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Well, if I was dealing with all the complications you have had, I would have scrapped the k-pouch long ago. But, with your connective tissue disease, you probably would have issues with an end ileostomy. Still, I think they would be more manageable.

I give you a lot of credit for sticking it out this long! But, whatever you decide to do, it should be what you are willing to live with.

Jan

Oh Sharon, I don't know how you've fought for as long as you have. You are certainly stronger than I ever could be. I'll share what helped me with my decision. Every time I thought of a j-pouch pro or con, as it pertained to me and my life, I wrote it down. I did this for almost a year before I decided to go ahead with j-pouch removal. The list was helpful because it told My story, what I was willing to sacrifice and what I was not. I know there are physical issues for you no matter what your decision but I think it's helpful to have your story written down in front of you. Sometimes it helps provide that "a-ha" moment.

Yeah, sometimes I think we are so used to the fight, we forget what we are fighting for. It is hard to give up fighting to save something you have sacrificed so much for. But, like Lambiepie says, it is important to put things in perspective for YOU and what YOU need the most. You don't have to prove anything to anyone, especially yourself. You don't want to have your entire life revolve around this thing, when you really have a life to live!

It is not giving up or giving in, but changing priorities, I think. We are only on this earth so long, so I like to be sure I spend it doing what enriches MY life.

On the other hand, if you cannot wrap your mind around NOT fighting for your k-pouch, that is OK too. Plus, hopefully your engineering project will buy you some time to ponder these things.

Jan

Last edited by Jan Dollar

For now, I keep thinking about how my skin reacts to tape, glue, steri strips etc...I cannot use anything on my skin...it welts up and rashes immediately...then blisters for weeks...I have little scars from every steri strip ever used on me...how am I going to be able to keep a flang on????? 

I cannot even imagine what will happen to me if I cannot. What would I do then????

Even Dr C said that in my case he would rather rebuild the k pouch on the left side than try to make me live with an ileo...he knows my body/skin/guts so well.

I am having that 'pain' again...the one where when I sit down suddenly (like on the sofa where you let yourself 'drop') there is a deep reverberating pain low down where you guys have your j pouches.

It usually means that my k pouch is down again. Or at least hanging strangely.

If so, then I can still have it pulled up...I am good with celioscopic surgery...Not so good with open surgery...(I am just be grasping at straws here)

My life (what is left of it) is divided into 2 parts...work...where I bounce around like an 18yr old for 9-12hrs/day (plus 3hrs of public transportation!!!)...I never sit, eat or take a break...I never let the pain in...I ignore it...I live in a bubble of joy & laughter...I love what I do...(how in goodness gracious sake will I be able to do that with a leaky ileo?????)

And home is where I let the pain in. Where I allow myself to feel it. Feels like a baseball bat attacked my lower back and kidneys...like over-tight guitar strings are being pulled inside of me...Can I add the pain and fear of an end ileo to all of this? I seriously do not know.

I work with roudy and randy 18-25yr old athletes (mostly guys)...they respect me (mostly) and listen to me but how will I keep their respect if I am leaking down my leg or my bag bursts? How will I survive the subway rides daily?

(fear of a burst bag and 35 smartphones taking pictures of me in that condition and posting them on the web!!!!)

Those are my fears... Will I have to quit my job? I cannot change it...I am finally on the verge of getting tenure....I cannot quit or show weakness now...or my professional life is over...and I cannot live without my job or salary. 

I am not ready to give up.

Darn it.

Sharon

 

 

 

 

Not for at least a week...I have a full schedule going on (tenure track again) so I need to find a full free day with the radiologist....he is very thorough and needs at least 5 hrs with me...

Praying for a 'good' result whatever that means...for now I am sitting with a heating pad under my butt and praying for relief!

Sharon

It sounds like getting the k-pouch reconnoitered for the billionth time is probably the best thing, eh?  I have that tape issue as well and I cannot fathom going from a jpouch to a illeo, no matter how rough it is at times.  I had to have my takedown early because of it. I just had spinal fusion surgery and the tape they used for that caused major issues and everyone was scratching their heads about it.  If you're going to fight maybe pick the one you are used to?  IDK.  I actually don't know how you chug away in spite of it all, hats off to you.  And best of luck no matter what you decide.

I'm sorry you are going through this again 

You are a little energizer bunny lady! I like Lambiepie's idea too. You probably have been mulling it around in your head for a long time already.  I quit looking at it as giving up. I am focused on improving my quality of life. It has improved with my permanent ileostomy.  But that was for me and our situations are not the same.

