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On August 29th I was rushed to the ER with a high fever and chills. At first I thought I had Covid but I tested negative.  Because of Covid-19 my wife was not allowed to come in with me and waited in the waiting room. Long story short, after blood tests and a CT. Scan the on call doctor told me my j-pouch was shredded (exact words) my white blood cell count was over 21,000.  The on call surgeon was brought in and he told me I had peritonitis and sepsis.  He said they were going to airlift me to Harbor View in Seattle which was three hours away but he didn’t think I would make it so they had to do an emergency life saving surgery.  A Chaplin was called in and I didn’t have a chance to talk to my family before surgery.  Long story short I was given a loop diversion ileostomy because I developed a fistula in my J-pouch.  I live in a small town where our medical professionals are not that familiar with J-pouches so I drive to Seattle to see a specialist who is familiar with j-pouches.  I underwent lab work and MRE and CT scans.  The Prometheus lab results came back and said I have UC.  but the specialist said to ignore that part of the test, you have Crohn’s disease.  She wants to start me on Remicaid but I developed an infection in my stoma so they cannot start treatment until I fectionis healed. She said there is a 50/50 chance that the fistula will heal.  If it does heal I can reconnect my j-pouch.  If it doesn’t they will have to remove my j-pouch and my anus.  This was hard for me to hear.  My wife has been amazing but this has taken a toll on her.  I have been so self absorbed and have not been able to be there for her 100%.  I am exhausted dealing with Doctors, appointments, insurance companies and my employer.  I am angry that I was Mis diagnosed when I was younger and went without treatment for 28 years and now due to getting sick I am now being told I have Crohn’s disease.  My stoma is in a bad place and was placed extra low so my scar would not show as I was younger at the time and my ileostomy was only temporary.  I am grateful that I got to raise my kids and live the life I had. But now I am depressed and can’t seem to pull out of it.  Not much to look forward to anymore.  I am not happy like I used to be.  Having an ileostomy is more of a burden to me than a blessing.  I don’t blame GOD that this happened I just don’t understand why.  I could never take my own life but I find myself thinking I would be better off if I hadn’t survived that night in the ER.  This is not the life I had envisioned for myself.  I feel incredibly alone even when surrounded by people.  My output is ridiculous at 4,500 ml.  I empty my pouch 15 times in 24 hrs.  I keep increasing my Imodium and Lomotil doses but no improvement.  Because if my stone location I can’t find an appliance that stays on for more than a day without leaking.  I am 52 years old and can’t imagine dealing with this for the rest of my life.  Some people seem to accept this better than others.  I’m holding out hope for the fistula to heal and be able to use my j-pouch again.  I’m terrified of the outcome if it doesn’t heal.  The surgeon told me he was going to take out my j-pouch that night in the ER.  Thankfully he consulted with a specialist and did t. I hope he didn’t just post pone the inevitable. i want to wake up from this nightmare. I just want my life back.

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I am so sorry that you are going through this. It is truly awful. I can't even imagine being told you might not survive and not have any family with you holding your hand.

Right now you are under the influence of immense stress, fear, discomfort and pain. You have no definite answers and the treatment is not going smoothly. I know this, though, just as you do: the only thing that you can absolutely count on is that things will change. Most likely for the better because it sounds like it can't get worse.

I'm not going to say anything stupid like, "look on the bright side" or "be grateful for what you have". I have an S pouch, I have Crohns, I get so f'ing tired of this whole thing sometimes too because it is just NEVER easy. Getting your head around that is hard.

Can you just do one thing? Don't make a full assessment about the level of shittiness of your life while you're under the influence of all of the factors I mentioned above. Rest your brain and allow yourself to be sick, to be powerless and not have a plan. Just take few days off from thinking.

Easier said than done. Is marijuana legal where you are? If so, I highly recommend a vape pen and a strong hybrid to to get you through the next couple of weeks while your body does it's thing and docs figure out a plan for you

I am so sorry honey!! I am happy you lived!!! After going through all of that, I think you should get an end ileostomy forever! And end ilestomy has less problems than a loop from what I hear. I know having a bag is not easy but I think it would end your troubles. If you truly have Crohns disease then its a definite no no to keep a pouch; Crohns disease can hurt the pouch in the long run, get the end ileostomy, I think that would wake you up from this nightmare.

Please do not commit suicide- you are married and have children, they need you! A lot of people are never blessed with a family, please stay for them and us

Keep us updated! Good luck with everything and please get better

Hello The Kid,

People deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm almost 68 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 13 years old.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.



Caty

"Perseverance is not a long race; it is many short races one after another."

