# C.diff, ileus, blockages, j-pouch



## QueenGothel

Rowan 4 year old jpoucher with slowed bowels and distention.  Admitted to hospital thru ER for possible bowel obstruction.  Per X-rays found many small bowel loops. After testing positive for c.diff oral vancomycin started.  Not much improvement 48 hours later. I was told they want to start food tomorrow. My concern with this is nothing has changed.  She has not really improved, still no bowel sounds, they said they heard it I have been listening all evening and not a sound yet.  She is still distended.  My fear is with adding food and she has a bowel twist, obstruction, narrowing caused by scar tissue. They are making an assumption that the c.diff has caused this pseudo ileus, I hope they are right but why add food if she still isn't moving. What will this do?  Worsen the situation from as I see it. 

I have some trust issues with doctors in general we have not really had an easy year.  No real fault to them but Rowan has never ever presented normal.  They said if she had a bowel obstruction she would be sicker.  Well last time she had a bowel obstruction she was almost released with it. No fever, no laziness, no vomiting.  I've been here done this before. 

My fears are they will add food and she will become so distended we end up in the OR with c.diff, which can kill her. 

I am going to requested they prove to me she is not obstructed but using tests rather than playing Russian roulette with my daughters intestines.  Ct scan I am assuming.  I don't know a ton about all the tests you can have done for blockages so please give me some advice.  What would you do if you were in my shoes? 

Sorry if I am rambling but I don't know whom to talk to about it.  Please tell me your thoughts.  Am I crazy?


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## QueenGothel

DH said she was doing great and improving.  I am beginning to think he is just as delusional as the resident that I just spoke with.  before I got here I was excited about starting food thinking wow thing must really be improving.  Then I got here and things haven't changed really at all.


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## Tesscorm

Sorry, Mary, I have no advice to give you   I just posted in your other thread.. i was so hoping to hear she was beginning to feel better.

It's so hard, I'm sure you're exhausted but try to stay strong a bit more!  Always in my thoughts and prayers!! :ghug: :ghug:


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## Patricia56

Oh Mary. I am so sorry.

First, is Infectious Disease managing the C. Diff? If not, then get them in there pronto.

The distention is almost certainly from the c. diff. It can cause extreme distension. When my sister was sick with it the last time she looked like she was 9 months pregnant with twins.

So if you are thinking the distention is from a partial blockage, well it might be that or both or just the c. diff.

Second, did they use contrast medium when they did the Xrays?

Third, is she getting anything by mouth now? Liquid formula?

If nothing by mouth, then it would seem sensible to me to start with liquids before moving on to solids. If she's getting water and clear fluids then move up to soup/ensure/ice cream and see how she does.

Are you at a children's hospital? if not can you get her transferred to one? Don't know how the system works there so can't help much with that part.


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## QueenGothel

Yes we are at a children's hospital. 
No we haven't saw infectious disease. 
She has had clear fluids today.
They did not use contrast it was an ER image.

More info:
She just pooped black liquid. Took a photo and am waiting on the attending resident now.  Could it be from purple Popsicles?  I requested them to test it for blood.


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## Patricia56

I would absolutely want ID consulting on her case. She has GI issues already and presented with atypical symptoms. ID might have an opinion one way or the other on the food issue.

Does the poop smell bad? Hope you were able to catch it for them to look at. I am keeping good thoughts that she isn't having any bleeding.

I asked about the contrast because my sister has had what appeared to be small bowel obstructions a couple times and each time it resolved after she had a scan that required the use of oral contrast fluid - I think it was Gastrograffin. So I was wondering about that.

My heart is aching for you tonight. With you in spirit.


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## Sascot

I would second getting a scan with some sort of contrast.  It's really the only way they can see stuff moving through the bowels or not moving as the case may be.  It would show any blockages or narrowings.  I think it's a good idea to get some sort of scan before starting food - just to be sure.  My son had a barium meal, but if you can avoid that you should - it's really thick disgusting stuff that can get stuck and cause pain.  Andrew had no problem with it and passed it all but I had it once and ended up in agony with constipation.
I hope they get something organised soon!!


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## DustyKat

You aren't crazy Mary...:hug: 

The choice of imaging they always used for Matt was phase 1 CT, less radiation, with Gastrografin contrast. In his case it was always pretty accurate. 

Given Rowan's history I would err to caution too Mary. In the scheme of things peace of mind before pushing on isn't a big ask on your part. Good luck and squishy but gentle hugs for Rowan, bless her. :ghug: 

Dusty. :heart:


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## rhosymynydd

I agree with all the above especially on keeping her on liquid diet until things improve - can't they do an MRI or CAT - we would love to send Rowan one of our gastronaut ostomy puppets (at no cost of course) as kids love these lookalike so they can change the puppets bags etc. please let me know if I can send you one. fill in the contact details. we have some in the US waiting for dispatch, again they are all given to kids free. In the meantime all our love and prayers. http://www.thebowelmovement.info


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## izzi'smom

There isn't really a  plain x-ray that is appropriate for obstruction...while it CAN show up on an abdominal x-ray it may not. A CT abdomen with oral contrast is a much better option. 
I am going to bet that the purple popsicles could have caused black stools. However, a stool test for occult blood isn't unreasonable. 
Sending loads of love for all of you...and (((HUGS)))!
Hoping you get what you need and that today is a good day!


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## izzi'smom

Dear Rowan, 
You did a nice job coloring-I like how you stayed in the lines. I hope you get better quick! I would like to meet you in person some day after you are better. 
Love, Izzi :heart:


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## crohnsinct

Mary, I don't know much about imaging tests c - diff or pretty much anything that you are going through.  But I DO know that you have practically saved that little girls life using your intuition before.  You go ahead and follow your instincts...worse case you are wrong but you know your child and have to ruke out all doubt before agreeing to anything!  

Hugs, kisses, crossed fingers, toes and everything else and above all lots and lots of prayers!


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## QueenGothel

So they ordered another x-ray, to compare to the first x-ray.  I requested ct scan and they said if the X-ray doesn't show anything they will do a CT with contrast. They said they are trying to avoid the radiation bc she has had so much radiation already.  They are also having her blood drawn again for CBC.  Talked with the team, and they agree she is not any better than before she came in, they made her NPO again. 

They said they would let her surgeon know I have requested ID be involved. X-ray is stat, and I am doubting the outcome will give us really anything to go on. :ymad:

I mentioned the MRI or MRE and the yes aid it is a long test which she would have to be knocked out for, another scenario they are trying to skip. 

You think I should push for an NG suction for the distention?


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## Farmwife

Don't mess with c diff. I knew your fear first hand. My Grace wasn't even as sick as Rowan but I had a nurse look me in the eyes and say if Grace would have been sicker she could have died. Get the testing and or go to EN temporally.


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## AZMOM

Vancomycin is the "big gun" for c diff. Nonetheless, I would request the ID consult.  Remind me, has Rowan had c diff before?

I think your instinct to stay on fluids until she "goes" is a good one. Have you asked for a tube feed?  

Mary - my heart hurts for you both. Hang in there - you know her best of all!! N

Love, J.


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## imaboveitall

Don't think I'm weird but Rowan was one of the first thoughts I had when I got up today.
Something about the poignancy of that photo, a tiny child with a Christmas drawing who may spend Christmas in hosp is sticking with me.

I second Patricia's recommendation re: infectious disease consult.

A thought that is bugging me:
could the c-diff be an incidental finding and not the cause of her current issue?
V had one pos c-diff result, once. The Saint was out of town and a partner wanted her to start Flagyl. As she had no symptoms, I refused. Via email, The Saint backed me up and said, to the effect that some can have a pos result but not an infection and no need to treat.

Now I know Little Star there has symptoms galore but to me they don't sound that much like c-diff, i.e., copious bloody foul smelling diarrhea which is the hallmark.
With no colon perhaps the symptoms are different, though.
But what if there is something else amiss and it created conditions for the c-diff to overgrow, and they'll miss that thinking the c-diff is the only thing going on??
OR, the pos c-diff is like V's, not an actual infection but found incidentally, and the real issue is something else?

More imaging and ID is my thought, and liquid diet of really broken down formula.

Much love :Karl:


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## QueenGothel

So after the team agreeing with me and ordering NPO again and adding the x-ray the attending pediatric surgeon came in and notified me she canceled all of them.  But did just have her blood drawn.  Saying if she were getting worse her WBC would be going up and HgB would be going down if the black stool is indeed blood.

Her reasoning is this the x-ray is a pointless image. Says yes a ct scan would show an obstruction but that the barium contract could exasperate her to get diarrhea and she doesn't want that says maybe vanco via enema.  If tomorrow if no mark improvement adding IV Flagyl to get things moving and then stopping it once she starts moving, continuing the vanco. 

She said Rowan would be vomiting with the fluids if she were obstructed.  I said if there were a narrowing she would not and food could be the straw that breaks the camels back she agreed and said until I am convinced she will not add the food.  So I am back where'd I started basically. Ugh!  I am sooo exhausted!

Imaboveitall  she had the rancid smelling diarrhea for a few days but no distinct smell now.  I don't think your weird.  I am flatter your thinking of us and very thankful.  I asked the same question as to which came first ileus or c.diff and she said it is common for c.diff to come first and rare for it to go the other way but understand how at am thinking and wants to make sure I am confident in her treatment.


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## QueenGothel

AZMOM said:


> Vancomycin is the "big gun" for c diff. Nonetheless, I would request the ID consult.  Remind me, has Rowan had c diff before?
> 
> I think your instinct to stay on fluids until she "goes" is a good one. Have you asked for a tube feed?
> 
> Mary - my heart hurts for you both. Hang in there - you know her best of all!! N
> 
> Love, J.



Rowan has never had c.diff before.  Nutrition came down to discuss this and they want to add Nutren Jr to see how she handles that.  Doctor must approve first.

Farmwife she really does not appear sick at all I think this is why that are so apprehensive about my worries I think.


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## Farmwife

Normal I would agree but...she's NOT normal! She special and being special she and her mother should get all they ask for!:kiss:


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## kimmidwife

Mary,
I too have been thinking of you guys since I woke up. First chance I have had to get to the iPad though!
I agree with the others infectious disease consult ASAP! I am also glad they are not giving her solids. I agree with the others about if there is a mild blockage contrast could help clear it. I will continue to keep her in my prayers. I think you are doing things right though! Keep strong. I know it is rough but we are all sending hugs and love to you both!


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## imaboveitall

I hope it really is *just* c-diff. I know that statement exemplifies the reality we all live in on here, always weighing and hoping for the lesser of the evils 

I cannot wrap my head around why a kid not immunosuppressed, not just off a course of abx, not exposed to a high risk population, has c-diff.
I know you must be obsessing on that too.
SOMEthing made it overgrow. And I feel that thing is maybe being underinvestigated. 
I'll be watching this thread. :ghug:


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## izzi'smom

Mary, I have been contemplating this since I read your post earlier. Izzi tested positive for c-diff before her crohn's diagnosis. But her stool tested +. Marcus told me that because Flagyl was ineffective and they never tested her for c diff TOXINS (plus she was also not in the high risk pool and they had to test her 3 x to get a +), he believes she is just a carrier,  not that she has (ever had) an infection. So find out which test they did...maybe they are barking up the wrong tree. If so, maybe you can convince them to do more imaging.
Thinking of you, hon!!


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## imaboveitall

Thanks Angie.
V was presumed to be a carrier but she was pos for both and all subsequent tests were neg.
I feel there's something else in play here for that darling.
(God her photo really got to me *sniffle*)


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## Patricia56

Mary -

I sure hope you are getting some rest here and there or have someone you trust to spell you so you can rest outside the hospital. You need that so you have a clear head.

It sounds like you got a surgeon who knows what she's about and respects you as a parent too. Woo hoo! Yes a CT might be helpful but it potentially carries the radiation exposure of 500 xrays so doing as few as possible is good.

I have been busy getting my kids to school or would have posted sooner.

I have been wondering about the accuracy of the c. diff dx as well. She really does not appear to have typical symptoms at all. Fever? D? Abd pain? Seems really sick? No to all of those right?



CT is accurate in identifying low grade obstructions or partial obstructions less than 50% of the time unless there is strangulation and severe damage to the surrounding tissues which is what actually shows up. If she were having that then I think everyone would know it, which was the surgeon's point.

So I agree with the surgeon that it may not make sense to push for CT when she has no other signs of obstruction than lack of bowel movement and mild distension.

What I think you should ask for instead is ultrasound. 

According to the American College of Radiologist





> In skilled hands, US has been reported to have a nearly 90% success rate in diagnosing SBO [8,56-58]. In the pediatric age group, US has proven useful in evaluating intussusception [53], midgut volvulus [59], and other causes of SBO [60].


I did some research on using the oral contrast fluid to treat SBO and it has some good research data to back it up. Of course all of that data is from adults. However Gastrografin is approved for pediatric use.

It works by changing the fluid balance in the tissues.

If US or other indicators confirm or strongly suggest she has a partial or full SBO then maybe having them give her an oral contrast fluid with either high or low osmolality could be the next step.

(In this case osmolality refers to how similar or different the content of the contrast fluid is to the fluids in the intestinal tissues. For example, the contrast fluid may have a lot more or a lot less water. Because it's so different from the intestinal tissue fluid content, water is either drawn out of the intestinal tissues or the water from the contrast medium is drawn into the intestinal tissues. Either way it changes the volume or size of the intestinal tissues and hopefully clearing or reducing the obstruction.)

Hope that helps.


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## QueenGothel

Patricia you are correct she doesn't currently have any "normal "symptoms of c.diff. Though in rare case an pseudo ileus becomes dominant mostly in cases of people without a colon. I did mention an ultrasound to help with seeing what is going on and her surgeon said the issues is she has trapped gas and an ultrasound cannot see through gas??? I think this was what she said. 

Angie, they did a clostridium toxin report **positive**

Imaboveitall I told the doctors the same thing something could have cause this overgrowth.  A twist, a narrowing, a blockage. They don't think so but want to prove me wrong. 

Well good news is black stool came back negative for blood so it must be the purple popsicles. Nothing can scare me faster than a bunch of black stool.  

Blood tests are back
Fridays tests vs today's test results

WBC 14.6 - 6.1
HgB 12.2 - 10.6 (L)
HCT 36.9 - 32.0 (L)
PLT 633 (H) - 444 (H)

All others are normal not much change.

Questioned the HgB bc well we have done a lot of bleeding in our past and they think she might have been dehydrated when she came in.  

Thanks everyone I have all your info now store in my brain so hopefully we can come to some sort of compromise and get me some piece of mind someway, somehow.


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## Patricia56

Are they hearing bowel sounds that you can hear?

Interesting assortment of test results. She's not on any actual treatment right? Just being kept hydrated?

I'll be thinking of you - hope things improve without the need for any further intervention and you can both go home ASAP.

Hugs.


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## QueenGothel

They said yes they hear them nurse says she hears them I haven't heard squat! :ybatty:

Correct hydration and vanco at this time.


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## imaboveitall

Mary, screw the nurse hearing them, can the GI hear them???

I don't think she's bleeding internally. I do think her small bowel is having an issue apart from the c-diff that may be causative or at least contributory to the c-diff.
If she isn't markedly better by Wed I'd insist on imaging. In the interim I'd trial her on Peptamen or another amino acid based formula and see what reaction her gut has.


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## izzi'smom

Patricia, every facility I have worked at orders a plain film if SBO is unlikely, but if there is a strong suspicion clinically/question of SBO on plain film, CT is the gold standard. Bedside US may be used for a quick check but gives far less info regarding the site/severity of the obstruction. I have also seen US used for pregnant patients. 
I am a huge radiation awareness fan but I think if Rowan continues to be symptomatic and the Flagyl/Vanco combo isn't alleviating her symptoms CT is the way to go. 
Because her c diff toxin was + I would acquiesce and keep tabs on daily bloodwork for now but push hard if she seems to be worsening.

:heart:


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## QueenGothel

They removed her NPO status.  She is asking for food. Belly is a finally growling.  Good sign!  So I just let her have some vanilla yogurt and ordered her some Nutren Jrs.  So at the very least I know she is getting nutrition in her.  I she starts throwing up I guess I will know she is wrong.  They said I can feed her what I want, though they feel she can eat whatever she wants.  The surgeon said all the distention is gas from the c.diff and not a bowel obstruction bc she is soft and not in any pain when you apply pressure to her abdomen. I am going to go against every fear I have and trust this stranger.  I have to start trusting someone sometime.  The surgeon does completely talk me through her reasoning and explain everything very thoroughly.  I am scared but Rowan really like her bc she gave her yogurt.


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## izzi'smom

Glad to hear she explained everything in detail. I am surprised they started her off with dairy, but am hoping her bowel sounds continue and she is better quickly...sending our love!


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## Brian'sMom

C diff is really as dangerous as mentioned here? And did someone say Flagyl doesn't kill it off? I'm just curious. This thread is frightening to me a bit.


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## QueenGothel

Brian's mom it is more scary if you get a ileus from it. Bc Rowan doesn't have a colon it is my fear she will end up with a bowel obstruction, or started with one and end up in the OR.  C.diff and surgery as you can imagine is a horrible outcome.  The majority of people that die from c.diff yearly is due to surgery complications caused by c.diff.  For the most part in normal circumstances, I believe it is easily controlled though the infection has been getting stronger according to studies.  The good news is they are coming out with new treatments all the time. But as we all know IBDer are more prone to c.diff and are also more prone to have repeat surgeries.  

Sorry we scared you but it can get scary in the worst circumstances.

Flagyl is the first line of defense. Vancomycin is the big guns for it.  Oral Vancomycin with IV Flagyl is the weapon of mass destruction.


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## izzi'smom

Kathy, an active C diff infection involves spores, which are super hardy and difficult to get rid of (bleach or HOT water do the trick). So if everything isn't sanitized properly, the spores can reinfect.


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## Brian'sMom

Thanks for the info! My son recently had a gastro type flu bug...but because of watery D they did a stool test and he tested positive for C diff. The results came after 4 days of illness..and 2 days of feeling great. He was going back to school and we had even done his Humira shot Sun (the 2nd day of feeling great). He never had any fever, and just 2 of the days were watery D. He's never tested positive for C Diff...so I was surprised. He's on flagyl now. But even before his first dose he was already back to 'logs'.  The GI clinic never told us about the bleach...not just ordianary soap. I saw it here! I don't think any of us got it...but thanks GI docs!! (I keep my bathrooms clean...but I applied A&D ointment to his fissure that comes when he has lots of D. I used the soft soap in the bathroom to wash my hands, not bleach...ugh!)

Glad Rowan is doing better! HUGS


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## AZMOM

Kathy - be cautious but don't be afraid......love your heart. C Diff is awful and Mary told you EXACTLY right. Flagyl first, Vanco second (or first depending on situation. Makes PERFECT sense to me for Rowan), neutron bomb of Vanco/IV Flagyl next. 

Mary - I was going to ask you what, if anything, ID says about the vancomycin enemas. It is a hotly contested tx in our hospital. The chief of ID says she doesn't believe it to be effective and the new young ID doc likes to order it. 

So glad Rowan's improving!!!!!

Love,

J.


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## my little penguin

:ghug:


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## kimmidwife

Mary
Just checking in on you guys, so glad to hear Rowan is feeling a little better. Hopefully the surgeon is right and things will continue to progress in the right direction. Keeping my fingers crossed!


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## QueenGothel

izzi'smom said:


> Glad to hear she explained everything in detail. I am surprised they started her off with dairy, but am hoping her bowel sounds continue and she is better quickly...sending our love!


they left it up to me and i just always give potassium first bc she is so prone to getting low on it without her colon and all.  she did had a bit of a tummy ache but passed a lot of gas with her bm tonight and said her belly felt so much better afterwards.

I just was thinking of soft foods and liquids nutrition bc she hadnt ate in a few days and if she vomits it might not be as painful to vomit.


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## my little penguin

fingers crossed - she will be on  the mend soon.


