Surgery in February

Hello all,

I just want to introduce myself to this forum and see if you have any advice! I was diagnosed with ulcerative colitis at age 13, was sick on and off throughout high school and had my colon removed in an emergency surgery at age 18. I had surgery to create a J-Pouch later that summer; and scheduled a takedown surgery for the following spring. When the surgeon went in to do the takedown surgery, she discovered that the pouch was scarred, fibrotic and severely inflamed...so instead of completing the takedown, she removed the J-Pouch. I went to Cleveland clinic about a year later to see if they could attempt a second J-pouch. Due to recurrent rectal abscesses and lack of sufficient blood supply back to my rectum, the surgeon elected to remove my rectum and convert my loop ileostomy to an end ileostomy (we had discussed this as a possible option prior to surgery).

So that brings me to the present day. My last surgery was in 2010. Since my initial surgery at age 18, I've always had an ileostomy and all attempts to convert it have failed. I consulted with Dr. Dietz in Cleveland this summer, who thought I would be a good candidate for a K pouch. I lead a very active lifestyle and have found over the past 10 years or so since my initial surgery, that, while I have found ways to do many things, the ileostomy really does limit me quite a bit. I have a K-Pouch surgery scheduled in Cleveland for mid-February. I am excited but guarded at the same time, given the number of surgeries I have already had. 

Any advice re: the surgery or recovery? How can I bounce back quickly and maximize that chances of this actually working? Anything you wish you'd known prior to surgery that you know now? I have a very physical job (work as a therapist in a rehab facility with stroke and brain injury patients) and need to break able to lift up to 80 pounds and work up to 3-4 hours at a time without taking a break. How long do y'all think I'll need to be off work? I'm estimating 8-10 weeks, and also have the option of going back on "light duty" (basically doing secretarial type stuff) for a period of time if needed. 

Original Post

As Dr Dietz says, all cases are different. I am about 7 weeks post-surgery. Dietz’s nursing team warned me that this would be a very difficult recovery. They told me that I would be in pain and frustrated. I figured that since I had already endured 6 previous surgeries for my J-pouch this recovery would be similar. This surgery and recovery was harder than surgeries 2-5 combined. I’m just slowly moving past the regret phase. Everyone is different but I’ll answer your questions based on my experience. 

The nurses kept reminding me to be patient with the long, tough recovery process. At week 7, I can’t imagine working. I can barely make it to the grocery store. I didn’t anticipate how painful it would be having my bottom cut and sewn. That area is very sensitive. I still cannot sit comfortably for more than a couple minutes. I’m just starting to intubate and it is painful. I can’t imagine trying to intubate at work. So be realistic and patient with yourself re: recovery time. Have a plan B just in case you still can’t work after 10 weeks. Stressing about working isn’t going to help your recovery. 

I felt very prepared but there are a few things I wish I had known before surgery. I’ll list a few but feel free to message me.  

- I wish I had packed more snacks. The food at UH is horrible. I already didn’t have an appetite but the food made it worse. I wish I had brought more of my favorite snacks.

- If you aren’t from Ohio, I recommend making plans to stay in the Cleveland area for a week after surgery. Ohio laws prevent Dr Dietz from prescribing more than a 1 week supply of pain meds. I was glad I stayed after getting discharged because I was able to see nurses in the clinic to get my stitches removed, asks questions about managing my waters tube, and get more pain meds if I needed.

- I went shopping to buy some extra large clothing to accommodate the waters tube. I didn’t really need most of it because I was rarely able to leave the house during that time. I am glad I took a kaftan and house shoes so I could comfortably walk the halls. I also took a heating pad which helped with the pain.  

Feel free to call/email Lovette, Vicki, or Rosemary with any questions you have. They are awesome and very responsive. 

Good Luck!

Hi Reenie, As Shavon mentioned everyone experiences things differently. My experience was totally different. I stayed in the hospital a month mostly because I had the drainage bag in that entire time. Since I live a hour and a half away from the doctor, the plan was to stay at a nearby hotel but I suppose the doctor thought staying in the hospital a better idea. I don't remember having a lot of pain. And when I first intubated it wasn't painful just different. My J pouch failed miserably which meant I went to the bathroom so much my rectal area was so painful and sore. After the surgery, the doctor commented that I must have been in a lot of pain. But other than that there were no other problems there. I have no pain now but I'm not supposed to lift more than 30 lbs and I try not to do a lot of bending over. I try to protect my stoma as much as possible. While I was in the hospital I was not allowed to eat anything. I lost a lot of weight but once I was discharged I was allowed to eat normally but small meals throughout the day. After the first doctors visit I was told to eat normally there after. You should ask the doctor re snacks first. I would think bouncing back would depend mostly on you, following all instructions, and your attitude regarding all of this. 

