Have an ileorectal anastomosis or K pouch, have crohns colitis

I have had a j pouch (32 years) and now have a BCIR (similar to k pouch).  I should commend your surgeon for recommending the two alternatives to a conventional ileostomy.  Personally, I would go along with your surgeon’s recommendation to have the IRA first.  The complications I had with the j pouch were frequency, some leakage and anal irritation.  I was able to keep these problems under control enough so I could do the activities I enjoyed (which included equestrian competitions, alpine skiing and traveling abroad).  I did have some rough times, but I definitely wanted to avoid having the bag. The k pouch procedures done when I had my first surgery had significant valve failure (which has now been greatly reduced).

Medical issues made it necessary to remove the j pouch and I opted for a BCIR.  My recovery took about 3 months and I have experienced excellent results.  I recommend that you select a surgeon who has done many of the procedures that you decide to have and who has had good results.  This may be the surgeon you currently have.  Both of these procedures are complex and require a high level of surgical skill.  Best of luck with whatever you decide to do.

Bill

Bill, thank you so very much. I greatly appreciate your advice and experiences shared. I too think IRA first but just a big coward about going back to bathroom again, I'll get over that won't I? My surgeon can do IRA, he's tried and tested a bit of a boy wonder but so compassionate, he told me he can do continent ileostomy but hasn't done enough of them and he recommends Neil mortensen should I go that route. My surgeon said no matter what I do he will look after me. I know I'm blessed. 

jojo

Jojo, it seems that you are well on your way to selecting your surgical option.  One thing to keep in mind is that most of those with good results do not visit these boards.  Both the j pouch and the continent pouches have high success rates and patient satisfaction.  What I found helped with my higher than normal stooling frequency was to use a good barrier cream after each BM (diaper rash ointment with zinc oxide) and I installed a bidet at home to keep the area clean.  It is not unusual to have a higher frequency accompanied with butt burn just after surgery, but that usually improves with time as your body adjusts to your new plumbing.  A k pouch or BCIR can be done later (a one-time surgery) if the j pouch does not work out to your satisfaction. Please feel free to send me a PM with any questions you have.

Bill

Bill, you are so kind, I will certainly be keeping you updated. Your support and kindness is well appreciated. 

Jojo��

Hi Jojo,

Your surgeon sounds fantastic! A real gentleman with a lot of humainity. I would stick with him!

Yes, a j pouch is a much better first option if it is on the plate. A k pouch, in my opinion, is a last resort if you have a functional sphincter and enough rectum left. 

The k pouch (I've had mine for 37yrs way before J pouches were an option and never an option for my condition) is a wonderful thing but much more complicated to fashion and maintain compared to a j pouch and should not be a 1st choice. But the choice is there...I just hope that you will never have to use it.

Good luck with your future surgery...whichever you choose.

Sharon

I concur with Sharon. My J failed but most people 's don't. Good luck 

Thanks so much girls for your kind reply. I am very lucky to have Conor Shields, Mater Private Hosp., Dublin, Ireland. He's so very compassionate and just lovely. He is only approx 45ish and spends lots of time with me in consultants. He expressed that I'll never be the same as I was before Crohns hit, but he really cares to provide me with a quality of life that I can enjoy again. Let's face it even if we were never sick, 5-10 ago we were different people and able to do stuff that we can't do now, so life changes a little bit it depends on us by how much we let it. I'm not going to let all this stuff stop me from trying to turn back time, I'm going to give it a dawn good go!!!! We owe it to ourselves, family, friends, and to our medical team who in my opinion works so hard to get us back on track. 

I did have a terrible team before and before that, they just left me sick for 4 years because I won't take anymore biologics. I got severe hepatitis, liver went twice its normal size and I have latent TB. Conor took over and I have never looked back except for ileostomy malfunction. I know I'm blessed to have him in my corner and he is made aware of this every time I see him. I also wrote to him to let him know just how much he saved my life and my little 10yr old son. It's all about getting the right team for you!! 

����

Wow, such a rare doctor.

I would like to keep his name on a list of European doctors who are sensitive to our cause...There really are not many. Honestly.

Keep him close and follow his advice. He sounds like he has your best interests at heart.