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## QueenGothel

they never gave me my consult with ID or GI, but upon leaving I did run into Rowans old GI and she stopped to chat and said it sounded like the courses we were doing was a good one.:thumleft:


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## Clash

Just wanted to stop in, hope Rowan is doing better and sending hugs to you all!!!:ghug::ghug:


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## crohnsinct

Also checking in before logging off...and will check first thing!  Praying that this is the turn around for Rowan and she will be home for her birthday or at the least Christmas!


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## Patricia56

Glad to hear Rowan is doing better. It would be great if you could just skip all those  "what if" scenarios being discussed earlier.

Has she had c. diff before? I wonder how long a course they will put her on since I'm assuming relapse prevention will be very high on everyone's list.

Again, I'm glad to hear things seem to be moving in a reassuring direction. The surgeon's observations sound like they exactly mirror my personal experiences with c. diff in family members.

All the best.


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## DustyKat

Oh Mary, what an awful time you have had of things. :hug: I hope the signs you are now getting means that your little princess is on the mend. Fingers, toes and everything else crossed! 

In my thoughts and prayers hun...:heart: 

Dusty. xxx


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## imaboveitall

Checking on that Star...thanks for the update and cautiously happy it was a positive one! :kiss:
Will be lookiing in frequently.


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## kimmidwife

Yay for passing gas that is definitly a good sign that the gut is working better! I am so glad to hear this news. As a nurse once the patient started passing gas we always knew things were starting to improve! Hope to hear continued good news and that she is home before Christmas and her birthday!


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## QueenGothel

We might go home today.  They want her to eat her normal diet here and then if all goes well maybe be eating dinner at home tonight.  Belly distention has gone down a lot. Her dads birthday is today and her birthday is the 20th.  Though she will be home for her b-day and Christmas probably will not be doing a public appearance hence maybe missing her birthday but hopefully we will be good by Christmas.


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## Tesscorm

I'm so glad to hear she's doing so much better!!! :banana:  I bet you're both happy to be going home!!  :ghug:


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## my little penguin

Here is to eating well...
And gettin home


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## QueenGothel

Well ya know this was probably a good hospital visit as screwed up as that is to say.  She had c.diff and no sign of inflammation so I feel a little bit of releif that there wasn't any of her normal obvious signs of IBD going on.  A little less fearful of that shoe dropping that I have been fearing so much during this stay.  Rowan is one that goes off the charts with every indicator when she had a colon.  Her disease was never silent, it was more of a screamer. 

French toast, Nutren Jr, Banana, 4 bites of mashed potaotes and a 1/2 slice of pizza no complaints. Hope all goes well.  She is pretty distended again but she just ate again so.  We will see. Got my hawk eye on her. :shifty:


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## crohnsinct

GOOSEBUMPS!  This update totally turned my mood around today. Thank-you Rowan you little darling!


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## imaboveitall

:medal1: YAY for Rowan!
Bizarre sentence to write: I am so glad it is c-diff!
Why in the hell she got it is still bugging me.
Very happy to hear her gut has improved and she's being discharged. Something about her story really gets to me. I hope she has an excellent Christmas, I bet you'll make sure of that!

Much love  :rosette2:


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## QueenGothel

Well I just saw ID in the hallway and recognized them from the last time Rowan was here they were involved in her case.  I introduced myself and told them I had requested a consult and they stopped in and talked to me.  They actually said they do not endorse probiotic S. Boulardii for c.diff.  They said the do not have any studies that prove their effectiveness or what is in them.  SHOCKED:eek2: the studies show they are effective in helping with antiboitic associated diarrheal but not a treatment for c.diff or any other ID.

They think the chances anyone healthy will get c.diff in my house is pretty slim and to wash our hands often and this and bleaching the toilet, closing the lid before flushing will stop the spread and she can go to family functions, so long as she has a private toilet!:thumright:

Surprised at the ID response to the Florastor.  They said bc Rowan has IBD and c.diff of the small intestines she is might always be a carrier from now on.  Regardless, we will be starting a Florastor when we get home.


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## QueenGothel

Or maybe starting it when some of this gas goes away.  She is Very, Very, Very distended right now.


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## Farmwife

I hope you get to head home soon.


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## QueenGothel

We might stay the night.  Not much pooping going on here.


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## Farmwife

Bummer. :frown:
Is she still felling well?


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## izzi'smom

Ugh, Just sending you a hug.


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## Johnnysmom

Hugs to you Mary.  Bless Rowan's heart.  I will be praying for you both.

Keep those Docs on their toes, I think you have been very instrumental in Rowan getting through this last year.  

Hoping you all have a good night tonight and Rowan gets some rest hun.

Hang in there :heart:


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## QueenGothel

I decide to trust the doctors and here we are back to square one.  Idk wtf ya know.  Ugh... Thanks all waiting for the surgeon to give me her new opinion.  Idk what the course will be.  Just frustrated to spend extra time doing more of the same.

She is acting like her spunky self playing, running around, making jokes and is still very hungry.  Weirdest thing ever.  You'd think if she were bound up she would vomit.


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## QueenGothel

They really didn't say much about the belly distention.  They still think ileus I think.  They want to give her a night more to poop this out.  They said to give the vanco more time to work and to be have patience.  I am going to start getting pushy about verification of partial blockage tomorrow.  Wether it's a CT, MRI, ultrasound with contrast or a scope I am going to get pushy if she doesn't give me a solid poop tonight.  I got my hopes up I guess.  I should've known better to trust anyone.  Requesting GI consult I gave the surgeons enough time I think.  I want a second opinion.  She is burping a lot so I think she has an partial obstruction.

The doctor is a woman so I can't use my vice.  Damnit.


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## Farmwife

I'll being pray for her to poo!
Try to get some sleep tonight. You'll need your straight to push tomorrow. Just say the word and my rolling pin is yours.


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## imaboveitall

Oh Mary...I feared this. Hence my "cautious" happiness.
I really really hope I am wrong but I think she has something else amiss and I know you think this too.

Thinking of you guys often. I looked at her photo again, it sounds weird to hurt for a stranger but I am for her and you. :heart:


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## QueenGothel

They ordered more X-rays stat.


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## Patricia56

Darn.   :stinks: :stinks: :stinks:

bad words 

Thankful she's not in any apparent pain, unlike her mom no doubt

:ybatty: :angry-banghead: :voodoo:

Can she chew gum? Fits under the "might help, can't hurt" category.


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## my little penguin

Why not ct or mre?
Hugs I so feel for you and little Rowan


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## Patricia56

Been trying to avoid CT if not clearly necessary due to radiation load
Would have to sedate her for MRE due to length of study


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## AZMOM

Mary


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## my little penguin

Not understanding the sedation for the mre - I would have assume Motts has the same as ours . Any child 4 and over has the option of using the movie googles for over an hour of sitting still during the mre .
Under 4 = sedation 
I guess we must be really lucky then


----------



## Charleigh

Well I will be praying for poo too ~ geesh, I have never prayed over poo so much in my life as I do now (between mine and all of these forum babies :lol

Hugs


----------



## AZMOM

MLP - Vanderbilt children's sedates if MRI is lengthy as old as age 9 (maybe older, Claires just not older yet). How long is the MRE exam?

Praying, Mary!!!

J.


----------



## momoftwinboys

Mary I was so excited for you guys this morning!  and now deflated...  and I have never met you or Rowan. 
I can not imagine having to dealing with what you guys are going thru and have been thru....You are doing an incredible job!  
Sending positive thoughts your way.  Hang in there.


----------



## QueenGothel

X-rays really had a ton of loops.  Waiting for someone to read them.

She just pooped twice.  Not much but hey I will take it.


----------



## kimmidwife

Mary,what about a fluoroscopy? It uses less radiation then a regular ct but is better then a plain X-ray. Did she have to drink any contrast or barium for better visualization?


----------



## QueenGothel

No I asked for it but resident refused.  :ymad:  never heard of a fluoroscopy.


----------



## kimmidwife

A floroscopy is like a live time X-ray. They have you drink contrast and then do multiple pictures watching it move through the intestines. It gives a better visualization of what the bowels are doing.


----------



## QueenGothel

This must have been what the did to check Rowans J-pouch for leaks but they went through the rectum. They called it an X-ray with contrast and I watched it as they did it and it looked kinda like an X-ray.  I will ask... Thank you.


----------



## Patricia56

basically a small bowel follow through.

however, it can have a higher load - depends on skill of radiologist and time for transit


----------



## NMMom

Mary, I'm so sorry I'm just now reading what's been going on for you and Rowan.  I am so sorry you are going through this.  Ellie had c. Diff for a long time which lead us to her dx of UC.  You have my number please call if you want to talk about any of this.  I know it's a bit different b/c of Rowan's jpouch but I know a bit of what your dealing with.  

I'm on my tablet and can't type too well.  Sorry!

Hugs and prayers your way.


----------



## my little penguin

J - process of MRI can take over a hour or two.
DS has had two without sedation - one at age 6 another at age 8.
Both times he wore fancy wrap around movie google - think astronaut - which blocked out sound and vision etc for the movie he picked to play. 
We brought a DVD from home- 
So very doable at a younger age - no radiation and no anethesisa risk.

Mary- hope they can come up with a good plan tonight .


----------



## izzi'smom

Mary,

My heart hurts for you. I'm sorry for all that you're going through.

 She probably had a barium enema before . Because she has no colon, they may be able to use this in place of the CT. It's true that involves less radiation; however, it is not generally done to rule out an obstruction.

Isabel had an MRI at age 4 without sedation. I believe that rowan can do it as she is almost 4. 

Add any rate, I hope that the results of the X ray are good and that you are getting some rest tonight. So relieved that she isn't in any pain. Hoping tomorrow is a better day for you. :heart:


----------



## Farmwife

How is Rowan today?


----------



## QueenGothel

Of course the x-rays were a waste of time.  They said everything looks the same. Basically yes we see loops.

They switched her to From oral Vanco to IV Flagyl.  The reason being that the Vanco might not be getting where it needs to go bc of the ileus/narrowing.  This is today's plan if no real improvement in bowel function they plan to do an upper GI follow through tomorrow using the fluoroscopy and barium. 

She is only allowed to have frozen or reg. yogurt, Nutren Jr, water, Popsicles and pudding/Jello.  Basically all softs.  

The issue with diagnosis seems to be some where between ileus caused by c.diff or c.diff caused by narrowing/blockage.  Since she doesn't have specific symptoms of either just the symptoms of both which is distention and slowed bowels, which could be ileus or narrowing.  They are hesitant to use radiation for either diagnosis since regardless of who is right they both usually subsided on their own with time.  

Back to waiting.  We are getting pretty board around here!  She's painted about 8 Christmas ornaments and played every game I can find that can be washed. She is starving and keeps begging for food.  I keep giving her more Nutren Jrs. 

I asked for a GIs consult and she said she would but feels it will not be of much help.  They will call her case interesting and thank them for letting them sit in.  She said if the do not have a disease GI really isn't a good consult for Rowan anymore.
Thanks everyone!


----------



## Patricia56

Gahhhh.

Why barium?? It will so gunk up the works.

How about that stuff I mentioned earlier - Gastrografin? It's approved in Canada for pediatric use and might actually have some therapeutic benefit.

And how about adding some Rifampin? probably too soon for that and probably not approved for peds or this would be off label. never mind.

Where is ID? Are they the ones that switched her to IV Flagyl? Mutter, mutter, probably should have been on IV Flagyl as soon as they suspected ileus. surprised none of us thought of that.


----------



## NMMom

Hey, just read Patricia's post and had to chime in.  Ellie was on literally months of oral vanc and oral flagyl but was finally got rid of her c. Diff was vanc and rifampin at the same time.  Just an fyi


----------



## imaboveitall

Oh Mary...:heart:
I am with Patricia. If her motility is poor that barium shall sit in there and not move. It is constipating on its own.
I lean towards the ileus causing the c-diff due to poor motility creating a good chance for overgrowth.

I just read about Stephen and now Rowan...my heart hurts.
I hate this. Hate it and the littlest ones really hurt.
I am so sorry. 
Thank God she has you for a mother. Don't stop directing her care; you have been right it seems all along. :medal1:


----------



## StarGirrrrl

I'm no Dr but the last thing I would use is Barium in this situation.

I had a Bariun X-Ray and drank loads after, but that evening I felt it moving so slowly through my intestines and had some pains.


----------



## Farmwife

yeah the barium enema Grace has never even came out until two days later. Doc was getting worried.

I hope all is still going well.
Has her pooing improved at all?


----------



## QueenGothel

Oh they didn't say Barium sorry the word was contrast.  

My biggest hurdle really seems to be getting the surgeons egos down to my level.  They are now at the point finally where they are listening bc all it can be if not their diagnosis is what I told them was going on before she tested positive for c.diff.  Very frustrating to feel like I am not heard.  They listen but always do what they think it is. This all started when she woofed down some pizza and got a belly ache that night, from then on she has been distended.

ID is not involved in her direct care. Surgeon follows protocol already set by ID.  I asked they said they are following protocols.  This is why they are now doing the IV Flagyl.  

They started with Oral Vanco instead of ANY Flagyl bc of the neuropathy factor.  Which hasn't happened so previously when she was on Flagyl she said her hands were cracking. They assumed it meant she was having neuropathy but I personally think she was hallucinating from high fever and morphine.  At least now we know she isn't having any neuropathy and is no longer intolerant.  

I have a feeling tomorrow is just going to be a very bad day. :thumbdown:

They do not think they will have to do a long course of antibiotics bc remember she doesn't have a colon.  So this is a rare thing to even happen to her.  They think once thing start moving again she will respond very quickly. We will see.


----------



## imaboveitall

:ghug: F**k their egos.


----------



## QueenGothel

Well I guess I can't say that about Rowan surgeon who knows Rowan and has been through all the craziness with us.  She is more aware that I am up to speed on the protocols and proper places to find info on the Internet.  When other doctors talk to me they assume I get all my info from Wikipedia and Webmd which I have learned they hate.  I try to stick with .orgs and pubmed etc whenever they ask where am got my info.  Her doctor calls me "The Hugger" lol bc she has to hug me all the time bc weird shit is always happening to us.

The surgeon attending now is very nice and does listen and does take the time to explain her diagnosis.  She has said my thought could be what has happened she just says I know she has c.diff, I treat c.diff and hope that this gets things working.  Rowans symptoms are not the normal so I realize they are kinda stumped also, and I am sure are not used to being this way.


----------



## QueenGothel

Have I told you guy lately that I love you?  I know it is weird but I totally update you guys first.  You have been so helpful and supportive.  

Thanks!


----------



## kimmidwife

Thinking of you guys! My first chance to get to a computer all day!


----------



## Patricia56

Wanted to make sure you could read this post even on a tiny little screen...

Pardon my shouting but THIS IS WHY THEY NEED ID IN THERE.

Please note the part of this abstract that says that of the *56 cases* they could find info on *32% died* and* 60% were in ICU*.

http://www.ncbi.nlm.nih.gov/pubmed/21334446

Clostridium difficile enteritis: a review and pooled analysis of the cases.

Abstract
INTRODUCTION:
Clostridium difficile is the most common cause of healthcare-associated infection diarrhea and usually restricted to infection of the colon. However, small bowel involvement of C. difficile infection has been reported. We performed a literature review and pooled analysis of the reported cases of C. difficile enteritis

METHOD:
A Pubmed literature database search and pooled analysis of the reported cases of C. difficile enteritis.

RESULTS:
56 cases of C. difficile enteritis have been reported from 1980 to 2010; 48 cases were published since 2001. Median age was 55 years. 27 patients (48.2%) were female. 29 patients (51.8%) had inflammatory bowel disease (IBD) - Crohn's disease or ulcerative colitis and 20 patients (35.7%) had predisposing medical condition(s) that might lead to an immunoincompetent state. 33 patients (58.9%) had colectomy with ileostomy and 13 patients (23.2%) had other small and/or large bowel surgery. Thirty four patients (60.7%) received ICU management and 18 patients (32.1%) died. We categorized the patients into two groups, 38 survivors (67.9%) 18 non-survivors (32.1%). Significantly older age was noted in non-survivors. Median age was 48 years and 66 years, respectively for survivors and non-survivors, P < 0.001. There were more patients with predisposing medical condition(s) among non-survivors, (13/18, 72.2%) than among survivors (7/38, 18.4%), P < 0.001.

CONCLUSIONS:
C. difficile enteritis is still rare, however it seems to be increasingly reported in recent years. Surgically altered intestinal anatomies, advanced age, predisposing medical condition(s) that might lead to immunoincompetence appear to be at risk for developing C. difficile enteritis. Recognition of C. difficile infection not only in the colon but also in the small bowel may lead to improved outcomes.​
As for the oral contrast I do not see why it cannot be used NOW as a standalone treatment or if they insist they can take one more expletive xray as an excuse for giving it to her. And I'd like to see them argue with a Cochrane Review.

http://www.ncbi.nlm.nih.gov/pubmed/17636770

Cochrane Review 2007

Oral water soluble contrast for the management of adhesive small bowel obstruction.
Authors Conclusion: Published literature strongly supports the use of water-soluble contrast as a predictive test for non-operative resolution of adhesive small bowel obstruction. Although Gastrografin does not cause resolution of small bowel obstruction there is strong evidence that it reduces hospital stay in those not requiring surgery.​


----------



## QueenGothel

Patricia yes I have read these and have brought this up and requested ID.  ID has reviewed Rowans case and have given her surgeon a protocol.  They do not feel she is very sick and that the c.diff is controlled. They are trying to figure out now why the ileus or if she is having something else going on which could have exasperated the c.diff in the first place.  If things change or she becomes sicker they will bring them in for a direct consult. 

I am very concerned, but if ID doesn't think they need to be in hear looking at her I don't know how I am to change there minds.  This documents also states they were in ICU and Rowan has no symptoms of c.diff.  It doesn't smell, she is not dehydrated, she is pooping just not enough, no fever, and no pain.  I hope to god she continues to improve.

What do you expect me to do? I ask 4 different doctors for this consult and when she needed the consult for her last surgery last time ID was hear everyday.  Basically during her take down they just popped in and changed her meds and left from Vanco to Cipro for her infections. I don't know what your experience with ID has been but from my experience they guide us to the right meds to kill things off with minimal damage to the patient.


----------



## Patricia56

Please forgive me for yelling. It was absolutely not meant in any way as a criticism.

Clearly I am getting quite worked up about this situation long distance and apparently had misunderstood some aspects of the situation. 

It's a good thing I can't jump in my car and drive up there. You would probably not appreciate my presence and it would probably make no difference except to amuse your daughter.

"Look at the crazy lady with the purple hair Mommy! Why are the people in uniforms dragging her away?":dance:

Well as long as she's safe and you're sane that's what counts.

We won't worry about my sanity since clearly that is a lost cause.:sign0085:


----------



## Farmwife

Your doing great and we all love you guys.:ghug:
Have a good rest tonight and I pray your home before you know it.
Tell Rowan, Grace says get better.


----------



## AZMOM

Mary - We're all right behind you, dear. Ferocious IBD moms just periodically have to YELL. 

From what I can see you're asking all the right things and pushing appropriately. I know you must be exhausted and want her to be better. SHE WILL GET BETTER. 

Loads of <3,

J. 

PS I remember during our last inpatient isolation stint when Claire scowled at me and said,"Uh....no....I don't want to make another keychain!"  . Keychains, Christmas ornaments, whatever - that sweet girl needs to get better and go home!

Keep posting.....we'll keep praying - 

J.


----------



## Farmwife

Just wondering how the night went and how y'all are doing?


HUGS


----------



## QueenGothel

She is pooping a little more and passed some gas... Yay but still distended:shifty-t:

11am we go for fluoroscopy and contrast not barium.  Asked the doctor what the contrast would be and she mentioned Gastrografin made it a point to write down not to use barium. She hates Barium and rarely used it, says it dyes the intestines to much. 

She is NPO

More to come...fingers crossed we find an easy fix...XX


----------



## Farmwife

Happy to hear the news about the poo. I hope all goes well for the test and comes back clear.


----------



## Patricia56

Where else would people cheer over the passage of bodily substances, I ask you?

Yaaaaaaay Rowan!

Would it be appropriate here to chant something over and over like "pass that gas, pass that gas, pass that gas"?

