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Hi guys,
I have been missing in action for a while due to another death in the family...I got a 2am call that had me in a plane across the Atlantic 6 hrs later (never moved so fast in my life)...
The death of my best friend's mom was not unexpected but there was no timeline in how much longer she could live...she died, sitting up in her chair (after bingo!) with no tubes or artificial anything attached to her...a lovely way to go...
I had asked her if she would allow me to accomplish my own mourning period for my mother at the same time as she did for hers (we sort of shared mothers growing up and I was unable to be there for my own mother's death, funeral etc) and she said arm in arm, we stood for the eurolgy, burrial and the 7 days of mourning and traditional prayers...locked into a ritual of mourning, healing and closure that is not just necessary but salutary...we were surrounded by family, friends and loved ones who really were there for us the whole time...I was amazed and oh, so grateful.
I have been living in a black abyss since my own mom died 8 months ago and unable to move forward so this rite of passage, if you will, was essential for both of us...we cried for both of our moms who we loved beyond measure or understanding, reliving the good and bad and deciding to throw out the bad and only conserve the best of memories...we need to be able to live the rest of our lives facing forwards, at peace.
I burried a part of my mom beside hers, a fittting gesture being that all of our lives had been so intimately intwined over the years and hope that some of the pain, both physical and emotional that I have suffered this last year, will evaporate.
I feel 'lighter' and freer for the first time in ages and hope to be able to move on...closure is such an important part of our lives and should never be neglected...not even post op, post collectomy or any other radical medical change in our lives.
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While it saddens me to learn there was another tragedy in your life, adding new turmoil, I'm happy to learn that it allowed you to reconnect with a close friend, and complete the mourning of the loss of your mother. I imagine that your husband's brush with death brought home to you that life is short indeed.

Sounds like you are ready to take on the future with renewed hope and happiness.

Each day is truly a gift, isn't it?

Jan Smiler
Yes, things are/were in a huge turmoil but are getting better...hubby still scares the pants off of me every time that he cannot breath or has arrethmias etc but I am dealing with is up to me to decide how I deal with things and need to learn to control those negative emotions (no easy feat)...saying goodbye to my mom may yet help me to master the rest of my life's journey...At least it will procure a little peace in my soul...
I got some good news while little cousin (16yrs old) had his last chemo treatment and his most recent scan was clean!
So nice to have some happy news for a change.
Oh honey,

I'm so sorry you had to endure all this, all my love and deepest sympathies are with you always, but I'm really glad you've turned a corner, just take all the time you need, it will get better in time. I always take comfort in knowing that while we may loose our loved ones in the physical world, they will always be with us. You may not be able to see them, but trust me, they're there, guiding you. And know that I love you, and will always be there for you,

Eric xoxo
Thanks guys,
My best friend is the one whose couch I lived on for 8 months during my 5 surgeries, her hubby handed me his gold card and told me not to tell him what they cost...she paid for my surgeon to fly over here and operate...we have known eachother for 41yrs, introduced by her mom...she held my hand & head during more surgeries than I can count, gave me love, hope and restored my dreams when all was lost...flew over and tag-teamed with my Canadian surgeon when he did the emergency surgery here...I would not be alive without her...
She is a kind and generous soul...her mom was a challenge, like mine, and we suffered equally with them but she honoured her and cried her soul out that day...I honoured her for giving life to my best friend and my mom for mine.
I have seen her scream at my surgeon (they are both barely 5 feet tall) and nag him about my suture lines threaten him if her dared to remove my pouch...I was blessed the day she was born.
I have cried a lot this last week...this last year really. It is time to start a new year and a new, healthier life...hopefully without all the pain...
Thank you guys, for being there for me
Hi TE,
He is in full PTSD mode and even more so since I was obliged to fly home for 10 days...panic, fear of sleeping alone in the house, listening to ever ache, pain, palpitation and cramp...he is lost between what to do and not do (yelled at me this morning for Not letting him vacum the house!)...I am very regretful that I did not insist on him going to the cardiac rehab center...A place where post cardiac patients go for 6hrs/day 5days/week for the 1st 2-4weeks post heart attack...they see dieticians, nutritionists, phisiotherapists, massage therapists, psycologists, sports coachs, learn how to eat, sleep, drink (fluids), exercise etc and what their limits are, what to look out for and beware of etc...
He preferred to skip that step and go strait to the 'I am fine and I can take care of myself' he is in a panic induced nightmare. (so am I)
I will see the Cardio surgeon next week with him and be able (hopefully) to help him to dial down the drugs and thus the stress...until then, I am on a very, very short leash. drats
ps...I am at least better
Planning to run away and hide somewhere this forwarding address! I need a minor hybernation and escape from pain (both physical and mental)...not sure if I will be able to do it though...I need to see the 3 men in my life surgeon, my rhumey and my real estate agent!
We have to decide if I will have the laporoscopic surgery to reattach my pouch this summer (before the poor man retires forever!) or if not, rhumy has to give me something for this sacroileal pain and maybe a longterm plan for physio/treatment and finally a I need to find a home that is better adapted to my and hubby's health issues and conditions...too far away from everything and need a simpler lifestyle...then, If all goes well I can run away...(and see my poor dad...)
Then maybe it is time to look into other options? If your pouch, 10 months out, is unmanageable then you need to be going back to see your surgeon and find out why...because that is Not normal...and dangerous for you (dehydration, denutrition, exhaustion...) but none or that is Jan's fault...just your pouch's. Talk to your doctors and find a solution to the pouch's problems...they could be as simple as food alergies or as complicated as pouch failure but solutions exisit whether you like them or not you will have to have this resolved.
As much as the thought of moving gives me hives, the thought of staying here gives me nightmares. My home is not adapted to my condition (too far from everything, a 1 mile walk uphill to the subway or a 3 mile hike into town (strait uphill)...I cannot keep doing this or it will kill me now that I am back to work...carrying books and papers for school...too much weight to I am off to find a smaller place with a better transportation grid and less to clean...
She was speaking for herself. Did you see her speaking for anyone other than herself? Why are you directing anger toward someone who had nothing to do with your current situation? If you don't like your j-pouch then you should consider a permanent end ileostomy. Have you tried things to help lessen the amount of bathroom trips? Do you take medication to help? Have you altered your eating and drinking preferences? Have you had a doctor look for reasons for the excess bathroom trips? Perhaps you could let us know what you've tried and people here can give you other things to try.

