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How did it go with the doctor? What did he say about the seroma?

How is Jeff doing today and is he going through DDTs? 

It is pretty rough to have to come off of narcotics while going through post op.

Find out if there are any homopathic remedies out there that can help him get over the lumps and humps.

When coming off of that stuff he is going to go through sleeplessness, hotflashes, sweats, irritability, joint pain and a ton of other symptoms...

Plant based remedies can really help...I've added a link with the list of stuff that he can use. Hope it helps.



Hi Sharon.  Hope you are doing well.  Busy day around here.  Getting ready for Easter, but cooking up a storm.  Jeff's doctors apt with our primary went well. Meh has been having a little bit of withdrawl because he is not taking as much of the drugs because he hasn't needed them.  But she gave him a patch with anti-anixity medication, and a few other things.  No DT's, must likely won't have them because of the anixity medication she put him on.  I'll check out the plant based suggestions you gave me, thank you.  Next week we go back to the surgeon.  The only issue we have right now is the hole in his incession that is oozing yucky stuff.  I forget what it's called.  It doesn't hurt, but it is annoying.  Oh, looks like we are going out to Cleveland in June.  I spoke to Dr. Dietz's office today and he wants to do exploratory surgery and try and look at the pouch.  They felt the reports I sent them were not enough information and he wants to look for himself.  Second opinion stuff I guess.  I can't believe what the airfare is!  I can go to Phoenix For less!  It's over $400 per person.  So I think we are going to drive ;(.  I'm so lazy!  I dont want the mileage on my car. But the train is more expensive than to fly!  So I guess it's an 8 hour drive.  I have so little time too.  I have a small dog sitting business and I am totally booked from June 18 to September 30.  The entire summer.  Some of my clients booked me a year ago, so it's not so easy to rearrange anyone.  But, I'll figure it out.  I just hope we don't have to be out there too long.  And hopefully, the fistulia will have begun to close and the micro tear will be healing.  That would be such good news.  Ok, Im falling asleep as I'm doing this, so I'll catch up with you tomorow.  Be well, 


Just did my 3 days of obligatory cooking (loads of Easter lamb) with salads, sides and all sorts of desserts...yum.

I was so exhauted that I blew up on hubby on Sat...just couldn't stand and cook a minute longer.

My pouch is in a slow period. I don't know if it is/was the all of the probiotics that I took for 6 months but it is practically at a full stop.

I used to empty from 8-12xs/day or more (before and after every meal + 2xs in the morning before leaving for work & at night before bed) turn around time for digestion was less than 1/2hr for fruit in the I am lucky if it comes through 12hrs later. 

I am 90% off of carbs so it doesn't make sense except that the probiotics have put pay to whatever was irritating my system. 

Not sure if I had low grade pouchitis or just some bacterial overload but I miss my fast digestion somewhat. 

Now I don't even feel my pouch (litterally) when it fills. No gas and bloating, no 'I am full, Please empty me' I am litteraly forgetting to empty!!!! That has never happened to me before while I was on solid foods! Not as if I have never taken probiotics before.


Have a happy Easter all...Don't eat too much


Sharon, I did the same thing!  Cook, cook, cook.  Thursday I made potato pancakes, Friday I made piergi, Sat I made dessert.  Ham was cooked today.  I'm sick of looking at food!  Thankfully the pierogi is gone!  That is my most favorite food in the whole world. If someone asked me what I wante for my last meal, that would be it, but I'd have to make them. Won't eat them if anyone else makes them!  Happy you are feeling somewhat better.  Jeff is doing okay too.  Nervous about going to Cleveland in June.  I'm not thinking about it.  Can't wait to get out of here.  So looking forward to Florida next week.  


Hope me you had a wonderful,Easter Celebration!



What do you stuff them with???? I used to stuff mine with sautéed onions and potatoes...yum! (definetly not k pouch friendly!) But I made 'Banatage' a local specialty made with cooked potatoes, either canned tuna or sautéed ground meat, onions, fresh parsley, cilatro, eggs...very j pouch friendly.

You mix them all together with spices, form elongated meatballs then dip them in egg and breadcrumbs and fry them up...

Eaten with a green salad my pouch is happy.

Avoid too much chocolate this weekend...How does Jeff do with chocolate? Some say that dark chocolate contains huge quantites of magnesium and thus has a calming effect on the nerves...hmmm, not a bad idea???

Will take a well deserved nap. 

See you in Fla in June or July?



I stuff mine with potato and cheese.  Then boil them and then fry them in butter and onions and cracker meal.  Not belly friendly, or weight friendly, but I love them.  I can't believe how much Jeffrey ate!  since he is back on the ostomy, he has been eating quite a bit.  As far as choclate, I don't keep it in the house.  I am not a bit choclate person and Jeffrey will eat until it's gone.  When he was 300 pounds, he was really a compulsive eater and the tendency is still there. So I try to keep all junk food out of the house.  Now though he is finding that some of the junk in the quantities he eats is not agreeing with him.


are you coming to Florida in June?  I will be back in NJ by then.  I'll be home by the end of May because my Oisin is coming in from AZ and I haven't seen her since November. She is my best friend and of course favorite cousin.  Is id like to see her while she is back east.  If you ever come to NYC, I'll meet you in town!