A more substantive chant might be "Don't know when but poop again, we like it, we like it!" chanted to the rhythm of the football chant "First and 10, do it again, we like it, we like it"

Ok, I'll stop now. I think there's an imp living in my skull and someone let it out...

Hope all goes well in radiology and you finally have some answers that don't involve any drastic treatments.


----------



## crohnsinct

Or as we swim moms cheer "Gooooooooooooo!"


----------



## my little penguin

Yah that!!!!


----------



## AZMOM

Im with crohnsinct in the swim cheers. Instead of Pull, Pull, Pull like we yell during a good breaststroke race, we'll shout Gooooooooooo Push Push Push Gooooooooooooo. 

Thinking of you all - 

J.


----------



## QueenGothel

Well we are in the process now of doing the follow through study.  We are 3 hours in. Taking pictures every hour or so.  Her stool has turned to liquid and past a lot of gas just now. Funny she said mom "I gotta go"I said "poo" and she says "I got farts in there that want to come out!  RIGHT NOW" Either we are seeing the contrast pass or she got really loose and maybe the ileus is gone.  There is a new attending today.  She thinks it could be possible that Rowan had a food blockage that caused the c.diff which caused an ileus.  Lots of speculation so hopefully this follow thru will show us more facts.  I am just hoping for no narrowing anywhere.


----------



## QueenGothel

Her belly distention is completely gone.  She is a skinny mini again.  Weird she pooped 300 cc's and farted and now it is gone. Hoping for a miracle here.  Maybe food tonight.  Still waiting on doctors to round again.


----------



## izzi'smom

Sending loads of love your way, hon, and still hoping for the best!!


----------



## my little penguin

Fingers crossed


----------



## imaboveitall

Mary, excellent, I think she had a blockage that resolved. Thank God. :soledance: :thumright:
Will be interested in what they say about that and do next.

Much love.


----------



## QueenGothel

The preliminary results are back and show ileus not a bowel obstruction.  They order PPN/Lipids which I refused bc last year she was blowing veins every 3 hours from it.  I said since isn't NPO let's give her Nutren Jrs for nutrition.  They said she will probably become distended again. Which will happen regardless if we are feeding her.  I hate giving nutrition through the vein unless we have a PICC.  They said it was just for tonight so I said what a night going to do?  Maybe I am wrong but I don't want her to start getting poked all the time and be afraid of this hospital like she was last year.  She has finally got over her fear of doctors and nurses I don't want to ruin her.  So we are still doing IV Flagyl. She is only having soft food once again.  Any thoughts?


----------



## imaboveitall

My thoughts are:
TPN for "one night" makes little sense to me.
Why did she develop an ileus? 
I'd stick with the Nutren for now OR TPN via PICC longer term while they figure out if her sm bowel is having motility issues and WHY.


----------



## my little penguin

What about an elemental like elecare or neocate jr through an ng tube?
If she won't drink it or E028 splash is flavored juice box all three are amino acid based.

No pokes and lets a large portion of her intestine heal no soft food needed.
Nutrients jr is whole proteins so .... Hard for the intestine to absorb.
Semi elemental is easier ( peptamen jr) and amino acid easiest .
Hugs


----------



## imaboveitall

MLP, thanks, I thought Nutren was amino acid based.
Yes, an elemental formula for sure.


----------



## my little penguin

https://www.neocate.com/shop/p-24-e028-splash.aspx
https://www.neocate.com/shop/c-6-nutricia-category.aspx

http://m.abbottnutrition.com/product/elecare-jr?productName=elecare-jr

Good luck


----------



## QueenGothel

The issue is she won't drink the Peptamen Jr without me cutting it with lactose free ice cream.  I guess I could ask for NG feeds but they were trying to avoid it bc she will not talk or communicate at all with it in.  I will request Peptamen Jr and see if I can get her to drink some.  Maybe I can mix the Peptamen with the Nutren Jr?  

The Ileus was caused by the c.diff another rare response not seen very often.  I requested to get a couple Peptamen Jrs to try to get her to drink them.  Fingers crossed. Thanks all.


----------



## my little penguin

Also ask child life if they have buzzy bee.
It takes away pain for iv and blood draws .
http://www.buzzy4shots.com/

DS uses it all the time for Iv's so much so the infusion center at our hospital ordered some for the rest of the patients since they saw it in action


----------



## QueenGothel

Do any of these elementals come in vanilla flavor?  Of hand do you know?  I know Peptamen does...


----------



## my little penguin

Ask about the e028 splash they are in juice boxes and some kids actually drink them since the are flavored orange pineapple is not too bad or grape worth a shot for her to try to drink


----------



## QueenGothel

She won't drink juice at all. That is one hurdle I can't get her to jump and juice is kinda a no no for jpouch so I don't push her.  She loves the Nutren Jr and I was working on getting her to that level with the Peptamen but then we ended up here.


----------



## my little penguin

E028 is not juice at all but the flavor might help.
DS refuses all juice as well but is willing to drink the e028 on occasion.
Hope she will drink the peptamen - we found long straws ( places formula past taste buds) and plugging his nose also helped.


----------



## QueenGothel

They don't allow straws it increases her gas issues.  Gas being the cause of the distention, I am going to smuggle a couple peptamens in tomorrow.  I guess they can't get them tonight because nutrition is gone for the day. This way I do not have to wait.


----------



## my little penguin

What about a sports bottle with a soft spout?
Or hydration collapsible packs with peptamen in it no air and bypass the taste buds .
Without a straw I would blame her for not wanting it...


----------



## QueenGothel

She drinks the peptamen at home I mix it with LF ice cream.  I could take it in but do u think the ice cream would defeat the purpose or no?


----------



## kimmidwife

Mary,
Sorry to hear that she is still having issues. Caitlyn drank the peptamin jr with out issues as long as it was cold. She said it did not taste that bad. I agree with the others that TPN for one night makes Absolutly no sense. Keeping her in our thoughts and prayers!


----------



## Patricia56

well if the point is to use the particular formula then it would seem that mixing it with ice cream of any kind would as you say defeat the purpose. but it depends on the exact purpose.

i think you are trying to use a formula that is "elemental" in the sense that it has the big proteins broken down at least part ways.

So adding ice cream would add big proteins back in - especially milk proteins which I have been told are among the most difficult to digest.




using a covered cup with straw and super cold formula is usually the best way to deal with the smell problem.

I wonder if you could use something else with a strong scent like peppermint or juicy fruit gum to distract her from the smell. if adding it to the formula would be a problem maybe put it on her nose? I can see it now - a wad of gum stuck to her nose while she drinks her peptamen...:ylol2:

Sippy cup?


----------



## QueenGothel

Shocked they suggested the PPN to begin with being they haven't taken any blood in days. That's another thing they will poke her daily for that I would soon get a PICC put in or do nutrition through the NG.  She doesnt like the NG... Who does really? But at least it only takes moments to put it in. I would rather do that than ppn.


----------



## QueenGothel

She hates the flavor of juice, pukes it up.  Weird I know.  Damnit, I will figure something out when nutrition comes down tomorrow.  Something is gonna have to give.


----------



## Patricia56

It was my  understanding that giving PN through peripheral veins was not acceptable practice because it damaged the veins. The PN/TPN formula had to be delivered into the superior vena cava for it to be safe for the patient.

I am a somewhat shocked that they would want to do this even for 1 night to a 4 yo.

I completely agree with declining it. I assume her labs are not showing signs of severe nutritional stress that would put her in danger. However if that were the case then it still wouldn't make sense because you would want to treat that for more than one #@$ day.

Either make a case for needing it for several days/longer in which case you place a PICC or forget it.


----------



## my little penguin

Your right ice cream in peptamen defeats the purpose however some Gi ok adding pure sugar to elemental only to make it more palatable in the beginning so maybe you could ask about that since sugar is not a protein and D is not an issue. Adding sugar to the peptamen jr
If you end up with an ng I would ask about pure elemental such as elecare since it is so much easier on the gut.
Hugs to you and her


----------



## Patricia56

I agree about the NG vs. ppn. The risks of a PICC far, far outweigh the possible issues and risks or problems with an NG. As long as she is able to get adequate nutrition through her gut if it's delivered via NG then there is no reason to do ppn as far as I can tell.


----------



## my little penguin

http://www.practicalgastro.com/pdf/November12/Joshi.pdf



> 2012 November Volume: XXXVI Issue: 11
> Inflammatory Bowel Disease: A Practical Approach, Series #79
> Clostridium Difficile Infection in Patients with Inflammatory Bowel Disease
> N.M. Joshi, D.S. Rampton
> Patients with inflammatory bowel disease (IBD) are at higher risk of developing Clostridium difficile infection (CDI) than are those without; patients with both IBD and CDI also appear to have poorer outcomes than those with CDI alone. Here we discuss testing and treatment of CDI complicating IBD.


Just out in nov not sure it will help but.....


----------



## my little penguin

> 2009 March Volume: XXXIII Issue: 3
> NUTRITION ISSUES IN GASTROENTEROLOGY, SERIES #72
> Enteral Feeding: Should It Be Continued in the Patient with Clostridium Difficile Enterocolitis?
> Mark H. DeLegge, Amy Berry
> The authors ask, "What evidence is there to support withholding of enteral feeding in the patient with C.diff?" They answer, "For now, there is no good physiologic reason that EN should be withheld in patients with active C. diff enterocolitis without clinical signs indicating that the clinician should do it."


http://www.practicalgastro.com/pdf/March09/DeLeggeArticle.pdf


Stuff about nutrition with cdiff
Again not sure if it applies


----------



## QueenGothel

I think the main issue is the ileus.  In regards to her nutrition I now think a GI could help better to figure out the nutrition factor.  Does an ileus slow absorbtion or anything?  They might have a logical reason, but they didn't share it so I declined the PPN.  Last time she had PPN she was covered in bruises and blowing veins every.3-6 hours.  So not a good plan.

Thanks for all the suggestions!  Much appreciated!


----------



## my little penguin

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2678143/

This explains paralytic ileus and why not to use EN--- at least from what I understood - mainly a paper on how paralytic ileus can be avoided post op... But you get he idea of the complications etc..,


----------



## QueenGothel

How the hell is this still an ileus.  I am so confused.  WTH is going on with my little girl? Tomorrow is Day 7


----------



## QueenGothel

Farmwife I totally get what you mean by she doesn't act sick so we aren't very worried.  She is completely normal beyond the distention.


----------



## QueenGothel

I think it is time for the big guns oral vanco with IV Flagyl. Will discuss with the doctor tomorrow.  I am home tonight so unfortunately I probably won't be there for the early morning rounds. Ugh!  Reading, studying, and frustrated completely. Will try pushing again for the ID and GI consult we do have a new attending Surgeon and she was the one whom did bedside surgery to remove Rowans omentum so I am hoping she will take what I say and run with it.  Enough is enough, I want to go home already. 

I am totally stressed out and have the D myself and my germaphobia is coming out and I am worried I now have c.diff. Not to meantion reading all this stuff will totally freak give one the he-be-g-bes.  So gross!  I did eat quesadilla tonight so I am hoping my stink is that. wouldn't that just be my freaking luck.


----------



## QueenGothel

Hmm she is pooping a lot some water some chunks.  Maybe the ileus is gone and we can start feeds?  God I hope so.

Blood draw in the morning.  Hope nutrition is not too effected by the pooping. 

Good night all!


----------



## izzi'smom

Mary, I missed logging on yesterday. But an ileus IS an obstruction. Partial or complete, the passage of food is prohibited. You were right. 

Sending love and hugs.


----------



## QueenGothel

They were calling it a pseudo obstruction.  I am just glad things are moving again.  Which does happen with c.diff though people are usually much much sicker looking and usually are in ICU.  Maybe I was right and the contrast moved it along? Regardless of who's right I hope she can eat today.  She is sooo hungry.


----------



## QueenGothel

We are introducing food today since she so well with Nutren Shakes yesterday.  The dietician (not a doctor) came by to drop her shakes and said she would drop off a elecare vanilla to see if she likes it.  :dance:


----------



## my little penguin

Woohoo!!!
Be prepared vanilla elecare made my tongue revolt but worth a shot in case she needs it


----------



## my little penguin

Oh ask about adding Hershey's syrup to it no intact proteins just sweetens it up a bit


----------



## QueenGothel

Dietician/nutritional doctor came by and said elecare would not be covered and is very expensive.  $60 a can. Is going to drop off some PediaSure Peptide said it tastes better than Peptamen and to give it a shot.  She thinks my adding the ice cream does defeat the purpose also.  

She is eating and pooping and passing gas.  If all keeps going well we are going home tomorrow morning.


----------



## QueenGothel

Blood test are in and all is normal.  Metabolic panel is perfect glad I refused the PPN.


----------



## imaboveitall

Awesome to hear, little star...:medal1: doing better...

Pediasure Peptide is what V uses. It isn't elemental, not as "broken down" as Elecare or EO28. 

Will be checking on you two often :kiss:


----------



## Johnnysmom

$60 a can!!!!!!  What is in that stuff?

Glad to hear things are moving in the right direction.  

((((Hugs))))) to you Momma and hoping you will both be home tomorrow!


----------



## izzi'smom

Infuriates me that money is an issue here. *&$@# insurance companies. Glad to hear she is faring better and you continue to be in my thoughts.


----------



## upsetmom

Glad things are finally going in the right direction...you take care of yourself too...:hug:


----------



## Farmwife

HUGS
I hope you get out tomorrow.


----------



## my little penguin

Hugs glad she is doing better.
The "can" she is referring to is a powder can so it makes a lot of serving so about the same price as peptamen just not ready to feed.
http://m.abbottstore.com/abbott/product/detail.do?categoryId=2090262&itemId=56585


----------



## Patricia56

Glad to hear your news. Hope to hear more of the same.


----------



## QueenGothel

They said she is tolerating the Nutren well bc her nutritional numbers have improved since she came in.  They think they will do even better with the PediaSure Peptide.  She liked it and I didn't have to add ice cream.  Good news not distended but not really pooping but that could be a good thing that she has slowed down and is not bowel dumping anymore. They switched her from IV Flagyl back to oral Vancomycin. No IV tonight either. She is thrilled to not be hooked up to it.


----------



## Farmwife

Hugs to you and Rowan.

Have a good night sleep and sweet dreams little Rowan!


----------



## QueenGothel

Home tomorrow.  Shockingly this was not a very scary hospitalization for Rowan only two IV pokes and two blood draws and lots of X-rays.  She was a real trooper!  She is pooping normal now, having some burn but once we get to our bidet I think she will be happy again!

:ghug: Thanks for all the help with figuring this mess out.


----------



## momoftwinboys

GREAT NEWS!!!!  Home before her birthday and Christmas!


----------



## imaboveitall

:mario2: :hug::yoshijumpjoy: :jokercolor::  :cookie: :sheep: :clown: :Flower: :applause: A parade of cute emoticons that I like 
Well done Mary and Rowan the :medal1:


----------



## my little penguin

Yippee!! 
Enjoy your trip home.


----------



## kimmidwife

Hi Mary 
Just checking in to see how Rowan is and hoping you guys are home!!!


----------



## izzi'smom

I have my fingers crossed you are all home as well for Rowans BIRTHDAY this week...sending happy, healthy thoughts!!


----------



## DustyKat

I hope all went well for Rowan and you managed to break free! 

Sending loads of love, luck and healing thoughts your way...:ghug::heart::ghug: 

Dusty. xxx


----------



## Tesscorm

Hope Rowan's continuing to do better and you are both home!! :ghug:


----------



## QueenGothel

Ropunzel has left her tower and is safe at home with the King and Queen:queen:


----------



## Farmwife

:dance:YA!!!!!:dance:

Long may she raine and live happily ever after!:kiss:


----------



## crohnsinct

Awesome News!  So happy for you both! 

But hey!  what is with the glamour shot avatar?  Are you trying to make the rest of us look bad?  You look so sweet and angelic...not at all like the foul mouth ball vice toting thug we all know you are...I am definitly going to have to remove the makeup less car tub hideous picture of me now!


----------



## QueenGothel

Don't let the makeup fool you.  I am still the foul mouthed, vice toting, :devil: 

The devils biggest accomplishment was convincing the world he didn't exist!  lol


----------



## QueenGothel




----------



## upsetmom

I'm glad your girls finally at home....:ghug:


----------



## Crohn's Mom

That's hysterical Mary! LOL

So glad she has made it home! :hug:


----------



## my little penguin

woohoo!! for being at home


----------



## izzi'smom

LOVE your new avatar too.  Glad she is home!


----------



## Tesscorm

So happy Rowan's finally home!! :banana:  :banana:

And, agree re the picture - great picture!!! :thumright:


----------



## QueenGothel

Rowan is still pooping and all but is kinda distended again granted my mom had her so she probably ate a lot.  The weird thing is she is having formed turds? Could this be from the vanco.  I know it sounds crazy to think this but she had formed turds while on Cipro last August.  Maybe it is the Florastor going to titrate her to one a day instead of the recommended two.  No loperamide going in or slower downers.  It is just odd.


----------



## QueenGothel

Her belly is still distended and it hurts her.  I might be going back into the ER tonight or clinic tomorrow morning.  Ugh.  Her birthday is the 20th.  Something is just not right still.


----------



## my little penguin

Hugs .
Sorry to hear she is still having trouble .


----------



## QueenGothel

She just passed a ton of gas going with liquid diet tomorrow.  Wtf?  Enough is enough already.  Geez Louise! 

Dustykat does anyone know if PO Vancomycin can cause constipation?  She is passing formed stools. With a jpouch... Huh how is this even physically possible? She was a constipated UCer and now a jpoucher.  Doesn't Jive!  HELP!

C.diff, no colon jpoucher on antibiotics and having formed stools without any other meds. Is this even physically possible?

Should I start a new thread?  Where should I throw this one?


----------



## Catherine

Maybe Susan2 would know.


----------



## Farmwife

OK, I'm been meaning to type this.

I was told by ID at Devos that IF Grace tends toward constipation (which she does now), that might cause a breeding ground for c diff again. Make sense, they told you the same reasoning. However, when I told the ID nurse she has NO diarrhea, the nurse said IF the c diff is in the upper GI track, she might not have the runs. So I was under the impression you can get c diff ANYWHERE in the track.
Can you call ID at Mott's? Talk to them directly. Maybe demand a meeting?

 :shifty-t:But this was  ID at Devos telling me, maybe they know more since more Michigan State fans go there.:thumleft:

:lol2:

We might be in the same boat. Grace has taken real ill and we might be off to the hospital.:yfaint:


----------



## QueenGothel

Well that makes sense about the constipation.  Her distention has gone down completely in her sleep. I am avoiding gas /constipating foods today.  Bc she never has formed stools I was feeding her the normal foods bananas, mash potatoes, Rice Krispies, cheese, Milk.  So today Idk what I am doing but we are winging it lots of nutritional shakes are gonna be pushed until this thing is gone.  I hope to god it doesn't show it's ugly head again.  I really don't want to do FT, it is a fight I don't want to have with her surgeon.  I just have a feeling they are not going to be in support of it. Fingers crossed and praying.

Farmwife, I hope she is feeling better today and makes you feel like your nuts like I feel this morning.  I have a feeling though Rowans distention will be back this evening.


----------



## kimmidwife

Mary,
Thinking of you guys! Hope things settle down for her birthday and Christmas!


----------



## QueenGothel

Called the clinic still pooping but no farting going on and her belly is hugely distended.  They told me to glove up and try to manually release it.  It didn't work out, she called it a nightmare.  they don't think she need to come in and yes her birthday is tomorrow. They are contacting her surgeon. 

Talk with the surgeon about FT though she doesn't know much about it is looking into it further and is going to talk with some colleagues about it. I told her I would like it to be a plan B if this doesn't start resolving quickly and before they want to explore via OR.  She doesn't think it will get to that point and I hope to god they are right.


----------



## my little penguin

So sorry things are not moving along.
What is FT?