I wish you the best of luck. Godspeed! Have a beautiful day. Mary

My experience was also different.  I had my J pouch removed and got a BCIR, which is different than a K pouch in the way it is constructed but functions the same way.  Dr. Ernest Rehnke in Florida did my surgery and I highly recommend him and the hospital staff.  My surgery involved a 21 day stay (standard for most BCIR patients there) and I was discharged without needing a bag.  For the first week after discharge, I was instructed to intubate every 2 hours during the day and once at night.  Each following week this time was increased by one hour with no nighttime intubation.  This schedule allows the pouch to increase to its full size and now I empty at my convenience 4-5 times a day.  I can often go up to 12 hours, which would make things a breeze at work. I did have a lifting restriction for 3 months, and afterwards can lift as much as I want.  Recovery went well for me and I was able to do most of the activities I enjoy three months post-op.  I have had my BCIR for almost 5 years and enjoy a very good quality of life.

With a K pouch or BCIR, you will be able to live a normal life and not experience the problems you are now having with an ileostomy.  I would recommend starting with light duty and then go to regular duty when you feel up to it.  Avoid the heavy lifting for a while. Please feel free to message me with any questions that you might have.

Bill

Hi Reenie and All,

I am nearing 6 months with my K, having 2 prior J’s. 

My issues, not much bowel left so I am food deprived 🤨, chew, chew, chew!

You should discuss your amount of lifting with Dr Dietz. Just had a lot of PT myself

I had minimal pain with surgery,my rear had been on fire for months, so this was an answer to my prayers.

It does take about a month to ease up on the butt pulling..Then a little weird to know you kinda miss passing gas, sorry folks, just had to mention that🤔

My surgery also done by Dr D and the folks there were very kind to me.

We are a small group and I would sure like to hear from some of you too.

Good luck with your surgery , sending you many good thoughts 🌻

Janice

 

 

 

 

reenie— welcome to our korner!  We are very supportive and informative group, Who can understand your problems and be there for you. So many people on this forum were there for me, and continue to be.I think you will do very well, as you have already endured several tough surgeries. That said everybody is different, which is one thing I think we all agree upon!

Dr. Dietz also did my surgery, in 2015 when he was still at Cleveland clinic. I was in hospital for nine days and then stayed at a hotel (because the hospital requested I do so) for two more before taking off for a friends house.  I returned four weeks after the surgery to have the catheter taken out and be checked. That was a one day turn around trip, from Boston, which was a bit of a push. It Would have been good to stay in Cleveland, try my hand at the catheter insertion, with the back up of going back to the hospital the next day if necessary.  But all worked out OK.

 I agree with Janice:  multiple chews  and discuss with Dr. Dietz how much you can lift. There is always a danger of hernia, which can require a valve revision. (just had one, although cause was not lifting.)

One thing you can do to prep for the surgery is to read posts on this forum. I found them extremely helpful. Remember we are discussing problems, and not everybody experiences each of these problems. There are k poachers out there who probably have had none.   

Feel free to ask questions and keep us posted please. Best wishes for your surgery. Janet

Thank you all for your helpful replies! Definitely a few things I wouldn't have thought of on my own. Bigger shirts are a brilliant idea. 

Just to clarify...I've actually already had my rectum removed and sewn shut. And I agree, it was quite unpleasant and not something I'd ever care to experience again. But thankfully that won't be a part of this surgery. Not to say that that'll make it easy...but one less thing to worry about at least. 

Thankfully my job has been really supportive and will accommodate me however I need. So I'm not too worried about that, just trying to gauge from other folks' experiences some sort of a time frame for what to expect. And I will definitely get input from Dr. Dietz as well! 

I'm traveling from out of state to Ohio and then plan to stay with my family in Indiana (~4 hours from Cleveland) while I recover, so good to know that I may need to plan on a bit of extra time in Cleveland. Apparently if you're under 30 and have a condition that started as a minor you're still eligible to stay at the Ronald McDonald House, which would significantly cut down on costs if I need to stay longer. 