I really understand the compulsive eating...If I have something in the house I usually eat it until it is gone (especially ice cream, chocolate, nuts...) or until I am folded in 2 in pain. 

Cramps don't stop me. 

So I buy less and less and try not to be tempted (a losing battle). 

My pouch hates fat. On the outside of it...if I gain too much weight I put it on on the belly and that is very bad for me and my stoma so I am forced to be careful.

When working I stick to yoghurt, apple sauce, some nuts, raisin, bits of cheese and a banana or peeled apple. 

When I am very good I only eat salads or soup at night. No perogis, no banatage or fried foods. I am being very bad right now!

I summer in Fla and try to get my health back but will not exclude a trip to N.Y. one of these years.  Who knows, maybe we will organize a poucher's jamboree!

Enjoy the end of the holiday


skn69 posted:

This is hard for me to admit but I am still suffering from some sort of PTSD.

Hubby says that I am obsessed with medical programs (Grey's Anatomy, Dr House, all medical documentaries...) and that I only feel happy or comfortable or at ease in a medical environment. 

He isn't wrong. 

My dad watched WWll documentaries his whole life to the point of obsession...When I asked him why he said that he was 'looking for himself'. 

I don't think that he was actually looking to see himself as a kid in a concentration camp but looking for his childhood, something familiar...the life that he was living did not resemble what he understood as a kid.

That is how I feel. My life does not jibe with my childhood. I grew up in hospitals. That is where I 

My mom was a nurse. I helped her study for her exams when she had to have her diplomas re-validated. I read Grey's Anatomy and the Merric manuel from end to end. That is what I understand. Not the hobbit. 

Hubby can no longer stand my Dr House marathons etc so I stay up late to watch them when he goes to bed. 

Am I the only one? I feel like no one can understand me unless they have lived through what I have. And no one here has so I feel lost and lonely.

Is this PTSD?


Wow that makes me feel like I'm not crazy and alone in that feeling. I feel so at ease, almost excited when I need to get any type of medical treatment, IV's, surgeries, doctor appointments. The reason that I've come to is that when I was going through all the emergency surgeries and traumas at 16-21 I think my mind tricked itself separating the normal scared feelings, into thinking that this fun, this is normal. I don't tell anyone but I like having procedures done now. Also I haven't felt real emotions since then, no happiness, no contentment, do not feel anything when I see a baby cry, Really nothing. I think my mind turned it all off to be able to survive through the trauma.


I understand. There is a huge difference between getting sick as an adult after a life of normally good health (shock, pain, suffering, denial...) and having grown up sick and in a hospital.

Does it make us a funny sort of egocentric where our lives are centered around ourselves and our illnesses.? Maybe.

Is it that we are used to every single adult asking us about our health, intake, output, digestion,  sleep...the list just goes we are not comfortable when it is not 'about us and our disease'? 

I don't know...not sure if there is a rule or not...But yes, we are very special.

There was a big scandal about 'nepotism' here (the hiring and promoting of close family members in a business or government)...everyone seemed shocked by it but me. 

I found it somewhat normal.  You understand better than others what you know or experienced as a child, at the dinner table listening to parents speaking, going into work with them etc.

If your parents had a printer's shop, printing press etc and you grew up hanging around it then it would be most natural for you to either want to 'carry on the family business' or go into something literature or book editing. It is what you know and therefore you have an advanced understanding compared to someone who 'just decided to get into it'.

As a patient, who grew up in a hospital, 'it is what you know'...what you understand...your references. BP, I.V., anesthesia, surgery...none of these things scare you because you understand them and have lived through them...they make sense to you where the rest of the world may not. 

I feel scared and uncomfortable in a nightclub, do not do well in a huge stadium for a game or a concert or camping...I need my comfort zone...bathrooms close by with running water, toilets with clean seats, proximity to a hospital etc.

I do not get the jokes that a lot of people make or laugh at the 'stupid ones' when they use toilet humor...

That makes me different and often an outcast...but I am also the more sensitive one who people call in an emergency, who sees the 'signs' before the stroke or heart attack happen because I know what to look for...over sensitive or just 'used to it'?

So, do not feel bad about feeling more at ease in a hospital than a ballroom...But...And this is a big but...not feeling any emotions whatsoever is not a good may have had to turn them off in order to deal with what life was throwing at you...or buried them deep to face life but hopefully they are somewhere down there...hiding and waiting to thaw out.

Friends who can understand, talk therapy, group therapy or just a good friend can often help you get past the 'numbness' and into the flow of 'normal' (whatever that means).

In the meantime...I watch Grey's reruns, Dr House and Bones...




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