You have probably been told that it can take a year or more for things to settle down and you haven't gotten to that one-year mark yet. But really, if you're as miserable as you sound, either have a diverting ostomy or a permanent one.

kathy Big Grin
Full k pouch surgery is as yet impossible through laporoscopy but certain procedure that touch the k pouch are possible if they are not require to go inside of it or touch the valve...I have had 3 hernia fixes around the pouch and valve done through laporoscopy and during my galbaladder surgery my French surgeon noticed that my pouch was 'down', fallen off of the wall (I could have told him that myself, and did a couple of times) with instructions from Dr C, he will one day (of my choosing) go back in through laporoscopy and tack it back need to open up the abdomen for that...
hope that this helps
ps...The symptoms of a k pouch being down (off of the wall) are that the valve is being pulled or yanked by the pouch so it can open up the valve artifically and cause both stool and gas leaks, twist the neck of the pouch/valve and make intubation difficult or impossible, cause obstructions, pain, cramps and a whole lot of other problems...once the pouch is put back on the wall, the symptoms cease.
kathy,i did not direct any anger towards anyone if that is your perception i cannot change that.I have gone to see Dr Bo Shen at the Cleveland Clinic who diagnosed me has having the worst spastic pouch he as ever seen and also said i might possible have dysfunctional pancreas and recommended mri of pancreas which i had done through my local go results normal pancreas.I have been on every single anti-spasmodic including tincture of opium my surgeon refuses surgery for a permanent ileostomy which i pleaded to have done was told way to early.I think you would be upset too pn
Stupid question time Paul,
Have you tried any type of acupuncture for the spasms? Biofeedback? Any alternative meds?
Not being synical here but sometimes when we least expect it we can find an unlikely solution...that the 'real' doctors can't...I would even aim for herbal remedies etc knowing that there are some very good natural antispasmodics...I would also check out elimination diets and food alergies to make sure that there is not something in your diet that is eating you...
These are all the different things that I have tried along the way when things have gone wrong with me and my pouch...
I understand well the anger and frustration that goes with surgical and medical failures (especially when it seems like everyone else's surgery is a success)...I have lived through many, been confronted by way too many uncaring doctors, supercillious surgeons and careless medical staff that treated me like the problem and not the victim...but, and here is the big one...When you find the right doctor who is willing to listen, be a patner in your healing process and makes you feel listened to and understood...then the anger starts to fade away and the healing can start...hang in there as well as you can...try fasting for 24-48 hrs if you can to give your pouch a rest and your bowels too...and then very slowly bring food back into your diet...and keep a food diary after that so that you know which elements make you react the most...
Hope that you find medical solutions and fast....
Paul, I think it is fairly obvious that your first comments in this thread directed anger toward me. If that was not your intent, then naming me and quoting me, followed by a rant is probably not best. It sort of steered this thread from Sharon's issues to yours. Seems like picking a fight, intentional or not. Plus, when you write in ALL CAPS it seems like yelling.

I let it slide before because I know you are not doing well. I would have sent you a PM about it, but you have blocked me from sending messages. So, bottom line, let's not make it personal, please.

Jan Smiler
Paul, if your current surgeon refuses to perform reversal surgery then find another surgeon. You can opt for an end ileostomy withOUT (sorry, I meant without, not 'with') pouch removal to see if that works for you. Several people here have gone to permanent end ileostomies without pouch removal and they're doing just fine. I believe that almost any qualified surgeon can perform ostomy surgery. It's the pouch removal that's more difficult to deal with and requires much more skill.

kathy Big Grin
Last edited by kathy smith
It's not unheard of for surgeons to be reluctant to revert to ileostomy within the first year of j-pouch surgery. Jill had a tough time finding a surgeon who would believe her that her pouch was nothing but trouble.

