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I had a pouchoscope Tuesday at Mayo's.  I'm going back this Wednesday to meet with my GI and the surgeon he's recommended. I told him before the scope that I was ready to get rid of it. He said that might happen......  I don't remember our exact words.  I did have the sedation but I heard him talking to someone before a bunch of biopsies, like "there" over and over again and saw them doing so on the screen.  I saw cuffitis on the screen, inquired and he said yes.  Before the procedure he apologized because they couldn't schedule everything at the same time.  That was nice.  It's the first time that's happened to me at Mayo and I go to 3 different departments.  We need to drive the 3.5 hours back this week.  I ride as can't sit very well and lower the seat back. No condition to drive a car. 

 

He told me to keep up the enemas....He dilated a different place than the efferent limb, which was dilated in Feb. It was all surreal.  I passed a stool full of dried and regular blood.  I don't remember doing that after scopes before.  FYI, I have to give myself enemas in some form or the other at least 5 times a day and have been on a soft food diet for months.

 

Today I woke up in pain from above my waist down through my abdomen.  My back side of the same area was painful too.  This was a different kind of pain.  I didn't know there could be any more kinds of pain. When it starts hurting above my belly button I am in trouble.  I doubt it's my kidneys or something other than my j-pouch. It is probably a partial blockage. The enemas quit bringing out anything but clear water back.  I have the enema process down pat so something is wrong. Good thing I have pain pills and antispasmodics. They aren't working too well today. I only take the dicyclomine when I have to. It blurs my vision.

 

I'm on a soft food diet and have been on it for months.  The longer I have to wait for the consultations the worst my anxiety becomes. 

 

What is the worst thing that could happen?  (besides death).

 

I will need to go to a permanent ostomy and I'll loose this awful acting pouch.  It wouldn't be then end of the world.......

 

 

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Thanks AllyKat,

My husband doesn't really get it.  We are taking care of our grandsons, age 9 and 5, in a few weeks, while our daughter and her husband go on a couples vacation 400 miles away.  We have are splitting the babysitting with our son-in-laws parents.  We drive an hour to turn them over to them.  The problem is my husband told our daughter that if I need surgery that we will time it to happen after their vacation.  He's going to end up doing all the child care as I have a difficult time doing anything right now.  When you feel like you need to go to the ER several times a week it isn't the time to be taking care of the grands.  I guess he's planning on doing all the work involved.  

 

Maybe I just need a dilation under anesthesia. I'm assuming that is outpatient. I feel so bad that I'll want to do whatever right away.  So her in-laws might end up with the boys for the whole week. I feel horrible because I really love these little boys. They live 70 miles away from us. I'm over analyzing everything......like I have my entire life!

Thanks, I met with my GI and a surgeon at Mayo's Wednesday and the surgeon is performing a dilation under anesthesia in a few hours, my check in is 8 am.  There is a stricture at the base of my j-pouch that she says was caused by the chronic cuffitis.  The pouchoscope last week and resulting biopsies were much better than in February.  "Mild" pouchitis and the only red I saw in the pictures was my cuff. My GI said there were a few bits of inflammation in the pouch but they weren't concerning. He took 18 biopsies so he's got it all covered. The efferent limb that was dilated in Feb. looks great as well.  It was such a relief to find out things have improved and a short procedure will probably do the trick.  I may need to dilate myself with a tool and the stoma nurses provide training on how to do so.  My GI said some people dilate weekly or however often they need to. He also said some come back to get a dilation under anesthesia annually.  I was afraid that I was headed for the worst case of going back to an ileostomy.  I'd told him last week that I was about done with the pouch and what a difference a week has made. I just don't have it in me to undergo a big surgery of removing of my pouch at this time and they assured me that everything else but the cuffitis and stricture looks good.  It's not just the medical condition of the j-pouch that would make it so hard it's all of my other health problems combined.

 

BTW my cuff is 3 cm when most are 1-2 cm.  It wouldn't be a big deal to most but a lot for those of us that still have UC, which is what the pathology reports call it.  It's called cuffitis but the label doesn't change the that I still have UC. Not yet "cured". Thanks for all of your suport lablover and Allykat

Tried to post a reply earlier but it got deleted...

Hi TE,

Just a little bit of love and support for you...many prayers that they find an answer or a solution of at least something that will give you back your life.

I can't offer much more than some heartfelt prayers...but you know that you are always in mine.

Let's get you your life back and start you living again.

