Ulcerative Colitis considering Colectomy/J-Pouch/Temporary Ileostomy

I'm 22 years old and have had colitis for about 5 years. I've tried a number drugs with mixed results but eventually they all seem to stop working. I have very few options left, in terms of medication, and I'm considering surgery. I'd love to hear from anyone who's had the surgery or who's seriously considering it now.

• Did you have ulcerative colitis?
  
• What were your symptoms like pre-surgery?
  
• What was your diet pre-surgery?
  
• What medications had you tried?
  
• What ultimately made you decide to have the surgery?
  
• What details can you give me details about preparing for surgery?
  
• What recommendations do you have for finding an excellent surgeon?
  
• What are your thoughts and experiences with the surgery itself?
  
• Were you awake and alert for the surgeries or did they put you under?
  
• What can you tell me about recovery? (for both surgeries)
  
• What was your most difficult part of recovery? (for both surgeries?)
  
• How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your moment?
  
• How often did you have to empty the bag? How often did you replace the bag?
  
• I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries)
  
• Do you require any medications now?
  
• What is your diet like now?
  
• Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods)
  
• What inconveniences do you have in your day-to-day life post-surgery?
  
• How many times during the day do you have to use the bathroom now?
  
• Do you expect any changes for yourself 15 or 20 years down the road?
  
• Finally, and suggestions or tips for me?
  

Thanks in advance!

Welcome! Great questions. I'll do my best to answer them one-by-one.
Did you have ulcerative colitis? No, I had Crohn's.
What were your symptoms like pre-surgery? Chronic diarrhea, pain, anemia, dehydration.
What was your diet pre-surgery? Limited to baked chicken or fish and cooked veggies.
What medications had you tried? Remicade, Imuran, Azapriothine, Asacol, Prednisone, Flagyl, Cipro.
What ultimately made you decide to have the surgery? After 7 years of trying every medicine, I was told by 2 Gastroenterologists and 2 Colorectal surgeons that I had to have surgery, because my colon was so diseased. Plus, I was sick and tired of being sick and tired.
What details can you give me details about preparing for surgery? For mental preparation, I made a list of pro's and con's. A huge pro for you with UC is that surgery is a cure. Another pro is that you will never have to worry about getting colon cancer. The physical surgery prep is just like prepping for a colonoscopy, which I'm sure you've done enough times by now. That's another pro... no more colonoscopies!
What recommendations do you have for finding an excellent surgeon? My gastroenterologist recommended a colorectal surgeon for me, and I trusted her. I live in a city of over 100,000 people, so there are a lot of surgeons to choose from. Many people highly recommend Cleveland Clinic in Ohio and Florida, if you are able to travel to either place.
What are your thoughts and experiences with the surgery itself? Yes, it was painful at first, but they keep you very comfortable with pain medicine and the pain goes away, unlike the constant pain I had before surgery.
Were you awake and alert for the surgeries or did they put you under? Oh, I was out!
What can you tell me about recovery? (for both surgeries) I had disease in the colon and rectum and was not a candidate for a j-pouch. I had the ileostomy surgery first and then a proctocolectomy 8 months later. Recovery from the ileostomy was tougher than the proctocolectomy, because my ileo didn't work for 12 days after surgery. I was throwing up, got dehydrated, and was in the hospital for 3 weeks. That is not normal, but it can happen. The recovery from the procto was surprisingly quick. I was out of the hospital in 4 days and was off work for the recommended 6 weeks, even though I was able to drive and grocery shop only 2 weeks after surgery.
What was your most difficult part of recovery? (for both surgeries?) The ileo not working for 12 days was rough, the long incision in my stomach was painful, but all in all, it was all worth it to be healthy again.
How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your movement? In the beginning, I slept on my back and could sleep on either side, if I hugged a pillow. It wasn't long before I could also sleep on my stomach, which I like to do, too.
How often did you have to empty the bag? How often did you replace the bag? I empty every couple of hours when I go to the bathroom to pee. I change the wafer, which is what holds the bag to my stomach, once a week, and snap on a new bag every 3-4 days.
I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries) For me, I was off work 6 weeks for each surgery.
Do you require any medications now? I haven't taken or needed any medication since surgery (except pain meds in the beginning), because I have been disease-free.
What is your diet like now? I can eat anything I want and don't have any problems.
Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods) Nope.
What inconveniences do you have in your day-to-day life post-surgery? None.
How many times during the day do you have to use the bathroom now? I just go there to pee, and empty the pouch while I'm there, so not that often.
Do you expect any changes for yourself 15 or 20 years down the road? Since I'm healthy, I expect to stay healthy.
Finally, and suggestions or tips for me? If you've tried all of the meds and are still having flare-up's, I think you will be happy to get your life and health back by having surgery. Since you are able to have a j-pouch, you won't have to be concerned about any body image issues that some people have with a permanent ostomy. I was already married when I got sick with Crohn's, and my husband has been extremely supportive, so I don't have any negative body issues with it. We're both just happy that surgery gave me my life back.