I have sensitive skin too. I couldn't wear some of the different appliances I tried. I do much better with some brands that others. I have to change it every other day or the skin underneath gets really bad. Usually it's best to not change as often but this is where having a good stoma nurse to guide me has helped.  The bags seem a lot stronger than  5 years ago. I love the double velcro like closure systems. The one I use works great and I have not had one leak or break. I have not even had a blow out during sleep. I don't have to wear a belt either. I wear handmade bag covers in a soft lightweight flannel or cotton so there would are a lot of safe guards in place. Should something happen then the cover and my underwear are there to contain the fluid and allow for time to get to the loo.  You are very creative and would probably come up with a good plan. I  don't think you need to worry about the 20 year old students.

It would be a good idea to get samples from as many different kinds/brands as possible. I don't know how you can arrange that in Paris but you will. Then try them out one at a time. Stick it on your abdomen and try it out to see how well your skin takes it. I can't wear some of the rings, pastes, seals and so on. Once we figured what worked best things have been better than I anticipated.  I stick the wafer on without any paste, seals or fillers. My skin was horrible at first but I  got past that.

What else is there to do?  All we can do is go forward.

Last edited by TE Marie

Sharon, you are such a strong person to be able to have this fantastic career and attitude while going through all this. Even inventing a fix for the tube situation is a step above anything I would ever have thought of. I know you have  times when it seems insurmountable, but from reading you posts, I think you will know what to do. The answers are inside you. And I have the same tape  issues as you,  so check out some of the products a previous poster recommended. Sounds like improvements have been made since we've used the old products. Lots of continued strength to you and well  wishes!

Sharon - I wish you did not have to go through all this - over and over.  I did not know you were still working full time.  For me, stopping working full time provided tremendous relief.  (Not saying this would work for you).  25 years of teaching and counseling was enough - I wanted to make it to 30 or more years, and I didn't.  If you are still bouncing around at work, this says you are really stronger than you think you are.  But, at some point, I wonder if backing off the hard work schedule would help - the mind/body connection is real - as I know you now.  I am cheering for you whatever you decide to do.  You have tons of supporters on this site - I wish we could do more for you - just hug you and let you have a good cry.  Here's a hug through cyberspace....so, so sorry for all your suffering, you precious lady.

Thanks Angie,

Yes, I am still working double-time-and-a-half.

Here teaching is 18hrs/Week full time (plus prep time and correction time)...I do that in 3 days...I have a work load of 300 students...that is a lot of  prep & correct...I teach in 3-4 schools/week...that means running around to different locations arond the city carrying bags, books (fine, I have scanned or downloaded most of the stuff onto a data stick) but I carry a ton...hubby now does the heavy lifting most days and picks me up at night...

I couldn't live without working...forget the financial aspect (which is important)...I need my brain busy to not think about my body...being sick is bad enough but being sick and shut in is worse...this gives me a kick in the butt come rain or shine to get up (6:30am), get dressed and get out...and I spend my days with 18yr olds!

Fun.

I do not feel pain when working...I do not feel depressed or down or scared. I feel joy. Unless someone is planning to tie me down on my sofa they will not be able to stop me from going to work (last year hubby picked me up from class in the morning, drove me to the hospital where I had surgery 3hrs later...did not want to miss my morning class!)

G-d, gave me a gift...To teach. He also took away something from me...so it balances out in the end. I would be an ingrate to not use it.

Sharon

ps...I think that chinese food is officially off of my list of things to eat! OUCH

 

Sharon - what you explained makes perfect sense to me.  Your work brings you such joy and yes, it's a wonderful thing to get up, get over yourself, and help others.  Are you a professor?  Is it ok to ask what you teach?  Just curious.  I taught high school and then got a masters and was a counselor.  I did it 25 years...it was not bringing me joy anymore. I then started a knitting business - did that for 2 years - then got tired of that.  I do wish I wanted to work and got joy from it....and I did get joy from it for a long time..and then, it was just gone. Who knows why and we are all different.  I admire people like you so much.  I have so many friends who are in high powered careers and sometimes I feel like a failure that I gave in too soon - but that is something I have come to be able to accept and say, "you did all you could" in the working world.  Who knows - something new may come up or not...I am lucky in that I've always loved being home and love to do all kinds of creative things and I LOVE quiet.  No TV, no music, and a paint brush...can do that for hours.  I am again amazed by all your tenacity and strength and yes, a routine is really good for your mental health - that is what I miss the most about working - the routine...I have to force myself to do my exercise, my socializing, my volunteer things - I would go live in a cabin and never come out if I did not push myself.  Some is ongoing depression and PTSD - and I have meds and have done all the therapy I can do on these - it really just becomes a matter of getting up and getting out and I do almost always feel better for it.  I am interested in your career and if you ever feel up to it, would truly like to hear about it.  I bet you do so much good for so many people.