----------



## QueenGothel

Fecal transplant, they do them for refractory C diff, not as an initial treatment.  Why?  I don't know bc the success rate is higher than a treatment of vancomycin.  Granted the subjects in the study all also have a colon.  Very scared and completely frustrated with her current distention.  I hear bowel sounds which is a plus but the gas is completely stuck.  I have been exercising her and marching in place, downward dog yoga poses and no gas is coming out. Gave her an apple which is not on our normal list hoping it breaks something through.  Stinks bc now we are skipping the Peptamen bc the nurse thinks it might cause excess gas, she is double checking this factor.  Idk how to get the distention down.  

I am officially the worst mother ever bc I just yelled at her like a psycho bc she was refusing to do the yoga stretches with me. Had to say ok go get dressed and we can push an NG tube down your nose and get it out that way then.  Didn't help the situation and was poor judgment on my part.  She needs to understand I do these thing to help her not punish her. Not to mention all the crying just added more air to the distention. Seriously hating everything at this point.  I need a break through.  Something gotta give. Just Fart already. Ugh!  All I seem to do is regret lately, I have reached my breaking point I fear and don't know how to get back up from it.


----------



## Farmwife

Devos Hospital is doing these!!!!!
Grace's GI said when we first went there that he sees great promise in this FT  treatment.

You might want to think about crossing the state my friend. We'll be there on the 27th.


----------



## Farmwife

MARY :kiss:you've been from hell and back. Not just this but all of it. You thought it was finally getting back to normal. You thought you could breath again.  Give yourself time and Rowan also.
You'll get answers soon. :heart:This to shall pass.:heart:


----------



## QueenGothel

Yes I informed Rowan surgeon about Devos and Cleveland Clinic doing them. But the issue is these people also have a colon, the anatomy is different and idk if they are willing to go that route. It hasn't really been used in jpoucher especially not pediatric jpouchers. . And is only in cases of repeat c.diff relapse, where this is her first diagnosis.


----------



## QueenGothel

Yay for gas!  :stinks: thankful some came out.  Hopefully it keeps coming out now that I got her stools soft again!  Fingers crossed I have don't something right today.


----------



## Farmwife

Ya for gas.

Your right, you have to have it repeatably. In one of your studies you put on your thread for c diff it made mentioned to the pulse or tamper method for the drugs.
Do you know more about this?


----------



## QueenGothel

No not much, her surgeon said she might want to do a taper they usually do not do repeat c.diff tests if there are no symptoms following the treatment.  But Rowan case is not normal and she wants to do both toxin and antigen cdiff testing and if either come up positive she will want to do a taper of the Vanco.  

She just passed more gas!  Yay


----------



## Sascot

Sorry to hear you are struggling.  I'm glad she is managing to pass some gas, hope it continues.  I hope you manage to get some down time, so you can try to relax.  It is so hard when it is one thing after another.  Hope you mom is doing alright too.


----------



## my little penguin

Can she swim at the Y or some where to get those legs / gut moving?
Or play in the tub kicking with supervision???


----------



## QueenGothel

Yes she needs a bath tonight so we will give that a go.  She is playing her fisher price bike riding game now.  Hoping the activity will help her.

My mom is doing surprisingly well after this lipotripsy kidney treatment.  Her pain comes and goes as she passes the stones. 

My Aunt is in the hospital with a diverticulitis episode and on Friday my uncle is having his ileostomy take down, good news there his cancer screening came back good.  They are hooking the colon back up now that the cancer has been removed.

What is will all the gut issues in my family this year.  Crazy!


----------



## Tesscorm

Wow, Mary, you have had so much going on...   I really hope you manage to get a bit of rest for yourself and that Rowan just simply starts to get seriously better!!!!  You've been such a great mom and an inspiration to everyone!!  You certainly deserve some 'down' time and the chance to just enjoy Christmas!!!  Thinking of you and sending lots of wishes that things improve all around!!! :ghug:  :ghug:


----------



## QueenGothel

Oh sometimes I think I could just snap.  Luckily I don't really feel anything anymore.  I rarely cry, just numb now.  Probably a good thing.

Just got the call my aunt is having a colonoscopy and if they see what they suspect they are going to remove the portion of her instines that is causing the trouble.  She is at a rinky dink hospital.  Not really comfortable with that.  I am sure the surgeon are good at what they do.  I just like big hospitals in case weird shit happens, you have access to everything you might need.


----------



## QueenGothel

I just found this:

vancomycin Side Effects


Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common
Abdominal or stomach pain
back pain
bitter or unpleasant taste
*excess air or gas in the stomach or intestines*
headache
mouth irritation
passing gas


----------



## Farmwife

Happy birthday to Rowan!

Have a great day!!!!


----------



## crohnsinct

Happy birthday rowan!!!!!


----------



## QueenGothel

So what is the best way to avoid this gas issue?  GasX, tums, Enzymes? All of it? lol. She is so happy to be five?  Thanks all!  She is a little bummed her dad has to work until 8pm.


----------



## Farmwife

Grace was on ADULT- GAS-X since 1. I can't tell ya it worked all the time but some.
I was told Beno is the best and it's natural. Never tried it though!
I was told NO tums for Grace. I forget why? Sorry


Any birthday plans for the princess?


----------



## Catherine

Happy birthday


----------



## upsetmom

Happy Birthday Rowan...:bdayparty:


----------



## QueenGothel

N real plans today we are baking cupcakes and laying low.  Her party is tomorrow bc her dad has to work late tonight. She is wearing all of her fancy clothes, jewelery and a paper birthday crown on her head. Her teachers from preschool came by to see her and give her a Christmas present today.


----------



## QueenGothel

We have Beano but I bought some called Enzymedia Digest gold and it is supposed to help break everything down.  Where Beano is for veggies and beans I think which we don't eat.  I will give it a shot.  We have adult gasX around here somewhere.


----------



## imaboveitall

Mary, The Saint has used fecal transplant and said he had success with it for refractory c-diff.
Without a colon though...I cannot say. 

I wanted to share with you that when poor V was dying from starvation, literally dying, I YELLED at her because she would not take sips "one every five minutes at least" of Pedisure through a straw.
I was freaking out, sitting by her bed with this drink and straw she was too weak to HOLD the glass, I was timing it by the clock and she could NOT DO IT and I went nuts. I also threatened her with an NG tube, how bizarre that seems now :confused2:

I also dragged her to a child psychologist for a psych eval when she first stopped eating. She was so weak she was lying in the chair at the psychologist's office. To this day she is insulted that I thought she may have an eating disorder.


----------



## QueenGothel

Glad I am not alone being mean in moments of desperation.  

Rowan distention has came and gone and came and gone. So I am just feeding her normally and giving juice to keep her soft.  She is drinking the Peptamen Jr straight now.  Thankful for that too. 

I haven't completed my Christmas shopping, and with Rowan on contact precaution I am having a difficult time finding time to get this done.  Not to mention I am really not in the Christmas spirit anymore.  Kinda stinks.  I didn't buy anyone anything really last year bc we got out of the hospital just before Christmas.  I can't do that twice for all my family has been so supportive.  

My uncle is in surgery now for his takedown and my aunt has to get better with her diverticulitis and schedule to have a small amount of her lower colon removed to avoid future issues.  They will both be on antibiotics and my family want me to attend Christmas Eve party.  I am a bit uncomfortable taking my kid being that she has c.diff 

I don't know what I am going to do.  My sister says she would designate a bathroom for just Rowan.  I am still nervous I don't want someone else to get sick.  This c.diff is tougher than they all think it to be.


----------



## QueenGothel

The Florastor seems to be giving her a belly ache.  I don't know what to do.  Maybe use less and titrate up?


----------



## Farmwife

Interesting??? Grace used it but she was OK. However, she's been on probiotics most of her life. Next time can you cut the dose in half? Remember there are other brands with Saccharomyces Boulardii in it. That is the strand you NEED for c diff.

I wanted to let you know my new GP for Grace said since she has had c diff in the past to always keep her on SB if possible. This strand also helps to keep yeast a bay which Grace needs. The brand I use is a lot cheaper than Florastor and the GP knows where it come from.

Did Rowan have a good day for her b-day?


----------



## QueenGothel

Yes it was good. Uneventful!  Which is awesome.  We are having a small get together again tonight with DHs side of family.  We are going to do a cake again on Christmas Eve for my side. My house is too small for 21 people to try to be comfortable in.  Planning something big for both kids in January so long as the c.diff goes away! Probably a pool party for Livanas 3rd.  Poor kid has never had a party or cake bc we have always been either in the hospital or she has been ill.


----------



## kimmidwife

Hi Mary 
I hope Rowan had a great birthday. How is she feeling today?
:bdayparty::bdayparty:


----------



## QueenGothel

She is feeling well.  She is kinda outta control running around like mad.  I have a headache so I am trying to cope.


----------



## imaboveitall

Hey Mary I meant to compliment your avatar photo. So pretty.


----------



## Dexky

Mary, so sorry I've missed all this!  Glad to see Rowan is driving you crazy though.  That's what she's supposed to be doing at 5.  Hope things continue to improve for her


----------



## DustyKat

How is Rowan going Mary? Are things settling for her at all? 

Thinking of you, always. :heart:
Dusty. xxx


----------



## QueenGothel

She seems her old self. Tonight we have a Christmas Party at my sisters she is really looking forward to seeing all her cousins. The vanco is done on Tuesday.  So getting nervous hoping this thing is done and over with.


----------



## izzi'smom

How on earth did I miss all of this?? 
I am sorry...you have been through the wringer-again! Hoping she continues to do well and that you have a FAB time at your party tonight!! Hoping finishing up the Vanco does the trick as well...and happy belated bday, sweetie!!


----------



## QueenGothel

Izzysmom she loved her card.  Thank you! Let Izzy know!  Happy Holidays!


----------



## Susan2

Sorry, I missed this tag - the run up to Christmas has been frantic. 

Did you end up going to ER? If so, did you find out anything? And how is Rowan now? I hope that she was OK for her birthday.


----------



## QueenGothel

No we didn't go I found out excessive gas can be a common side effect of vancomycin.  I started feeding her digestive enzymes and it helped a lot.  She doesn't have the formed stools anymore either.  She ate two bananas today. :dance:  Merry Christmas!:dance:


----------



## DustyKat

So fab to hear that Rowan is doing well Mary.  I so hope things stay settled for her and you are well and truly on the better end of things again! :hug: 

Merry Christmas. :heart:
Dusty. xxx


----------



## my little penguin

Enjoy your Christmas


----------



## QueenGothel

The minute I say something positive... It's Christmas and she has a fever 103.0 just gave her Tylenol she is eating a Popsicle in bed.  Complains of belly pains all day long.  Vanco was supposed to end today.  Gave her Imodium today it did nothing to help her output.  Thoughts anyone?


----------



## my little penguin

Normal kid stuff maybe 
Does it hurt to swallow???
Throat sore?
Strep is going around???
Hugs


----------



## QueenGothel

Idk.  I am doubting it because she hasn't been anywhere to catch it anything, being on contact precaution, yesterday we did go to my sisters house where there was a ton of kids but she spent most of her time in the bathroom with Diarrhea. If the Diarrhea symptom would have started today I would say maybe a bug.  I just don't think so.  I think her poop looks like c.diff poop for the first time.  No smell but I can't thicken it up at all with Loperimide so.  I was going to call the on call but you know I will get a resident that wants me to rush her in.  Worried I should go but don't want to sit in an ER to get sent home. Not to mention all the bugs going around in there for sure.


----------



## Farmwife

Relapse is common with c diff.:voodoo:
Grace had a couple relapses.
Is she passing gas still?
Is she bloating?



:hug:


----------



## QueenGothel

Not bloated at all the opposite actually.  Called the doctor, they said to bring her in they want to keep her overnight for hydration.  Off to the ER we go!


----------



## Farmwife

Drive safe. My son was at the ER today too. At least the nurse were sweet and tried to make every one smile. Keep us updated.


----------



## Johnnysmom

Oh Mary!!!

Can't you guys catch a break??  I am so sorry.  Better to be safe, and to get it checked out.  Hang in there.  

((((((Hugs))))))


----------



## AZMOM

Big hug Mary. Love your hearts........

J.


----------



## izzi'smom

Sending you love...and hoping you don't have to stay


----------



## DustyKat

Oh my goodness Mary...:hug::hug::hug: 

I hope Rowan will be okay :heart: and whatever is ailing her will be easily treated. Sending loads of healing thoughts your way! 

Dusty. xxx


----------



## QueenGothel

Of course we are just sitting here.  They havent even started her IV or bolus.  Annoyed but trying really hard to be nice just bc it is Christmas.  I fear my naughty side might make an appearance.  Grrr...


----------



## Farmwife

Sorry to hear that Mary. My hubby and son got in the ER right away up here but then again.......
We're all State fans up here!:ytongue:



I hope your in there now and Rowan is back to normal soon.


HUGS


----------



## QueenGothel

Oh we were in a room str8 away.  IV started, bolus going in. X-rays taken and poop sample sent. Waiting for her to pee.


----------



## AZMOM

Thinking of you and your seeet girl, Mary.


----------



## QueenGothel

Waiting for the doctors to round.  They are testing for ova and parasites today also doing a stool culture. There was blood in her stool just now.


----------



## Tesscorm

Oh Mary, I'm so sorry to hear you've had to take her back to the hospital!    Poor kid (and you)...  just sending lots of hugs!!!  I hope they can determine the cause and get her feeling better (and home) quickly!!  :ghug: :ghug: :ghug:


----------



## Farmwife

Oh Mary I was hoping for good news. HUGS

Devos told me that c diff can cause ulcers wherever the c diff is attached. Maybe that's it? I'll check back later. Got my hands full with my little girl.


----------



## QueenGothel

Oh we are so going in that bubble when we get home if she has something else.  Totally sick of this... Home schooling might just be what I have to do.

Good luck with the clean out.  I hope scope goes well and is uneventful with a clear dx.  What time is it scheduled for?


----------



## kimmidwife

Sending hugs to Rowan!


----------



## QueenGothel

Well they are testing her stool for pretty much everything that might cause diarrhea.  Tomorrow flex sigmoidoscopy in the am so NPO at midnight.  If everything points to c.diff they are going to send us home with specific instructions for at home fecal transplant.  ID recommends it highly.  Hmmm they really got ID involved quickly this time.


----------



## my little penguin

Hope things get undercontrol quickly


----------



## QueenGothel

C.diff came back negative!  Shocked completely as they are.  Now wtf is going on?


----------



## crohnsinct

I have no ideas and am total awe of all you handle and the way you handle it.  Praying that 2013 is a completely boring year for you and little Rowan...at least health wise!


----------



## Johnnysmom

Are they satisfied with the result of the testing?  i read the testing that takes days is much more reliable.  That the quicker tests are not.


----------



## my little penguin

Yay for no cdiff .... But
Ugh


----------



## Farmwife

I'm with Tiffany, it's so confusing with c diff. I was told you can't test c diff again for 6 months because it will always show up positive.


How is she doing now?


----------



## izzi'smom

Mary, UGH!! I can feel your frustration...I am sending loads of hugs and wishing her well in the worst way! I was told you have to retest up to 3 times to be confident of a - c diff culture...and I have also heard that it should show up + for 3 mos. Maybe this was not the toxin test though?


----------



## QueenGothel

They took two different samples one in the ER and the other when we got in our room 3 hours later. It was an accident I am glad that occured. Honestly I am shocked completely, and a little worried, and a little happy all at the same time.  I guess that makes me a wreck... lol

Yes I had 2 different ID doctors tell me it would be positive.  To not be surprised. It always is they said. Her doctor felt we caught it so early bc she had no symptoms in the beginning.  They said we will run it just bc of protocol for contact precautions.  They are testing for many other things are also planning to take the biopsies tomorrow during the flex sigmoidoscopy.  

The doctor said this all could be cause by the vanco.  But it doesn't explain the fevers.  Her blood work is pretty normal beyond a little dehydration that is fixed now.  

Just praying now for no one to breathe a crohns to me tomorrow.  I will honestly have to be committed if anyone says that to me.  My mind can't take anymore I fear.

They just came in and are adding more stool samples for rotavirus norovirus... Etc.

Thanks all, will keep in touch.


----------



## my little penguin

Is Gi back in or is it only ID?


----------



## kimmidwife

Oh my goodness Mary that is a surprise about the cdiff. Is there any possibility that the Vanco could cause a false negative? I will be thinking of you guys and sending good thoughts your way tomorrow.


----------



## QueenGothel

Yes I would say it is very possible the abx is causing the negative, she is on IV Flagyl and PO vanco still.  Just got blood cultures taken bc she got another fever?  Also got a in room chest X-ray tonight.  They have tested her for almost everything but a UTI and I am having trouble getting her to pee in the cup, I might have them cath her.  I don't want to but she is not cooperating.  The last time she got a UTI she had high fevers from it.  Her pee is cloudy looking.


----------



## kimmidwife

It is hard to tell with pee by visualization. Hopefully it is just a simple uti that would be nice. It sounds like they are doing a good workup and everything they should do. Hopefully they will get answers fast. Remember if it is something viral antibiotics won't help the fever. Even though she has not been around others that much she could have picked something up her last hospital stay. Sending you hugs. I hope they get some answers fast.


----------



## QueenGothel

Mlp, Only ID and Ped Surgeons.  Saw her old GI today, she didn't even blink an eye like she knew me.  It was kinda awkward.  Told the Ped Surg I would like some reassurance of no CD.  He didn't comply and felt the sigmoidoscopy would be all we need.  Still a little frustrated. I really don't have much fight in me right now. Feeling drained completely.


----------



## kimmidwife

Did the GI not remember you guys? That is weird. Anyway I hope you are able to get a little rest tonight.


----------



## QueenGothel

It was weird. She talked to me for 15 minutes asking how Rowan was just two weeks ago.  Maybe she was trying to get out of here.  We did get a huge snowstorm.  There is like a foot of snow on the ground and drifts everywhere.  I am sure it was more awkward for me and not her.  She probably didn't want me to corner her and talk again.  lol


----------



## kimmidwife

You are probably right she probably was scared of getting stuck in the snow. Well at least it snowed after you got to the hospital and you didn't have to worry about getting stuck.


----------



## Dexky

I hope you and Rowan got some rest last night Mary!  How is she today?


----------



## kimmidwife

Second to what Dexky said. How is she today?


----------



## izzi'smom

Me too! Me too!


----------



## Sascot

Sorry to hear you got stuck in the hospital again!  Hope they find out what's happening soon. Wish poor Rowan didn't have to go through all this, can understand why you feel like you've had enough!


----------



## QueenGothel

Well... They cancelled all the abx, bc it isn't helping. Just making her have severe diarrhea. She was up all night with D. Got two fevers.  Scope is at 2:30pm.  Spoke with the ID fellow and she said she is so happy she doesn't have c.diff.  I asked if the abx could cause a false negative and she said no the test is extremely sensitive.  So sensitive in fact that she thinks the first dx was a false positive. Doesn't think she ever had c.diff to begin with. Said as I did that an ileus cause by c.diff is an extreme case of c.diff and her symptoms or lack there of does not make any sense. She isn't leaving a stone unturned and really hopes to find something in the scope pointing to cause a blockage or narrowing that might have caused the false positive.  Happy to hear it from her but very pissed off at her doctors for not giving me the consult I originally asked for 2 weeks ago. :voodoo:


----------



## my little penguin

Hope it goes well today and they can figure things out.


----------



## QueenGothel

So they are testing her for c.diff yet again bc it was sent down in the wrong tube. Just doing another check bc it could effect the results.  I am asking for a GI consult.  If I don't get it I am going over their heads.  Done with this shit.  Got my vice.


----------



## AZMOM

I know you'll fight for your girl. Is she comfortable? 

Hang in there Momma!

J.


----------



## QueenGothel

Scope showed an inflamed pouch.  Cause unknown.  The plan is to remove the abx and give her Imodium and feed her and see if she improves.  This does nothing to explain the previous  so-called "ileus"

I guess they are hoping this clears on its own and that the inflammation was diarrhea caused do to over use of abx.  Doesn't really jive in my book.  They think the fevers could be caused by the pouch inflammation but to not treat it doesn't make sense to me.  Her X-ray was still very loopy so in my opinion not that they want it is we need a GI consult.

She is eating a little now and no she is not comfy.  They filled her with air for the scope. Lots of extra gas in there.


