Need surgery! Ileostomy? J pouch? Laparoscopic method?

I[m sorry you are in a living hell now.  You will probably feel a lot better a few weeks after the surgery.  Like your surgeon is saying I had my take down 8 weeks after the first surgery.  Some people wait longer and since you've been on such a high dose of prednisone I would think that you'd need to have your temporary ileo longer - but I'm an accountant and not a doctor.  I hated mine but I was obese and it  was hard getting the appliance to stay on my rounded belly.  There is one lady in this group that went a year before she got rid of her ileostomy!  Since I had a hard time with it I was glad to get rid of it.  I've read here that a perm ileo is a lot better than a temp loop one, mainly because they can place it further down the pipeline (small intestines) than they do a temp.  They say it's permanent because they actually cut your small intestine and take it through a hole in your abdomen. With the temp they bring your intestine through a hole in your abdomen and sort of make a loop so they don't make a cut.  When the take down surgery #2 comes along they just unkink the loop and stick it back inside of your abdomen.  It is interesting that there are no nerve's on the outside of the loop so it doesn't hurt.  I was afraid of that when I first saw mine.

 

Most people that are posting here do so because they are having problems.  They say that is only 5% or so of people that have j-pouches.  It makes sense as if you aren't having a problem you don't need to reach out and find help.  So please don't worry about everything that might go wrong.  Look forward to getting off of TPN and eating again!

 

I lost a lot of weight after both of the surgeries but had 65 pounds of prednisone weight to loose. I had dehydration problems after my first surgery and ended up staying in the hospital 16 days.  That is probably why I lost weight after the first surgery.  I'm telling you this so you won't be afraid to eat after your surgery.  I think it's best to eat smaller meals more often.  You might also want to supplement your diet with something like "boost".  I like the "Adkins" meal replacement drinks better.  I don't know if they are nutritional equivalents or not.  The resident told me to order a lot of different foods but to just eat one or two bites of each. I noticed her looking at my tray after I ate and she smiled at me - because that is what I did.  The medical staff kept track of all the fluids I consumed and the fluid that came out.  Because I kept getting dehydrated I noticed all of their notations by the hospital room entrance.  They also kept track of how many times I walked around the ward.

 

Hopefully you will have an ostomy nurse that will help you pick out the correct supplies you need and s/he will place your first order.  That's the way it worked for me.  I didn't realize that  I needed to have a prescription for them.

 

Good Luck!

P.S.

I had an open surgery and that added to the adhesions/scars that I already had in my abdomen from a prior surgery.  Fewer adhesions occur when the surgery is performed laproscopically. Unfortunately I have chronic pain from adhesions so wish I'd had laproscopical surgeries. 

 

Your rectum will all be removed except for a few centimeters.  Your j-pouch is attached to your sphincter muscles using the "double stapling" surgical method. There is another less popular surgery where there there is no rectum and the j-pouch is hand sewen to the sphincter  The reason most are double stapled surgeries is because the risk for incontinence is greater with the other surgery.   

I doubt that anyone would do a 1-step surgery on you because of your general condition and taking high dose steroids. I was in that situation and had a 1-step, but I had numerous complications. But that was in 1995 and they did not have as much info as they do now. I was pretty lucky that things were not worse, as I could have lost the pouch. Many surgeons prefer a 3-step approach when you are very ill, malnourished, and on high dose steroids.

 

Laparoscopy is great, but it is a subspecialty and not all surgeons are certified in it. Plus, even if it is planned, it can revert to an open procedure for a number of intaoperative findings.

 

As far as recovery times go, it can be anywhere from a few weeks to many months. It all depends on whether there are complications or other unanticipated things going on. Basically, you just prepare for the worst, but hope for the best. Surgeons like to paint an optimistic picture, and most of the time they may be right. But things can go wrong, no matter how careful or skilled they are. Bottom line, don't plan on a big vacation those first few months. 

 

Jan

I second the above.  Remember, you are not alone.  You will get through this....

I think it's just important to ask yourself what the most important qualities are to you.
Generally speaking having a permanent illiostomy means that you will always need to carry a small bag of supplies wherever you go. You will learn to live with the bag and whilst swimming is a little bit complicated I have found no other real restrictions with having an illiostomy. It has honestly taken me the best part of a year to get used to the bag, I have a really bad stoma and lots of issues with allergies to products and the weird shape of my stoma so it took me months before I could actually change it without assistance. The main advantage of going straight to the permanent stoma is that you can get better quicker, as it is one operation and it's got a very high success rate.
With a stoma you feel no urgency to go to the toilet it just happens by itself with no real sensation. I have a very active and watery bag so I still use imodium and gastrostop to slow it down and empty my bag about 5 times a day. You will at some point have a leak or an imbarrassing issue, just like I'm sure with the jpouch at one point or another you will have an accident. I'd say they are about equally imbarrassing and that the likelihood reduces with time.