Angie

I know the feeling of staying home and hiding here...On my days off I hate leaving the house (other than to go to the market or the local shops...on foot). I don't want to answer the phone, I don't want to talk to anyone and lately due to tendonitis I don't even want to go for my walk.

I read, write (I write a lot...have a blog and a website), cook, clean & sew (a real Suzy homemaker)...I hide. No problem with being a shut-in... (this disease does this to you)

I do not know if it is depression or coping. I am not sad and do not cry when at home (not often)...I just like the quiet and naps! Exhaustion is also a nasty side-effect walking and going out are the only remedies for exhaustion that I know of...sleep only makes me more tired.

As for my job...I am a University Professor...I teach economy, business and finance...I do special programs (the finacial crisis in the U.S, Rebranding, intro to the stock market...)

I love creating new programs (do it at 2am when I cannot sleep).

I feel useful and healthy when I teach...I forget that I am sick...forget to eat and drink too (too scared to use the bathroom), almost never sit (too much pain) and pretend for 12 strait hours that I am normal...that is the lie...I am not normal...but they do not have to know that...(hiding again...but how do you do 'the great reveal' to 35 kids with the maturity level of a 7yr old?). 

I also have a G-d complex...I think that I can do anything...that I can help them make a change in their lives...that I can do something important.

I also find about 1 student/year with UC or colitis who needs help and I can be useful.

TE, 

As for the ileo...I am not mentally prepared yet...still fighting for now..one of these days I may stop but not yet...sometimes I feel that the only thing that keeps me going is the fight. But thanks for suggesting it...nice to know that you are doing so well.

Sharon

Thanks for sharing more about yourself with me.  I would love to be in your class now!  All the economics in college was really difficult for me to understand - it still is - I don't know why I am so dumb that I struggle so much with this subject matter.  I have one brother in law in finance.  I thought you might be a professor - my Dad is retired from Duke (he went into administration), cousin at Yale - neuroscience...the rest are teachers, engineers, drs., lawyers.  There is one part of the family that went thru a terrible tragedy and two of those cousins never even made it to college - which has been so sad to watch play out in the subsequent generations.   

If you want to, PM me your website - I am fascinated by economics and would love to see what you have to say about the financial crisis, global economy, etc. etc. - I'd love to follow your website. It is GREAT you are educating young people - I think you are in France?  UK?  In the USA, we are generally so financially illiterate it is beyond ridiculous. 

I get the God complex - I had it big time in my working years - save the kids, etc. - and I look back and that was a good thing.  I did make a difference in many lives for many years.  I wish I could have continued - it made my life very meaningful - but as the years went on, it got entirely too stressful - school counseling is not what people out there think it is.  That's another story....

I really do understand you are not ready to give up the K pouch - and it sounds like you really know yourself and what you want.  You gathered others' opinions and then realized...for now, "I am not ready."  So you go out and "act normal" for 10 or more hours a day.  I get that as I did it for years...I just admire that you keep at it....I wanted to be tougher like you!

I am not tough...no tougher or stronger or pain resistant than anyone else. I have just had more practice.

When you are sick at a very young age you learn that if you cry and complain then no one will love you...no one wants to see a sick kid cry and moan...they want to see you sitting there with all of the tubes sticking out and a smile on your face reassuring them that it will be all right. (my experience)

It is ok to be sad and in pain if you have a sudden illness or a short one but when you spend the better part of your childhood sick in hospital you learn quickly to hide the pain and smile.

At 10, heading down to surgery I started to cry...dad slapped me and told me to never let them see my tears. He couldn't understand them...told me that I should be 'used to it by now' ...was he wrong or right? Don't know...But I learned.

So now I show no weakness, illness or pain (except here where I let it all out).

And no, you are not dumb...we all have different types of intelligence...thankfully they vary according to each person.

Makes the world a more colourful place (and gives me a constant flow of students!)

Sharon 

We all need to vent.  It's human nature when seeing someone in pain we want to help (cure) them. What we need is for someone to listen and give us a big hug. We need empathy, not sympathy. We've all had friends and/or relatives that have told us all we need to change to a certain diet or need to exercise and so in. It's frustrating.  After years of bad health and surgeries my sister-in-law asked how I was doing in an e-mail. I told her I was going back to the Mayo Clinic the following week.  She said that was good they would fix me, not those exact words but that was the meaning. Hello, I have been going there for 4 years and am under the care of 3 departments.  If I were fixable it would have been done by now.  I don't give her that piece of my mind as she is trying to be supportive. I remind myself that I should have known better than to try to explain it to her again.

