C.diff, ileus, blockages, j-pouch

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I am prone to worrying and have found mindfulness practices to be very helpful keeping me in the present.
 
So about an hour and a half ago I I gave her a glycerin suppository bc her distention was starting up. Nothing has happened. Can the glycerin hurt her in anyway?
 
There are others with much more pouch knowledge than I. But I will say those suppositories are supposed to be mild. I had to give them to my son as a toddler.

Try not to worry (IMPOSSIBLE, I know). At least in our experience, they sometimes took awhile to do the trick.

J.
 
:ghug: we were told to use the glycerin suppositories- for DS


they never really did anything for him--:yrolleyes:

few more hours until monday
 
She pooped. No gas at all. She doesn't fart like other people do only when she is on the toilet after laying down in the middle of the night like it finally works its way out. So weird. They look like normal stools not hard a play-doh consistency. Who knows, I am hopeful that this will turn around. They think the issue is at the rectum, after reading I found some people whom experienced rectal prolapse might just have to learn to exercise there pelvic floor. Only 5% are a failure due to this. I can have her do more pelvic thrusts, but I really do not think it is an issue bc she just pushed out play-doh.

I have a long list of things I think it might be and questions for her Doctor specifically pertaining to treatment and causes. Maybe 1-2 poops a day is her baseline and she has had a bug this whole time. Who knows? I am just trying to not speculate too much on any bridge before I get to it. This is harder for me bc I don't really feel like I have ever had a break from survival mode. It is like it consumes me completely. DH is not very happy with me right now, I am kinda depressed, worried, and I lack drive to do anything fun. Part of my issues are with my own auto-immune disease. He doesn't understand. Sucks!

Thanks for asking. How's you family doing?
 
Glycerin suppositories are pretty inoffensive. They will stimulate the bowel though and the process of inserting the suppository can also provide some stimulation and so give her the urge to push.

You haven't had a break Mary...:ghug:...It is hard not be consumed when your child is ill. You eat, sleep, breath everything for that child and that is normal way to be. But you also have insight to own feelings Mary and if need be act on them. I have come close many a time and if I need to I will, for my own sake and for those closest to me.
The love of a mother for her child is like no other. There are some men that get it and have those same feelings we do but many don't, just as there are women that don't have that bond and it confuses those of us that do. The love, devotion and time you give to your child doesn't lessen or change the love you have for your husband/partner but many's the time they just don't see and feel as we do. The urge to nurture is so strong and unless you have that as a part of your makeup then its a concept they don't understand. It's maddening and frustrating and sometimes you could just slap them! :eek2:

:hang: Mary, you are doing wonderfully well! Good luck with the consult and I am wishing with all my might that you get solid and sensible answers! :heart:

Dusty. xxx
 
QueenGothel said:
I am just trying to not speculate too much on any bridge before I get to it.
Click to expand...

I completely understand that sentiment M! We've been very lucky! EJ doesn't experience much pain or problems with his crohns, but there is a bridge lurking out there, it's long and shrouded in fog and I can't let myself go there.

And Dusty, who knows me far too well, knows how I feel about my children^^^
 
Loose lips sink ships Dex! So shush your mouth about my intimate knowledge of you!

You know what I reckon the problem is when it comes to parent's and children and love in general? Some people just never get that there are different types of love and having one sort of love, as a parent does for a child, doesn't negate another, like a husband and wife, it's just different and we all have the capacity to carry many types. :)

Dusty. xxx
 
My DH is 100% in this it just doesn't seem to consume him and I think he is trying to get me out of this funk I am in but in speaking of the fog, which is a perfect explanation we get a little lost finding each other when DD is not well.

I just have this feeling today that we are going to go in and like FW has experienced her Dr. will say she seems at bit better than Friday maybe we should just see re-evaluate in a week. Then her Doctor will be gone to another hospital, I hate the not knowing part. My fear is we again will be back to square one in a week. I defiantly am done doing x-rays on her for a while. I will not be sending her back to pre-school at this time. I don't want her to get a bug and have this all fester up again either. Probably not in my control either, but I will try to control what I can.

She seems well, belly distention is down. Still burping, not passing gas. I am sure she will be distended by the evening. It hasn't been as bad as it was over the weekend.
 