Last edited by Caty

I sincerely appreciate each of the responses I have received.  This is a scary thing for anyone to have to go through.  I am mentally preparing myself for a permanent end stoma.  I am more afraid of having the pouch removed and having my bottom sown up.  I can't seem to get my brain around that.  The surgeon said men have a smaller pelvis so it makes it difficult to remove the j-pouch and everything is pretty congested in that area to begin with.  I am concerned with complications that result from a j-pouch removal.  I find myself staring at peoples abdomens and wishing mine wasn't covered with scars. I try to stay positive and crack jokes and tell people that "Most people lose their butt in Vegas but I lost mine in Seattle" or "It takes guts to have the kind of surgeries I've been through". On the outside I look fine but on the inside I feel like a scared little kid.  I am certain that I am not the only person with health issues that ask them selves " WHY ME?".  When it comes to incurable diseases , you are just along for the ride.  

If I were single my dating profile would read like a used car add.   Out of warranty, the top is warn thin, has high miles, leaking fluids, needs body work, the interior is shot and wrinkled, can't see through the wind shield, hinges are rusted, the rear end is out and they don't make parts for this make, model and year anymore, it makes a lot of noises but it still runs.  I usually get a few laughs out of this so I hope it makes someone else smile.



Take Care and GOD bless

@THE KID posted:

I sincerely appreciate each of the responses I have received.  This is a scary thing for anyone to have to go through.  I am mentally preparing myself for a permanent end stoma.  I am more afraid of having the pouch removed and having my bottom sown up.  I can't seem to get my brain around that.  The surgeon said men have a smaller pelvis so it makes it difficult to remove the j-pouch and everything is pretty congested in that area to begin with.  I am concerned with complications that result from a j-pouch removal.  I find myself staring at peoples abdomens and wishing mine wasn't covered with scars. I try to stay positive and crack jokes and tell people that "Most people lose their butt in Vegas but I lost mine in Seattle" or "It takes guts to have the kind of surgeries I've been through". On the outside I look fine but on the inside I feel like a scared little kid.  I am certain that I am not the only person with health issues that ask them selves " WHY ME?".  When it comes to incurable diseases , you are just along for the ride.  

If I were single my dating profile would read like a used car add.   Out of warranty, the top is warn thin, has high miles, leaking fluids, needs body work, the interior is shot and wrinkled, can't see through the wind shield, hinges are rusted, the rear end is out and they don't make parts for this make, model and year anymore, it makes a lot of noises but it still runs.  I usually get a few laughs out of this so I hope it makes someone else smile.



Take Care and GOD bless

Everything will be fine with the ostomy, an ostomy is a life-saver

You need to view yourself better, instead of viewing yourself like a used car, view yourself as a resilient car that cannot be destroyed. You are strong on the battlefield and have lots of scars but nothing can take you down, view yourself that way because its true

Its frustrating being sick, and scared. Ive had plenty of "why me" moments. Jaydog is right, you don't know yet what the outcome will be. Its hard not to worry but you will come out ok either way. As for your spouse, I've watched mine do so much for me this past year and am so grateful. Hang in there and take it one day at a time.

I'm sorry you are going through all this - wow, you have been through a LOT.  It can seem like it's a never-ending nightmare, but you will come out of it.  There's some excellent advice above, especially those encouraging you to live one day at a time right now.

Briefly, like you, I was initially diagnosed with UC, but after experiencing fistulas, abscesses, and other cr*p, the dx was changed to Crohn's.  I had a seton in my first pouch-vaginal fistula for nearly 7 yrs.  My 2nd peri-anal abscess/fistula was septic; after a seton placement in that one, a pouch diversion with end ileostomy, and a yr of recovery, I finally had the pouch removed.  (I have to add that the setons were not horrible for me.)  Due mainly to fear of the surgery, I waited too long, and the pouch was finally removed when it was about 25 yrs old.  The surgery went fine, although there were a few post-surgical issues (not pouch related).   My biggest concern was being sewn closed - aka Barbie or Ken Butt - but my very experienced surgeon stitched me closed on the inside, and I really had no problems with healing there, or with anything other than minor pain there for a couple weeks.  Also, my stoma was revised when I had my pouch removed, so it's longer now and easier to care for.  If you do end up going with an end ileostomy, these are just a few things to keep in mind and ask your surgeon about. 

In the meanwhile, I can only suggest to try to stay positive (I know, so much easier said than done).  Keep hydrated best you can - I drink diluted "Liquid IV" all day long to help in this respect.  Go for walks if you feel up to it, try to gain some strength back from your ordeal.  If you can, join a support group for ostomy folks - there are some decent ones on facebook that have given me some great tips with dealing with my appliance (e.g., The Real Ostomy Support Group), and with dealing with life with an ostomy in general.