----------



## my little penguin

So Gi didn't do the scope ???

Did they take biopsies of the TI while in there since she just had ileus .
I am thoroughly confused.


----------



## QueenGothel

No Ped surgeons did the scope.  And yes they took biopsies but I don't know of what and they didn't explore at all.  I don't even know if they took pictures it was seriously a 15 minute procedure. I am demanding a GI consult for first thing in the morning.


----------



## DustyKat

Oh my goodness Mary...:ghug:...you must be beside yourself...:ghug: 

I hope you are able to get a GI consult ASAP and some clear and solid answers for Rowan. What an awful time she is having, bless her :heart: 

:hang:  Mary. You are doing fab for her. :hug: 

Dusty. xxxx


----------



## ForeverCrohns

I hope Rawan feels better soon! :hug:


----------



## kimmidwife

Mary,
I second Dusty I hope you get that GI consult ASAP!!!!! This whole picture seems unusual to me. How are her blood counts? Ask the nurses what her lab results are. Have they gotten back any of the blood cultures yet? I am thinking maybe the fevers are related to a virus and have nothing to do with the GI issues? Ask the ID people about that possibility when you see them. Keep going over to the nurses station and being a PITA until they get you that consult. (If it was me I would be there every 5 minutes). I know this has to be so frustrating. I wish there was more we could do to help. (how about borrowing Farmwifes rolling pin and chasing those doctors with it?)


----------



## QueenGothel

Well I told my whole entire story to the resident and he agreed that a GI consult makes sense.  Granted this resident has a soft spot bc he has UC. Agreed that the previous ileus dx doesn't make much sense, since they didn't follow there own protocols. The feed her the whole time. Said he thought maybe they found the c.diff and thought an ileus sounded like it was what they wanted it to be.  Then I just got the night time resident and he said they talked to the attending and he felt the GIs weren't going to do anything other than what they are currently doing.  I said oh really well I heard that 2 weeks ago about ID and they think it was a misdiagnosis of c.diff bc no one get an ileus from a mild infection.  All the cases report the patients were in the ICU. He then kept trying to change my mind with smooth talking... I pointed out that I felt she wasnt diagnosed properly last time and how possible is it that they give her contrast and miraculously her ileus went away.  I said I didnt make it a point to correct your paperwork but if that was what cures an ileus than omg we best get the word out.  I then said hey I am not trying to be right here I left and was happy the plumbing was working.  I know you guys were wrong and right now you dont know what is even happening. He kept trying to correct me... I said this is how I am feeling about this.  I am not going to let the ball be dropped again at my daughters expense you can either get a GI in here while we are here waiting for this flare or whatever is happening to stop and waiting for all the cultures to come back.  Or I can take her to another hospital all together and get another opinion.  I really do not want to travel to Cleveland clinic but I will if that is what I have to do.  I will transfer her tomorrow for a elevated level of care.  He than just said the attending will talk with me tomorrow about it.  F~*king butthole!  Grrrr so pissed off right now.  Have I mentioned I hate residents?


----------



## QueenGothel

I don't even know her blood counts bc they didn't even check them nor do they plan to tomorrow.


----------



## my little penguin

:hug:

I am in :eek2: that they didn't do blood counts and won't bother Gi
Is there a work around where you happen to call your Gi nurse explain the situation and ask for someone to take a peak?
Or did Gi drop her all together ?
I thought you were still considered a patient as long as it had not been more than a year since your last appt????

Really hope they get back into the game for her sake
If they don't want Gi do they have cause for all her symptoms .
Other than we would just do the same ... Ugh


----------



## Farmwife

Cleavland sounds good. I'll pick you both!


Hugs to you both!


----------



## QueenGothel

I know it sounds weird but the GIs here apparently don't deal with jpouchers ever unless the diagnosis changes to Crohn's disease.  They are very territorial about it also her surgeon actually has referred to Rowans anatomy as "her Jpouch"


----------



## QueenGothel

The nurse is trying to get the attending to come and talk with me now.  I guess he is still in the building.

MLP really your not kidding I could be at home and watching her get fevers and give her Tylenol myself.  If I leave with a dx of gastroenteritis I will go postal on someone.


----------



## crohnsinct

FW: ummm you do know Cleveland is a city right? 

Mary: still in awe!  There is pretty much nothing you could do ever that will make you come down from the pedastol  you are  on.  I want you as my daughter's patient advocate the next time I have to fight!  I hope you get somewhere with the attending.


----------



## QueenGothel

Yes I am aware of where Cleveland is.  I don't really want to travel 3 hours but I will if need be.  So very frustrated completely with the arrogance and the territorial pissing going on over here.

I read FW: as a foreward not Farmwife... lol brain fog.  It is the logistical analyst in me... lol


----------



## crohnsinct

LMAO!  Mary I wasn't asking if you knew Cleveland was a city...I am not worried about you at all.  It is the city hating farmwife I am worried about and all her bravado with" I will pick you u"p.  Pretty sure it would be the other way around!


----------



## Farmwife

Don't listen to her Mary. She was totally insulting you!:tongue:


:rof::hug::rof::kiss:


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## ForeverCrohns

I'm being treated in cleveland clinic if you need advise or help


----------



## QueenGothel

lol I just re-read and somehow completely missed farmwife's post about picking us up...  That is some funny stuff.  Cleveland actually would be a great time.  I went there for my bachelorette party and had a great time.  Lets make another road trip, who needs Chicago... If the shit hits the fan we know a good hospital we could go to.

Second c.diff test is in and it is NEGATIVE!  So we are officially going to be off contact precaution soon.  Freaking hooray for that.  I am thinking the using the Cleveland Clinic card as more of a ploy to get my way and get the GI consult.  Trying to avoid actually moving her and stressing her out.  If it happens it will be a transfer directly bc that is the only way to get something accomplished quickly. I learned this from Farmwife. I don't even know if they are in network... Ekkk.  I will still drop the ante down and hope they fold to my bluff.  HA HA HA (meniacal laugh)

I just don't really understand why they are not trying to treat this active inflammation.  What should I ask for steroid enemas? Entocort?  Something else? She is now refusing to eat and I am back to pushing the shakes on her.  These are my reasons for wanting the consult is I don't think it is their area of expertise, maybe they don't do jpouchers whom are not having inflammation but I would imagine I am not the only mom out there whom this has occurred with and wants their opinion.


----------



## Johnnysmom

Mary you are really handling this well.  I know you must be so frustrated.  I hope they can get their sh*# together so you don't have to go to Cleveland.  I know you will do whatever you need to do.  

(((((Hugs)))))))


----------



## ForeverCrohns

Steroids can make an infection spread if there is one


----------



## QueenGothel

Johnnysmom, I lost my mind months ago.  Thanks for the compliment of handling it well.  I can really turn on a dime. She isn't in distress like I have saw her before and believe it or not I am very used to living at the hospital now.  One thing is for sure they do take good care of us in regards to meeting our needs and making sure we are comfortable. 

I am thinking of asking ID for the Fecal transplant instructions anyway since we have destroyed her flora completely. I can't hurt and I would rather get it done as fast as possible since we wasted all this time dosing her with the vancomycin.


----------



## QueenGothel

ForeverCrohns said:


> Steroids can make an infection spread if there is one


Oh ok any suggestions for fixing the inflammation without 5asas for she is intolerant to them due to the rare side effect of rectal bleeding.  It could be the fevers are caused by her inflammation right?  Almost all the tests with be in by tomorrow to rule out infection, parasites, ova, roto, noro... Etc they tested her for pretty much everything they could think of.  And took cultures of every liquid.  I do have to say ID did run test on everything they could think of that could cause a fever and diarrhea.


----------



## kimmidwife

Mary,
I can't believe they did not do blood counts that makes no sense to me. When you see the attending please ask why they have not done them. They can tell at least if their is an infection if it new or old and how her immune system is responding to it. They tell this by looking at the different types of white blood cells. I am so upset for you! I wish I could come and pick you up and drive you to Cleveland myself!


----------



## ForeverCrohns

Myreinhard said:


> Oh ok any suggestions for fixing the inflammation without 5asas for she is intolerant to them due to the rare side effect of rectal bleeding.  It could be the fevers are caused by her inflammation right?  Almost all the tests with be in by tomorrow to rule out infection, parasites, ova, roto, noro... Etc they tested her for pretty much everything they could think of.  And took cultures of every liquid.  I do have to say ID did run test on everything they could think of that could cause a fever and diarrhea.


I went through a similar thing this month had partial obstruction which turned out to be severe inflammation .. All my test results came back negative for any infection .. Yet the doctor said if there was any kind of infection that wasn't detected, taking steroids would spread it and the problem will get worse. Just be careful because you still don't know exactly what's causing your daughters inflammation.


----------



## Twiggy930

Really wishing that you and Rowan didn't have to be going through this.  Hoping that you both get some relief soon and those docs get their acts together!

:hang:


----------



## QueenGothel

Well she just had a record amount of blood in this last BM and the idiot resident came in and was like have you checked her for fissures or anything bc a little blood can look like a lot of blood.  Ok, asshole trust me I know what a lot of blood looks like.   Grrrr:ymad: said with that being what it is I want a CBC ran in the morning to check her WBC and hemo.  He says I can talk with the attending in the morning.  O I could punch him in the face. 

I really might be going to Cleveland Clinic.  It is no longer a trump card.  I am thinking it might just be a better fit.  I will talk with the doctor tomorrow and see if they can talk me out of it with some serious ideas as to how to fix this.


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## Farmwife

Cleveland here we come! YA!

But I'm going to let you drive. I hate the big city!


----------



## QueenGothel

They do see peds at Cleveland a clinic right? :ybatty:  I am so mad I cannot even fall back asleep.  The heat vent is making an awful noise also!


----------



## Sascot

Wow, I don't blame you for being incredibly frustrated.  I also have a few issues with residents after getting the "she looks well" comment a few times, and there really isn't much else we can do (this after 2 tests in 6 months).
I hope you manage to get someone who will actually be able to help soon, whether that is at that hospital or in Cleveland.  Crossing all fingers and toes for you!


----------



## Dexky

I can't believe with all Rowan has been through, you're still having to fight as though she had no history at all!!  I guess 3 hours is doable if you finally find answers and a dedicated GI to take her(and you) seriously!


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## my little penguin

Rainbows babies and children's is the hospital in Cleveland .
It is part of the Cleveland clinic .
So they do take children.
http://www.uhhospitals.org/rainbow/services/gastroenterology

I know a irl friend whose child went there but no mention of an "Ibd clinic"


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## Farmwife

How about Cincinnati? The IBD clinic for kids is well known.


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## my little penguin

There is also nationwide in Columbus 
Wish it was easier for you .


----------



## QueenGothel

Well the Attending surgeon came in this morning and was very very pushy about not getting a GI consult from what I can tell he has no respect for them or their practices.  Said they will want to run bloodworm and all these tests... Like blaha blah blah... If your thinking she has Crohns Disease she does not.  I looked at her bowels yesterday and there was no sign in the TI.  Crohns is always manifested there first, especially with jpouchers bc believe it or not we know a thing or two and the small bowel really doesn't like acting like a colon.  I would have saw it in the jpouch.  I think we should increase her Imodium and feed her. If she won't eat an NG Tube will do.  I said well what about this inflammation what are we going to do about that, and he said we should get the biopsies back today and the rest of the cultures and we should be good.  He had an answer for everything and I felt like punching him in the face to shut him up.   Nt to mention was very loud and condescending. Finally after me what if...ing questioning everything he said would a GI consult make you happy???  I said yes it would and he said fine we will get them in here for you... hope she doesn't go anemic from all the blood they will want to draw everyday. Glad he will be gone soon and I get a new attending before long.:voodoo:


----------



## Farmwife

Myreinhard said:


> Well the Attending surgeon came in this morning and was very very pushy about not getting a GI consult from what I can tell he has no respect for them or their practices.  Said they will want to run bloodworm and all these tests... Like blaha blah blah... If your thinking she has Crohns Disease she does not.  I looked at her bowels yesterday and there was no sign in the TI.  Crohns is always manifested there first, especially with jpouchers bc believe it or not we know a thing or two and the small bowel really doesn't like acting like a colon.  I would have saw it in the jpouch.  I think we should increase her Imodium and feed her. If she won't eat an NG Tube will do.  I said well what about this inflammation what are we going to do about that, and he said we should get the biopsies back today and the rest of the cultures and we should be good.  He had an answer for everything and I felt like punching him in the face to shut him up.   Nt to mention was very loud and condescending. Finally after me what if...ing questioning everything he said would a GI consult make you happy???  I said yes it would and he said fine we will get them in here for you... hope she doesn't go anemic from all the blood they will want to draw everyday. Glad he will be gone soon and I get a new attending before long.:voodoo:



Who said this? You or the attending?

How's Rowen today? Any more blood?


----------



## crohnsinct

Oh Yay!  Then O doesn't have Crohns because her TI was clean!

I despise docs who are condescending and WTH is the problem with asking another doc to pop in for a consult.  How can they look at that little angel and let their ego get in the way of trying to give her the best care possible.  

ERGH!


----------



## QueenGothel

It was the surgeon that said it after he finally caved. He was a total ass. I did get the consult so at least I know we are leaving no stone unturned. Still cannot believe the fight I had with him... It was very rough too bc he woke me up to talk to me.  My brain was in a fog.


----------



## Farmwife

WOW! He is a jerk!

Hope all goes well.

Hugs


----------



## ForeverCrohns

He is a Jerk .. And he shouldn't wait for you to ask for a GI consult because his job is surgery .. He should be aware of what's the difference between both jobs! I'm glad you are going to see the GI finally :hug:


----------



## ForeverCrohns

I don't understand when doctors are so selfish that they don't think of their patients because he so self occupied with his pride! If he was in front of me I would :voodoo:
seriously!!!!!


BTW this is how you find doctors in cleveland clinic 

http://my.clevelandclinic.org/staff_directory/specialty_search.aspx


----------



## xmdmom

In my experience, being an ass is a common trait among surgeons.  If you're not one when you start you're surgical residency, the program makes sure you are by the time you finish.  In the past at least, surgical residency programs rewarded arrogance and obedience to authority rather than listening, empathy, or intellectual curiosity.

From what I gather, gastroenterologists do take care of pouchitis.  Is that the diagnosis?  And if so, is it considered acute, acute relapsing or chronic? The treatment recommendations vary depending on the category.  I apologize I am coming late to the thread and may be missing some important facts here.

Hope things will be sorted out soon and you two can get out of the hospital for good!


----------



## imaboveitall

Oh Mary...
I suspected c-diff was an incidental finding and not the source of her issue.
What a mishandling of the case. And they continue to mishandle...wow.

The inflammation is significant.
I hope to God she doesn't have Crohn's.
Will be watching.
Love to you guys :heart:


----------



## Johnnysmom

I will never, ever, ever, ever, understand why the hell a Dr. gets his/her ego wounded when someone is talking about the health and well being of their child.  You will calm down when your child stops bleeding!!!  If they were handling the situation you wouldn't  need to ask for a G.I. consult!  It's all a Jedi mind trick.  He knows you have every right to ask for a consult.  I don't know the inner territorial rules for patients but I would have thought G.I. would have been in charge of Rowan's care from the beginning.  

I am all for giving them the benefit of the doubt, after all they have had a lot of training and a ton of experience but they need to explain this to you with out the attitude.  What are they expecting to find from the biopsies?  The cause for the inflamed pouch?  

See how well you are doing Mary?  I am losing it and you have remained very composed. (Other than that comment about becoming an Ohio State fan.)


----------



## QueenGothel

I got my consult today and the GI UC guru feels Rowan doesn't have any current sign of Crohn's disease and that the surgeons are following proper protocols that are set by Dr. Bo Shen of Cleveland Clinic.  He said they follow the medical library and writings of Dr Bo Shen (stated that he was the man) and have done so throughout Rowans care.  They took the biopsies and no granulomas were found and the inflammation is typical of UC of the pouch.  Why it occurs is still unclear but he doesn't feel it required any IBD related treatments and should subside on its own with maybe some Cipro to help it.  

ID also came in and said they are done with their consult and are happy Rowan never really had c.diff and all the test they have ran are all negative so far they will continue to grow them for upwards of one week. Happy with the outcome.

She still will not eat they have upped her nutritional shakes and if she refuses to drink them she will get an NG tube.  She isn't complaining and hasn't had a fever in the last 24 hours. 

So yet another unexplainable hospitalization. The GI said that this is how pouchitis works and they are now just in the initial discoveries of how FT works for c.diff and how the flora is a major role in IBD.  He was sorry he didn't have anymore to add to give me releif from my fear, and hopes us the best. 

I have mixed feeling about everything.  She will end up bring released with the diagnosis of dehydration. I hate being left without a cause or dx. Farmwife I feel your pain. Probably going home tomorrow. Guessing here but so long as no more fevers happen it should happen.


----------



## Sascot

Sorry to hear that you never managed to get any real answers!  I hope she starts to feel better soon and the inflammation clears up.


----------



## QueenGothel

Being released tomorrow night. 86ing her IV fluids and going to PO Cipro and low dose of PO Flagyl, Bc of the doctors fear of both c.diff from the Cipro and the previous neuropathy issue which I don't think were real.  I think she was hallucinating before (last year) from the high fever/morphine and seeing her hands cracking. Going home tonight for the first time for some much needed rest.


----------



## Tesscorm

You certainly deserve some rest!!!!  Frustrating that they couldn't give you a more definitive diagnosis but, as long as she's feeling better...  it'll hopefully continue!!! :ghug:  :ghug:

Lots of hugs!!!


----------



## my little penguin

Rest then Bring her home soon


----------



## QueenGothel

xmdmom said:


> In my experience, being an ass is a common trait among surgeons.  If you're not one when you start you're surgical residency, the program makes sure you are by the time you finish.  In the past at least, surgical residency programs rewarded arrogance and obedience to authority rather than listening, empathy, or intellectual curiosity.
> 
> From what I gather, gastroenterologists do take care of pouchitis.  Is that the diagnosis?  And if so, is it considered acute, acute relapsing or chronic? The treatment recommendations vary depending on the category.  I apologize I am coming late to the thread and may be missing some important facts here.
> 
> Hope things will be sorted out soon and you two can get out of the hospital for good!


This was her first real diagnosis of pouchitis.  How it occurred and if Vancomycin caused it due the mis-dx of c.diff and the flora being destroyed.  I guess I should have asked this question. Here at her hospital the surgeons take care of all their jpouchers unless they change her dx Crohns.  In which case they usually reverse the pouch to an end ileostomy. That is just how our hospital does it.  The GIs were in completely fine with the surgeons and stated they will be doing her follow up care until she is 21 and maybe beyond.  Thanks. For the input.  When I explained to them that every jpoucher I know has a GI they said that doesn't mean they are more well versed bc most GI surgeons specialists are actually residents/fellows for an additional 7 years than a GI. Maybe it is bc these are GI surgeons with a specialty in GI and are not just general Ped surgeons. Blah blah blah.  Just glad she is feeling better.


----------



## my little penguin

Never simply


----------



## Dexky

I can't imagine this child:
Mary, mom to Rowan(4) Diagnosed UC (pancolitis) 10/14/11
Protocolectomy/j-pouch and ileostomy on 04/17/12
Take-down 06/24/12

Failed: Asacol, Canasa, Sufasalazine, Remicade, Flagyl

…not being worthy of a dedicated GI who takes the time to get to know her and you!  I just don't understand that!


----------



## izzi'smom

Completely outrageous that you've had to go through all of this crap, Mary. 
I'm glad that you finally got a consult but am saddened that you don't have a clearer picture. 
and I'm relieved to hear Isabelle doesn't have Crohns because her TI is clean. Phew!
I completely don't understand the surgeon. He seems terribly unreasonable and unwilling to listen. 
Hoping you are settled in at home soon. (((HUGS)))


----------



## QueenGothel

*The summary according to Mom*

I see a clear picture... this is it.

So just to clarify what I think went down and I might just write the head of the department.  I am a logistical thinker and I have to have this make sense to me.