Good luck with your decision!
Cecilia

Answering on behalf of my husband your questions...bear in mind he was 64 when he had the surgery 18 months ago

Did you have ulcerative colitis? 

Yes - for at least 5 years prior to surgery...milder symptoms before that which were not really diagnosed...

What were your symptoms like pre-surgery? 

Varied...initially prednisone gave a little relief than nothing as he became steroid dependant and had a terrible time tapering off it.  Imuran along with Asacol had it somewhat stable but not really anything good. Liquid retention enemas didn't do much nor did the Cortifoam.  Failed Remicade = 4 treatments.  Was on a monitored pain management program for a year 1/2 or so which only masked the situation and got me through the day but quality of life was not good and definitely not predictable insofar as urgency and frequency. Never attained a remission.  Constant trips to bathroom - intense pain/cramping and bleeding off and on.  Very weak and tired.  Mood swings were not good on prednisone.

What was your diet pre-surgery?

That varied as well.  Sometimes didn't even want to eat or drink which of course doesn't really help matters any.  Truthfully he was not that disciplined and if there was something he wanted to eat basically he would do so.  Whether or not a diet would have helped there were so many conflicting things about what you should or should not eat and supposedly diet may not be a trigger.  If it were me I would have tried that route but could not force him to.  He did lose a lot of weight so it wasn't like he was eating up a storm either.

What medications had you tried?

Asacol, Imuran, (also a different form of Asacol-forget the name-made it worse and went back on Asacol)Rowasa, Cortifoam, Prednisone (too many times and became steroid dependant and osteopenia which is now reversed)a rectal suppository of some kind,morphine, fentanyl patch, gaba pentin, hydrocodone plus his Type 2 diabetes meds, cholesterol and high blood pressure pills.

What ultimately made you decide to have the surgery?

His local Dr was very honest and indicated she thought he should have colonoscopies every 6 months instead of every 12 months as she felt with all the maximum heavy duty meds and pain meds and polyps always there....she felt it was not a question of "IF" but "WHEN" it would become a cancerous situation to deal with in addition to removing the colon.  Even though my husband tried to find a way to cope and deal with it...overall he had no life.  He was sick and tired of being sick and tired and becoming a recluse.  It was easier to just stay home.  No matter where we went...where is the rest room.  We could leave the house and 2 minutes later turn around and come back home or whereever we were make a mad dash for a nearby rest room.  Sometimes in traffic, red light or whatever it would be a very anxious tedious situation.  My nerves were certainly shot to h$ll as well.

What details can you give me details about preparing for surgery?

Our local GI Dr. put a referral into Mayo Clinic as she felt that was one of the best places in the area for him to get the best attention.  The moment he decided on surgery I came to Healing Well and jumped over from the UC forum to the Ostomy forum for research, advice etc.  We also had a sweet guy from the JPouch org who I e-mailed and he gave us a tremendous amount of info preparing for the jpouch which we initially thought my husband would have a chance at.  This is where there is a difference in what you are asking about....my husband has a permanent ileostomy.  His colon was so bad and the surgeon operated for over 7 1/2 hrs and went into the surgery hoping and trying to make this a 2 step jpouch process.  It was not meant to be for many good reasons in my husband's case.  We knew going into this there were a lot of strikes against him.  First his age of 64...younger people statistically fare better overall.  Second being a male...the anatomy is alot different from a female who is built and meant to carry children.  There is a lot more room to work in there for the surgeon with females.  And when he got inside my husband's anatomy specifically had a great deal of trauma that had occurred over the years.  All in all we are lucky and grateful he survived the surgery and has done so well overall.  So in his case the jpouch was not meant to be.  I was intially disappointed for him but honestly for us, our age, being together for 42 years and the way it has turned out is really ok.