Yikes, I hope I didn't come across as thinking your Hubby wasn't fully onboard Mary. :sorry:

Dusty. xxx
 
Aw Mary. I feel for you hun. You really do amze me with how much you deal with and how intelkigently you approach every block put in your way and with such an amazing amount of love an compassion!

Men just have this incredible ability to realize when something is out of their control. Well, at least that is my husband. I am the complete opposite! I am a control freak, impatient, must research everything and a 150% kind a gal. I am constantly three steps ahead of the goings on and find it very hard to step away. This disease and it happening to my child has multiplied these tendancies ten fold!

I am sorry you are not feeling well either. I am sure all this stress, confusion, uncertaint has probably kicked up issues for you as well.

Much as I hate to admit it, some times we do have to take a lesson from our male counterparts (this message will self destruct in 10 seconds) and step away for a bit, try to have some fun, get some rest, clear our minds etc.

If your sadness and health is making him sad he obviously loves you very much. Let him take care of Rowan and you get some rest..let him dote on you...try some fun family activity (away from any germ invested indoor arena). Then when you are refreshed come back and attack again. It is amazing how you can sometimes see something that was right in fromt of your face when you are looking at it with a fresh mind. I would say you are probably like me and don't need all that much to refresh yourself. Maybe just one night.

I know easier said than done and you have my permission to copy and paste this as advice right back to me when I need it! :rosette2:
 
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My husband is very laid back as well. Most of the time it's nice because we balance each other out. He doesn't spend the time researching, and reading that I do (just part of my personality). He would be totally caught off guard if things got bad. He just doesn't see the point in thinking about the what ifs. Which I agree with to some point but you need to be prepared as well. So I understand the funk. You want to be prepared for any possibility, which means you have to read about every possibility which would depress anyone. We have so little control as parents over this disease that if there is something we can do to help, you can be assured it will be done. So I admire that about you :) This too shall pass...

:Karl:
 
Dutsy, no I didn't think you thought that but when I re-read my statement I thought it sounded like he wasn't supportive, and he is just not in the mist of the fog. Not his issue it is our issue as a team.

CIC- yes I do need to step away, but I am fearful to trust people bc it has failed me in the past. Then Rowan is always a topic of conversation to people whom have not saw me in awhile. They are trying to probably be empathetic but it keeps me thinking about it most certainly even when we are out with friends. Probably would do best to go sit in at a comedy show where someone else is ding the talking and we can all just laugh in unison.

JohnMom, Thanks I know I am not alone and many moms are going just as crazy as I.
 
Well as I suspected, we were sent home with no testing and no answers. The doctor said she will get all the pediatric surgeons together tomorrow they have a meeting to discuss/weird odd cases and she will be talking about Rowan. She call/ this her second opinion. I a third opinion is needed she wants Cincy, not Cleveland clinic bc she said Bo Shen is a Adult doctor not a pediatric doctor, will check into if this is a fact or not.

She doesn't think it is a pelvic floor function issue, or gastroparesis. She does think it is a obstruction or possibly SIBO. She doesn't think people just develop SIBO without an obstruction causing the overgrowth. She was very upfront in saying that she didn't know what was wrong bc non of her tests have shown one so far. She is not comfortable going in blind, would prefer to do this laparoscopically but if they cannot pin point where the obstruction is it will required an open exploratory Laparotomy, again. Doesn't sound good for my girl. Her plan is to get back with me with a plan by the 9th. She is hoping people show up to the meeting tomorrow for if they do not she will have to run around the hospital discussing the case individually with each surgeon, not an easy feat being she is also on clinic duty and the attending this week.

We are to stay the course and wait for further instructions.
 
Johnny's mom: Aaaah the what if's. That is why I love it here so much. No one else I know appreciates my interest and planning for the what ifs. I think only parents of chronically ill children understand it.

Queen: Trust no one! Well maybe that is an overstatement but yeah I trust only me armed with the advice of the professionals. When you mentioned dads and the fact that it always seems to be us there with te horrible things I chuckled a bit at myself. Like yeah but if I let dad do the yucky stuff I might actually have to let him have a say in treatments etc.

When I said step away, I meant only to give yourself a little break not a real big step away...one maybe two steps...ready to turn back at a moments notice. But ugh yes I hear ya sista about the topic of conversation thing. And what gets me is they bring it up and when things are so troubling it is so hard to say, "O.K. thank you for asking" You are weak and the whole story comes blurting out and that is way more than they were bargaining for or are even interested in when they asked. I think a comedy club or a movie sounds like a splendid idea! Wish I lived nearby! Hey, here's an idea. We can all live on a commune....a Crohns Commune...a toilet in every room! Our own resident GI, Bartender and a cow for FW!
 