Beginning of Dec Rowan was hospitalized for a possible food blockage, after testing positive for c.diff. I was refused a requested ID consult.  I was requesting this bc it just didnt seem right to me that she had c.diff never had it before and had not one single symptom of c.diff, but did have every symptom of a food blockage. This fact was ignored. Was told she had an ileus from the c.diff not a food blockage. This test was a false positive verified by ID 12 days after release and a new admittance to the hospital.  They verified that a c.diff ileus is such a rare thing and people die from this and are usually in the ICU.  This was not the case and this was their clear indicator that this was a false diagnosis. She was retested twice and it was negative both time.  (people test positive for months after treatment even when they are no longer infectious)  False positives are possible and false negatives are extrememly rare with the new rapid toxin testing. The Contrast from the fluoroscopy cleared her partial food blockage at her first admittance. The Vanco then destroyed her gut flora in turn causing her pouchitis which we are now treating with PO Flagyl and PO Cipro and Florastor following antibiotics with VSL #3.

Thoughts anyone?


----------



## upsetmom

:hug:...Mary my heart goes out to you and Rowan...yous have been through so much.

You truly are amazing...:hug:


----------



## izzi'smom

sounds perfect, . Mary. I would cc the hospital CEO just to be sure you get your message across. doctors that don't pay well together shouldn't be tolerated.


----------



## Farmwife

Sounds good Mary. Can you somehow get a copy of Mott's protocol on C. diff. I'm thinking it would state on when, how, why and what to treat c diff. That way you can show right from their own notes what they did wrong. Just a thought.


----------



## xmdmom

According to a paper by Shen, the pathogenesis of pouchitis is not entirely clear but "strong evidence suggests that abnormal mucosal immune response to dysbiosis of microflora in the pouch leads to acute or chronic inflammation."   We know vancomycin screws up the microflora but was there enough time to cause an immune response? I don't know. (BTW, his article was on ileal pouches.)


----------



## QueenGothel

Xmom, yes I cannot find anything on the misuse of vancomycin causing pouchitis but I can't find the use of vancomycin helping with pouchitis either.  We know it destroys the flora as all antibiotics do. I am a little perplexed that they were treating her with IV Flagyl in the first few days and it did nothing to help, granted she was also taking PO vanco and was having 17 bm's.  Also her bleeding could be from the biopsies they took bc the said the inflammation was not bad enough to cause bleeding.  We are seeing about a 1/2 tsp with bm's.  bm's are down to 5 a day.  No pain but she got a low grade fever last night so they said they would not release her today.   

Still going to try to get her released.  Bc I can give her Tylenol and push fluids at home.  Not mention getting her out of this Germy environment.


----------



## QueenGothel

Dang... It worked!  We are going home with the doctors consent!  Heck yes!


----------



## Farmwife

YA!!!!!!!
Have a safe trip!


----------



## kimmidwife

So glad you guys are going home! Hope Rowan is feeling better and you both are getting some rest. I think your letter is right on the money and I would send it to the head of department and head of hospital as MLP said! At least maybe you can affect some changes that will help the next child and prevent this from happening again.


----------



## AZMOM

One of my roles in my years in healthcare was serving as director of service Excellence for our hospital system. While writing your letter to the dept heads, CEO, etc is fine, it will likely land in the patient relations/customer service dept. 

I hope you don't mind but I took the liberty of looking up the patient relations info for Devos. That is the hospital right?

Here's the link http://www.helendevoschildrens.org/PatientRelations

Might be worth calling the main number to find out where your concerns should be mailed to get the ball rolling. I would ask their process, who reviews the concerns, how they will respond to you, etc. 

You know best what to do since its "your" hospital. I was just trying to help you get the biggest bang for your buck. 

I went through this when it took us six months to get Claires arthritis dx and watched our baby deteriorate before our eyes. We followed the "complaint" process and got the chief and the offending physician to agree to meet with us and agree to use Claires case as a learning experience. All I wanted was to prevent the crisis for another family.

Big hug - glad you're home!

Julie


----------



## DustyKat

Good grief, what a bloody circus!  

I cannot for the life of me fathom what the surgeons problem was with a GI consult. :yfrown: Rowan had surgery, but she will continue to need ongoing care at times for legacy that has been left to her GI Tract. This ongoing care is the realm of the GI not the surgeon. In the hospital setting they should be working in tandem with each other.  

I agree with J when it comes to lodging a letter with the hospital. I don't know what it is referred to in the US but here it is the comments/complaints department. 

So good to hear you are going home.  I hope things settle for Rowan and she is soon on top of things again, bless her :heart:

Good luck!
Dusty. xxx


----------



## QueenGothel

We were at U of M C.S. Motts, that fellow was really happy to discharge me.  I just want her medical records to read correctly. That is the part that angers me, is she had two false diagnosis's and she was treated both times with antibiotics she didn't need.  At least the first time it happened it didn't effect her life like it did, she ruined our Christmas.  Rowan just now played with her a Christmas gifts today.

But I will have to freshen the letter up.  I just was venting really to you guys.  I have to make it all more professional.  I wonder if the doctor even realizes she is being talked about here. I know the doctor meant to help my kid but it is the lack of empathy for her actions that were at the cost of my kid.  This woman made me cry telling me I was wrong.  I don't cry.  Just saying I don't usually feel much and it really messed with my mind and my kids gut.  She was so trying to get me out of there, she snuck in and checked on Rowan while she was sleeping to write her exit strategy this morning.  She apologized for not waking me for she knew I must've been tired.  It was my husband sleeping in the bed.  This woman has been avoiding me like the plague. When they delivered our good news about Rowans release she was SOOO HAPPY for us. It was the most fake thing I have ever witnessed.  I just looked at her and smiled and said I am just glad to know my kid never EVER had c.diff. She knew I was talking about her false positive.  

I Need a new smiley face that is a slap in the face. Hmmm... I'll have to find it.


----------



## AZMOM

Mary - Im so sorry. I had FWs thread on the brain and looked up the wrong hospital. Im wondering if I myself have strep so please forgive me for googling the wrong hospital. 

Hell hath no fury like a mother advocating for her child!!!!! Write your letter, find out their grievance process and work it . If you type "complaint" in the hospital search bar it should give you a starting point. The doc can't be better for the next kid unless she knows her mistake. You can't control whether or not she'll take it to heart but just maybe she will. 

The hospital should also have a process through their HIM (medical records) dept to amend medical records. It may be worth looking into if you feel what happened isnt adequately documented in the discharge summary. 

Most importantly, Im glad that sweet girl is home playing with her toys. 

Hugs, J


----------



## Sascot

Glad you are home - what a relief.  Always love that first night back in my own bed!
Definately a good idea writing a letter to the hospital, they shouldn't be allowed to get away with things all the time. They need to learn from their mistakes - hopefully they do learn and not just ignore!
Hope Rowan continues to feel better each day!


----------



## QueenGothel

We are back to belly distention and low jpouch output.  Wtf? I am so freaking frustrated.  I cannot get into another clinic without being an inpatient and doing a transfer.  Then I don't know if our insurance would even cover it without the doctor requesting an elevated level of care, this is what we did last time she had to be transferred.

Right now I have her on a clear liquid diet.  I can hear bowel sounds but again she is pooping out formed stools again, not very much but things are working.  I just now know the protocol for this and it is what I am doing.  Getting very pushy with the grape juice and Popsicles. She hasn't had much real food today.  A waffle, Yogurt, a couple Peptamin shakes, grape juice, Popsicles and a ton of electrolyte water.  

I feel like I am Bill Murray in ground hog day over and over and over again and it is another holiday evening.

She is not complaining, she is playing, smiling, hungry, making jokes.  Her belly is just huge like before when she had a colon with constipation huge.  Damnit I don't want to take her in.  I will hold off until the morning unless thing start to get worse.  I hope things just get better.  All they do for a bowel obstruction is clears for two days then they start their protocols.  Each time she improved. I think this kid can just never eat pizza again.  Same culprit and same food that she didn't chew.  I don't know why she does this with pizza.  Damn cheese!


----------



## my little penguin

Hugs
Hope things improve soon


----------



## my little penguin

One question:
Did they ever test for SIBO???
They may have but it would explain some stuff???

( not a doc just a mom  but maybe something to ask about if they didn't look at it kwim


----------



## QueenGothel

As in bacteria overgrowth? Well she is being treat with both Cipro and Flagyl so I would guess bacteria is an issue.  Do you have a link to the testing?  Looking now coming up short.


----------



## QueenGothel

Found it.. This?

http://www.siboinfo.com/testing1.html


----------



## QueenGothel

Her follow through was 3 hours transit time without a colon.


----------



## QueenGothel

She pooped 3 times so I know thing are moving.  Sent an email to her surgeon so hopefully she can get me into the clinic.  Or give her something for relief.


----------



## kimmidwife

So sorry to hear this Mary was hoping she was on the mend! I hope she is doing better and you don't have to take her in. No advice right now just wanted to send hugs and say I am thinking of you guys!


----------



## DustyKat

Oh Mary...:hug::hug::hug:

have you heard anything from the surgeon? 

Thinking of you, :heart:
Dusty. xxx


----------



## QueenGothel

She just responded telling me to titrate her Imodium to loosen her stools.  I haven't given her any since being release.   I wrote back letting her know I don't give it at all right now. So can't really adjust something I don't give.

She went from 17 BMs a day to constipation in 4 days. I really don't understand. She had this happen the last two times she was taking antibiotics.  I am just going to keep pushing grape juice and praying I guess. 

 I am not comfortable with this distention.  Her belly was huge it has gone down some during the night but it is even harder too than normal.  Before it was really soft compared to now.  She looks pregnant like full term pregnant. 

I have to feed her they have to give me something to help this I can't just feed her Popsicles and grape juice.


----------



## dannysmom

Oh Mary ... just catching up and so sorry Rowan is still suffering. When Danny was on vanco for 2 months (2 years ago) he also suddenly got much worse w/ D 20x a day & dehydration (leading to the CF mis-dx). I think he also ended up with a candida problem from it. I think your thoughts are correct.


----------



## xmdmom

Have you looked at http://www.j-pouch.org/  Not sure how useful it is, but you might connect with others who have more experience or ideas.  And if your doctors don't know, perhaps it would be worthwhile to see a j pouch specialist or have her records reviewed by one.  If Shen doesn't see kids  perhaps he could recommend a pediatric gi who does.


----------



## QueenGothel

She is apprehensive to give her anything to loosen her stools bc she was just released for dehydration and diarrhea.  I totally understand but going from 17 BMs to formed stools and distention is something I don't feel I can't wait on.  So frustrated with the lack of options.  I guess I can put her on a healthy diet, higher fiber than normal to see if that helps. Ugh! I can't even get her to eat it without a fight bc she is now use to the binding foods diet.  What the doctors don't realize is it is not easy changing a kids diet completely and get the calories in as we are supposed to.


----------



## QueenGothel

xmdmom said:


> Have you looked at http://www.j-pouch.org/  Not sure how useful it is, but you might connect with others who have more experience or ideas.  And if your doctors don't know, perhaps it would be worthwhile to see a j pouch specialist or have her records reviewed by one.  If Shen doesn't see kids  perhaps he could recommend a pediatric gi who does.


Yes I have and are currently doing all they do for constipation and or partial blockages.  Not a lot of parents on the site and only the same few people respond and this is my third time with the same symptoms.  Ugh!


----------



## Sascot

Sorry to hear about the distention/constipation. Not many ideas here, sorry.  Hope it settles down so you dont' need to go back to the hospital!!


----------



## QueenGothel

I am thinking I should increase her magnesium being she is not taking in the 2:1 ratio. She is only getting 280:50 right now with each Peptamin.  Hoping I can find a low dose so I can titrate as needed.  I don't know that much about magnesium.  David any suggestions would be appreciated.  Any thoughts anyone?  Doctor will not prescribe her anything and told me to control it with her diet with no real advice.

I wrote her doctor about adding the magnesium, still waiting for a response.  Regardless I just capsulated some coriander seed powder and gave her one.


----------



## my little penguin

Have you increased the peptamen ?
That can move things toward all liquid


----------



## QueenGothel

Yes I have all she is currently getting is Peptamin Jr, yogurt, Popsicles, electrolyte water.


----------



## QueenGothel

Contrast enema scheduled form Friday morning.  Ugh! Hoping to get some results. Unfortunately wont see the doctor until Monday though.


----------



## QueenGothel

Scheduled appointment after enema on Friday.  Talked with the nurse she thinks it sounds like a partial blockage might be a narrowing or stricture from all the scar tissue.  Recommends no food just Peptamin, yogurt, LF ice cream, pudding easy foods to pass basically until her study on Friday.  Still pooping a little no gas being passed just lots of burping, and distention still.  Playing the waiting game was given an option to bring her in via ER.  Told I could manage this at home unless things got worse... Vomiting, fevers, etc... (Sigh). Told her I probably will be seeking a second opinion and would like her to work out the logistics to the most common Jpoucher clinic she said there was Cincy and Cleveland both have great clinics.  Thoughts?

She is playing, running around acting normal.  Is this her normal though being in pain and pushing thru... Probably.


----------



## my little penguin

We love Cincy been there twice.
There colorectal surgery dept is wonderful .
They were going to treat DS for his prolapse  prior to dx
Gi dept is top notch as well


----------



## QueenGothel

:frown:If no BM we are going to go in tomorrow morning unless her symptoms worsen I cannot keep her here if her belly gets much bigger. Hoping for a poop soon and a new set of EYES:eek2:  I knew I should have asked for a direct admit today, I freaking knew it!  DAMNIT!:mad2:


----------



## kimmidwife

Mary,
It really sounds like you guys need a new set of eyes on her case. What are your options? If you take her t to the ER can you take her to where the other specialists are? I am sending you both hugs. I agree with you about being concerned with the distention. That much distention is concerning. Also burping is a sign that things are not moving in the right direction.


----------



## QueenGothel

My options are...

Request a direct admit tomorrow. Take her into her surgeons let them re-evaluate her.  It would be her actual surgeon this time, well starting Monday.  I like her and she is very conservative and has been emailing me all day talking about Rowans case.  Has a plan written up if we take her in. The one thing they have on their side is the attending they have right now I really like, I truly think he will listen to me and follow it thru.  Then when he is out Rowans surgeon is on for the week.  Contrast enema study is the plan.

-or-

If things go south before the morning. Take her in through the ER where she will be admitted again and xrayed and poked receive the normal stuff we have been doing.  Talk to the attending tomorrow request a second opinion wait for them to find out what my insurance will cover and do all the logistics, have her transferred with the medical record (huge) for an elevated level of care where they will probably follow thru with her surgeons plan to do a contrast enema to look for a blockage. 

-or-

I could be ballsy and just get in the car and drive straight through to Cincy without her medical records.  The medical records is what makes this all the more difficult to do this one.

I will start with number one, and if they do not tell me what I want to hear I move onto number two.

The thing I am trying to avoid is emergency exploratory laparotomy.  More scar tissue=more adhesions= More issues. Idk what I am going to do actually. Kinda feeling numb.  Been packing for an hour now, preparing for either to be here or Cincy.


----------



## QueenGothel

Only the one poop since 3pm, but not much going in maybe not much coming out. Warmed some grape juice really got her belly making some noise hoping she doesn't barf all over the place and dye the whole room purple. This would make her so upset, not only the barfing but ruining her stuff.  She is pretty tidy for a 5 year old.


----------



## Devynnsmom

I just saw this thread now. I'm so sorry she is feeling so awful! I hope you get answers soon. ((((hugs)))))


----------



## kimmidwife

Mary 
That is a hard one! Well one good thing is you have now got the surgeon you are familiar with there. If you decide to go to the other hospital they will be able to request and get her records pretty quickly so I would not overly worry about that. Do you have copies on hand of any of her treatments? Does that hospital have a team that specializes in J pouches?


----------



## AZMOM

Hugs Mary. I read your plan and you're on it and thinking very clearly. 

Starting with who knows her best and then elevating if needed makes perfect sense to me. 

Come oooooonnnnn grape juice. 

Julie


----------



## QueenGothel

kimmidwife said:


> Mary
> That is a hard one! Well one good thing is you have now got the surgeon you are familiar with there. If you decide to go to the other hospital they will be able to request and get her records pretty quickly so I would not overly worry about that. Do you have copies on hand of any of her treatments? Does that hospital have a team that specializes in J pouches?


Yes I have copies of some stuff, is it organized, um heck no it is no where organized. I don't have any imagine beyond her original scope of her colon (useless) and her previous scope where everything was all pretty and pink and happy. Figures huh. I have a lot but I know it is no where all of it especially this last two stays were so messed up. They tested her for a ton of stuff. Idk how many actually specialize in jpouches.  Honesty Cleveland Clinic and Minnesota Mayo are the only two coming to mind specific to jpouchers.  Cincy does have a jpouch clinic according to the nurse I talk to today.  My mind is racing I am just thinking out loud now sorry I digress when I am stressed out.


----------



## AZMOM

Keep talking/typing it out. Whatever helps. 

You're an excellent historian if you have to scoop her up and go. 

J.


----------



## kimmidwife

I agree with that you are certainly an excellent historian. I tried to look up where are the best J pouch doctors and it looked like Cleveland clinic from what I saw. I have heard great things about mayo clinic in general but I am not sure for this. Whatever you decide I am sure it will be what you feel is the right choice to start with. How is she doing right now?


----------



## QueenGothel

The part that makes me nervous about the move is that the new set of eyes will probably need more time.  I know what the next step is in her current plan, it is set up and ready to go.  Cincy will have to devise a plan, research her case.  Her case file is huge, this all takes time they will have new protocols. It is a lot of unknown territory. A lot to think about.  

My question to you all is how high up does a contrast enemas study go up?  If they go to her ileostomy can they keep going an how much further? I wonder if her other scar the laparotomy scar could be stirring up the trouble an this is why they have been stumped all along. They didn't follow her follow thru.  Taking a picture after she poops out the contrast doesn't follow it through.  She was on the fluoroscopy table to just drink it.  So glad we got a fluoroscopy of her throat and stomach.  Thanks.  (Can you sense my sarcasm?)


----------



## kimmidwife

Mary,
I understand what you mean about the plan. However are you happy with the plan? Do you feel like it is the correct plan? I am not sure how far an enema goes up when someone has a j pouch.


----------



## QueenGothel

kimmidwife said:


> I agree with that you are certainly an excellent historian. I tried to look up where are the best J pouch doctors and it looked like Cleveland clinic from what I saw. I have heard great things about mayo clinic in general but I am not sure for this. Whatever you decide I am sure it will be what you feel is the right choice to start with. How is she doing right now?


Cleveland Clinic is an adult center I believe, Rainbows babies and children's is there too and not ranked high in GI compared to my hospital but I am not dealing with a GI now am I. Ugh! But I don't know if they have a jpouch clinic for kids.  

(Potty break)

 SHE POOPED AND FARTED 6 times.  WE HAVE GAS!  HORRAY! Omg I have never been so happy to hear a fart in my life!


----------



## AZMOM

Yay!!!!!!!!!!!


----------



## my little penguin

Yippee for gas and POop
:soledance:

CCHMC has a world renowned colorectal center for peds and a gi center  for IBD


----------



## kimmidwife

Hurray!!!!!!


----------



## crohnsinct

YAY!  I was waiting up!  Hopefully you both can get some sleep tonight! :ghug:


----------



## Devynnsmom

Yay!!!


----------



## Farmwife

So glad to hear the good news.

How is she doing now?

Remember their Devos! The head GI has a great rep for IBD kids. We could meet up and have some N-G feeding time?:dance:


----------



## QueenGothel

She seems alright. But this is every morning so far.  Each night she finally poops and the distention goes down then all day it builds and builds, belly gets bigger and harder. Exercising, doing yoga, pushing liquids.  I just hope things keep moving.  To hear farts was like hearing her cry finally while in labor, such a sweet sound. Funny way to think of it I know.  But she hadn't released any gas for 4 days, it was so scary to me.  I just picture the game "pop the pig" she got for Christmas. The novelty of the game is not something I find amusing at all. 

