Rowan's New Second Ileostomy

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QueenGothel

QueenGothel

Joined
Oct 13, 2011
Messages
1,533
Location
Michigan, USA
Prometheus testing came back... Negative. I don't know the information nor have the test results they just said it was negative as in good news.

I don't have any idea what this test actually does or how accurate it is. I have read some conflicting opinions. What do you all think? The Doctor at Cincy Colorectal Center seemed to think it was pretty reliable where Rowan's Doctor seemed less enthused.

Another thing I don't understand is the scope and the laparotomy were only 6 days apart and the finding for the scope were not very interesting per the surgeon, and the laparotomy seemed to be quite a big deal. This makes me uneasy.

Her doctor seems to think that she cannot evacuate her bowel correctly. This was the case before the scope because she didn't empty the barium completely when told to do so, then during the scoped they dilated her rectum. Her J-pouch which looked somewhat normal via X-ray and scope became very large and dialated as well as indurated and boggy. There was also a long blind limb of the J-Pouch that was slightly folded back on itself.

I don't understand all of this, I have a least six months to think about it, I really hope it to be uneventful.
 
We will see how this goes. If she flows and doesn't distend we are just going to take a break. Dr wants to do more testing. They are calling it a possible failure due to pouchitis. We are unsure if pouchitis was the cause or the symptom yet.
 
I'm not really sure about the Prometheus test Mary. My understanding is it is about 80% accurate depending on your type of IBD, so certainly room for error. I personally would always hold judgement based on how Rowan presents. I certainly hope it is not CD but wouldn't want that option closed down based on blood test and in doing so it mean't the difference between getting appropriate treatment and not getting it.

Thinking of you both. :heart:
Dusty. xxx
 
The only reason it was brought up is that it is the #1 reason for pouch failure. Tese are people that have refractory pouchitis, she only had it once. that is why i am so shocked I think. They keep telling me no CD. Prometheus is just another one to add to the list of confirmed UC. They also consider her fail Remicade a confirmation of UC. The pathologist that studied her colon. The MRE before colectomy. Then her blood tests have all been spot on pretty much since. I don't know. I think I plan to keep the ileostomy for a while if her body allows us to. The surgeons says 6-9 months we can do another j-pouch surgery, I say 6-9 years is a better time frame. We don't agree. I figure if she has had a mucosectomy why not just leave it alone and let her just heal for a long time!

Time will tell, hoping Blubber Butt behaves!
 
Well she went back in the hospital on Sept 2 she had a low fever and high ostomy output. They dropped the ball in the ER and didn't send the UA for a culture after it came up positive for UTI. She was put back on Cipro, she had just finished her month course from her surgery just 4 days before. They did two different ultrasounds one to make sure she wasnt having renal reflux and the other looking for abscess. All was negative. She was released 36 hours later. I told them something was still off. She was still having high output and dark urine. They chalked it up to dehydration and sent us home with Sodium Chloride liquid to add to juice twice daily. After we were home she was complaining of abdominal pain at the incision site of her ex-lap. I called the clinic and they told me to go through the ER. After in the ED they gave her another ultrasound which was negative but she spiked a fever of 103 so they admitted her as her WBC had went up 17.2 to 18.9 from the previous admission. They told me if it were viral than it wouldn't respond to antibiotics, they put her on IV zosyn she had 3 doses, by morning her WBC was back down to 13. Doctor shut off Zosyn and said we want to get more cultures so he wanted her to spike another fever. He felt it was a very big gun to not know what they were aiming at. That night she spiked another 103 fever. All cultures were collected and all came back negative. She never spiked again and she was released two days later. She is home now and has missed her whole first week of school. I am very frustrated. Tomorrow she starts kindergarten and I go to spend the day educating the staff how to care for her ostomy. None of this seems right and I am worried they have missed something. They are saying it must've been a virus though her WBC responded to it. They are thinking she is also having normal healing inflammation as well at the surgical site which might explain the elevated WBC count.

She has a small granuloma under her stoma which was probably caused by a stitch and the floating flange rubbing on it. I don't quite know what to think of her hospital anymore. I have had a few different doctor throw the CD diagnosis around. They still haven't given me a GI, I am not planning to ask for one again. I have chose to get one at another hospital in which her surgeon also works at Beaumont Children's, Dr Truding is active with CCFA as well and comes highly recommended by some CD friends I have.

Frustrated with the hospital bc for a kid whom just had surgery a month ago no one ever took off her flange or even looked at the stoma until I insisted the attending see the granuloma which he didn't think was an issue. Regardless they should have and they didn't. I guess I am getting a bit fed up. I just wrote a letter to her surgeon notifying her we are getting a GI at another hospital since Mott refused to assign her one. I also am requesting the paperwork for the second opinion be sent off as well to Cincy. I imagine it will take some time for them to review her case.