Even though you will be getting a temp. ileostomy you do need to approach it and care for it as though it is a permanent situation to get the best results while you have it.  It is important to find the right appliance if the one the hospital outfits you with is not compatible for you for whatever reason.  YOu want your skin under the wafer to stay as healthy as possible.  If you have any sign of an itch it is possible there is a little leaking going on and you want to remove it, clean the area, dry it well so you don't develop any skin problems if possible.  But remember we are here for any questions and advice.

Do wear your normal pants, shorts or whatever to the stoma nurse appt. so she marks you for the surgeon to place the stoma where it will not interfere with your clothing.

We went on you tube and we checked out what the wafer and pouch is all about...how to apply, how to change etc.  It might be a little difficult to watch initially but it beats sticking your head in the sand and waiting until you wake up from surgery and dealing with it.

It made it so much easier when we met with the stoma nurse, the colorectal surgeon etc.  When they spoke it was not a foreign language and we processed the information as we were already aware and informed.  PLUS IT TOOK THE UNKNOWN AND FEAR out of it once we both watched together on the computer what he was in for.  Again we thought it was only going to be for 3 months or so but it made things a lot easier overall.

What recommendations do you have for finding an excellent surgeon?

That is VERY important...I have to assume not everyone has carte blanche when it comes to this.  Some deal with emergency surgery or a spontaneous surgical procedure that gave them an ileostomy and had no say who they had operate on them.  Some people may be in more rural areas where the choices are limited.  That being said.........if you have no limitations and because this is being somewhat elective like in my husband's case it is important to do your homework if you have this option.  I have read some people say to go with a colorectal surgeon when possible versus a general surgeon since this is their specialty which is what we did.

What are your thoughts and experiences with the surgery itself?

Our experience could not have been any better overall.  The surgeon, nurses, facility and other staff we came in contact overall were all on the ball.  Only once did my husband's pain become unbearable very late the 2nd night (I was not there) and his even tempered nature got the best of him...took almost an hour to get the pain back under control.  Never happened again.  He went with the epidural (a block of that abdominal area) which really worked out well as his entire body and mind were not drugged but he did need supplemental pain meds in the IV that he could pump when he needed it.  Due to his needing to be on pain meds prior to surgery I am sure that played a part too.  Fortunately after he was released he totally tapered off all pain meds in about 6 weeks or so.  His pain Dr was very pleased and proud of him.  Obviously he only needed the meds for the UC pain and not because he became addicted to them which was a big concern of mine.

Be sure to discuss the anesthesia options and you will probably want the one that is the least invasive and have additional pain medication given if needed to supplement.

For about 2 days one of his shoulders really ached due to the way they have you positioned for surgery and the (?) air that is used during surgery...it will dissapate and go away.

Were you awake and alert for the surgeries or did they put you under?

Totally under.

What can you tell me about recovery? (for both surgeries)

Only the one surgery...in the hospital for 8 days total.  We stayed nearby for another 4 days only because it was a 3 hr drive from home and I was very nervous if any complications occurred we were right there as we stayed at the hotel that adjoins the Mayo Clinic.

What was your most difficult part of recovery? (for both surgeries?)

The most difficult part was while he was in the hospital.  FOr the 4 days in the hotel we also had a visiting nurse come in and we managed ok.  His back kind of went out and was very weak but once we got home and he saw a Dr and had some deep massage therapy it was fine.  The incisional pain healed very well...the butt area (where the drains were) was sore for awhile but I don't think you will have that type of situation... since his surgery was different from what you will be having.

How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your moment?

Well...he always was a stomach sleeper and now sleeps on his side and uses a "hugger pillow" and has adjusted.

How often did you have to empty the bag? How often did you replace the bag?

Since it is very important to stay hydrated and drink a lot of fluids he pees a lot so when he is in the bathroom he just empties at the same time.  Probably needs to empty 4-5 times a day is my guess but does it more often.  This way, there is less in there and less weight overall.

Trial and error with different systems...his skin does not like wafers with an adhesive outer area.  He uses Coloplast Sensura.  He does a full change on Wed and Sundays.  His skin is in very good condition and he likes showering with this schedule with no appliance on twice a week.  He does this first thing in the morning when it is not very active and has had nothing to eat or drink yet.