But hey... FYI warmed up Welches grape juice is my new corrector for constipation. :thumleft:


----------



## Devynnsmom

Glad to hear she's feeling a bit better. I hope she continues to feel better.


----------



## upsetmom

Love your avatar!


----------



## upsetmom

And your family photo...never saw it there in the corner till someone else mentioned it.


----------



## QueenGothel

Talked with her doctor about the contrast enema and she said that her worry is the same as mine that it might not get high up enough but she thinks with all the distention going on it sounds more like an obstruction that is distal rather than proximal.  Hoping this shows us an easy fix.  

Rowan is back to being distended has taken in some toast this morning bc I couldn't give her a shake with the Cipro/Flagyl bc of the iron, magnesesium, calcium factor.  Made her drink warmed grape juice.  No poop yet.  She has had two shakes, some dark chocolate, LF ice cream, now is sipping more warmed grape juice.  Starting to get to that is she gonna pop phase again. Ugh I hate this stuff I wish tomorrow would just get here already.  She is very hungry and bugging me every ten minutes about food.  I am hiding in my room now.  Soon to push Peptamin Jr #3. 

Bags are packed and ready to go if things take a nose dive. 

I think my avatar speaks volumes for the way I am feeling right now.


----------



## my little penguin

Sending calming vibes your way.
You may want to try shaved ice - sonic carries some or use a snow cone maker - 
The chewing may help things plus shaved ice with sugar well just abit .
Hugs


----------



## QueenGothel

Question about nutritional shakes.  I have 4 going in and some other soft foods not much poop.  Since it is peptide based she should still be pooping the equivalent out right or close to it right?


----------



## Farmwife

Oh, QueenGothel, what in sam hill are you doing?

Has all this stuff with your beautiful Rowan made you flip your lid????

When you talk to yourself do you answer back? Just kidding (kind of):shifty:


I have no idea about your Q.
 How is she tonight? Has she past gas. It's hard to believe that we were once educated people, eh.:wink:


----------



## QueenGothel

FYI I got a new user name.  I have had some acquaintants of mine reading my info and though my last name shouldn't be on my posts.  

So you may also refer to me as Queen in a tag. lol The name come from Rapunzel I am not only the Queen her mother that she loves but also the evil Mother Gothel whom traps her in the tower and won't let her leave.  Lets call it an alter ego. 

crohnsinct
Dexky
DustyKat
Farmwife
imaboveitall
izzi'smom
JacksParents
Jenn
Jessi
Johnnysmom
joshk
Kev
kimmidwife
momoftwinboys
NMMom
Steve S
TammyKathleen
Tesscorm


----------



## Farmwife

OK, that makes sense!

But serouisly.....do you answer back????


----------



## QueenGothel

FW no same stuff different day.  I flipped my lid right a very long time ago.  Very distended contrast study just hoping we don't have to run off during the night to the ER.


----------



## Farmwife

Hope you don't have to go. Is the test early morning? I hope she doesn't go on like this for long.


----------



## QueenGothel

Can I get a second to type little miss impatient?  :queen:


----------



## QueenGothel

Test is at 11am so out the door at 10am.  No prep needed.  I wonder if it breaks something free if she will just bowel dump.  I hope that darn resident gets pooped on.  Sorry I know I am gross.  Too much poop in my life I know.


----------



## Farmwife

See your already acting like the Queen!:voodoo:

I'm going to bed! If that's OK with you your majesty.

I pray the night goes better!:kiss:


----------



## QueenGothel

I am taking a bag bc when the doctor sees her I have a feeling we will get that direct admit.  I will be damned if I am sitting in that darn ER all day again!  I will have my iPad with me so you guys will know what happens as soon as I do.  Thanks for being here over and over and over and over again.


----------



## Dexky

I'm so glad you cleared that QueenGothel thing up!  I went back two days to try to figure out what the hell I missed!!

I'm glad things settled enough for you to stay with your original plan!  Good luck tomorrow Mary and Rowan!!  I hope she rests well tonight!..for both your sakes!


----------



## my little penguin

Here is the thing
With peptide or amino acid based formulas
Some kiddos like mine have the liquid in = liquid out
Others have so little residue they actually get constipated .
Most egid kids need a daily dose of miralax when they are on neocate only.

The all formula thing usually takes a few days before you know one way or the other -- 
Hope it's just a little slow and things move the way they should


----------



## Johnnysmom

Praying for your sweet princess


----------



## QueenGothel

So MLP the peptamens could be causing the constipation? Should I jump back to Nutren Jrs?

P.S. I am going to stop calling you MLP and start posting this symbol... <(^) like Batman!


----------



## Johnnysmom

^^^^^^^yeah that!


----------



## AZMOM

Love the new avatar, my Queen. . I was seriously confused when I first logged on though.


----------



## my little penguin

Haha-- just realized it looked like a penguin---

As far as peptamen vs nutren
Peptamen is easier on the gut and may keep her off TPN . It is an aquired taste so I wouldn't change it unless your doc tells you to.
Especially since she had problems before the peptamen .
Also she is having tests in the am .

Good luck


----------



## QueenGothel

<(^) 

ok well while at the hospital she was refusing the Peptamens I was giving her Nutren Jr.  The doctor switched her a month prior bc she was bowel dumping from the Nutren Jrs but I was mixing the new Peptamens with ice cream, now she is use to them and drinks them str8. hmmm It is a possibility with the Cipro and its constipating effect paired with the Peptamens that I have been pushing like a crack dealer.  Oh my well if things don't happen tomorrow I will get some Nutrens Jrs also and see if that helps at least until the antibiotics are done on Wednesday. Though I find it a hard sell that this could be constipation, she doesn't have a colon.  I mean is it even possible to hang onto liquids that long without a colon and I have been pushing the warmed grape juice also with nothing coming out.  She is in the tub now so hoping the warm water does its thing too.


----------



## crohnsinct

O.K. Who sent Mary the wine gift basket? 

That's a girl Rowan...give mom some nice big underwater farts to make her day!  But please oh please do not poop in the bath!


----------



## my little penguin

Same thoughts - constipation doesn't make sense at all to me.
Only if there is severe swelling in the small bowel which should have shown up on her imaging study last week - correct????


----------



## QueenGothel

Warm tub did its thing but I think she is plugged up with poop.  Her poop is black/green looking old avocados. But not like blood poop like dry old poop. The hat is going in for the next catch which I think will be soon bc she is having belly pain.  So how does this work, thinking out loud again.  If the Peptamen breaks down higher up in the intestines this would make it harder to pass if she did have a blockage at the old ileostomy site.  Man I hope the contrast clears whatever is stopping her up.


----------



## QueenGothel

There were big loops on the X-rays both times she went into the ER.  Hmm. Time will tell.  Remember she does NOT present normal...EVER!  Jeez


----------



## my little penguin

Peptamen is already broken down - so much so it is absorbed almost completely in the first couple of inches of the small bowel -- so it could get stuck what ever residue is there but so would everything else soft food wise


----------



## my little penguin

Queen your daughter should meet my son he is king if confusing the docs and not just his either .


----------



## crohnsinct

I think it is a parenting issue:shifty-t:


----------



## my little penguin

Hey just because your child read all of the Ibd memos where they listed the symptoms doesn't mean the rest of us even got those memos .  :ack
I swear my DS left the manual at the hospital when he was born .
He typically leaves most docs scratching their heads .


----------



## QueenGothel

Ya think I am referring to myself as a crack dealer. I was giving her the Peptamens before all this started up.  But where does the swelling come from? Gas, a reaction? Something has to be in play as well? Ok My brain hurts I am not even making any sense anymore.  I am so sick of trouble shooting my kids symptoms it is making me nuts.  I am not giving her any nutritional shakes tomorrow.


----------



## crohnsinct

She IS an overachiever and pleaser sort.  I just read your other post..I think DS is jealous of all the attention you were getting today...or...making you earn your new club and rave reviews!


----------



## QueenGothel

lol illowfight: Crazy Ladies! Get a room.  lol


----------



## kimmidwife

Hi Queen Gothel,
I was also confused tonight when I came on. I was like who is queen Gothel and why did she hijack this thread? Anyway glad that is cleared up. I so hope Rowan is doing better tonight.i was thinking of you guys all day and was hoping for good news when I logged in tonight. Hopefully tomorrow will give you some answers. I will be hoping and praying for you guys. Here is a link that describes what causes distention:
http://www.puristat.com/bloating/abdominal-bloating-or-distention.aspx


----------



## QueenGothel

Gas again and poop! Another night of sleep yay for us. Very digested and dark green.  Thanks to Welches grape juice and Popsicles! Hooray! Finally for a kid that is supposed to poop 5 times a day at minimum this is stressful and odd.


----------



## kimmidwife

Hooray for poop! I hope you guys get some rest. Will be thinking of you and waiting to hear how it goes tomorrow.


----------



## upsetmom

Yep you confused me too.....i thought who is QueenGothel and why has she got Marys new avatar......

I hope yous rest well tonight...:ghug:


----------



## Catherine

I think Mary confuse as all with new name.  All the best for the testing.


----------



## Sascot

Yay for poop.  Hope it all settles down soon.  Glad you got some sleep!  Still think we need a little smiley face with bags under the eyes and little snores coming out the mouth


----------



## Dexky

Good luck today Mary! 

<(^)   ????  I must have a horrible imagination!!  Where's the penguin???


----------



## AZMOM

Thinking of you all today. 

J.


----------



## izzi'smom

Mark...it's a penguins head. Took me a minute also. I am going to have another cup of coffee before attempting to "digest" the rest of this thread. Penguins, queens, towers, and poop. Good grief!


----------



## QueenGothel

Thank everyone it was an uneventful evening she slept thru.  Now I am wondering if she I am crazy and subjecting my kid to another test due to something I might have caused.  The doctor was asking me if her diet is so incredible different between her hospital stays and home and the only thing I can think of is the nutritional shakes. She was exercising her only control again with the shakes.claimed to not like them and insisted on Nutren Jrs at the hospital and we got home and I was giving her the Peptamin bc that is what we have.  Gosh I hope this is not the case I wish I would have figured this part out two days ago.  Then I would have something to be sure about.  If I could have giving her a enema at home and stopped the shakes if that would make her feel all better. Ugh I just don't know though.


----------



## QueenGothel

I have call into the nurse about if it is possible that these Peptamens with the Cipro is causing this crazy dilation due to trapped gas.  I would hate to be wrong and now it is Friday.  I also would hate to be right and subject her to more testing and radiation if it is just something as simple as feeding her clears for a day and non binding foods.

She is running this past the doctor and the dietician.


----------



## Johnnysmom

I would think if there was a reaction to the drinks there would be some nausea.  But lets face it stranger things have happened.  Don't blame yourself though.  You have been doing an amazing job.  Above and beyond, paying attention to every possible aspect.  At least you have thought of it now, sucks it's Friday though.  Can they hold off on pushing the contrast thru till around 2pm so you have time to try no shakes and see if there is no distention?  She seems to be distended by then normally.


----------



## QueenGothel

Agreed, but no they do not have another time slot and want to push through and do this test bc it is the weekend.  This way I know I can bring her home.  The distention is completely gone now for the first time.  Regardless they are loading me up with Nutren Jrs to take home today.  Ugh I hope this is the right thing.  They said it is a rare side effect. Which makes me even more certain it is the Peptamins bc she always gets the rare side effects from medicine and it technically is a medical food. I also asked if there is a attending that is always there and they said no, the fellows are always here and we could possible assign her a fellow to follow her case but when they become an attending we will lose the dedication once there 7 years are up.  Better than nothing though the fellow that always sees Rowan usually, knows how weird she is.  Hoping to get some dedication from someone, somewhere.

Gotta go.  . Don't want to do this at all!


----------



## Johnnysmom

[Q
Gotta go.  . Don't want to do this at all![/QUOTE]

I know, but better to check it out.  Even if it is just the drinks on the off chance it is not they have covered the bases.  You don't want this coming back with a vengeance on Saturday night at 2 am when you can take care of it now.  It will go so much easier too if she if feeling well and not in pain.  Then hopefully you can just go home and enjoy your weekend.


----------



## Devynnsmom

Good luck Rowan!!


----------



## Clash

Good luck Rowan hope the test goes well and the distention stays away!!!


----------



## QueenGothel

Well the did do it twice the first time there defiantly was a hang up at the ileostomy site, they let out all the poo and gas and then did it again and it all flowed well.  Waiting on my case of Nutren Jrs and to see the doctor.  We will be home soon.


----------



## Mylittlesunshine

Glad Rowans test went ok, I hope u both
Get some rest and Rowans is feeling a bit better.
Thinking of u both x x


----------



## QueenGothel

Well she is officially off the Nutrens and Peptamins until further notice. (Milk and cheese also) They told me her intestines are NOT NORMAL and are very swollen/dilated from the stomach to the anus in reviewing all of her X-rays and fluoroscopy.  No narrowing or stricture.  Just this odd air that won't leave. So I left with them just as confused as I, we have a follow up appointment on Monday to see how the weekend goes.  Sent me home with glycerine suppositories if she gets distended badly during the day again.  It could be a reaction to the Peptamins, rare but they don't even know. I cannot find anywhere that this is a side effect. The nice doctor requested a GI to look at her pictures all her X-rays have showed these massive dilation since the start on Dec 7.  Thoughts?  I am worried does this sound like a reaction from something.  

I thought Crohns but they just took some biopsies and the inflammation was mild and pouchitis like. But they just did the pouch also. All of her numbers were spot on. That is a lot of intestines to be dilated. Full of air, like a balloon.  I am so lost I don't even know what to goggle anymore. Anyone ever have this happen?  This is why I need a GI.  They might be breaking there own rule.


----------



## QueenGothel

Looking further into SIBO.  Just leaving no stone unturned anyone have any info?


----------



## my little penguin

http://www.sepeap.org/secciones/documentos/pdf/bacteriano.pdf


----------



## my little penguin

> Objective
> To assess the prevalence of small intestinal bacterial overgrowth (SIBO) in children affected by irritable bowel syndrome (IBS).
> 
> Study design
> Consecutive children affected by IBS according to Rome II criteria (n = 43) were enrolled at the Gemelli Hospital, Catholic University of Rome. The control population (n = 56) consisted of healthy subjects without IBS symptoms, similar to patients for age, sex, and social background. All subjects underwent lactulose/methane breath test (LBT) to assess small intestinal bacterial overgrowth.
> 
> Results
> The prevalence of abnormal LBT result was significantly higher in patients with IBS (65%, 28/43) with respect to control subjects (7%, 4/56; OR 3.9, 95% CI 7.3-80.1, P < .00001). Patients with abnormal LBT showed a trend toward a worse visual analog scale score with respect to children with IBS without SIBO, but a significant statistical difference was observed only for bloating.
> 
> Conclusions
> Results from this study suggest a significant epidemiologic association between SIBO and IBS in childhood. Placebo-controlled interventional studies with antibiotics used to treat bacterial overgrowth are warranted to clarify the real impact of the disease on IBS symptoms.


From:
http://www.jpeds.com/article/S0022-3476(09)00247-9/abstract


----------



## my little penguin

> The present article provides a general overview of the possible diagnostic procedures available for the management of small intestinal bacterial overgrowth in pediatric patients with intestinal failure. The focus is to address current diagnostic tools and understand their associated advantages and disadvantages based on a literature search. Culture of small intestinal aspirates, noninvasive breath tests and an emerging interest in quantitative bacterial DNA fingerprinting are discussed. Proper management is critical for preventing the recurrence of small intestinal bacterial overgrowth and its related complications. Antibiotic prophylaxis is one approach to the treatment of bacterial overgrowth in intestinal failure patients. Although treatment trials can be challenging in such a vulnerable population, more investigative clinical studies examining early diagnosis, more effective control of recurrence and the prevention of associated complications must be conducted.


From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027334/


----------



## my little penguin

Done off for the night
Life calls


----------



## Johnnysmom

I read an interesting article about abdominal distention.  It discussed adhesions from previous surgery that cause abdominal obstruction that lead to gas and air being trapped in the colon or small bowel.  Could Rowan have scar tissue that is causing blockage?  Also the article discussed infection and said often the patient will have fever or "guarding" of the stomach area because of tenderness.  Rowan doesn't seem to have anything like that going on, at least not now.  They also talked about toxic megacolon which can happen without a colon and in the small bowel.  

What have they ruled out so far?


----------



## Farmwife

OK Mary, I decided to stop feeling sorry for myself and now feeding tube bound daughter.

A long the lines of Johnnysmom post
I know it might not be c diff but..........have you considered mega colon in the small intestines?

I'm sending you a link. I'm not posting it for certain reasons but still read it and think about it. I read where C diff in the small intes. will show negative on a stool sample. Maybe this could be causing havoc?????


----------



## Dexky

QueenGothel said:


> Well the did do it twice the first time there defiantly was a hang up at the ileostomy site, they let out all the poo and gas and then did it again and it all flowed well.  Waiting on my case of Nutren Jrs and to see the doctor.  We will be home soon.


How did they let it out?  Catheter?  I don't know anything about stomas, just curious if there's any way to do that at home?


----------



## Johnnysmom

What about Intestinal pseudo-obstruction, acute colonic ileus?

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001299/#.UOeJNEDE-ko.gmail


----------



## QueenGothel

Dexky said:


> How did they let it out?  Catheter?  I don't know anything about stomas, just curious if there's any way to do that at home?


Dexky she doesn't have a stoma. She has a j-pouch when I was referring to the ileostomy site I was referring to where it was before she was reconnected the anastamosis. They let it out via double lumen catheter.


----------



## QueenGothel

Johnnysmom said:


> What about Intestinal pseudo-obstruction, acute colonic ileus?
> 
> http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001299/#.UOeJNEDE-ko.gmail


This was her original diagnosis with c.diff.


----------



## QueenGothel

Farmwife said:


> OK Mary, I decided to stop feeling sorry for myself and now feeding tube bound daughter.
> 
> A long the lines of Johnnysmom post
> I know it might not be c diff but..........have you considered mega colon in the small intestines?
> 
> I'm sending you a link. I'm not posting it for certain reasons but still read it and think about it. I read where C diff in the small intes. will show negative on a stool sample. Maybe this could be causing havoc?????


Yes, we discussed this today and she is not sick.  This is the biggest weirdest part.  No fever, not tired, bowel sounds are happening she is happy, playing, normal really. Could be... Thankful I have this arsenal to think about over the weekend before her next appointment.  Thank You!


----------



## QueenGothel

Johnnysmom said:


> I read an interesting article about abdominal distention.  It discussed adhesions from previous surgery that cause abdominal obstruction that lead to gas and air being trapped in the colon or small bowel.  Could Rowan have scar tissue that is causing blockage?  Also the article discussed infection and said often the patient will have fever or "guarding" of the stomach area because of tenderness.  Rowan doesn't seem to have anything like that going on, at least not now.  They also talked about toxic megacolon which can happen without a colon and in the small bowel.
> 
> What have they ruled out so far?


They have ruled out c.diff, rotovirus, norovirus, h.pilori, e.coli, narrowing, strictures, food obstruction, ova and parasites, UTI, salmonella, shigella, vibro group, campylobacter, yersinia, aeromonas, plesiomonas, blood cultures/urine cultures/stool cultures all negative and tested 2 times. Idk thinking I need to get another infectious disease consult.  

She is not distended now granted she had a large enema twice today.  We shall see what tomorrow brings. No poop either. Time will tell.


----------



## QueenGothel

Looks like I might be trying a fecal transplant just for the heck of it.  Infectious disease recommended it for the c.diff and if SIBO or hidden c.diff it is worth a shot.  A drastic measure I am defiantly thinking is worth a go.


----------



## Crohn's Mom

I'm so sorry for all you're going through (Queen) Mary 

I am always following along, just when I don't have any intelligent or useful advice, I just stay silent.
My thoughts are with you tho, and I am crossing everything in hopes that you find answers very soon!
:hug:


----------



## Clash

I do the same Crohn's Mom, I know I don't have any helpful advice but prayers and thoughts are always going up for princess Rowan. I hope you find answers and relief for her soon Queen Mommy!! I know that will bring you relief as well!