Through both hospital admissions she was only on IVF for the first day, beyond that you would have never known anything were going on beyond the mystery fevers that occurred.
 
What a nightmare! :(. Hope you get new GI quickly and she gets sorted out.

Good luck with school :hug:

Xxx
 
I hope Beaumonts is near you Mary. Good luck! I hope they realize how well-informed you are and consider all your concerns more carefully than your current team!!
 
Thanks all. Just now her loop ileostomy just retracted completely inside. I had to apply heavy pressure to get it to pop back out. I think this might be the source of her mystery fever, if in fact it is not diverted at times and is dumping stool down into her J-Pouch. I really don't want to go to the ER as she doesn't have a fever or anything. Wrote her surgeon an email. She doesn't want me to go to Beaumont and said she wild get me a GI and is trying to get the specific one I want. I just really wish they understood how frustrating all this can be for me and how badly this disrupts our families lives. I just am sick and tired of her being sick and tired. I also got the ball rolling on the Cincy second opinion.
 
I'm so sorry Rowan had a rough time of it. I'm glad that the fever went away, but I hope that you can figure things out so that it doesn't keep happening. I don't get how they didn't assign a GI to her case when she was inpatient... I totally understand your frustration. Thinking of Rowan and your family and hope this week goes forward as normally as can be!
 
Basically I had to threaten to go to Beaumont in order to get the referral. They give me consults when they deem them necessary, this has happened once since surgery a year and a half ago.

Her surgeon doesn't think the retraction needs to be corrected. Advised to contact a WOC Nurse about getting contex flanges and rings. I will be changing it tonight hoping it to not be an issue.

On a happy note she loves school and they are being very accommodating to our needs and worries. 504 plan is in place and we have a plan A,B, and C. Hoping we never need them but thankful they are in place. Today was her first full day without me tagging alone. She is growing up so very quickly. I am very happy for her. She is a bit frustrated with Gym class though as she cannot do everything the other kids are doing.
 
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Hi Mary
Sorry to hear about Rowan going though,
I do hope you get things sorted.
I'm made up to hear that Rowan loves
School and is enjoying it.
Lucy said to tell Rowan she goes to big
Girls school too. As I'm typing and telling her
That Rowan goes school she asked what her
Best thing at school is? (How sweet)
They grow up so fast Mary.
Hugs to you both x x
 
Second opinion

Spent the last two days on the phone trying to get all of Rowans records transferred over to Cincinnati Children's where she will see a one Dr. Von Allmen for a second opinion regarding surgery and a consult with their GI team to run testing to check further for any sign of Crohns. Once they receive all the records they will call me for scheduling her appointment which seems likely to be sometime around End of Nov-Dec.

Oddly enough she has actually pooped out a couple of nuggets via j-pouch recently. Apparently the diversion isn't perfect. Some days I just want to hide and act like we have no further surgeries and that we can just live forever with her ostomy. Other days it gives me troubles and I think of how much better she would be if she had her j-pouch again. They are discussing the probability of doing a SIAA (straight connect) rather than a j-pouch because the probability of pouchitis is less. Below is Rowans hospitals contribution to the medical library. As frustrating as they can be I know she is at a great hospital that does these surgeries all the time. I get very insecure when they don't really know what is happening with her. It stresses me out. The risk of ongoing incontinence is much greater for reconstruction surgery bc they must remove the old staples and put new ones in the rectum. :(. I don't know what I think yet.

http://www.ncbi.nlm.nih.gov/pubmed/19573671

What else we are facing.
http://www.ncbi.nlm.nih.gov/pubmed/19247027

FYI she renames her ileostomy Izzy because she felt she was a girl, and blubber butt was not appropriate for school per her principal. It is kinda funny because when we talk about her. I say how Izzy (is he)? People are no wiser. We have decided she is a pet. So we do our best to keep Izzy healthy. She is a funny kid.
 
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Mylittlesunshine said:
Hi Mary
Sorry to hear about Rowan going though,
I do hope you get things sorted.
I'm made up to hear that Rowan loves
School and is enjoying it.
Lucy said to tell Rowan she goes to big
Girls school too. As I'm typing and telling her
That Rowan goes school she asked what her
Best thing at school is? (How sweet)
They grow up so fast Mary.
Hugs to you both x x
Click to expand...

Her best thing is music class! Loves it! Dances the morning of when I tell her it is music class day! So sweet indeed!
 
