J-pouch Take down

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QueenGothel

QueenGothel

Joined
Oct 13, 2011
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Another thread I am confusing myself so I won't be posting to the other two.

Well they just said the words "intermittent colitis" to me. I said Crohns, pouchitis, cuffitis what are you thinking and they said a form of IBD. Starting IV steroids tonight. Going to OR tomorrow to look for abcess and open wound for draining. Scared, and completely freaking out. I need a ******* miracle here, wtf? Still getting fevers with the Tylenol, Toradol being rotated every 3 hours. High 103+ fevers. :stinks:

Tag:Crohn's Mom, dannysmom, DustyKat, imaboveitall, izzi'smom, Jenn, momoftwinboys, Tesscorm, Twiggy930, Johnnysmom, Dexky, Jessi
 
Hey Mary,

Oh my, your poor baby...:hug:

Intermittent Colitis??? I think I'm as confused as you are. Intermittent Colitis sounds like a syndrome (group of symptoms) rather than a diagnosis to me. Has anyone else heard of Intermittent Colitis as a disease???

Do you know what her bloods are doing Mary?

The Pred and, she is on antibiotics?, should kick in soon and her fever will come down and hopefully when she goes to theatre they will find the source of the infection and clean it out. Oh man Mary my heart is breaking for you both...:ghug:

In my thoughts and prayers, :heart:
Dusty. xxx
 
She is actually on IV hydrocortisone. They are thinking maybe surgery was too soon after her ween. Maybe her body needs a boost of it. The current on call nights doc (urologist) who has been watching her doesn't think colitis makes sense. Thinking what you are thinking that it is infection. The fevers have slowed and stopped spiking as high since adding the 2 antibiotics. We should know more tomorrow but they are just leaving no stone unturned is what she thinks. They have had many different doctors in here trying to trouble shoot these fevers. All I know is 8 GIs, 2 hospitals, and a pathologist all diagnosed UC so I am not going to even go there mentally yet. We have a good week+ ahead of us still I know. At least I can feel safe in known they now know she doesn't present normal at anything, and can turn on a dime. ICU is monitoring her also from afar. Once I said they dropped the ball out loud they have been all over her.:voodoo:
 
So sorry she is still doing badly. I really hope they manage to find out what's happening and make it better!! Thinking of you.
 
:facepalm: Of course...IV=Hydrocortisone. Lord knows I have seen enough of it go up! :eek:

I hope they can sort things out for Rowan ASAP, poor love. :hug:

Dusty. xxx
 
I am thinking and praying for little Rowan... poor thing, she has been through so much for a little girl! :( And you are an unbelievable mom! :ghug: I, too, hope they can get this resolved soon so Rowan can get firmly on the road to recovery! :Karl:
 
good lord Mary ! :voodoo::voodoo:

I'm so sorry to hear all this :(

I hope the IV steroids help her to feel better, but damn they need to figure this out for your baby !

:ghug::ghug:

Thinking of you both :kiss:
 
Hi Mary,
I'm a new poster to this board but have been following your story for some time now. I too have a little one with UC (aged 6 dx 3). We're currently in hospital and likely facing surgery.
I just wanted to say I'm sorry you are both living through this and I hope this is just one of those frustrating blips which seem to be very common with colectomy/jpouch surgery.
I am in touch with many parents who have been told similar things by docs and their kids ended up being fine. I don't know if you are in a teaching hospital but I would not be surprised if you were as there are often tons of fellows/students/junior docs running around eager to prove their knowledge without much concern for the patient and the impact of their words on them.
If all of the GIs, path, and the surgeon who recently saw Rowan's intestines during take down all say UC I would ignore (I know easier said than done) the person who through around the "indeterminate/IBD" stuff. Likely someone with something to prove and not too much sensitivity/information. I have been told ridiculous things by fellows who have clearly not looked in my daughter's file and I'm in the best children's hospital in Canada and one of the best in the world. I'm happy your doc put them straight for you.
I just wanted to pipe in and wish you the best. Stay strong and I hope you have a full and blip free return to health for your little girl.
Sherry
 
I don't understand at all, but wishing you both well. Sounds like an infection to me. Hope you get some answers soon.
 