Oh and another great stress reliever...kickboxing. You get to bang the crap out of something, burn calories, get a great workout and release endorphines from exercise.
 
Funny you mention kickboxing I was thinking real boxing though. I have weak knees from a rollerblading accident I dislocated my knee. Personally I would love to punch someone in the face and get punched back square in the face. Granted a face and teeth guard in place. I think it would feel good to feel something again.
 
Haha yeah but as I sent I thought "do we really want to arm Queen with kickboxing training....":shifty-t:
 
nutkick.gif
 
QueenGothel said:
I have weak knees from a rollerblading acciden.
Click to expand...

or Roller Derby? I think Oueen Gothel is your Roller Derby name and has nothing to do with some innocent kids movie.

Hey there's another idea...we can have own own Roller Derby team to relieve stress. What shall our name be?
 
No not derby. My bestfriend whom is a Detroit Derby Girl tried to get me to boot camp. Hell no, I am a no go! She has way bigger guts than I maybe before my injury, but afterwards I tossed my Bauer blades away in a garage sale years ago.
 
crohnsinct said:
Yeah but I use a bag not a cow! You cow tippin country fool!
Click to expand...

I was figuring fw took it very literal. Kicking a box?

Mary, hoping things ease soon for you. Maybe it IS her new norm to go less, and hoping you figure out the cause of the distension quickly. I am glad it isn't causing her any pain.

Dex, love the bridge/fog analogy. Worse yet that we can go crazy hypothesizing what we'll do when we come to it.
 
Lol u guys are so funny lol poop patrol, roller blading
Could do with some distressing.
Hugs ur way Mary I how u and Rowan
Get some relief soon x x x
 
Yes Mylittlesunshine,:rosette2:

It doesn't take much for us to get side tracked.

How about a team for toddlers with EN and we can be called the TUBBIES! :thumleft:
As long as we don't get confused with the Tell-a-TUBIES.:ylol:
 
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Rowan's belly is very VERY distended this morning. Hoping the doctor calls today with a plan. My mom is going back in for another lypthotripsy treatment tomorrow morning, her kidney stones were too big to pass. She has been in a lot of pain and taking Vicodin. Another friend of mine recently went in to the hospital for heart issues her heart rate and blood pressure was very high, after the doctors reluctance to treat her due to her young age they requested more tests and found a blockage she is now going into surgery today, a mom from this forum that hasn't posted but has been talking to me recently is going through the same colectomy as Rowan for UC with her 5 year old today. Lots to pray on today. I am a bit worried. :yfrown:
 
I think we should make a reality series about moms whose kids have IBD.

Instead of expensive jewelry, designer clothes and constant fighting and complaining about only having one vacation house. We can talk about enemas, poop, fevers, vomit and our sexy G.I. doctors. I am sure it would be a hit.... :rof:
 
Sorry M, didn't mean to have my joke follow your post about Rowan.

I will pray for Rowan, your mom and your friend. Hang in there momma!
 
Thinking of you Mary. And Rowan. And n, too, insurg er y today. :heart:
Reality show it is! But the second season we need a vacation home with bathrooms on every corner and tutors for our kids. And hot gi docs lol! ;)
 
The Vice Squad and Rectal Raiders would kick the Tubbies and Muppets butts! This is Derby FW..you gotta get mean!
 
crohnsinct:rosette2: I'm trying to be nice since you haven't been around much. :shifty-t:
Need we bring the old debate of country vs city?:cool2:
As we all know you lost that debate miserable.:frown:
And if you do wish to take me on :)yfrown:you don't want to) let's take it over to "Much ado".
Her Queen need her thread to be a place of sanity.
You attempting to come back with clever and witty come backs will only humiliate you and bring this thread into further degradation!:cool:
 
Intestinal Pseudo-obstruction???