I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries)

Someone will answer that better than us since we are retired and had a different surgery.  Just be sure not to overdo and not rush things even when you feel so good.  This is a very major operation.  Your age will definitely be in your favor but you don't want to develop any unnecessary complications either.

Do you require any medications now?

No only for other medical issues not pertaining to UC

What is your diet like now?

Chew, Chew, Chew whatever it is.  Some people will eat most things. My husband is enjoying eating once again but does not take chances with certain foods that are recommended to stay away from like pineapple, celery, mushrooms, real gassy foods, carbonated drinks, dried fruits--avoid things that can expand in size once in your stomach making it hard to pass through the stoma.  Initially you need to slowly introduce foods.  Better to eat small meals 6x day especially in the beginning.  PROTEIN is very important for healing faster.  If you have no real appetite at least choose foods high in protein.

Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods)

See above...he just doesn't take chances with popcorn and other things that he wants to be sure can't give him a blockage.

What inconveniences do you have in your day-to-day life post-surgery?

Not too many inconveniences truly as this is now his new normal. We both feel blessed.  He is out of pain and no longer living with the nonstop anxiety associated with the frequency and urgency he had no control over when he had the UC.  He is one of the lucky ones in that his surgery went very well, he healed well with no complications to date and we have a good handle on a wafer system that is now cooperating.  The one blowout and few leaks he had was in the very early convalescing  trial and error days while home recuperating so he has not had a public problem yet.  When a wafer system proved that it was not compatible with his skin we tried a different one.  It took 4 tries in his case to find what is currently the right one for him. Will it happen someday that he may have a malfunction of some kind...probably.  Can't worry about it

How many times during the day do you have to use the bathroom now?  Answered above.  He can go several hours easily without even thinking about it.  And when he does go to pee most times it does not need emptying and sometimes he won't bother.

Do you expect any changes for yourself 15 or 20 years down the road?  If he/we live to be 80/85 we will worry about it then...lol.

Finally, and suggestions or tips for me?

You're doing a great job delving into this.  You are the only one who can make up your mind if and when the surgery route is right for you.  My husband's Dr at Mayo recommended surgery a few years before he finally made up his mind.  He wished he had done it sooner but his Dr. reminded him...."you were not ready then" and you needed to do it when the time was right for you.  Even though my husband feels he lost those 2 years, I couldn't and his Dr's really couldn't and shouldn't have coerced him into it.  Fortunately it worked out.

Once you go thru these answers and any others that follow it may spur a few more questions.

When you are ready to go to the hospital there are things you will want to have on hand...there is probably a thread or two with that info if you do a search.  One thing my husband needed was a back scratcher..I ran out to the nearby dollar store and thankfull they had one.  Amazing how much relief having that around was for him.

Post Edited (Another UC wife) : 5/27/2012 8:15:32 AM (GMT-6)

Welcome to the board and best of luck to you! I know this is a hard decision to make, especially so young, so hopefully all of these answers will help you.

•Did you have ulcerative colitis?
Yes, I had UC. Symptoms for most of my life but only diagnosed about a year before surgery.

•What were your symptoms like pre-surgery?
No control. Accidents every couple of days, going to the bathroom 10 times a day or so. Lots of side effects from the meds like bad pneumonia and sepsis, blood clots, arthritis.

•What was your diet pre-surgery?
No fiber, whole grains, fruits or veggies. Lots of time on TPN or liquid diet.

•What medications had you tried?
Everything. Prednisone, Imuran, Asacol, enemas and suppositories, Remicade.

•What ultimately made you decide to have the surgery?
I had run out of meds that I could safely take; since Remi made me sick, I wasn't allowed to take Humira or those like it. Symptoms didn't respond to anything.

•What details can you give me details about preparing for surgery?
Get as much information as you can beforehand, both online and in real life. Meet with your surgeon's ostomy nurse. See if you can wear a bag around beforehand to know what to expect.

•What recommendations do you have for finding an excellent surgeon?
I went to the best university hospital in my state. I'm from a smaller town and the local hospital kept sending me to them via ambulance anyway, so why would I trust my local hospital anyway? Meet with a few surgeons if necessary to find one you get a good feeling with. Meet the surgical team if you can, and the ostomy nurse. Make sure you feel comfortable with his hospital too, and that you will have friends/family near enough that you won't be alone all the time. You'll spend a lot of time in-patient between all the surgeries.