I am sorry for bringing up an ileostomy. It probably made you feel like I do when people try to fix me! The very thing that drives me nuts! Sorry! My sister-in-law means well and so did I. You have been dealing with all of this over twice as long as I have. You know the options. You don't need to hear them again.

It's scary but you will be the one comforting your husband and everyone else. You need understanding from us. I sort of  know how you feel. I worked until they had to practically drag me away from my desk. You are brave and will figure out what you need to do. You are one of the strongest people I know.

There is no giving up. There is choosing from the options you have, even if there are no good options.  You will not give up. It may feel like you are giving up or caving in when all you will be doind is making difficult decisions. 

Thank God for this site and you wonderful people - just the empathy - the total understanding - has helped me so much.  Chronic illness/pain is just not something that people who have not experienced it can understand.  I have come to accept that and not expect anything from anyone...I keep my expectations very low regarding people and rarely even talk about it - what is there to say? - it's always an ongoing battle and there have been good times and bad times.  Who promised us perfect health?  No one.  I think the difference for people who started out younger is it can wear you down as the years go on....vs. people who begin falling apart slowly after 50 or whatever. That's why we need each other.  I am so thankful to you all - why I did not get on this sooner - who knows.  So glad I found you guys. I hear great support for Sharon from you, Te Marie - she knows you care.  She knows you get it.  It's ok if you screw up and say the wrong thing on here - I think people can tell if you are a person who cares and just wants to be of help.  Sharon - keep us posted as you need to and I hope you get better and keep on keeping on.  Everyone on this thread - thank you.

Ally cat - thanks for saying that.  I am beat myself up as to how much harder this got after a certain age   - and now it just seems so silly and so obvious - why wouldn't it get harder now?  Everything else does health wise for most people - why wouldn't our pouch issues?  Sharon is amazing and so are you - you all truly help me.  as does Jan and all the others I can't remember who reply.  I've had a bad week of nausea - I could not figure out why - and I never really did - it subsided yesterday - for no apparent reason.  As the week went on and it got worse - I thought - well - this is it - something else is really , really wrong - and then I do the "well - if it is - so what - we all die sometime" - sort of to prepare myself...and now it's not perfect, but much better.  This is my life up and down day in and day out.  I know it is many of your lives too.  It truly helps to hear how everyone copes and to help each other and cheer each other on.  Jan - the peppermint oil sounds interesting - I need to get more organized and write down all these ideas you all give.  I adore you people.

Angie, you have desribed my life as well. Up and down, we all die sometime phase, not prefect better. I had this awful twitching in my pouch for days. It keeped waking me up, could not sleep, was a walking zombie and convinced my pouch was going north again. It was so annoying and uncomfortable, yet I woke up today, and nothing. Everything was good. 

Last night we had friends over and while talking my girlfriend asked me if we couldn't have a bowel transplant or grow a new intestine with stem cells...I laughed...yup, they are doing all sorts of interesting things for all sorts of diseases...But our particular cases do not interest a lot of doctors...they still use the cut-and-chuck method for most intestinal problems.

When was the last real (r)evolution in our disease treatment? 

K and j pouches...Since then not much progress...Still can't treat pouchitis effectively (unless you wish to give up eating 75% of your diet) and k pouches seem like Edsles...no progress at all in 35yrs.

I must admit that this getting older business is, well, getting old.

It all hurts...Tendonitis (achiles tendon), bursitis (elbow), sacroilitis and now my neck since x-mas as well...look like a bonsai tree. Not sure what to crack, where to put the heat pack or the ice...hubby laughs.

My surgeons are all semi-retired and giving up...who will replace them (they are getting old too)...

So, for now...I will eat my chocolate, slurp my ice cream (am alergic to wine or I would drink it!) and try to enjoy what I can in life while I still have one.

Not going to give up the fight just yet...but darn, there are days when I wish that the pain would just stop!

Sharon

I like the one "If I'd known I was going to live so long I would have taken better care of myself". I think it's in a Country music song.

My warranty ended at age 40. That was my first root canal and first abdominal surgery, a hysterectomy, and that lead to the discovery that I had UC. I'd been having flares for years. My bad female parts had been taking the blame for mhy UC too. 