Heart rate normal, no fevers, feeling better now. NG tube is out. Drinking sips of H2O. Liquids tomorrow, then softs. Maybe real food by Saturday. My Brave girl. She was extra tough and brave this time, I am so proud of her. Now blood and I don't know if it coming from her butt or her urine. She just told me her pee hurts. Geez can she get a break. Thanks for sharing killcolitis yes we are at a teaching hospital (U of M) It can be frustrating at times. Especially when they are teaching in the room and a student doesn't know how to answer the questions and I have my hand up like pick me, pick me. She defiantly has a UTI, and a wound infection. Just don't feel like it is the source of the fevers.
 
Sending warm thoughts and prayers to you and little Rowan. That poor baby, she really really deserves a break from all of this, and so do you!!
 
Thinking about you and your little princess...:ghug:...and sending loads of love, luck and well wishes.

Dusty. :heart:
 
Well it turns out Rowan has been peeing past the foley they have been over replacing her electrolyte putting her kidneys into overdrive. The toradol and vanco didnt help. The blood she was passing was coming from her urine not jpouch. Didnt realize this until she peed the bed with the foley in. She is pissed off and starving. Solumedrol is not helping her hunger. She wont quit crying and begging for pizza. So very annoyed today. Dh is in there with her. I basically ran away once he arrived. I could scream.
 
Oh Mary........

I don't have anything to add other than a big say and a bug. And of course, prayers. You all will get through this.

J.
 
Going for another ultra sound to verify no abcess before they give her food. If abcess we go to OR to open wound and drain tube. Now on Cipro and Flagyl. Suffering from butt burn... :(
 
Rocky - so sorry for this turn. I hope it went well this a.m. and that you and Rowan could get off the ropes for good this time. You both deserve a break. I will be praying for you.
 
They are giving her iron to start thickening her up. They are not wanting to add food bc they never figured out the fevers and the wound site looks terrible. Well now I am thinking of course it is she was pooping (via sunken ileostomy) on her skin for a week before surgery and they went they made the new incision in worst possible place. Them being afraid to feed her makes me afraid to feed her. But correct me if I am crazy but how thick do you think a iron pill can make TPN and Lipids? Ohhh and while on Cipro and Flagyl without a colon.

Ro is starving. She says to me "Mommy my belly hurts because it wants cheese strings" if I had cheese string it would feel better.". I have to hide and eat like I have a eating disorder. The steroids are swinging her mood crazy she was crying watching Finnis and Ferb bc she thought Perry the Platapus was lost.

She is coping pretty well with the nurses, the nurses do not do pokes at all. It really helps make her feel safer I think. Give the kid a cracker she has lost 3 pounds already. Let me thicken her up. Some yogurt or something... Nutren Jr she would take anything that isn't fruit flavored. She refuses to eat Jello, Popsicles. She has drank some broth. Two weeks without food sucks, and she didn't have TPN until a week after being there. She just got off NPO two days ago. Only drinking water.

They are only adding one thing a day. Added the iron pill today BUT didn't get it in her mouth until 6pm. I busted out whoop ass on the brand new resident surgeon. Said I shouldn't have to be a post it note reminding you to start the iron pill. THERE WAS 4 doctors all agreeing and nobody did it. I am mad bc it effects her directly, if I have to wait until 7pm at night to feed her now and this means she will be pooing more all night.

End Rant! Goodnight. I am home for a whole day and hopefully tomorrow night. Because everything is going to get better. My brave Rowan.
 
Just to say 'Thinking of you'.

And you are right 'Everything is going to get better'.

Take care,
LilyRose
 
:kiss:Well they broke down and gave us food finally. YAY! Happy dance!:dance: but they gave her too much imodium and morphine so they have slowed her bowels too much. Waiting...:yrolleyes: they opened the new wound bc of infection :confused2: it is very graphic looking and they were giving her the morphine to calm her I 86ed that first thing. I also 86ed the iron pill for the evening. :ymad:

The only good thing is there is a new resident that is soooo cute. Lol nice to have him to look at for the remainder of the week. He is changing her dressings from now on. We will call him Doc Hollywood. Very Pretty. But kinda forgetful according to my nurse.
 
Doc Hollywood! LMAO! Silver linings!

This is all so unbelievable! O and I continue to remember you and Rowan in our prayers. How are her spirits the poor dearheart?
 
