

I also had a bulb-like device running through an abdominal opening to drain fluids from my abdomen.  This was removed when I was discharged from the hospital.

I hope things go well for you and your father.  Each day gets much better during the recovery process.  Best wishes to you both!

Angie  :)

 Reply posted for Ang300.

Hey....hi
My father ultimately got is colon removed.It was a tough job for him n the doctors because of paralysis n low haemoglobin levels..But by god's grace everything ended nicely..There are some post operation problems as in he is having pain coz of the stitches..HE was operated on 19th n probably now he will strt taking tea,juices etc by today.One thing do they put two bags fr that temporay illeostomy??? One fr mucus n the other for stool???n was your entire large intestine removed during the first operation or some part was left??
He has those stitches all over the stomach...pipes for glucose n other medicines-the site is quite painful..But everything will be okay..

please reply at the earliest.
Thanking You
Shruti

 Reply posted for Ang300.

Thanks for your reply.  How are you doing now?  It's been about 4 months since your second surgery?  Right?  Was is all worth it for you?  Do you just take Immodium?  Do you take it daily? 

My son is having a colonoscopy in December to see how things look and to see if he's ready for surgery.  He's been on Prednisone for 3 years.  I don't know if they will be able to do the surgery while he's on it,  or if he will have to completely wean off of it before the surgery is done.

I think his age is an advantage at this point. I believe that he will ultimately need the surgery sooner or later, so I would rather see it done while he's young and in "fairly" good health.

Any more suggestions are greatly appreciated!  Thanks for your positive attitude!!

 Reply posted for lfinn.

Hi!  Your son's story sounds familiar.  I did not respond well to Prednisone when I flared.

Recovery time will vary depending on how healthy a person is before going into surgery and how long a person has been on or off steroids. I had been off them for about a year prior to surgery.

I opted for the two-surgery process for my  ileoanal pullthrough. 

The first surgery consisted of colon removal and formation of the j-pouch (this surgery is callled ileoanal pullthrough).  At this time a temporary ileostomy is created.  The ileostomy is used so that the rest of the body can heal from the trauma of the ileonanal pullthrough.

After my first surgery, I was walking around the hospital within a couple of days.  After four weeks, I was feeling great.  I had lost a lot of blood during my surgery (I'm a really good bleeder).  The surgeon and doctors considered giving me blood, but in the end opted to forgo the blood. 

Eight weeks is the typical waiting period between surgery number one and surgery number two.  This is assuming everying is healing nicely.  I had my second surgery exactly eight weeks after my first surgery.

The second surgery is much easier than the first; all that happens is the ileostomy is closed off.  Release from the hospital occurs as soon as the patient has a bowel movement.  This usually takes a day and a half.  I took a little longer and was released after four days.

After arriving home, I was feeling pretty good after a week.  I began light exercise shortly thereafter.

At about one month after the second surgery, I was going to the gym regularly.

It was a long summer, but well worth it.  My firs surgery was May 2009 and my second surgery was July 2009.

I hope this helps.

Sincerely,

Angie

 Reply posted for Ang300.

My son is 19 years old and has struggled with UC for the past three years.  He is considering surgery because the meds aren't giving him any relief.  He's been on every medication possible and has been on Predisone for the past three years.  He's trying Cimzia right now; however, it isn't putting him in remission.  He continues to have low iron, is tired all the time, eats a very bland diet, and has a pretty limited life.  I am proud of him because he is in college and plays on the tennis team.  I know it's difficult for him, but he continues to give it his best!!  I am wondering what the recovery time is for each surgery.  He'd like to contine to play tennis and hopefully he will have more energy.  However, he is trying to plan both surgeries around college classes and his tennis seasons.  Any suggestions?

 Reply posted for Ang300.

Oh....Thankyou.
Happy to see u satisfied.
Wish you all the best.
Stay in touch..
Thanks
Shruti

 Reply posted for shruti.

Yes, my entire colon was removed.  My small intestine is now attached to my rectum.   A portion of the small intestine is formed into what is called a j-pouch (because the pouch is shaped like the letter J).  The j-pouch holds waste material.

:)

 Reply posted for Ang300.

Thanks a lot for replying...
I always see you posting things and helping people like me get ri of there worries.
you got your entire large intestine removed or what?
actually my father the patient also got a paralysis attack this may due to low hemoglobin levels that may be coz of constant bleeding coz of UC.please help
and do reply.
I wish you a great and healthy life ahead....!
yours sincerely
Shruti

 Reply posted for shruti.

Hi.  I recently had my colon removed due to UC.  I absolutely love it!  I had an ileoanal pullthrough which means my small intestine is hooked to my rectum and I use the bathroom like a 'normal' person.  The small intestine is formed into a small pouch, called a jpouch, which holds waste material.

I love life again now that my colon and illness are gone!  I have resumed my active lifestyle which includes going to the gym, hiking, rafting, kayaking, and playing outside.

I am no longer in pain or worried about what I may see in the toilet. I have much more energy because I'm not in pain and I do not bleed constantly.

Personally, I recommend this surgery for anyone with uncontrollable UC.

I can eat anything I want - nothing seems to bother my perianal skin (the skin around the anal opening).  I take two Loperamide per day to help firm up stool.  (Loperamide is the same thing as Immodium.)

My first surgery was in May which included colon removal, jpouch formation, and a temporary ileostomy.  My ileostomy takedown was in July. 

I am very, very happy with my surgery and am glad I did it!

Sincerely,

Angie