Sharon

I will tell him that, he's quite shy too but I'm sure he'll be delighted. Thx Sharon xx

The only way I would consider an IRA is if there was no prior rectal involvement or perianal disease. I presume your current surgeon has vetted your history before recommending IRA. Pretty much anyone with Crohn's with prior history of rectal or perianal involvement has not don well with IRA. If UC was the diagnosis, it also would be unlikely to work.

That said, you will very likely have a fairly high frequency, but not much different than a j-pouch. You'd have 3-12 months of adaptation, where you might regret giving up your ostomy. This is sort of common with the j-pouch too.

I don't say this to discourage you, but just "arm" you with information to help you decide what you want.

Jan

Jan, thank you so much for taking time to reply. Means a great deal to hear from all of you. I have never had any rectal or perineal involvement. I do have Crohn's disease but only ever in colon, to date! 

My surgeon has performed my colectomy and was able to walk through all of small bowel at same time and it's clear as is rectum area, thankfully, but you know nature of Crohns it has its own idea! I maybe only buying time, but I hope I get lucky! I think it's time to have luck on my side��

Thx Jan please feel free to say more

jojo

I everyone, thx again for all your support. One more thing, my surgeon told me I would lose weight again after an ileorectal anastomosis? Because of high frequency until things settle down but it may take months for this??! Can't really afford to lose much more. Any info on this, anyone?? 

Hi Jojo,

Yes you will lose more weight post op...just nature doing her job...but...the good news is that once your body gets used to its new plumbing and adjusts to its new normal you will slowly (or way too quickly) put the weight back on...I stayed rather slim the first few years...now I cannot remember what slim is!

I could stand to lose 20lbs...

I have learned that thin means sick and round means healthy...At least to my body.

Be patient and give it time.

Sharon

Sharon, you sound just like my big sister! Level headed, kind, thoughtful, and a rock. Thank you for being you

jojo 

Jojo, you sound like a perfect candidate for an IRA. You are right that Crohn's, like UC, has a mind of its own and does not follow a pattern, except for the pattern of unpredictability. So, all you can do is hope for the best and prepare for the worst. 

As far as the post op weight loss goes, you can help mitigate this somewhat by eating small frequent meals, so that you are really never empty or overloaded. As the months go by, you will be able to manage larger meals. I suppose you could try to pack on some weight before surgery?!

Good luck!

Jan

Thx Jan, great to hear all the bars!! Think it's right, IRA, feels right and logical. Just scared of going back to BM's again had such horrible 4 yrs of hell. 

Jojo

Well, there is no perfect answer. You just have to choose which inconveniences you are willing to accept. We often gravitate to the devil we know to avoid an unknown devil, which may be meeker and milder.

Jan

Hi everyone, ileostomy takedown and ileorectal anastomosis happening 30 June 2016 OMG, so very lucky to have a real compassionate and caring surgeon. Didn't know until yesterday he's a professor and only 47, some guy!! Wish me luck and if anyone has any pointers on what to expect I am open!!! 

Jojo

Hi Jojo,

Just checking in to see how you are doing and how you are navigating your post op care...please check in and let us know.

Sharon

Hi Sharon, thx so much for thinking of me. Doing good 8 weeks over now. Still sore, Stoma site still not closed yet, but to go, frequency approx 8-10 daily but together usually but no pain ye ha. Had a complication in Hosp, obstruction, got sick with my own poo, didn't know a human can do such a thing but all good now. 

I found this op harder than the colectomy, I was wiped out, strength was gone from me, thought I went 20 rounds with Tyson. 

On right track, and would do it again. No Stoma, no bag, it's just best ever, so very pleased as no Crohns symptoms either, thank God and no medication!! So very lucky

how are you doing ?

So happy to hear it...congratulations! 

Sounds like the normal post op experience...exhausted, feel like the rug was pulled out from under you, trying to sit was a major accomplishment etc...

The freedom from appliances is a wonderful feeling isn't it??? SO nice!

Take it slow, be kind to your body...as I say, this is a very long road and a lifelong journey...not a sprint...so don't hurry the healing.

Sharon

ps...doing better...not good but better.