With the j pouch you will have slightly more physical freedom and the ability to use public change rooms without a million questions about what the thing stuck to your belly is. You will have the urge to poop back and iv been told that people with jpouch go to the toilet about 10 times a day but can generally control the impulse. Depending on how long you have your temporary illiostomy you may struggle with relearning to use your anus and the first few weeks of having the jpouch will be really hard but should get better from there.

With both options you will be only slightly restricted in what you can and can't eat. It will rely entirely on your own body and how it chooses to process things but generally you will find that if you prepair and chew in a careful way you can eat anything. I can even eat nuts and seeds and popcorn. I introduced these things slowly and monitored my reactions and was very careful.

When I was given your choice I decided to go with the jpouch. I have had many issues with it leaking and creating fistulas around my reproductive organs but I am the first patient my dr has ever had a failure in. I am just unlucky. And even though it has been a year already with the temporary illiostomy and most of that time has been in illness I have still found this time significantly easier than uc. I went for the jpouch because I knew if it failed all that would really happen is I'd end up with a bag. So I figured I may as well gamble on creating a normal appearance.

I hope this helps.

I opted to go with the j pouch 34 years ago rather than have an ileostomy.  Although my frequency for using the bathroom was on the high side (sometimes 15 times a day) and I experienced butt burn, I felt this was preferable to having the bag.  I was able to eat almost all of the foods I enjoy and participate in many physically demanding activities, including alpine skiing, equestrian competitions and swimming.  There were no issues about intimacy like one would have with an ileostomy.  While the surgery is difficult and recovery can take many months, I felt it was worth it in the end.  If you are in the small percentage whose j pouch does not work out (under 10%), you can then have an ileostomy.  Other options include the k pouch or BCIR that do not require use of an external bag.  I wish you the best with  your surgery.

Bill

SO sorry to hear of your health woes, I and many of us were in your shoes not too long ago.  It is scary and frustrating and draining.  Just remember...it will get better...you will feel better!  

 

I have a j-pouch.  I was the first person to have a j-pouch constructed with laparoscopy via the TAMIS technique in April 2013.  Not many surgeons perform this but it is getting more popular.  They actually go in through and use your anus as one port, thus eliminating the need for many incisions through your abdomen.  I have two tiny 1/4 inch scars from the lapro 'hands' and the stoma scar but nothing would ever hint to the fact I had my colon removed. I did not care and still do not about scars but healing wise, it was a cinch: no adhesions, no wounds to heal, etc.  When we are already so drained from UC and it's failed treatments, removing 'some' healing is a blessing to the body.  So yes, I would advise laparoscopy if available to you. 

 

I traveled to San Diego (UCSD) for this surgery.  In my rural Montana area, there was just not a knowledgeable surgeon.  One suggested "laugh therapy" after two weeks in the hospital, so I took a dose of Remicade to get me somewhat functional, and hit the road.  Often insurance will cover out of state procedures.  Just something to think about if you can get well enough to travel. 

 

It is IMPERATIVE you go to a good surgeon for the best possible outcome.  One that is supported with a great IBD staff of docs so POST surgery you still get the help and advice you need.  As sick as you are, please try to put in one more final burst of energy...perhaps a family member could help?  Cleveland Clinic is close to you, They would help you figure something out with just a phone call to fill them in on the urgency of your situation.  They are great at lapro techniques and the IBD clinic is staffed with top doctors for your needs after.

 

I'm not going to sugar coat...honestly, I find the j-pouch tough.  My j-pouch is "perfect" by all means in construction and function BUT my immune system and the disruption in my microbiome continues to cause me grief.  Yes, j-pouches can be constructed wrong and give problems (rare) but you may always, as many of us prior UC'ers do, deal with IBD.  It sucks and it's not going away in most cases.  J-pouches make it manageable.  Bonus!  The nice thing about the j-pouch is compared to UC, yes. IT IS BETTER.  You feel better, you aren't on so many drugs; the colon is removed so the problem that was 'in' it is removed...but the underlying "problem" often remains.  I really thought after I removed my colon all would be like before...pre UC.  It's not.  It's different, you are altered.  Just remember this and try to see it as a positive thing.

 

Many times I wish I had a perm ileostomy.  Mainly, because I used to travel and be outdoors a lot and it's difficult now.  With the loop ileostomy (even though it was challenging at times) I could go anywhere, no urges, nothing.  But...my husband reminds me that it was not easy either.  WHEN the body behaves and the j-pouch functions, it's a magnificent thing...when it doesn't. ugh.