•What are your thoughts and experiences with the surgery itself?
I felt better almost immediately. The UC and arthritis symtoms were much better the next day or so. I had a two-step procedure, so I had a colectomy and j-pouch creation in one surgery. You'll probably have an epidural and a pain med pump, so your pain is manageable.

•Were you awake and alert for the surgeries or did they put you under?
Put under! This is major surgery!

•What can you tell me about recovery? (for both surgeries)
Recovery for the first surgery was pretty hard. Expect to sleep a lot, be in some pain and have little energy for a few weeks at least. Since it's major abdominal surgery, you'll have trouble sitting up and doing other things like that for a while. It was even hard to walk for a while. Recovery for the 2nd surgery was no big deal. I probably could have gone back to an office job after a few weeks.

•What was your most difficult part of recovery? (for both surgeries?)
Sitting up and moving around, doing basic things around the house etc.

•How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your moment?
I slept on my back between the surgeries. Not sure why, but it took a while to get back to sleeping in a normal position.

•How often did you have to empty the bag? How often did you replace the bag?
I emptied it probably 5 times a day and changed it every few days because I had some pretty bad leakage. Don't focus on the bag though, if you go for a j-pouch it will only be a few months of your life.

•I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries)
No time off to prepare except for a few appointments with surgeons, and the day before for prep (like a colonoscopy). At least 6 weeks off for the first surgery, maybe a month after the second.

•Do you require any medications now?
Just a couple, unrelated to UC.

•What is your diet like now?
Anything I want :) I slowly added everything back in.

•Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods)
Absolutely. Veggies and fruits make me go slightly more often, but it's not a big deal so I don't limit them. Nuts are the similar, and can be sort of painful to pass if not chewed well. Grains are fine. I can drink alcohol as long as I drink a lot of water too.

•What inconveniences do you have in your day-to-day life post-surgery?
Life isn't as "normal" as a healthy person, but compared to UC it's far more normal. I just have to use baby wipes or put on diaper rash cream if I get "butt burn."

•How many times during the day do you have to use the bathroom now?
Depends on what I eat, but usually once in the morning, once after every meal, maybe another time or two before bed. I usually sleep through the night.

•Do you expect any changes for yourself 15 or 20 years down the road?
I love my j-pouch so much! I plan to keep it for the rest of my life :)

•Finally, and suggestions or tips for me?
Keep educating yourself. Make sure you feel completely comfortable with your surgeon. Don't focus on the ostomy too much; so many people get hung up on the "bag," but it's not bad at all and you really won't have it long as you prepare for the j-pouch.

•Did you have ulcerative colitis? Yes.

•What were your symptoms like pre-surgery? Severe inflammation, lots of pain and blood, urgency, low-grade fevers, lethargy, frequent illness due to high doses of Imuran, etc., etc.

•What was your diet pre-surgery? I ate most things as I found not eating them didn't help. I did avoid popcorn, alcohol, milk products, nuts, seeds, and corn.

•What medications had you tried? every type of enema (with absolutely no benefit), cortisone suppositiories, prednisone, entocort, asacol, pentasa, imuran, lialda, flagyl, cipro

•What ultimately made you decide to have the surgery? I had had it with trying to fight a disease that was clearly beating me

•What details can you give me details about preparing for surgery? Try not to think about it. Once you set a date, keep busy, and don't allow others to try and change your mind or talk non-stop about it. It is not an easy decision, and those who haven't walked in your shoes will try to talk you out of it. Once I made up my mind, they let me home for three days to prepare, pay bills, etc. I read, slept, and watched TV. I was too ill to leave the house, so doing anything fun wasn't an option.

•What recommendations do you have for finding an excellent surgeon? Very few places have surgeons experienced enough to form j-pouches. If that is the surgery you are going for, only a handful of hospitals in this country have surgeons capable enough.

•What are your thoughts and experiences with the surgery itself? I had a proctocolectomy with a permanent ileostomy. I have run into some issues, but they are manageable and way better than those I dealt with prior to surgery. The surgery itself was tough. I am young and was in pretty good shape, but I let myself get far to sick before having it done. Recovery was a long, difficult process for me, and I have always considered myself a trooper. I went bacl to work at 5 weeks post op, but it was very difficult to do so. Be patient with yourself; it is major surgery and not everyone bounces back. Make the decision to have it before you are way too sick. I got to a point where 80 mgs of intravenous salumedrol was not touching my disease.