Glad they let her have food - and hope things improve soon - thinking of you guys and sending big hugs xxxx
 
Hope all goes well with the reintro of food!! Sending wishes that ALL begins to clear up soon! :ghug:
 
She went to the OR last night and luckily her doctor was the surgeon on call. They restitched the muscle so she can't herniate. Applied a wound vac to both sites. If all goes as planned we should be able to feed her tonight. Wound vac switch out to portable unit on Friday. Bedside vac change on Monday and possibly home Monday-Tuesday. She is pretty sore. Rotating IV Tylenol and Toradol. Poor kiddo can't catch a break.
 
Glad to hear the j-pouch is working. Hope her pain levels decrease soon and you both get to go home!
 
Waiting for the ileus to go away. She is on reg food but I don't dare give her any until I see poop or hear a fart. Back up to 40 IV steroids 5 day ween again. Her spirit is very sad. Her wound vac irritates her belly too. Moon face is back.
 
Gosh, I'm so sorry she had to go into surgery yet again. Glad to hear that she might get to go home monday or tuesday though! That would be great.

I hope she has a speedy recovery and you both can get some rest. :)
 
YAY J POUCH! Come on poop...sending lots of poo dancing bananas your way:dance::dance::dance::dance::dance:
 
Today was a good day. NPO for OR tomorrow for a wound vac change out... The portable one we will be bringing home. Surgeons want another look see at the wound before Monday's release. Hoping for no more hurdle. This kid just can't jump anymore. So tired. Sleep soon in my future I can see the finish line yet again.
 
Wow, good luck!!! Wishing with you that there are no more hurdles to jump! :Karl:
 
Glad you had a good day...you both deserve it and many more to come. We are praying there are no obstacles and you get home Monday!!!!!
 
The hospital invited us to a free weeks vacation. It is a camping trip at Camp Michigania. A campground with free everything, horseback rides, archery, arts and crafts, boating, food, music concerts. I am so excited it is an exclusive UofM alumni only campground and alumni are usually chosen by lottery. A very expensive camping trip. I am so excited. Just what Row needs.
 
That is fantasic!! I'm so pleased about the camping trip. As you say, it is just what you need. I hope that it is smoother sailing from here.
Wishing you the best.
LilyRose
 
Wow that was really nice of them. You both deserve it after what poor Rowan has gone through. Hope you have no more hurdles!
 
I am so happy that there is light at the end of this long dark tunnel! You 2 very much deserve this camp break. Make sure Row gets plenty of cheese strings for her belly. :D

BIG HUGS for both of you!!! :hug: :hug:
 
How wonderful that Rowan is doing better AND a free vacation! That is just so fabulous but so very deserved for you all!

Onwards and Upwards!

:mademyday:
Dusty. xxx
 
I am so sorry to hear Row is still struggling...I know I am not around much but you are in my thoughts <3 Sending our love and hoping hedr vacation is everything she could wish for!
 
We got home on Monday night. Today is her first wound vac change at home. Time to dope her up for it. Sucks giving her Oxycotin. I hate these heavy meds. :( wanted to go see BRAVE but we will see how she is feeling by 3pm.
 
I so happy for you both, It must feel great.:medal1:
I hope you both get to see the movie.
By the way where is this camp your going to?
Is it located near you or up here by me in northern Mi..
Oh it doesn't matter, we're Michigan State fans.:ytongue:

Farmwife
 
Wow, that's near me:thumleft:.
I wont tell any one:yfrown:.
Too many state fans up here.:ylol:
It's beautiful there. You'll all have a great time.:rosette2:

Farmwife
 
Mary, so happy for you that you are both at home!!! :Karl:

Hope you were able to make it to the movie! :D
 
So pleased that you are home. Hopefully it will be be on the mend from here.

You have both been so brave.

Take care,
LilyRose
 
She did pretty well with the wound vac change at home. We have appt on the 20th bc the ostomy wound is almost completely closed. They need to decide if they are going to close it or let it heal opened. The wound vac WOC nurse and the doctors are not agreeing with the choices of dressing. I am leaning more towards the reasoning of the WOC nurse over the surgeons bc she has been in less pain since she redid the dressing. We will see how tomorrow is going. She wore panties instead of a pull up all day yesterday. Yay for Rowan!
 
Its the little thing - LIKE UNDERWEAR - that can make a girl smile. :thumleft::thumleft::thumleft::thumleft::thumleft::thumleft:

Yay for Rowan!

J.
 