 

I do eat whatever I want but many of us pouchers still follow a strict diet.  Again, the problem (IBD) isn't removed when the colon is.  Pouchitis is frequent in many prior UC'ers and diet does help with it in many cases; not all but be prepared to modify perhaps if it helps with over all function.  Many j-pouchers eat anything and do fine.  Keep positive that you will too!  When I was so ill I didn't even know about pouchitis, I just wanted the misery to go away and not take any more drugs but pouchitis is a frequent guest in my j-pouch house and I wish I knew more about it prior to surgery.  Not sure it would have swayed my decision but...

 

Recovery takes years.  And this is a good thing!  At a low point just a few months ago, I called my surgeon about j-pouch reversal surgery.  She pleaded with me to wait.  She keeps stats on all her patients and in MOST cases, the MINIMUM time for a j-pouch is two years to get balanced and in sync with the body.  Now, those two years aren't all "bad" you will have much evolution in your function.  It gets better...day by day...month by month...and I'm actually optimistic to see how it functions at 3, 4 and 5 years out.  The body needs time to heal and adapt and I think after all the UC stuff we go through we want a prompt fix.  I can't speak of perm ileostomy but I would think that takes much adaption time too, perhaps a "bit" easier as you aren't having to run to the loo so much.

I wish you the best outcome.  If it's one piece of advice I can offer, please take the time to find the best surgeon and IBD clinic!  Remember, you have options even after a j-pouch should you not adapt well to it.

 

What Jan said.  And like TE said most ppl posting here are experiencing issues so that can skew the responses. I developed a fistula within the first year so that was a setback (it was fixed and I've never had another) 

 

That being said, I've had my pouch for 29 years and I have never had pouchitis and eat anything and everything.  I have never suffered from incontinence either.  I hope this helps and best wishes.

I had the open proctocolectomy and chose to keep my temporary ileostomy for a full year.  I'm glad I did.  Everything had plenty of time to heal and I learned to deal with the ileostomy.  It gave me back my health.  I'm now 74 and had the first surgery when I was 61 and the takedown when I was 62.  My J-pouch isn't perfect but when it is at 100% I can eat and drink everything which is important to me.  I can do it when my J-pouch isn't performing perfectly but I pay the price!  The price is any number of symptoms from seepage, leakage, cramping, increased frequency, urgency, etc.  Thank God there are medications which work for me during those times......Flagyl, for instance.  When all is said and done, I wouldn't trade my J-pouch for anything......for now!

It is probably too late - but STAY AWAY from Dr. Klas. He ruined my life. Please , please stay far away from him. I hope you are ok. Let me know, This man is a butcher and could care less about his work. He is totally ego driven. PM me if you can. I went from being a vibrant, happy, slim(ish)  56 year old woman doing Pilates four times a week and teaching cooking classes and traveling with my husband to TOTALLY and legally disabled now. I spend most of my days wishing I would just die. I developed fistulae, a giant hernia and other complications from this man's surgery. Surgery that world experts at Cleveland Clinic said I didn't need at all, ever. I can't poop because he created a right angle at the anastomosis site. Cleveland Clinic called it a "dead man's curve".  Please let me know if you are okay. I wish I had seen your post sooner. I hope things turned out better for you. Never get admitted to St. Luke's third floor post op. PM me and I will tell you all about that.

 

HE IS AWFUL , PLEASE DON'T LET HIM CUT YOU

I don't think you should try to just have it all done in one surgery.  I did it in 2 steps and sometimes wish I had waited more than 8 weeks for the take down surgery.  I never made it back to work but wasn't able to work before the surgeries. I have other health problems and was a grandma when I finally had the surgeries.

 

I don't know if they will be able to do laproscopic surgery because your prior doctor messed you up during surgery and their might be too many adhesions inside you.  

 

I might be going to a permanent ileostomy soon.  If I hadn't tried the j-pouch I would have always wondered.  I hated my temp ileostomy but am relying on others that say a permanent one is better.

 

If you are not comfortable with  your doctor, insurance coverage or not, then don't let him operate on you.  Maybe you should call your insurance company for names of all the C/R surgeons available for your surgeries.  Some perform at many different hospitals in the same area.  

 

I'm sorry that you have been through all of this hell.  I was 5'9" and 127 lbs in high school, when I look at the pictures from back then my arms look like tooth picks!  I lost a lot of weight after my surgeries, but I had 65 lbs of prednisone weight to loose.  Please make yourself eat after the surgeries.  If you don't like Boost then try something else.  I like the Atkins Chocolate Shakes.  I don't know if they are as good as Boost but they taste better.  

 

I hope you are feeling better soon.