On the other hand, a number of people had begged for ileostomy early on, but a year or so post op things turned around.

Jan Smiler
Paul, Is that the same thing as IPS? My Mayo GI diagnosed me with IPS and also IBS when I had my colon. One medication instantly made me sick so I'm back to Dicyclomine 20MG 4 times a day and also Norco 10/325 up to 4 times a day, for pain but it also slows things down, and up to 8 Loperamide (anti-diarrheal) generic Imodium. I have the prescription for Cholestyramine Oral Suspension but have not tried it. The reason I didn't try it was because it binds food and medications alike. I take medications for other health problems and they were afraid it would bind them and I wouldn't get the benefit from them.

Like I said, I don't know if it's the same thing but I've never had a nice 4-8 times a day. I've never had to go as many times as you do, some where in-between. The GI that did my scope at Mayo said I should only need to go 4 times a day as my pouch was well constructed and was a good size.
jan, sorry you feel that way and i apologize to you anyway.I thank you for your advice,i had 3 surgeries in 2012,and i believe my surgeon is worried about adhesions and possible scar tissue.To Te Marie,hope Dr shen believes spastic pouch comes from a problem with serotonin coming from the brain to the immune system,i hope i interpreted it right.The pouch itself is mechanical fine it just does not function as planned.To any and all I offended I apologize,I hope the information I gave on spastic pouch will help,it is a relatively new diagnosis,some people have it worse than others according to Dr Shen.
Dr. Shen described irritable pouch syndrome (IPS) as early as 2002, and has done most of the studies to help define and treat it. More recently, he has discovered serotonin secreting cells are increased in pouches with IPS, which might explain why antidepressants often are useful.

It is true that with IPS, you can have a perfectly normal pouch, without pouchitis, cuffitis, or bacterial overgrowth, but still have pouchitis symptoms due to IPS. Just like IBS, it is a functional problem where there is a heightened awareness of gut sensations. Basically, those without IBS or IPS have the same pressures, rumblings, cramping, etc., but just are not sensitive to the sensations.

IPS sounds like a terrible problem. I know they are doing a lot of research on probiotics for treatment of IBS. I'd think they'd probably be useful for IPS too. My husband has IBS along with UC and has seen improvement since he started Align probiotic.

Jan Smiler
I also take antidepressants, VSL#3DS and s. boulardii probiotics. The antidepressants directly affect the serotonin. Did I mention generic Imodium depending on what I eat?

I don't know if they have you taking any or some of the above or what I talked about before or not Paul. It seems like a lot but I don't go to the rest room much more than I did before the surgeries. When I found out my pouch was built and working well I was relieved. Now I deal with IPS, chronic cuffitis and hopefully no more c.diff infections.

Take care and please try any or all of that I do to combat my IPS. I had take down 2 years 4 months ago and have been working on all of this a lot longer than you have. It would be great if anything I've learned could speed up your learning curve and ease your recovery.

My boss died on Sunday. He was 69 years old, my mentor, a really fantastic attorney who taught me a lot. He had late stage lung cancer. I saw him Friday (at the ICU) and knew it would be a matter of days. He was conscious and sedated, but gasping for air in repeated short breaths. He had an oxygen tube in his nose intubating the maximum level of oxygen. Also was getting morphine to suppress respiratory effort and Ativan to keep him calm, but I couldn't tell if he was totally comfortable or not. He recognized me, clearly, and tried to speak, but the words couldn't come out. I don't think he had the energy left to expel enough air to talk. As I was leaving he grabbed my hand with both hands and shook my hand. I interpreted it as a goodbye. Maybe a thanks as well. I will never know.

Now I am in Florida for Thanksgiving week, visiting my 84 year old mother who also has lung cancer but is treating it actively at this time. I am wondering if this is the last Thanksgiving I will spend with her, and how my father will hold up during this. The end for my boss wasn’t pretty and I am hoping my mother doesn’t have the same ending. I have been thinking a lot lately of this death and dying stuff. It’s tough. How do you all get through it?

I am so sorry CT, I do understand how hard it is to lose a mentor who helped to shape your life and your career...they are not just bosses or employers but friends and family. 

It seems lung problems are going around because my oldest brother in law is in ICU with pneumonia and other lung infections...he is 93 and it does not look great...time is passing and none of us is getting any younger...and those that we love are unfortunately leaving us, in droves...

Although I cannot imagine a world without some of the people that I love the most, cherish and who have shaped me and my world I can understand that they are tired now, have given us all of the tools that I need to continue forward in life and that I need to give them permission to go, in peace. 

I find comfort in 'order'. People leaving in the order in which they had arrived on this warm beds and surrounded by those who love them. 

Give all the love that you have to give and never left anything unsaid or un-done...

And then thank God that you had them in your life as long as you did.

It may hurt today but in the long run, it will give comfort and a measure of peace.

I am so sorry for your loss.



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