•Were you awake and alert for the surgeries or did they put you under? NO - general anesthesia

•What can you tell me about recovery? (for both surgeries) - Difficult, as above.

•What was your most difficult part of recovery? (for both surgeries?) The most difficult part of recovery was feeling helpless. I wished I could bounce back and literally flet half dead for a long time. Not to scare you, but again, I waited too long to have surgery.

•How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your moment? Fine. I have always been mostly a side sleeper, and that is how I sleep with it. Right after surgery I had to sleep on my back because my side was too painful.

•How often did you have to empty the bag? How often did you replace the bag? I empty 4-5 times a day and replace the bag about every 4 days.

•I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries) This depends. For me it was 5 weeks, and I was not ready to go back even then.

•Do you require any medications now? NO!

•What is your diet like now? I eat everything but fresh fruits and veggies and popcorn. I juice all of my nutrients from fresh fruits and veggies. I had a blockage on mango a month back and have been nervous to try fresh fruits/veggies ever since.

•Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods) Everyone is very different on this

•What inconveniences do you have in your day-to-day life post-surgery? None that are significant. Some are bothered by dealing with the bag, but I am fine with this. It beats the alternative of remembering to take a ton of meds everyday of my life.

•How many times during the day do you have to use the bathroom now?

•Do you expect any changes for yourself 15 or 20 years down the road? I hope I am in great physical shape and out enjoying a long, fun retirement with my hubby :).

•Finally, and suggestions or tips for me? Don't wait until you are too sick. If you are remotely considering this, start meeting colorectal surgeons now. I may have even considered the j-pouch had I been educated. As it was, I didn't have time or energy to deal with research.

Post Edited (uc_free) : 5/27/2012 6:37:46 PM (GMT-6)

Did you have ulcerative colitis?

Possibly. They are still not sure if it was Crohn's colitis or Ulcerative Colitis.

What were your symptoms like pre-surgery?

Diarrhea daily for about 10 years (from age 18-28), and for the last few months before surgery, I had diarrhea about 20 times a day.

What was your diet pre-surgery?

Tried anything and everything that might help, but nothing did...gluten free, low fiber, etc. I almost never ate fresh fruits or veggies--couldn't handle them. Last few months before surgery I was hardly eating at all except for ensure.

What medications had you tried?

Just about everything: asacol, remicade, 6mp, Imuran, Humira, LOTS of prednisone, and probably some things I'm forgetting.

What ultimately made you decide to have the surgery?

My GI said it was basically going to save my life, I was in such a bad flare at the time. I had tried every med.

What details can you give me details about preparing for surgery?

Most people have to do a colon prep but I didn't have to since I was barely eating.

What recommendations do you have for finding an excellent surgeon?

Try to get the recommendations from patients since they have no affiliations.

What are your thoughts and experiences with the surgery itself?

It actually wasn't as bad as i thought because I was so sick before it. I was in so much pain before the surgery, it was like a different pain when I woke from surgery and I honestly immediately felt better, knowing the diseased colon was out. A lot of people feel that way. I felt fresh, like it was a new start.

Were you awake and alert for the surgeries or did they put you under?
I don't think they would ever do this surgery with a person awake.

What can you tell me about recovery? (for both surgeries)

I have a permanent ileo, so I only had one surgery. I was in the hosp for about 5 days and then I recovered at home for about 5 weeks. Then I returned to my very active job. The worst part of recovery was my butt wound, so if you have a temp ileo you wouln't have taht.

What was your most difficult part of recovery? (for both surgeries?)
Worst part of recovery was how weak I was from not having eaten for weeks before my surgery and then weaning off the pred (I was on 60 mg at time of surgery).

How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your moment?

My ostomy is permanent, and sleeping is fine, once it healed (after about 4 weeks). I just don't lay directly on it because then the poo would pancake around my stoma.

How often did you have to empty the bag? How often did you replace the bag?

Everyone is different but I empty about 5 times a day (about every other time I pee...it takes like 1 minute, seriously. Not a big deal) and change my pouch about every 3 or 4 days.

I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries)

I can only say for the first surgery, but I'd say about 4 weeks.