I am glad that we have this wonderful support group.  As Sharon's pointed out, there's not a lot of advancements for our diseases.  Drug companies aren't interested in researching our diseases as there are just something like 1.4 million Crohns and Colitis sufferers in the U.S.  For example millions have high cholesterol to sell medications to. Then there is the below the waist nature of our diseases as well. When medications are developed for other autoimmune diseases, like Remicaide and Humira, then we get those benefits through the back door.

The saying that I don't like anymore is "God doesn't put more on us than we can handle." 

P.S.

I am in an IBD study by Pfizer. They gave me a $20 Amazon gift card for letting them have my DNA, genome.  Every time I update a questionnaire they send me $5 more. I probably would have let them have my genome free. I'm also in a migraine headache study and gave my neurologist free access to my DNA for that.  I am sure that I have benefited from others that have participated in past drug trials.  

I am pretty darned sure that they throw more money at and do more reasearch into sex toys than UC and Crohns! Maybe we should propose a tax on one to finance the other??? (now that would be funny!)

How is it that the " 2 downstairs neighbours" get such different publicity? 

Not to start a thread on it but I am so sick of people telling me that my disease and surgery is so shocking and yet they advertise on prime-time things that used to be sold behind the black curtain in scuzzy shops!

We tatoo and pierce body parts that were never meant to be pierced and have florecent purple toys that are anatomically impossible and yet no one is talking about our disease in an open way..We still need to hide it.

I have caught students and secretaries discussing the latest gel or gadget but if I dared to mention gel in the context of my tube or pouch I would hear a general 'ouuuhhh...That is disgusting' comment.

We seem to be suffering from really bad marketing and advertising.

Sorry, just a morning rant...

Sharon

I hear you, ladies.  We live in another country....than the young.  There was a book about this - with something like that in the title - sorry - I can't remember the name or author - but well researched.  CRS.

We are living a different experience now than the young or the mainstream culture...etc. etc. - this has always been true as people age - it just makes it a bit more of a sting to us as we've dealt with physical illness for so long and it wears you out. 

I know it helps me to hear from you and hear you rant Sharon - or whoever - it's not complaining - it's venting anger and frustration to people on this thread who get it.  I know we don't all spend our entire day ranting ....but it helps to get it out - and feel heard....which is a need/desire of a human being - to be heard and understood.  I thank you all for sharing. It makes a huge difference to me to feel less alone. 

I now understand more than ever the importance of a peer group - we always associate that with adolescents...very, very important to the aging - at least for me it is. Thanks to you all - truly, I am so grateful you are here.

love the idea of a tax on sex toys to finance uc and crohns research!!

and yup, nobody wants to hear about my fabulous new poop hole right next to my bellybutton--not that i bring it up for discussion.

we can lend our expertise on inserting the catheter when the valve doesn't want it inserted (i.e. freeze the catheter).  here's a suggestion to the toy/sex players--if it gets limp, put it in the freezer.  hey guys--it's just a stupid woman's joke.  

It is nice to be able to vent with you all. It really hit me on my 60th in December. No one is catering to us baby boomers anymore. You are right Angie.

I don't have much contact with the current younger generation like you do Sharon. We didn't talk about that stuff when I was that age! Hell people were really daring when moving in with each other before marriage. I was married at 19 as I wouldn't move in with him before we were married.  Young ladies having children out of wedlock were shamed. If PG in H.S. they had to quit attending classes when they began showing. 

I'm not saying we were all prudes. We were more sneaky. I'm not saying everything should go back to then. Just pointing out how different things were. We were the first generation that had good access to the "pill" and HIV & AIDS wasn't a worry. 

Interesting points - and goes to show you that while so much stays "the same" - so much changes.  I do remember those days before AIDS. I am 53.  I wanted to move in with my first husband before we married - my parents said, "absolutely not" - and that was that - I was 22.  Married him at 23 - that marriage lasted 7 years - he was a philandering doctor.  Remarried at age 34 to a wonderful man - a school teacher.  Very different lifestyle, but I married someone who I thought would be loyal and kind and good - and he has been.  

Now we know how our parents and their parents and so on felt as we age - it is inevitable.  I am not around the kids as I was all those years in schools - but husband still is and he really likes them - still!  Like Sharon does!  He teaches seniors physics - not a professor like Sharon - but a high school teacher.

Anyway, I made it to 25 years in teaching and school counseling with my pouch and then that was it for me.  I don't regret quitting - wish I could have found part time work, but at that time nothing was available - the longer I was out of that profession, the less I wanted to go back.  So, that's a bit of my ever so interesting story.

I can't say enough how much "taking" to you, Sharon, and others on this thread has boosted my mood - again, mainly as I am not so alone in dealing pouch, k pouch, and never ending issues.  Thank you all so so much.

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