Yay for panties! :dance::dance::dance::dance::dance::dance::dance:

So glad to hear that Rowan is doing well and is on the mend.
 
Nurse and WOC nurse came out today. No more wound vac needed. Wet to dry dressing changes from here on out. It looks better but still pretty rough. Going to have to save for a tummy tuck when she wants it. But all in all I am happy to see it healed so well so fast. Incredible!
 
I am doin' the happy dance!...:luigi::luigi::luigi::luigi::luigi:


This is soooooooooo wonderful to hear Mary. After all you have both been through it can't come soon enough! Bless you both...:hug:

:mademyday:
Dusty. xxx
 
Went to doctors appt. All went well. Wet/dry dressing changes twice daily. I need to get some montgomery strips so I don't have to keep pulling tape. It seems the tape is the hardest part. Beyond that she is doing well at home and seems to be healing up well. Still living in fear a bit. I hear her crying sometimes and she isn't. I wake up completely pumped up by my adrenaline. Sometimes I feel a bit crazy. I stare at her poop sometimes I see red that isn't there and have to turn on the bright lights. All is well beyond my mind playing tricks on me.
 
That's great to hear. :ghug:
I know what you mean, Grace could NOT sleep for 2 YEARS! Honestly.
She wake up screaming in pain.
When she finally started to sleep though the night, I couldn't for two weeks.:sign0085:
My body was just use to being up and ready.
CRAZY, I know.
Enjoy the good times.

Oh, what is montgomery strips????

Farmwife
 
Mary, GREAT to hear!!!! The two of you so much deserve health and happiness from now on!! :banana:
 
So Great!!! I am so happy for you both and hope that this it is for trials!!! You are both crowned Champions and should not have to step back in that ring EVER!

PTSD!!! Totally understandable given all you have been through. With O's last results being good I was telling a friend she is fine but I don't remember how to do "fine". If I felt that way and have been dealing with his for only 6 months and nothing as serious and complicated as you I could only imagine how you must feel. Believe it or not I am doing "fine" pretty well now. I even let O go to the bathroom without my inspections...it is the big joke around the house...look our big girl is going potty all by herself.

You will get there it will take time :ghug:
 
We are done caring for wounds. Yay! BUT I thought she might be having a case of pouchitis but it has been intermittent bleeding. A little on the tissue basically some days after every poo other none at all. I wish there were a j-pouch area in this forum. Can some please give me directions to it? I went to j-pouch.org and I must be spoiled by the ease of this forum bc I feel like I have to read,read and read and I don't get responses as quickly or as many opinion as I need. :(. It is a tough thing for me to not have a lot of support now. I feel like i am in no mans land.

Anyswho I have a giant bottle of Cipro and the bleeding didnt happen at all today the doctors say might be pouchitis and want her on the Cipro but have you all saw the list of side effects and for a 4 year old to boot. Idk. Rowans hair has been falling out I don't really want her on any drugs. I started her back on acidopillus bc I heard it can help with pouchitis. I didn't give any imodium today bc she is pooping brown semi formed Play-do looking poos. Maybe it is the probiotic. Idk. I certainly hope so.

She is happy and I haven't let her see the blood. To her she is all better. She really wants to swim. Wound is still a bit too scabby I'd say though. I on the other hand am still the paranoid, neurotic and the crazy mom. But hey you all can relate so... At least here I am normal.
 
So glad she is so much better. Have you tried the ileostomy association site, iasupport.org. They have a j-pouch section. It is mainly UK based but they are great support and have a wealth of knowledge

Love to you all xxx
 
Glad to hear an update, but sorry things are not going as well as they could be! ((HUGS)) and hoping for things to look up for you soon! :)
 
Glad to hear things are a bit better, hope she doesn't end up needing the Cipro - my son found it quite strong. That's great that Rowan is happy though - makes it alot easier to cope with things when your child is feeling happy in themselves!
 
Some blood when wiping. :(. Started Cipro yesterday. Now i have to carefully time her iron also. This sucks. It is totally going to ruin the remainder of her summer. Cipros has so many precautions... Avoiding taking iron 6 hr b4 or 2 after. Then sun sensitivity, I already have to avoid going outside of fear of dehydration. Rowan seems weaker and skinnier this week.
 
Mary...... :heart::heart::heart::heart::heart::heart:

Things have got to turn around.....for both of you! Hugs to Rowan. Surely this is just temporary.

J.
 

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