Do you require any medications now?

Nope! :)

What is your diet like now?

So much better!!! I eat fresh fruits and veggies now, and I really focus on eating as healthily as possible. I have to be careful of very fibrous things like nuts, popcorn, seeds, skins, etc. to avoid a blockage but it is so much better than before surgery.

Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods) As I said above, have to be careful of very fibrous stuff, but I eat salads no problem, as long as I chew things thoroughly it's fine. Grains are fine, bland foods are fine, and alcohol makes my output watery but otherwise it's fine. Potatoes or fries or chips make my output suuuper thick. Stuff with food coloring comes out that color :)

What inconveniences do you have in your day-to-day life post-surgery?
Compared to my life before surgery? Almost none. I used to have to get up 3 hours before I left my house to have diarrhea. Then I would still be worried about it happening after I left. Now I get up about an hour before I leave, and the only real inconvenience is changing my pouch, which takes about 15 min every 3-4 days. Awesome!!

How many times during the day do you have to use the bathroom now?

Since I have my ostomy, I just go whenever I have to pee and empty if i need to during that.

Do you expect any changes for yourself 15 or 20 years down the road?

HOpefully not!

Finally, and suggestions or tips for me?

Don't be afraid of surgery. For the huge majority of us, it has drastically improved our quality of life. We are here for you to ask questions if you have them, but overall, we are a pretty happy group, thankful for the chance to feel healthy again. I feel pretty much normal now, whereas before surgery I was so far from it. the funny thing is I didn't realize how NOT normal I was before surgery until after I had the surgery and started to feel so much better.

hi x5800, as others have answered all your question, I'm gonna be brief. I had UC for 20 years & it held me back to a huge extent. By 2009 I was sprinting to the loo 20 times a day (if only it was an olympic sport !!!). I had to give up a great job in the middle of a recession because of the UC. By April 2010 colon cancer was a certainty & also more than likely liver cancer too. Surgery in May 2010 was the start of a whole new life. A permanent ileo & I havnt looked back. Sure I was scared beforehand; I had avoided the idea of a bag for 2 decades. It is painful immediately after the op but the morphine takes care of it & the nurses are angels. I've had much worse holidays with UC than the 10 days in hospital. My abiding memory is that on Thursday morning I had the usual miserable UC symptoms & on Thursday evening waking up after the op, I didnt -I never felt like a UCer ever again. It takes time to heal up; after about 6 weeks I began to feel vaguely human again & 3/4 months after I had regained strength & had reach a normal weight for my height (10 stone). I'm just over 2 years with my bag & I can do anything I want in absolute comfort - cycling, hillwalking, 10 hour working day in an office, meetings, weekends away with friends, spend all day out & about doing impromptu anything without caring whether there is a loo anywhere about - just like a normal well person.

No one knows of my surgery & plumbing except my girlfriend & immediate family & I'm pretty sure they forget about it 99% of the time

I know that it is difficult for each person deciding & going thru the op - its a real scary time & everyone deals with it all differently. However for a lot of us with UC there is a possibility of a great healthy life ahead & I hope if you decide to proceed, that you will achieve this.

I tried to be brief but I failed sorry !!

Cheers & best wishes

You have gotten many great replies here so I will keep mine short.

I had severe UC that could not be controlled by meds....tried them all.

Had jpouch surgery 2 years ago next month and it was the best decsision I ever could have made.

I had it done in 2 steps and my recovery time from start to finish was 3.5 months. I'm lumping that time together with both surgeries.

I can eat whatever I want now and use the bathroom an average of 4-6x a day with one of those being in the middle of the night. Absolutely no urgency. I can hold it for a pretty long time if need be.

The surgeries are tough but it's so worth it in the end to be done with UC forever. The most difficult part for me was the ileostomy. My stoma wasnt the best and I had a lot of skin breakdown because of leaking that caused me great discomfort. But it was temporary and I made it through. A highly skilled surgeon who has done many of these procedures is a MUST. Good luck with everything!

Your surgery can be done either laparoscopically (several small incisions) or open (one big incision).

My surgery #1 (colectomy) was done laparoscopically. The worst pain from that surgery came from all the gas that they pumped into my abdominal cavity to be able to see and dissect everything. The gas stretched my diaphragm, hurt the nerves in my shoulders temporarily, and made awful twinging feelings all around my stomach. Also, I retained part of my rectum, which had UC and spazzed inside of me from time to time.