Again, thanks to all of you who responded! I'll be in touch. 

Hi Reenie,

Hope things are going well for you and preparations for your upcoming surgery are still in the works. I had my k-pouch put in and rectum removed at the same time by Dr. Dietz at CC in 2016 — after a large surgical hernia repair in 2013, a J-pouch in 2011 and an end ileostomy in 2010. I was looking something else up when I saw your recent post. After reading through the responses, I can add the following:

— I’d run your post op physical expectations past Dr. Dietz and your local doc. I know each case is different, but based on my multiple open (not laparoscopic) surgeries, it was recommended I not return to any serious abdominal workouts or weightlifting (inc. none of the kick boxing and Pilates I used to do.) I have also heard a number of folks on the site talk of experiencing complications after returning to their workouts, so I’d be concerned about lifting 80lbs on a regular basis.

— As for length of stay: I hate being in the hospital so I arrived in the best shape I could get, started managing the waters cath myself after the first day, got walking asap and got home in 5 days. I don’t know that I’d recommend it, but it is possible. I definitely could have used more support at home than I had. On the other hand, as others have indicated, some stay 2 weeks or even a month. How far away you live and whether you have any local support should also be considered (see my last comment.)

— I work from home, so it is harder for me to comment on returning to outside work. I was a lot more active by 8 weeks, so that would probably have been a my expectation. Again, though, given the nature of your work, I’d suggest that you talk with your docs about return to p/t and lifting... that’s a whole lot different than desk work. I don’t think I lifted more than 10lbs for the first 6 months and still probably rarely lift more than 40-45.

— Lastly, I wish I had known that I basically had no local support with the k pouch when problems arose. I ended up with difficulty intubating as my stoma kept shrinking, despite having kept the waters setup in place for longer. I ended up needing to leave it in for a week at a time intermittently for the first 6 months to keep my stoma from closing up (major hassle.) So bring home a second water’s cath just in case! And make sure you have the nurses numbers handy :-) I wasn’t prepared for problems and it made the difficult days so much harder. Realizing I’d have to drive to Cleveland if I needed anything because local Gastro docs or the ER couldn’t help was less than pleasant.

Best wishes for a great outcome and quick recovery! My life is vastly improved over a dysfunctional j-pouch and I hope this works well for you :-)

Jennifer

Hi Reenie:

Wishing you a speedy recovery after your surgery.

I have had a K-pouch for over 35 years (original surgery when I was 21 years old). I have lead a very active life. I have desk job Monday through Friday and on nights and weekends I am a volunteer EMS Chief for our local Fire Dept. The K pouch doesn't stop me from doing anything, but some things may require a little advance planning, like traveling. I just had a revision after 35 years, and I'm going through a second one this coming May, but the K pouch has been awesome for me. You will quickly find out which foods clog the catheter and make the intubation process a little longer.

Hi Reenie, 

I am one of the ancestors here on the site, I got my k pouch in 1979 at the age of 18. It has been a hell of a ride all of these years. From being practically housebound pre-pouch to total freedom post-pouch.

I have had a number of revisions over the years for various problems but mostly due to another disease (Ehler's-Danlos...genetic collagen deficiency that means that my connective tissue does not heal well = no glue in my body)...it took its toll on my pouch and valve buy I still would not change it for all of the tea in China.

Things have progressed somewhat since the original but the idea is still the same...open surgery, pouch creation, valve out to the stoma and an indwelling cath hooked up to a bag for aprox. 4 weeks which gets clamped starting at 1 out of 4 hrs and works it way up to 4/4hrs and only intubating when needed. 

Some of the myths and realities are:

Yes, you can lift weights post-pouch if you were doing it pre-pouch...Do not suddenly start a strenuous sport 6months -1yr post op...it takes a full year for your body to heal on the inside even if you don't think so. 

Intubation is not painful and never should be. If it is then there is a problem (need more lube)

Always use lube...and then use more lube. You might not realize it but if you don't you are creating micro-tears in your valve that could cause problems later on.

Air freshener may be your friend for the 1st while. Keep some with you at the hospital or a favorite essential oil or perfume. 

An immersion blender may become your best friend. No matter what you cook for others, you can always blend it into a purée or soup (veggies, salads, fruits).

Chew. Chew...Chew more. Then chew again.