I wish you the best for you and will keep you in my thoughts.

I'm so so sorry for what you are going through. It sounds like you have been hit very hard with depression (understandably!), so first and foremost I hope you will seek treatment as it may help you get through the times ahead. I can completely relate to the shock of it all. I just got a loop ileo 5 weeks ago after a long, difficult battle with my pouch the past 2 years. I fought it for a long time and had to grieve, but did come around to accepting it and now feel so much better and healthy that I am actually glad I have it now. But, it took me a long time to get to a point mentally to be OK with it, and you are allowed to not be OK with it if that's what you need. You had thrust on you, so didn't have time to process it, nor a long period of illness that made you want relief. But, it also isn't written in stone yet. Your fistula may heal, you may get a second opinion about managing Chrohn's with a pouch, there are still a lot of options. It's hard but try to remember healthcare is a process rather than a start-finish game.

As for managing the ostomy, do you have a good stoma nurse? There are always products/ideas to get it to fit better, but you need someone good to help you. If not, have you called one of the supply companies (Coloplast, Hollister, etc.)? They have customer care specialists that you can go through your challenges with, and they will even mail you free samples of things to try. Sometimes you just need the right product and then at least the annoyance factor of leaks would be gone which might really help your perspective in dealing with everything. I had days where I cried changing my ostomy because the stupid thing would poo everywhere (like "god what have I gotten myself into!!") because i'm still learning how to manage it, but now I'm already starting to have days I forget I have an ostomy, and a month ago I never would have thought it possible. For your output, I'm sure you've tried a low residue diet/pasta etc. My stoma nurse told me to drink 1-2 G2's a day with high output, but to avoid artificial sweeteners and lots of sugar otherwise. Did you get to see a dietician in hospital to help you with diet? My ostomy put out a lot the first month but is behaving better now. Also, if they think you have Chrohns, do they think the high Ostomy output is related, like maybe there is some small bowel inflammation? Just a thought....I think there are  people on this site with ostomies, so if you start a thread with the challenges you are having, you may get some good ideas.

I hope these thoughts help you, and you take time to grieve what you've gone through, these things are traumatizing to experience and it makes perfect sense to feel the way you do. Your wife and family likely understand completely why you are not able to be attentive right now and just want you to focus on taking care of yourself. Hang in there!

Last edited by duck11

Hi Kid, How are you doing today?

I can go into long stories from a very complex and complicated medical past but the bottom line for me was simple. I did not want an end ileo.

I had my first ostomy at age 2 after 6 failed anal reconstructions. They closed it a year later and left me functionally incontinent. Many, many surgeries later things only got worse, school was a nightmare and I had no social life.

I had more failed attempts to rebuild me (2 gracillis muscle flaps) and finally, I had to give up. At 18 I faced an end ileo...but I met a medical giant named Dr Zane Cohen. He gave me a Kock pouch. An internal ileostomy made out of my own guts. The ancestor to the J pouch. It has had many (too many) ups and down, rebuilds and reconstructions but it gave me a life (I had never had one before that).

I moved to Paris, studied, became a professional business coach & professor and lived my life. I had a dozen more rebuilds plus other diseases but after 42yrs I still have my K pouch.

I married, have a family and a life.

It is not for everyone. It is a giant leap of faith to go for another kind of pouch, there are few surgeons out there who do the Kock pouch or its younger cousin, the BCIR...both are internal pouches. Both are continent. Both allow those who cannot imagine a life with an end ileo to have another option. No bags, no flange or stress. Just a button-hole and a tube and your life is yours.

It just gives you the possibility of imagining another option. Not an end but a new beginning.

SO do not despair, do not give up or give in. You are young. Fight for your life, your marriage and your future. If you need more info just PM me.