Intestinal pseudo-obstruction is a rare condition with symptoms like those caused by a bowel obstruction, or blockage. But when the intestines are examined, no blockage is found. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines.



http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/index.aspx
 
Seriously... So my mom calls my uncle whom had his recent takedown from cancer had been staying with a roommate until his surgery. Since his surgery had been living with his girlfriend to help take care of him. Today was his follow up with his doctor, my father took him bc my mom had been feeling so ill. After the appointment my uncle decides to go home rather to his girlfriends house. Upon arrival his roommate was found dead and has apparently been dead for a few days. They are waiting outside the house for them to allow my uncle inside to collect his belongings now has to go live with my parents until he finds a new home. 2013 has not been a good year so far. That poor guy and his family. Totally sadden by this.
 
Oh my Mary I'm so sorry for this news
I hope u and your family get some relief
And peace soon,
Also you get answers about your little Rowan.
Thinking of u x x x x
 
I understand. :hug:
I hope you find rest and Rowan will be back to her normal self!
Take some time to laugh and always remember that my farm is only a few hours away!:kiss:
 
A direct admit and surgery soon

Rowan will be admitted tomorrow. Her surgeon thinks she has a blockage possibly at the ileostomy site. They are hoping to do this laparoscopically on Thursday or Friday. It will be the on-call surgeon the only way to get her in a slot is to have her admitted. Our prayers are that it is an easy fix and she doesn't need an exploratory laparotomy. I know that everyone wants me to go to Cincy. Unfortunately my mom is being admitted tomorrow also and the logistics are impossible for me to get around. Her surgeon feels it is not SIBO or a psuedo obstruction for these would have presented themselves.

I am beside myself right now and a bit numb. Hoping this is an easy fix.
I will be starting a new thread. Stay tuned.
 
I just re read no imaging - but the test you had Friday did that show it or something
Wish you the best of luck and calming nerves
It will all be ok
 
I pointed out to Her surgeon what looked like a narrowing at the ileostomy site the radiologist pointed out on Friday. She showed all of them the pictures and pointed out the same narrowing. They believe they can get this done laparoscopically so that is awesome. Be back in a bit my mom is here and I need to see her before her surgery.
 
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Just wanted to send my hugs, support and prayers your way! You have been through so much in the last few weeks and you have been so strong!!! I hope they quickly get to the source of Rowan's problems and that her recovery is quick and painless!
 
Her doctor talked the whole situation over with the on-call surgeon and went over the dynamic of Rows case. She will be in the building, just unable to book the OR bc her time is filled. So at least I know the people that know her best are available.

Her reasoning is if it were SIBO she has been on antibiotics for a while and they don't seem to be helping, she doesn't have a complete blockage she is able to pass food. I do trust her Surgeon and she is very conservative, not head strong and arrogant like some can be. I just hope to god she is right.

Then there is the fact that these suppositories are doing nothing but the enemas help, this points to the ileostomy site as well.
 
crossing my fingers for plan A !

Have one of your holiday White Russians Mary ~ you definitely deserve something to calm your nerves some :hug:

best of luck to your mom as well!
I'm so sorry for all of the things so stressful in your life right now :(
 
Mary,
So sorry I have not been around the past two days. But you guys are always in my thoughts and prayers. I am going to be praying hard that this will be the fix for Rowan and only smooth journeys after this. I am so sorry your family has been having such a rough time. I soooo know what you are going through. I hope your Moms procedure goes smoothly and easily as well. Thinking of you guys. Keep us posted!
 
No such luck of getting rid of me anytime soon. This forum is my best date book while we are in the hospital. Hoping this next thread to be very short!

Thanks everyone I will be in touch.
 
I know you're starting a new thread. Just wanted to say praying for you, Rowan, your Mom, your family and plan A!!!

Big hug - we'll be here when you can get on!

J.
 
Just wanted to wish you lots of luck for the surgery, hope it is an "easy" fix and it sorts out the problem with as little recovery time needed as possible. Sorry to hear about all the bad things happening to people around you, hope things get better. Hope your mom's procedure goes well.
 
Oh Mary...:ghug::ghug::ghug:

So much going on for you...I hope and pray all goes well for your beautiful girl and plan A is the only plan. Sending much love, luck and healing thoughts your way...:Karl:

I also hope your Mum and Uncle will be okay and soon on top of things again. :hug:

In my thoughts, always.
Dusty. xxx
 
Alls well that ends well. My mom is home and on pain meds and on the mend. Glad they got that awful kidney Soren out of here using a basket. I was like a basket how the heck do they get a basket up your urethra. She said you'd be amazed.

Rowan and I are going to get some much needed sleep. Thanks everyone hoping over to my new thread now. :eek:utahere:
 

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