I'm scared, tentative surgical date for j-pouch removal

So happy to hear... Really!!    It's tough to make a decision to go permanent but when they have to go back and have it removed.  Makes your head spin. 

My surgeon wouldn't do the permanent unless I agreed beforehand that the pouch goes at the same time.  Took me awhile to decide... But my body made the decision for me. 

I am so happy for you.  If you have a similar experience... You will heal fast and adjust quickly.  I was surprised at how fast I healed and adjusted. 

I wish you the best.  Sounds like your getting it and you deserve it. 

Whoo Hoo! 

My goodness I can't believe how quickly you are checking in and writing sensible sentences! So glad to hear you are doing well! And that things are already so much better than your last go'round :-)  And thanks for the well wishes for me -- just hearing that you are really on the mend is inspirational.

Any idea yet how long you'll be in the hospital? Next step, healthy, speedy recovery!

So glad to hear you are at the beginning of the other side - we've been thinking of you and we care about you out here.  Continued healing for you - you are an amazing individual and deserve some good times ahead - so I'm ordering them up for you with my magic wand!  Seriously, sending love and prayers.

Glad to hear you are doing well. The worst is behind you. I am just sorry you had to deal with so much to get here. But, maybe it was just a necessary step to acceptance!

Be well. 

Jan

I feel like hell today and they might be releasing me tonight or in the morning. I look good on paper but in person that's another  thing. The nausea is back. They have been good about getting the nausea for me. So I am hoping to be better in a few hours

Sorry TEMarie. It's not a straight road to being healed. I hope you feel better soon.

Nausea.... That sucks.  I hope it has been brought under control.  That part has to be hard. 

nausea sucks. that is all.

Allow me to pass on some advice from my G.I. surgeon, from when I got the k pouch . He said to not think of the healing progress as a day to day event, but rather as week to week. He also said that a  abdominal surgery is some of the most difficult surgery from which to recover.

If you do go home tomorrow it sounds like you have a good support system in place.   That's great. I do wish you the best in recovering. Keep in mind in the end it was the best thing to do and you will get better. A couple rough days here and there but you will get better.  Janet

Well I got in my projectile vomiting, several times. It was good that I asked the nurse it there was an empty basket as she brought a big basin to capture it. I hurled right after that.

Thanks for all of your support! It's harder to long game when you feel like dying,

Well, hopefully now it's all out and you can be on your way! 

It is hard to "long game" when you feel like that - truly, it is.  I get that.  I hate that you are so sick with nausea, vomiting, etc. - it sucks, as Dewey said.  Hate it - hope it goes away asap. Wish there was something to say to fix it. 

Still here on the 6th day  Same old problem too much output leading to a night of projectile vomiting. I am in pain as well. The pain sources are the following, migraine headaches, Peripheral neuropathy in my feet, gas, lower back plus the huge abdominal pain. The abdominal pain is cramping, sore inside and feeling like my remaining guts just are ready to explode. 

My surgeon said the soreness inside is due to the surgery. It took her 4 hours to lyse/take down ashesions this time. Adding that time and the diversion surgery, 6 months ago,  3 hours lysing makes 7 surgical hours she's spent. She reminded me it was 7 hours devoted to them total this morning She is one of the most patient people I know. 

It's nice to have a shower in my bathroom.  

TEMarie, I'm so sorry for how you're feeling now. Sounds like you're probably dehydrated from the vomiting along with tension and soreness from your body bracing for it. If you only have numbness and not pain in your feet, foot rubs can be helpful for the migraines. I had them after all four surgeries and it helped. Hope everything soon passes onto the next stage of healing for you.

ooft, rough recovery so far. hopefully before you know it, though of course it wont be soon enough the turn in the road comes and you get some smooth sailing. hydrate hydrate hydrate. candidly they should be assisting that with your IV, maybe ask if they can compensate after vomiting episodes? that's probably not simply written in the orders. so probably has to be asked outside the box.

when I was in the hospital for a bleed last summer, I had to point out to them, I was getting dehydrated and needed more fluids. I understood though hated why I hate to fight for my blood transfusions but for bloody saline?! sometimes they just don't think about it. nurse and docs completely agreed once I pointed it out.

I am no expert on migraines but I wonder if sometimes the dehydration might be one of the triggers.

T E

I hope it gets better.  I really do.  No two people can compare.  I am so sorry you have to go through it. 

Hopefully in the end it will be worth it.  It's terrible to go through... I cannot imagine the vomiting.  That's terrible. 

Richard. 