----------



## QueenGothel

Now I am reading about FODMAPS by Mark Pimentel MD

It's gonna be a long night for me. Drinking coffee while researching then probably another White Russian... the New Years gift that keeps giving.  Cheers!


----------



## QueenGothel

Luckily she is on the right antibiotics.  I think I might need a holistic approach with this.  She needs a whole body cleanse with the right foods, without obstructing her.  I am loosing faith in western medicine... again!


----------



## my little penguin

Breathe- stop reading go to bed- fodmap - DS did as well not for the same issue though.
My thoughts and prayers are with you and her both.
If your doc does not have answers Monday can you try to get a second opinion at Cincy without switching care there ???
They really helped us .


----------



## my little penguin

http://www.cincinnatichildrens.org/WorkArea/DownloadAsset.aspx?id=86899

Even video goggles for MRI so they could keep her awake and do real imaging with no radiation if needed


----------



## QueenGothel

my little penguin said:


> Breathe- stop reading go to bed- fodmap - DS did as well not for the same issue though.
> My thoughts and prayers are with you and her both.
> If your doc does not have answers Monday can you try to get a second opinion at Cincy without switching care there ???
> They really helped us .


Yes I will.  For sure DH will go with me. We already are thinking about how we need more eyes... And lots of them.  Too bad it isn't warm in Cincy.  I wish it was Arizona.  I hate all this snow.  It was 10 degrees today but felt like 0. I hate Michigan winters.  Seasons are overrated completely.

Finished my research I posted it now I just need finish reading it all another day.


----------



## Devynnsmom

((((hugs))))


----------



## DustyKat

Hey Mary...:ghug::ghug::ghug: 

:ywow: Talk about being put through the wringer.  

I hope you don't mind if I just think out loud here...have they ruled out a functional issue with the rectal anastomosis site?...Does, for whatever reason, the peristaltic action stop at the site and the rectum fail to take over?...causing constipation and distension. 

Since this problem arose have they ever passed a flatus tube to see if that relieves the gas and faecal build up? 

Thinking of you, :heart:
Dusty. xxx


----------



## Dexky

QueenGothel said:


> Dexky she doesn't have a stoma. She has a j-pouch when I was referring to the ileostomy site I was referring to where it was before she was reconnected the anastamosis. They let it out via double lumen catheter.


As Dusty can so eloquently attest, I can be rather thick…

double lumen catheter inserted into what exactly??


----------



## QueenGothel

Rectum.


----------



## AZMOM

I know your are thinking thinking thinking. I hope you slept some. 

How's she feeling today?

J.


----------



## QueenGothel

DustyKat said:


> Since this problem arose have they ever passed a flatus tube to see if that relieves the gas and faecal build up?


They discussed this in the appointment, he drew me a picture of why this happens and explained why the insertion of a tube would be needed narrowing and distal vs proximal diagnosis based on the bottle neck appearance.  Then he said he would need to perform a rectal exam, he was shocked said the rectal anastamosis was open and not an issue. Also explained if this were the issue they should have noticed this during the scope. She is not distended at all today but granted it took her a while to become distended after being clear out for the other fluoroscopy contrast.  (Sigh)


----------



## Farmwife

Hugs to you both! 
Nothing else to offer but maybe a trip up here. 
Ya know our Cherry festival is famous. Lots of fun. You have a farm to stay at. 
Wait what am I saying....we're going to a hotel with a pool! That will be a lot more fun for the girls. YA!!! When ya coming????


----------



## QueenGothel

AZMOM said:


> I know your are thinking thinking thinking. I hope you slept some.
> 
> How's she feeling today?
> 
> J.


She seems fine.  The biggest non symptom she is having that is leaving them not as worried.  No complaints. The only time she complains has been at night after trying to stimulate her bowel by giving her a large amount of warmed Welches grape juice and finally she poops and farts and gets the relief.  FYI I don't not get this result during the day when trying the juice when she is extremely dilated.


----------



## QueenGothel

I am going to implement the low-FODMAP diet today and see if it helps with the gas and bloat and go from there.  Luckily we do have somewhat of an arsenal since I have been an on again off again GF dieter. Hoping it helps all I can find on SIBO recommends this diet with the course of antibiotics to reverse the overgrowth the fastest.  I figure it cannot hurt and luckily doesn't seem as hard as trying to implement SCD or something harder to a 5 year old that is starving. 

Wish me luck going to make some GF pancakes.  Thank god for Pamelas Pancake mix, I can make a lot of stuff with it.


----------



## QueenGothel

DustyKat said:


> Talk about being put through the wringer.


The fluoroscopy was 45 minutes long via enema contrast. The filled her took pictures flipped her rotated her took more pics added more trying to get it higher up.  Then let it out, filled her back up again, flipped and rotated her more.  She cried the whole time it took 3 of us to hold her down to get the images.  Probably one of the worst things I have ever had to do. The whole time begging me mommy do not do this.  When I got home and my husband asked how it went and I explained it he was shocked she was awake. I looked at him and said this is not the first contrast enema we have done. He wonders why I am freaking train wreck. Now I think the light went on that it always is me doing the dirty work.  I had to give her all her at home enemas, I had to push the prolapse back in, I had to give her adult Canasa suppositories.  Totally sucks that I am such a part of her pain all the time.


----------



## QueenGothel

Farmwife, love the new pic. She is such a cutie.

We will be there as soon as Rowans belly distention disappears miraculously like a gift from heaven.  Fingers crossed XX


----------



## Crohn's Mom

Awe Mary - my heart breaks for you.


----------



## Dexky

Is she bloated today Mary?  We have a great GF cookbook if you need some recipes!


----------



## QueenGothel

Thanks Dexky, (my iPad keeps wanting to change your name to sexy, lol) 
Currently working on a GF Pizza but without garlic or onion. So the store bought sauces are not allowed.   I got the crust down which is the hardest part, we all like it even DH. Which is not the norm.

This is my starter list

http://blog.katescarlata.com/wp-content/uploads/2011/04/GROCERYPOSTER_OCT22-4.jpg


----------



## Dexky

Haha…Mary's Gone Crackers!!!

Did you photoshop that in there??  I could live on that list I think  I hope it helps her!!!


----------



## DustyKat

QueenGothel said:


> Thanks Dexky, (my iPad keeps wanting to change your name to sexy, lol)


Looks like you were sold a dud then Mary. Take it back and ask for a replacement...one that works this time! :lol:

I so hear you Mary, as we no doubt all do, about being present for the tests and being the one to have to carry all the distasteful and painful tasks. It surely does suck.  More often than not we are between a rock and hard place. Even if we wanted to not do these things I don't think the kids would a bar of it! I know mine wouldn't! 
Have I told you lately what a fantastic job you are doing Mary? Well you are and no mistake! You're pure gold. 

I wasn't so much thinking stricture as maybe a functional problem. As in the rectum has shut itself down for some reason? 

Dusty. xxx


----------



## QueenGothel

Yes, agreed. I don't think it will be very difficult to implement I have done pH diet, almost SCD didn't get far turned into GF quickly. 

Thought I had the sauce but I don't.  so using some with garlic. Bummer getting there though.


----------



## QueenGothel

DustyKat said:


> I wasn't so much thinking stricture as maybe a functional problem. As in the rectum has shut itself down for some reason?
> 
> Dusty. xxx


I will bring it up to her doctor on Monday afternoon.  I wonder what fun test she will get on a monday?


----------



## DustyKat

Yikes! I don't want to be responsible for that! :lol: 

Seriously though Mary, I hope they can get this sorted ASAP. You have all had enough heartache to last a hundred lifetimes. :ghug: 

Dusty. :heart:


----------



## QueenGothel

Oh I am sure it will be ruled out in some way regardless, they are not done testing her.  I use sarcasm as my defense mechanism to attempt to stay sane. I works sometimes then there are the few people that see through me like a window.

I wasn't pin pointing your suggestion would make for more testing just that there defiantly will be some testing going on. Unless a miracle happen which I am hoping for of course that this will just go away.


----------



## my little penguin

http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495

Good fodmap recipes

Oatmeal bake is wonderful


----------



## my little penguin

The sauce is also decent
On the link above 

Ian's makes a gluten free French bread pizza and kids meal
As does a lot of kinnicknick foods 
Good luck


----------



## QueenGothel

Thanks for the link got it bookmarked now.  The one thing that stuck out the most was the Blackberry Lime Margaritas for myself


----------



## Catherine

Mary, good luck with FODMAP.

This diet come out of research by Sue Shepherd of Shepherd Works.   This may help if you are reasearching the diet.


----------



## Sascot

Wow, that test sounded horrible, so sorry you had to go through that and hold your poor little girl down.  I know what you mean about going through all the hard stuff.  My husband sympathises but it is always me that takes them to the tests, stays overnight in hospital, etc.  Hope the new diet provides some relief!


----------



## QueenGothel

No poop yet since about 5am.  She has had GF pancakes/maple syrup, GF pizza, yogurt, grilled chicken, baked potato no skin, couple of pieces of dark chocolate.  Nothing's a stirring really.  Welches juice trick is next. I don't get why laying in her bed gets it moving though. Kinda reminds me of the old days when she had UC.


----------



## Johnnysmom

I know we used mineral oil for Johnny.  Would that work without a colon?  We refrigerated it and put it right in his juice.  He called it his butter juice.


----------



## my little penguin

Just a reminder --- Gf is very very constipating-- since most are rice based.
Which is part of the reason we stopped the fodmap
That and it made no difference in DS symptoms after four weeks


----------



## my little penguin

Dark chocolate I thought she was milk free - unless you mean enjoy life choc then that is dairy free.


----------



## QueenGothel

It was a milk free dark chocolate, you know the super duper expensive stuff in the health food isle.  Figured it was also an anti-oxidant and has a laxative effect also. I am giving her LF options bc it was on the low fodmap ok list.  We don't do GF like others do GF we don't do all the rice.  More potatoes, I got her sipping the juice.  So if things don't start happening glycerin suppositions are next.  Ugh!


----------



## QueenGothel

It was a milk free dark chocolate, you know the super duper expensive stuff in the health food isle.  Figured it was also an anti-oxidant and has a laxative effect also. I am giving her LF options bc it was on the low fodmap ok list.  We don't do GF like others do GF we don't do all the rice.  More potatoes, I got her sipping the juice.  So if things don't start happening pediatric glycerin suppositories are next.  Ugh!   

Just trying to reduce gas, idk if she is really constipated or just not moving really.  It is like a lazy gut.  Idk I am just going with the flow. :ywow:


----------



## my little penguin

There is such a thing as delayed gastric emptying - gastroparesis 
Among other things
Really think she meds a Gi who can help figure out the extra stuff that seems to be going on even if / its not Ibd related .


----------



## my little penguin

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001342/

Read this it kind fits


----------



## QueenGothel

SERIOUSLY MLP I was just reading this article today.  Funny I was looking at the Peptamin JR website, looking for anything that might stick out, and it said not for people with Gastroparesis.  So I googled it.


----------



## QueenGothel

Her symptoms and lack there of other symptoms is just so odd. If she doesn't poo tonight like she has been, then suppository in the morning. She is not huge but is distended and soft.  I am kinda leary to give the suppository, at night.  Don't want to give her a long lasting belly ache, even though it says it will produce a bowel movement within an hour.  Thoughts to do it or not?


----------



## QueenGothel

Gastroparesis doesn't make the intestines swell though.  Idk what is happening.  But can cause SIBO. Ugh.


----------



## Johnnysmom

Johnnysmom said:


> What about Intestinal pseudo-obstruction, acute colonic ileus?
> 
> http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001299/#.UOeJNEDE-ko.gmail


This can be idiopathic, not necessary to have Cdiff


----------



## QueenGothel

Johnnysmom said:


> This can be idiopathic, not necessary to have Cdiff


This was her first diagnosis when they thought she had c.diff.  Looking for something that causes the intestines to swell up like a balloon.


----------



## QueenGothel

Can Flagyl or Cipro cause this?  I know neuropathy is a risk for both but can there be neuropathy of the intestines.


----------



## Johnnysmom

I am always suspect when they say "idiopathic".  I would think surgery, antibiotics etc can disrupt her ability to empty properly.  She doesn't seem sick, just unable to pass food and gas as it just gets trapped. (just thinking out loud)   If neuropathy is a risk with Flagyl or Cipro I would think it is possible.


----------



## QueenGothel

What if her J-Pouch has failed.  Googling now.


----------



## Johnnysmom

I would think that would be the ONE thing that Mott's would have picked up on if it were true. 

I am sorry, this must be driving you mad.  

Still hoping this disappears as quickly as it came and its just one of those strange flukes.


----------



## QueenGothel

She just pooped.  No pain involved. I have no patience at all. ok going to have a drink and relax. Never did drink one last night.  Just googled all night and coffee.


----------



## my little penguin

Sleep .....
No more googling
Not recommended
She needs a well mommy who can think straight 
Because you slept


----------



## Johnnysmom

Everything I watched on Jpouch failure had more to do with having diarrhea, not at all Rowan's symptoms.  I did see a post on someone who had a "kink" for lack of a better word and it caused her not to be able to empty properly.  She had symptoms more like Rowan's.  I would think this would cause problems right away but the woman did not mention in her post when her problems started.  There was also a complication of ischemia (less blood flow) and autoimmune associated complications.  
I will say that every thing I saw said that guy at Cleveland clinic was the "guru".  I don't know if they see kids there though.


----------



## QueenGothel

I was actually just looking it up and Bo Shen does see pediatrics through Rainbow a babies and children's in Cleveland.  This will be our next opinion if it requires one.


----------



## xmdmom

I hope you get some sleep. This is a good article to read *tomorrow *http://www.practicalgastro.com/pdf/October06/ShenArticle_ShenArticle.pdf  if you haven't seen it already.  I noted it talked about dyschezia, a word I have never seen before just now = constipation associated with a defective reflex for defecation.   If you search the article for dyschezia, you will find 2 paragraphs for 2 different causes.  Not sure if this is relevant for Rowan....


----------



## Sascot

Hope you manage to get some sleep.  Wish I had some advice to give, but not much help - sorry.  Thinking of you!  Can you try to get some me time?  Even just an hour or two - go have a coffee out somewhere (or a glass of wine)


----------



## QueenGothel

XMD, yes I have saw this article before but not recently.  Thank you for posting it.  It does still leave me questioning what exactly is happening.  I would say in my best guess she is having mega pouch due to SIBO.  Hopefully once under control it will all go back to normal and won't require biofeedback therapy.  It also states diet low in milk, fiber, and carbs would help and this is her current diet, and it does seem to be helping.  Hopefully thing start to resolve and I can get some good feedback from her doctor tomorrow.


----------



## my little penguin

Good luck
There is an eggie quiche like recipe DS really liked

Scramble eggs with water place in casserole dish- uncooked
Layer spinach and ham on the bottom
Add diced skinless tomatoes and hash browns
Sprinkle Sharp cheddar cheese on top

Baked 350-375F
Until done -about 30 minutes
- spinach is optional if she won't do green


----------



## QueenGothel

Just more info in case another jpoucher needs advice with the same issues.

http://usagiedu.com/articles/pouchitis09/pouchitis09.pdf


----------



## kimmidwife

Mary,
How is she doing today? I tried doing some research for you last night but did not find much and my little one didn't let me get much done. She kept coming out of bed. Anyway it looks like MLP,Xmdmom , and others have given you really great advice. I did find where some other jpouchers were complaining of similar symptoms but also did not have answers. I hope she is improving and the diet helps things move in the right direction. Thinking of you guys and sending hugs!


----------



## QueenGothel

She seems ok. Playing, eating. Belly is still distended but not like it was previously.  Tat being said I think the diet is helping. Still have a lot of questions and worries. Fearful of going back to the bag. Really don't want to do that. 

But I am a pessimistic optimist.  I can turn on a dime.  I am still in survival mode so anxiety is high and my mind is full of horrible thoughts.


----------



## xmdmom

I am prone to worrying and have found mindfulness practices to be very helpful keeping me in the present.


----------



## QueenGothel

Well I don't know how mindful my practices are but I am cleaning my room for the first time in a while.


----------



## QueenGothel

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?


----------



## AZMOM

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.


----------



## upsetmom

:hug::hug::hug:...try not to worry


----------



## my little penguin

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


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

few more hours until monday


----------



## QueenGothel

Yes that was a waste of time and crying for her. Ugh! Yes Monday is soon to be here.


----------



## Dexky

Still, no better QG?


----------



## QueenGothel

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?


----------



## DustyKat

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


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## Dexky

QueenGothel said:


> I am just trying to not speculate too much on any bridge before I get to it.


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^^^


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## DustyKat

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


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## QueenGothel

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.


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## DustyKat

Yikes, I hope I didn't come across as thinking your Hubby wasn't fully onboard Mary. :sorry: 

Dusty. xxx


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## crohnsinct

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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## Johnnysmom

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:


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## QueenGothel

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.


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## QueenGothel

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.


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## crohnsinct

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!


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## crohnsinct

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.


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## Farmwife

OHHHHH, I did kick boxing (zip it crohnsinct) I loved it. A hard work out but fun too.


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## QueenGothel

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.


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## crohnsinct

Haha yeah but as I sent I thought "do we really want to arm Queen with kickboxing training....":shifty-t:


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## QueenGothel




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## Farmwife

:thumright:YUP, that smile was made for you!:ylol:


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## crohnsinct

QueenGothel said:


> I have weak knees from a rollerblading acciden.


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?


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## crohnsinct

Farmwife said:


> OHHHHH, I did kick boxing (zip it crohnsinct) I loved it. A hard work out but fun too.


Yeah but I use a bag not a cow! You cow tippin country fool!


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## QueenGothel

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.


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## my little penguin

More hugs
Kickboxing scarys me
Hope they come up plan


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## QueenGothel

crohnsinct said:


> 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?


Vice Squad...:rof:


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## Farmwife

:ylol:I'd pay to see this!


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## izzi'smom

crohnsinct said:


> Yeah but I use a bag not a cow! You cow tippin country fool!


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.


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## Dexky

crohnsinct said:


> Hey there's another idea...we can have own own Roller Derby team to relieve stress.  What shall our name be?


Poop Patrol!


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## crohnsinct

Bathroom Broads


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## crohnsinct

Yeah so I cleaned it up!


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## Mylittlesunshine

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


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## Farmwife

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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## Mylittlesunshine

Lol@farmwife TUBBIES it is 
Should we start a TUBBIES club lol


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## crohnsinct

Rectal Raiders


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## Farmwife

The muppets!


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## muppet

Farmwife said:


> The muppets!


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## QueenGothel

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:


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## Johnnysmom

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:


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## Johnnysmom

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!


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## izzi'smom

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!


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## crohnsinct

Sending hugs Mary and praying right along with you.


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## crohnsinct

The Vice Squad and Rectal Raiders would kick the Tubbies and Muppets butts!  This is Derby FW..you gotta get mean!


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## Farmwife

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!


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## Farmwife

M hugs to you and all will be in my prayers!


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## QueenGothel

*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


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## QueenGothel

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.


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## Mylittlesunshine

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


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## QueenGothel

I am taking a break from the Internet and FB and the forum for a bit.  I might lurk here and there. Trying to preserve my sanity.


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## Farmwife

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:


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## QueenGothel

*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.


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## Dexky

Bless her!  Hope so too M!


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## my little penguin

Hugs ....
Did they do an mre and see the blockage or are they going in blind???


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## my little penguin

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


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## QueenGothel

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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## Clash

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!


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## QueenGothel

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.


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## QueenGothel

She also told me that if they do not find anything laparoscopically they will be opening up her old laparotomy wound. I am hoping plan A is it.


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## Crohn's Mom

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


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## kimmidwife

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!


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## QueenGothel

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.


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## AZMOM

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.


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## Catherine

Hopefully plan A goes well.


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## Mylittlesunshine

Hoping and prayer that all goes well for Rowan
And you stick to plan A x big hugs x


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## Sascot

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.


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## DustyKat

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


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## xmdmom

Sending healing thought's Rowan's way! Wishing you smooth sailing!


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## Mylittlesunshine

Hi Mary x how's Rowan? How are you to
((((Hugs))))


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## QueenGothel

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.  utahere:


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