My surgery #2 (j puoch formation) was done semi-open. I have a 4-5" scar from my navel to my pelvis. The /only/ type of pain I've felt so far with this one is incision pain.. the skin and muscles that were cut are not happy :( the incision looks great but it feels extremely tender and I can't bear to have anyone else touch it.

Try this again....lol....my submission is not here...Theresa and I must have hit submit the same time.

My husband's pain was different. Initially his right shoulder was very sore due to the anesthesia and air (?) that is used during surgery. Took a few days to lessen and went away a few days after that.

His large abdominal incision really didn't seem to bother him too much. The pain meds and epidural really helped that. His surgeon used the glue and no staples or stitches and it has healed so beautifully and the hair on his chest you see nothing but the small dimple at the top where they must tie things off inside???

What bothered him for awhile was his butt cheeks were tender and sore where the drains were until they healed.

His back did get thrown out of whack however....went to the chiropractor who did very mild massaging and used some kind of machine as we did not want anything too too manipulative with his spine...first treatment really helped immensely with that. Had a 2nd and 3rd visit and it was totally gone and has not bothered him since.

However the very next day when he woke up, got out of bed and walked even with IVs and pain meds and having had surgery so soon he had a totally different better feeling of wellness after that awful diseased (nasty as the surgeon called it) colon was removed. Pathology reports with everything being negative was the icing on the cake.

Thanks again everyone for the replies! My first surgery in August went great, the J-Pouch was formed in the second surgery in December, and I'm looking forward to the third (takedown) surgery this spring.

I posted a list of followup questions here if you're interested: www.healingwell.com/community/default.aspx?f=33&m=2620372

It was a long time ago when these was posted, but figure there are many people with similar questions about surgery options.

Did you have ulcerative colitis? Yes

What were your symptoms like pre-surgery? 7-8 years of pain, bleeding, urgency

What was your diet pre-surgery? very restricted

What medications had you tried? Asulfadine, Asacol (I was on the double blind trials), prednisone

What ultimately made you decide to have the surgery? symptoms were getting worse

What details can you give me details about preparing for surgery? A couple months before surgery I made visits to both a blood bank and a sperm bank. The prep for the surgery was brutal. I was supposed to drink a gallon of "Go Lightly" which is totally misnamed.

What recommendations do you have for finding an excellent surgeon? Mayo clinic. Would look for hospitals/doctors who have done the surgery many times. There were not many when I had it done in 1987.

What are your thoughts and experiences with the surgery itself? Two surgeries. I had an ileostomy bag while the internal J-pouch healed. Went back in for a second surgery to close up the ileostomy and open up the flow.

Were you awake and alert for the surgeries or did they put you under? Put me under.

What can you tell me about recovery? (for both surgeries) Tough keeping hydrated. I started eating "normal" food almost immediately. Conceived a child in between the two surgeries (he is 24 now)

What was your most difficult part of recovery? (for both surgeries?)

How was sleeping with the temporary ileostomy? Do you have to stay in a certain position or limit your moment? Don't remember any real problems other than one time the seal came loose while sleeping and it leaked. Avoid eating before bedtime to solve that problem.

How often did you have to empty the bag? How often did you replace the bag? Don't remember.

I currently work a full-time office job. How much time should I expect to be away while preparing for and recovering from surgery? (for both surgeries) 3 months but with an office job you may be able to work part of that time in between. Maybe less down time with improved surgical procedures now.

Do you require any medications now? No

What is your diet like now? Pretty much anything. Avoid raw onions and nuts as they seem to open up the flood gates and I get dehydrated easily.

Do certain foods affect you differently? (veggies, salads, nuts, grains, alcohol vs bland foods) No

What inconveniences do you have in your day-to-day life post-surgery? I had the surgery in 1987 so I'm past the 25 year mark with a internal pouch. I have pretty much learned to live with it. Keeping hydrated is the main thing. I still play basketball but need to be careful with sudden movement. Long distance running is not a good option for me.

How many times during the day do you have to use the bathroom now? 4-5, once at night.

Do you expect any changes for yourself 15 or 20 years down the road? Not really.

Finally, and suggestions or tips for me?

I would not hesitate to choose the surgery option. Your life will be better.