DEWEYJ - Sorry to hear you had to take care of yourself in the hospital. I'm blessed to be at the Mayo Clinic in MN. The hospitals at home, 3.5 hours away don'the compare with the care I receive here. My surgeon has been here every day, even over the weekend, and twice several days. Her Senior Resident comes with her and then another time.

The other medical staff here are rocket starscience too. I discuss everything with the RN's and get immediate answers and explanations. I still have an IV and have been getting antibiotics via it once or twice a day plus the fluids as needed. 

Hopefully I am out of here tomorrow. I am still in a lot of pain but know why and how to take care of myself. I can't wait to get ahold of my Super Digestive Enzymes as today I could have used them. I'm having major gas pains. Even did my downward dog pose today. The nurse got a kick out of seeing me doing that pose and immediately gas started coming out of my stoma. 

I know that when I  have questions and/or concerns that they get back to me right away. 

Te - thinking of you - hoping this gets much better soon. You've been thru it..and then some.  Sending care.

What a journey Te Marie, I  hope you are feeling much better now.. I am not far behind you and considering removing my pouch mid year. But I am still in the freak out (not another surgery mode) like you were a couple of months ago.. so your lead on this journey is very helpful to me. 

Hope all is going better TE.  Many days have passed since we have heard from you. 

Richard. 

Thinking of you TE...you have people out here who care so much for you.  I'd go nuts without this forum.  I really do hope and pray you are working your way through this really, really tough time (I know that seems an understatement). 

Hi all,

Thank you for all of your support!

I had a tough week. The TE before Marie on here means Tough Enough. I 've had to pull from everywhere and into my soul and faith to get through this past week. 

My surgeon left it up to me last Wednesday and I decided to go home from the hospital.  Wrong move,  but I thought I knew what was ahead of me.

I saw her and a couple of Stoma nurses yesterday. My incision broke open in a couple of locations before I left the hospital last week and since it is a "dirty" wound I have been packing it with gause. She says it looks good. The major problem is I've got ileus going on so am producing more output and that adds to the problem with the wafer. I can't get one to stay on for at least a flipping day. I've tried around 5 or 6 different ones. I've been using it since the operation last fall so didn't anticipate problems.

I am having hydration problems too. My surgeon ordered up 2 bags of IV fluids. I had those last night and walked out with what I thought was the best wafer on.  We got a motel room so I could go back to the Stoma nurse today. Verdict is that I am  trying a different wafer and am going back to see her tomorrow.

Also the hydration didn't work. I battle it all the time but usually am good for days after getting IV fluids.  Good news is we are spending the night with our granddaughter and her parents They live in Minnesota around 90 miles from Rochester. 

I'm okay

Tough Enough. 

I am so sorry for what's happening. 

I hope things start evening out soon... Very soon. 

Hydration is very important as you know.  I drink at least 7 bottles of water if not more a day.  I refill the same bottle.  So no waste of plastic.  I have had a high liquid output since the beginning.  Which is ok.  But everytime I change I have tiny leaks.  I do mean tiny.  I adjust it and it leaks somewhere else.  I really don't think you can stop it from leaking.  Even small ones like I have.  Someone may chime in on that.  I would hope they do.  Just to keep the wafer on that it can be completely sealed with no leaks.  It would be hard to do everytime. 

It's tough on the skin to change it.. The wafer... The same day you put it on.  I did it once and it was like superglue was used.  Have not done it since but I thought my skin was gonna tear. 

Stay strong Tough Enough!  You can do it. 

Richard. 

O... I like that... Tough Enough! 

P.S.

The reason my j-pouch needed to go was to get rid of the chronic unrelentless pain. Despite diversion to a permanent ileostomy last fall my j-pouch wouldn't calm down! I no longer have the pressure pain above my anus. The continuous cramping pain in my tailbone vacinity is gone! 

The surgery to remove that awful pouch was 2 weeks ago today. My surgeon reported that my cuff was thick and fibrous. The pathology report verified there was mild to moderate pouchitis throughout. This was despite taking antibiotics the month leading up to my surgery. 

She also spent hours of time lysing adhesions again. I hope they don't come back as that pain radiated through my abdomen. The goal is to gain some quality if life back and I have high hopes that goal is reachable.  

I just need to get through this recovery period, however long that will be.

As Angie said above, I would have gone nuts without all of your support for the last 5+ years. It's a wonderful thing for most people,  just wasn't for me.  Some of us have to be in the minority with  nasty j-pouches. They never said there was a 100% success rate.

Thanks for your support! 

