C.diff, ileus, blockages, j-pouch

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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:
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Who said this? You or the attending?

How's Rowen today? Any more blood?
 
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!
 
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.
 
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:
 
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!
 
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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:
 
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.) :)
 
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.
 
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.
 
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.
 
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!!!
 
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!
Click to expand...

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

You truly are amazing...:hug:
 
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.
 
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.
 
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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.)
 
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.
 
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.
 
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
 
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
 
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.
 
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
 
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!
 
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!
 
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
 
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.
 
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.
 
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!
 
Oh Mary...:hug::hug::hug:

have you heard anything from the surgeon?

Thinking of you, :heart:
Dusty. xxx
 
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.
 
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.
 
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.
 
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.
 
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.
Click to expand...

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

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.
 
Keep talking/typing it out. Whatever helps.

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

J.
 
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?
 
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?)
 
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.
 
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?
Click to expand...

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)

:poop: SHE POOPED AND FARTED 6 times. WE HAVE GAS! HORRAY! Omg I have never been so happy to hear a fart in my life!
 
Yippee for gas and POop
:soledance:

CCHMC has a world renowned colorectal center for peds and a gi center for IBD
 
So glad to hear the good news.

How is she doing now?

Remember their Devos!:D The head GI has a great rep for IBD kids. We could meet up and have some N-G feeding time?:dance:
 
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:
 
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.
 
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
 
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?
 
Oh, QueenGothel, what in sam hill are you doing?:D

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:
 
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
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joshk
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momoftwinboys
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Tesscorm
 
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.
 
Hope you don't have to go. Is the test early morning? I hope she doesn't go on like this for long.
 
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.
 
See your already acting like the Queen!:voodoo:

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

I pray the night goes better!:kiss:
 
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.
 
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!
 
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
 
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!
 
Love the new avatar, my Queen. :). I was seriously confused when I first logged on though. :)
 
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
 
<(^)

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.
 
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!
 
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????
 
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.
 

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