Avoid chunky, fibrous foods for the 1st while (pineapple, peas, corn, mushrooms, beans, leeks, asparagus...) once you get the hang of it you can become more adventurous...until then, take it slow.

I am an adventurous eater and have tried much but have learned that 'Whites' are not my pouch's best friend, they turn to wall paper paste in the pouch and cause unnecessary stress....white flour, sugar and fat can be replaced by wholegrain breads and pastas, real butter (full of vitamin A) etc. 

I no longer 'jump'...I walk; climb or swim but do not jog, run or bounce (my pouch has slipped off of the wall a couple of times...)

The most important thing is to not get frustrated, angry or upset. It is a learning curve and you will be learning all of your life. I still am after 40yrs.

I take extra vitamins and minerals to keep up my strength, Organic Silicium to build up my connective tissue for better healing, collagen to keep my abdominal wall reinforced.

I do yoga, pilates, walk miles when I can, swim for hours and am very active. 

Things that I love to take to the hospital?  Eat plugs (yup!), fuzzy socks and flip flops to take a shower in (nasty fungus in some of them), favorite pillow, music and movies, big tshirts with wide sleeves for the i.v. to pass through, body oil to get the tape off my arms, (prewax your arms and bikini pre-op ), slippers that do not slip, lozenges or choloseptic throat spray for post op (my throat always burns which leads to coughing...ouch!!! 

Gummy bears to suck on and a best friend who will do emergency runs for whatever I need (yes, she is priceless!)

There are about 1000 other things but the others here have covered most of it all.

Other hints...if you live alone...put all food and food supplies where you do not need to bend or stretch to reach them, buy supplies of soups and juices (prune or grape will be your best friend for a while), make sure that you do not need to go down on your hands and knees for anything, stock up on kleenex, toilet paper and paper towels (they work well in a pinch to cover your stoma post-op or 1/2 minipads to stick on the inside of your clothing to protect from mild muscous leakage), put your drugstore on speeddial.

I have traveled 1000's of miles pre and post op (Paris to Toronto) and if you need travel tips just ask.

Good luck.

Sharon

 

We have had a horrendous couple weeks.  My husband Tom, who has lost his eyesight, was having trouble passing his catheter.  He has had his k-pouch 46 years.  Went to Vanderbilt twice to the ER and they recommended inserting the catheter and leaving it in place with a bag to let things settle down. Long story short, his pouch was perforated by the catheter.  He had flushed it a couple times, and flushed all that mess back into his abdomen.  4 hours later, a rip roaring peritonitis had set in.  He begged the surgeon to try to salvaged the pouch, but they were pretty down on the k pouch.  As someone stated above, not very good local support.  He was pretty near death, (blood pressure was 60/40 several times over the next days post-op) so I am completely thankful that they were able to clean out his abdomen, even if it does mean wearing a bag.  Tom is really upset about it though.  My advice is head to the Cleveland Clinic at the first sign of trouble

 what a frightening experience and I’m so sorry  for the frustrations and of course needing to settle for less than  what one expects and deserves.

I too had peritonitis, although it was due to a failed one step j pouch surgery and the only option was the external bag, which I had for a year.  Peritonitis takes a lot out of one and be as patient, as best you can, with the recovery. It was some years later that I got a k pouch and I share your  frustrations with doctors not knowing or caring about the k pouch.   

 I hope the recovery goes well. Your husband  might get some  helpful suggestions and inspiration from many people on this site who have adapted to the external bag. It’s tough of course and I don’t mean to candy coat a bitter pill.  janet 

I am so, so sorry...this is awful...not the loss of the k pouch but everything that you are going through with your husband...I am sure that he knows what a wonderful wife he has and how lucky he is that you are standing beside him through all of this...not many have or would.

I do not know how he is handling all of this, it is a huge strain on his body and is going to tax all of his reserves so please make sure that he is well supplemented in order to get all of his old energy back.

My prayers for a quick and complication-less recovery.

Sharon

Hi All,

To Tommy, my great sympathy, hope you are healing.

Kpouch is so misunderstood.

I got mine last July by Dr Dietz at University 

Hospital in Cleveland, who had left CCF .

It is my understanding they no longer have a specialist for kpouch at CCF. I was a patient  there for 19 years in colorectal dept.

My gastro is still there though , but Dr Dietz is quite a master at The K that I will definitely continue seeing him.

Sending prayers to you and your husband 

j

 

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