Hi TE

 I am almost 3mos post op j pouch excision and perm Illeo. It was tough in the beginning 3wks in hospital a tough road. My stoma is flushed to the skin so has also been difficult with leaks. But now I can honestly say things are so much better !  I'm eating better and getting out more. Seeing the light. It does take time as up to 2 mos was still feeling the effects of surgery. I was told takes a good 4 mos until you really feel back to yourself. I do not miss my pouch at all! It's a great freedom after the dust settles. (: Hang in there. 

The TE,

I just scrolled down and found your post...So sorry for missing it and all that you have been through.

My deepest hopes that you are finally starting to feel a bit better, a bit stronger and that the pain and nausea are abating.

Are you still with the grandkiddies? Are you any better? How is the migraine doing? 

Be strong (I know that you are) and keep hope, it will soon pass and the pain will only be a memory.

Sharon

Thinking of you, TE - you are in the thick of yet another post op - you are extremely tough and it is amazing what you have been through.  Glad you got to be with your kids and grands.  Sorry about ileus, dehydration, etc. - on it goes - but we care out here - and we get it....I think this helps a lot...to know you aren't alone - this illness is not one that makes for great dinner table conversation!  (not that any illness does) - but this one - my gosh - if people knew the pain we have been in through the years - but lots of good times, too...such is life.  I laugh when I think back to my surgeon when I was 23 - who told me - one bad summer - and then your life will be normal.  ha!  This was 1987  - and he was actually a really kind, compassionate surgeon compared to many -they just were so excited to find something new in this "j pouch" thing.  And, it has helped so many - but also caused a lot of suffering too - again - seems to be the way living is...not for sissies.  Really thinking of you and sending care and empathy.

TE - again - thinking of you!!!  Sending caring thoughts and prayers...don't know if they work, but I'm doing it anyway!

I appreciate all of your support.  Thank you all

WARNING, the following is a rant about my lack of success getting medical attention at home after I was discharged from Mayo Clinic.

I'm going back Monday, 4/11/16, to Mayo for another appointment with Laurie, my wonderful stoma nurse.  I had appointments, and wafer changes, with her last Wednesday, Thursday and Friday.  My husband will drive me the 3.5 hours each way there.  Thank God there are reclining seats in our car!  I bought an air cushion while in the hospital.  The donut type wasn't recommended and this one is much  better.  

In the midst of all of this I hit a real low.  The Friday night after I was released from Mayo's on Wednesday I went to the ER at the hospital where my j-pouch surgeries were over 5 years ago.  I was just in there the end of October as well.  I handed the discharge papers to the triage nurse and answered all of her questions.  She seemed distracted.  I have no idea what was going on in there as I was the only one waiting to be seen.  I told her I had stitches in my abdomen as well as my rear.  I made it clear that I was in pain that my medications were not helping with and thought I was obstructed. After 1 hour my husband asked when I was going to be seen. I asked to be able to just lay down somewhere.  No can do as the examination rooms all needed to be cleaned.  They would get me in when a room was available.  After 2 hours I inquired and was told the same thing.  I was in such bad pain I couldn't walk.  I came home and took the maximum dose of pain medication and a sleeping pill.  I figured I would either wake up or die.  I finally got my pain down low enough to sleep.  

My surgeon at Mayo's on Wednesday was upset.  I should have been taken back ASAP with my discharge papers and the symptoms I was presenting.  When the dust is settled I will be complaining to the hospital authorities.  I am also going to  "fire" my internist. I was switched to him last summer when my doctor got a job with the VA.  He is condescending and arrogant.  I felt abandoned.  The hospital I go to here is great.  It is in a large metropolitan area and there are other hospitals. This one has all of my prior surgery and testing information. 

I'm finally in somewhat control.  Still having too high of output and changing the wafer too often but things are improving.  I am getting wonderful care at the Mayo Clinic that is 200 miles away. Hopefully Laurie will be satisfied and the products to use will finally be settled.

End Rant, thanks, I needed that....to get it all out, know what I mean?

I know what you mean... Hoping... Hoping for you as it goes.  So sorry to hear what's going on.  I consider my self fortunate.  You will get there TE. 

Oh jeez, that is tough. It's hard enough to have a medical condition that's rare, that a lot of medical professionals done even understand. It's harder to be dismissed while in tremendous pain. Feeling abandoned. I hope things start to look up and status quo soon.

I am so sorry TE,

That is crappy, crappy treatment of a patient in pain....Next time, warn your hubby first, scream and faint! 

That usually gets their attention. (just make sure that hubby is standing behind you to catch you when you fall)...