Sharon

I self-dilate with an 18mm Heger dilator. I *should* do it at minimum 3x a week, but sometimes I'm forgetful, or the fistula will hurt and I'll avoid it. It's not so bad. I use Canasa the days I dilate, too. Plus there's the Humira. So far, everything pretty much back to my norm but for the damnable fistula. Scope in October to check things! 
Good luck!

I think some procedures/surgeries should not be outpatient.  I had a horrible time last night after all of the pain medications they gave me before wore off.  They gave my OxyContin to take with or without the Norco I take for pain.  I must be allergic to it.  That or the meds used during the surgery. That is all fine and well but there's swelling where the procedure was performed because while the newly enlarged opening was working right away after the surgery isn't working now. My entire body was shivering and so on.  I know that I'm expecting too much for one day after the surgery.  I have no idea what position  they put my body in to do the procedure but it feels like they put a vice on my head. I've taken a few of my 6 allocated migraine headache pills in less than a day. (I take daily medication that keeps me from getting all but a few migraines.)

 

Rachael I have no idea when the self dilation part would come into play.  I'm to call/email my surgeon and tell her how I am recovering.  I'm going to ask about that then and would rather get the tool and local training vs the 3.5 hour one way drive to Mayo's. Hopefully tomorrow will be better. 

 

It looks like I posted this in the right forum as I am Ranting.  It was a little procedure done around the are with a lot of pain receptors.  I will be emailing them about using the canasa right away.  The instructions say not to use suppositories for a week or two.  I'm sure they told me but I don't remember it at all.  The written instructions say that.  My cuffitis is flaring and not treating will just make things worse.  Since they think that is what caused the stricture then I would think I should treat it.

 

I'm cranky and feel like crap.

 

Thanks for all of your support ladies. 

Thank you all for praying and sending me positive vibes etc.  I felt really calm while standing in the pre-admissions line at Mayo's Wednesday afternoon.  There was someone playing some of my favorite old hymns on the grand piano at the subway level.  It's the perfect place for it too as the music sounds crystal clear up to the next floor, where I was at, too.  The entire 2 floors face a giant wall of windows looking out to a beautifully landscaped terrace from the basement level to the street one where there are beautiful shining buildings. On the opposite wall from where I was is a giant bronze of a man that is sort of like a cross between the David and Jesus on the cross - except the man is wearing only a leaf. One of his hands it raised above his head and he is looking upward while his other hand is extended like to encompass the whole atrium. His legs were placed together and his feet as standing on a base.  I took several pictures and they turned out well, considering I was standing with a cane in one hand and cellphone in the other   I hope it has inspired thousands of others like it did me.  I've seen him and the atrium many times but never looked at it all the same way before.

 

I'm going to be ok. I just have to get over this rough patch and pray that I will get to feel better for a long time.   

The dilation didn't work very well and I am not even going to try to self dilate.  I wouldn't have a problem with it as I use suppositories every day and so on.  I need to get better.  

My pouch is the biggie but I have many other health conditions and am no spring chicken at 59.  So, my surgeon is going to divert me to a permanent ileostomy on the 31st.  A lot has happened in the last 6 weeks.  She said it was the right decision as it leaves me options for the future.  I didn't even want to discuss pouch advancement surgery now.  I couldn't handle that big procedure at this time.  

 

I hope this stoma is better than my temp one.  It was a 8 week nightmare!  I told my surgeon that I feel so bad I would even go back to a temp as I felt better with it than I do now!  

 

 

 

As I've posted elsewhere the surgery was great for me as my surgeon, Dr. Kellie Mathis, did it laproscopically and it took her 3 hours to lyse adhesions as my abdomen was full of them.  She said that my intestines were stuck to the mesh from my hernia surgery.  She also placed my stoma on the lower left side as I really didn't want it up at my waistline - where the nurse had marked 2 spots.  I'd like to give her surgical notes to several medical professionals, including a doctor, that didn't understand why I needed to take pain medication.  I am hoping to taper off of it as soon as my UTI is gone.

 

I had a few other problems including dehydration problems, a UTI and some pneumonia that they thought was caused by my aspirating some of my projectile vomiting.  They took an x-ray to confirm it. I had to use oxygen for a few days. So an estimated 2 night stay turned into 6 and we stayed an extra night at the motel - just in case.  

 

The UTI is still hanging around.  It's a bad one that usually is contracted in a hospital. My fever went up to 103 degrees after shivering uncontrollably for hours.  I am almost done taking a round of bactrim. I hope it is working.  I want to get on with my life.  I'm sick and tired of being sick and tired and in pain all the time.

 

Thanks for your support. 

Last edited by TE Marie

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