Latest and greatest!

24vqvj9.jpg


She got her hair cut!
 
Oh wow Mary! She looks gorgeous, bless her. :heart:

Good luck with the second opinion, my heart goes out to you and Rowan for the decisions that lay ahead. :ghug: Sending never ending wishes that CD never comes into your lives.

Dusty. xxx
 
Monty,
She looks so beautiful with her haircut!!! I second Dusty and pray that you guys never have to know from CD she has been through enough already. Sending healing thoughts and prayers!
 
She's so adorable! :Karl:

Good luck with the second opinion, I hope it comes soon! Adding my wishes too that CD is a complete non-issue! :ghug:
 
Figured I should share. You know how I told you down the page a ways that I was getting my own GI at Beaumont since our current hospital won't give me the referral. Anyway I called and cancelled it bc I am going to Cincy for that second opinion and finally after making the appt with the other hospital my hospital now wants to cooperate and gave me my referral finally.

Tonight at 7pm I get a phone call from the Beaumont GI himself Dr. Truding whom comes very highly recommended via CCFA and my local CCFA support group. He starts asking me questions about Rowan case and is very interested. Sys he has some of her records in front of him. I told him about me going to Cincy and he says well you need someone local, I can be that person for your daughter. You want someone whom is looking for Crohns and he continues to say that the pathologist at our hospital (Mott) in his opinion though very good is also very conservative in his diagnosis in his opinion. Said he has had a lot of kids that have had a diagnosis change from UC to Crohns that came from Mott. He continues to say he has absolutely nothing in her current records that points to Crohns but feels she defiantly deserves a second or even a third look before doing another major operation. He said he wants nothing more but for her to be UC 100% but that I need a unbiased opinion as to if there is any sign of Crohns. I didn't know what to say. I felt like I had to make an appointment as no GI has ever EVER expressed a deep concern for my daughter health and safety. He got me an appointment for Tuesday as his last appointment and after office hours bc he feels we will run over.

Then I find out he is the CCFA camp oasis GI at camp here every summer. :ghug:

I seriously am very happy right now. I feel kinda like I have cheated on my DH because I am seeking an opinion other than at Mott our current hospital. Honest to god though I am so sick and tired of being scare and waiting for that shoe to drop... please take a look. He suggested some new MRE imaging and possibly a pill cam.

:dusty:
 
Oh no I am not that is imperative! Almost all the records are sent hoping we get our appointment soon. I wouldn't do the surgery at Beaumont and I am not burning the Mott bridge either, as you never know when you might need a great colorectal surgeon. If I decide to do another SIAA or J-pouch I will probably do it in Cincy just to know I have the best on it.
 
I think that's awesome Mary!!

BTW, and I'm probably the only one who doesn't know, which of the those two beauties is Rowan??
 
That sounds like great news Mary. The fact that he was willing to step up and take control of her care is awesome. I would keep that appointment at Cincy just in case but either way, what a relief to have someone near you to take care of Rowan. And it sounds like he told you exactly what you have been needing to hear.

I am so happy for you both!!!!:emot-dance:
 
How great Mary. I'm over the moon for both of you!

Love,
Farmwife and Grace

Cute pic of the two. Their growing up so fast.
 
That is great news!! :dance: I'm so glad you've found someone who truly seems to care!! And, fantastic that you can get in to see him so quickly!

Wishing lots of luck that he turns out to be all you hope! :ghug:
 
Wow! Sounds like a dream come true!! A GI doc that shows that much concern and attention....and that come 'highly recommended'. (Not here in little 'Ol Kansas!) I'm so excited to hear how your appointment goes
 
So they called to confirm the appointment and the clerk says to me. Rowan is not in our system, how did you manage to get an appointment with Dr. Truding if you don't mind me asking. I said he made it himself last night on the phone with me. She said wow he is book out a full year and I am to advise everyone that calls requesting him that he doesn't take new patients. Your Daugther must be a really interesting case. Crohns is his thing, it says here your Daugther is a UC patient though. I said yes I want a second opinion before doing more surgery. She then says, you are going to love him then whispers.... "He is my favorite and probably the best GI in the state he works after hours and assigns the cases to the GIs... that is how he must have stumble upon your file."
 
That worked out great. How interesting that it was a case he wanted to personally be a part of, yet I guess it would be better if we just had easy straightforward stuff that was easily fixed...

Hugs!
 