Sharon

ps. my constantly failed surgeries & rebuilds are due to my disease and not the fault of any surgeon. I have Ehler's-Danlos syndrome. I do not heal, my body does not make the 'glue'. For most normal human beings they would not go through as many redos as I have...just saying.

skn69,

You are an amazing person with an amazing story!  Thank you for sharing it with me.  I seem to turn to this site in during my low times, looking for a glimmer of hope or some information I over looked.  I am somewhat of a control freak and also a problem solver but I am not a medical professional.  Diseases and the destruction that cause are completely out of our control.  I have good days and bad days.  My biggest struggle right now is finding a pouch system that works for me and stays in place with out leaking.  changing a pouch three times in one day is too much.  The location of my stoma was good when I was young but now that I am older I carry extra weight in that area and it is also the same site of my original stoma so there is a lot of scar tissue.  I have a wound very close to the stoma on my skin that is not healing.  Sometimes it hits me and I just don't want to do this anymore but its not like I have a choice.  Its easy for me to become self absorbed and my wife has been very understanding but has grown weary of that and needs me to focus on her.  I hear stories like yours and think to myself that I need to be grateful and remember that my surgery saved my life.  I had a gift of living 28 years without many complications and thinking my UC was cured and then I found out that I didn't have UC but Crohn's disease. Only a few months ago I was living my life and enjoying it, now my bathroom is filled to the brim with medical supplies and medications and I have to get infusions and go to the doctor a lot mote than I want to.  I am holding out hope that my fistula will heal and my j-pouch can be hooked up again but I know I need to mentally prepare myself for what comes next if it doesn't.   Thank you for reaching out to encourage me and for sharing your story.

Kid,

You are allowed bad days (good ones too), you are allowed to be angry, pissed off, depressed, furious and ready to throw in the towel...what you are not allowed to do (in my opinion) is to give up on those who have stood by you.

Yell at the sky, cry in the shower (or out in the rain) but then, once you are dried off, go back to being you. You are still inside that body, you are not scars and bags and leaks...you are 100% yourself, with a little plumbing modification for the moment.

Things will evolve and change. Scars can be resected. Tummies can be tucked, fixed or liposucked out to flatness...

I got married in 2004 to a glow-worm...a hospital-phobic medical-phobic man...who swore that he hated sick people and would never come to visit me in the hospital...our 2nd date was in the hospital after emergency surgery.

3 months later he held my hand and walked me back to the O.R. in tears.

I spent our 1st year together being rebuilt and taken apart 6xs, our first wedding anniversary was spent with me 5000miles away on an operating table.

That's life.

He loves me and would not trade me (I hope!) for anyone else...but I come with my lot of problems..too bad...That is life.

I fix what I can, exercise, eat right and try to stay healthy but occasionally I cry because I am not like everyone else. It takes me 1000% more effort just to make it out the door or out of bed but I do it for him...Because he concurred his fears of everything just for me.

If the fistula heals then you are all set, if not, then you need to think or rethink your options...maybe move the stoma or have that little fat bump sucked out (I did and it made a huge difference in my life...I also had 4 scars resected to flatten out my tummy...I still look like a roadmap but with fewer off-ramps and hills!).

At the end of the day, what matters most are your loved ones...never, ever forget that part.

Sharon

ps...Sorry for the pep talk!

Sharon,

Your response was so timely.  I have not been the easiest person to live with these last four month or the many years prior I'm certain.  My wife has been by my side fro  beginning an continues to stand by me to support me anyway she can.  But it has definitely taken its toll on her.   I am coming to terms with my circumstances. I have been so self absorbed trying to figure things out that I haven't been there for her in way that I used to be.  It resinated with me when I read what you wrote. "It takes me 1000% more effort just to make it out the door or out of bed but I do it for him."  I need to do it for my wife because she misses her best friend.  I have not been a happy camper for the last four months.  You are right, happiness is a gift we gave ourselves.  We are responsible for making our own happiness not just for ourselves but for those around us especially the ones who stand by our side in our darkest hours.  Its like you said, "at the end of the day, what matters most are our loved ones".  I wish you and yours a blessed New Year.  



THE KID

Well Kid, it sounds like no matter what happens 2021 is going to be better than 2020 was for you.

Just remember that without them you are alone. They make life worth living.

I might get mad at the world but at the end of the day, it is in my hubby's arms that I sleep.

He is 100% useless medically and is terrified if I burp the wrong way but he stands by my side anyway.

(about a month ago when my liver was kicking me in the gut, he ran over to my generalist's to get a script for an x-ray. He yelled, screamed, ranted, and raged until they finally called the doc to write the script. He was abysmal! He was so terrified that I was going to die on the sofa or something...I must have looked like crap...he shows his love any way that he can...he also went back the next day with a huge box of chocolate and apologized for his attitude)

They are scared for us, desperate to see us well, will do anything for us to heal...

I cannot disappoint my loved ones...by giving them back any less.

Have a very healthy, happy and joyous 2021...

Sharon

Hope all's going well .How long does the fistula take to heal?loops are hard at the start because of all the swelling that has to go down first before you can get a good seal,I had a convex dansac bag with a huge flange and a belt and used barrier wipes and a hairdryer to get it to stick better.vitamin c is good for healing. goodluck.

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