I agree that they should get a very strongly worded letter and a formal complaint...unless they had just discharged a highly contagous patient and they were disinfecting all of the rooms...there is no excuse.

Do not let this get to you...the hardest part is over and you are on the up and up on your healing curve....

Huge hugs

Sharon

sheesh, sorry to hear.

Just finished with my last appt for now. I'm confident the worst is over. I know if a problem pops up who to call or email. Mayo Clinic  gets back to me right away which is much ave is better than my local physicians do.

I can now sleep without worring if the bag is going to explode. We are going to retutrn all unopened supplies, that I will never use, and pick up what I need.  I am braced for explaining it all with my insurance companies and medical supplier several times. It took me months to get this all straightened out last fall. 

Thanks everyone.   

.... 

So good to hear you are doing better and that you can rely on the Mayo when things get tough! I've been hitting some bumpy patches myself lately and praying for you in the much more difficult state you've been in. I am also sorry to hear about your awful treatment at the hospital ER. I hate that helpless feeling of choking back tears and anger when at the mercy of clueless healthcare people whose job it is to help you while they carelessly do nothing. People just don't understand. It's like Angie's comment -- "one bad summer?" Really? Or the docs who've said to patients, "your colon is removed, so now your cured!" I was beginning to lose my mind not knowing what to believe -- I think I would have gone crazy without people like you and others on this site this past year. Thank you for sharing your "TE" story (good, bad, and ugly) and continuing to inspire and inform!

TE - you deserved that rant - that was RIDICULOUS - I know we aren't supposed to use all caps - but truly - shame on that hospital.  Glad you are feeling a bit better and hope it continues - it is so upsetting when you go to get help and you are met with utter nonsense - and that happens a lot in many ERs - for many reasons - our system is broken.  If we could all have Mayo all the time or C Clinic, we'd be so much better - it's stunning to me it's come to this - but it has..in the supposedly "richest country in the world" - what a joke that line is.    I fully realize my care could be much worse in other places - but in our "rich" country, it should be better.  And, seeing my parents - who are in their 80s - deal with health care - is just awful. There, I guess I needed to rant too...! Hope you continue to feel better and better TE!

You are right ANGIE. We should not need to drive 200 miles or more away for medical care. That plus staying in motel rooms gets pricy.  Not everyone can afford to do that.  It feels like I have no security net here. 12 hours after I tried to be seen in the E.R. I text my Internist to see if he woukd call them so I could get in faster. I got a snippy text back telling me it was not approprialte to contact him on his personal cell phone and if having a medical emergency to go to the ER. First of all I didn't know it was his personal cell as he contacted me on it last fall. We had a text history between us reguarding him admitting me tomthe hospital.

I should have called and talked to whatever doctor was on call that weekend but they wouldn't have known me and so on. The disrespectful was he chastised me isn't acceptical. When the dust clears I'm finding a new Internist or PCP. 

JENJEN, thank you for your support I am praying for you too.

I am better than last week and think it was the strong antibiotics I was taking. The nurses I saw Monday, at Mayo's,  said that I could probably get the tendency to dehydrate and high output under control. 

Plus a Mayo Stoma nurse prescribed me an anti fungal powder to use on my stoma, whereas my local one hadn't for the same problem I had for 6 months.  It's used when what I call a "canyon" between the stoma and the skin. They stuck cotton swabs to see how deep it was. Amazing how that simple thing can help so much.

I am better than I was before the surgery. 

Thanks everyone

TE - thanks for letting us know how you are doing - really hoping things get easier and easier...you are wonderful and so supportive and you are going through such a difficult time - the "system" is just not set up to work very well - in so many ways - and I know as I age it's only going to get harder to deal with it.  I try to prepare myself for that reality often - but I know there is no way to prepare myself for it....I think we all have this notion that if we worked really hard all our lives, etc. that at some point as we got older we would be respected and treated with dignity - and as we now - in our culture - that's just now how it works for the most part.  It's a sad thing to know - and now that the economy is even more screwed up I just love all the AARP articles etc. about how seniors are "enjoying working in their senior years" and seniors are thrilled to be wearing "high heels and starting up a new business" etc. etc. - (I'm sure some are - and good for them) - but it's such propaganda and it drives me nuts.  Well, that was a off topic rant - sorry 'bout that - what really matters is that you are getting better...please keep getting better - so proud of you for fighting this fight.  So sorry you have had to do it.

TE Marie posted:

 

I am better than I was before the surgery. 

Thanks everyone

 

That's what we want to hear! 

That is the best news! 

Richard.