The appointment went very well with doctor Truding. He spent a good 2.5 hours with me going over Rowans case step by step since diagnosis. I am sure some of my dates are off. He seems to think she does have a dismotility issue but that it's only involvement is her rectum. Based on listening to me and her always being so constipated with huge poops (softball size) prior to UC and the rectal prolapse is another sign of it. Remove the rectum cure the problem. In her case a whole new j-pouch would need to be created and hand sewn to her anus. Anal testing would also need to be done. He doesn't think that she has Crohn's Disease based on any of the documentation and reports sent to him. He is sending her for a Fecal Calp test from ileostomy sample. He did a blood and mucous test and both were negative. He thinks the j-pouch is cosmetic and doesn't believe any of this needs to be done any time soon. :) He was very thorough and friendly. These are what he stated to be a preliminary idea of where he thinks she is at and how she got there. He also said he doesn't think she had a mucousectomy, or at least a good one. Because it states in her OR notes that there was inflammation in the mucosa and how can that be if it were removed. And that she has 3 cm more of rectum than she should have. He says that makes more sense than Flagyl causing her rectum to stop moving because once Flagyl was introduced it bulked up her stools and made them harder to pass. So in fact the Flagyl was the issue but not the main reason for the pouches failure. So not the blaming of Flagyl causing this weird rare symptom but that the rectum is not working because it was always broken in the first place. Should have been removed a year ago with the first surgery.
 
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You sound cautiously optimistic, which I can't say I blame you after everything you and Rowan have been through. His explanation makes perfect sense, and how wonderful that he is willing to sit down with you and really and truly go over all of this with you.

I am really happy for you and Rowan, hopefully you have found your guy and together you can get Rowan completely healthy again.

(((((Hugs))))))
 
Oh wow! Her case sounds so complicated and really puts my daughter's course into perspective. Wishing you and your sweet girl the very best!
 
I do hope he's the one who can get Rowan well and happy for a long, long time, if not forever!!! He sounds great to take all that time and interest! Hope it all leads to a great ending of all Rowan's complications!!! :ghug:
 
Well he is not her GI yet. He was just sitting with me going over everything basically a consult. Also he is not a surgeon so he will not have much of a part in her future beyond yearly exams. I meet with another GI at our hospital in 2 weeks I am going to see how he handles it and make the decision based on that. So all in all I am getting closer. Whether or not I do a surgery anytime soon is up to her unless we get thrown a curve ball.
 
Whoa! That was a good read Mary! :) So good to hear you had such a fab consult with explanations that make perfect sense!

Good luck with the next appointment! :ghug:

Dusty. xxx
 
So we do have that other appointment. How do you think I should proceed? Do you think I should tell him what the other GI said or let him run the show and see how much he can figure out on his own by asking me questions as well. Leaving the previous consult until his is over. Part of me really thinks her hospital is going to do what they did before and basically brush me off. Her surgeon really wants her to not see Truding but to stay within the system, which I understand why as it is obvious. BUT, if they just go with the flow and not take the time or put in the effort is that really looking out for Rowans best interest.

Granted I also have a bit of a grudge with the GI department as a whole because of my previous experiences where they thought I was over-reacting and she was in need of a blood transfusion. That really ticked me off that they treated me like I was incompetent and didn't know my kid. I know let bygones be bygones but I still leaves a bad taste in my mouth.
 
Urrrrggghhh Mary! I know that feeling!

Dr Truding appointment sounds great! It is such a relief when someone knows what they're talking about!

Maybe see how appointment starts off, if it isn't going the way you think it should I would start mentioning appointment with Dr Truding!

Good luck!! :ghug:
 
I think if you are testing the waters with this GI, don't say anything about what Dr Truding said and let them take the lead. Dr Truding gave you his opinion and the new GI will give his. You can then discuss what Dr Truding said, as in, what about x, y, and z. Ask if he thinks enough rectal tissue was taken or if there is indication that a mucosectomy had been done. Finally, you make the choice based on how you've been treated in both places and then don't look back.
 
^^^^Ditto!

I wouldn't say a word of the previous consult and as Carol has said, let this doc proffer his opinion. When he has finished and if he hasn't come to the same conclusion as Doc Truding then I would ask questions based around what you now know. :ybiggrin:

Good luck!

Dusty. xxx
 
Rowan has had a virus for about 12 days, sneezing, runny nose, now all that is left is a terrible cough. She has had 2 low grade fevers in the last couple of days (100.6)

She now is not eating much complains of belly pain in the bladder/J-Pouch area. Is passing more stool out of her J-Pouch than normal. I think she might have pouchitis.

Q. How fast can they get back a Fecal Calproctein test? I am trying to avoid a scope and get inflammatory clues from this instead. Is it possible to get the test back very quickly, granted she would have to pass a decent amount of stool correct? :(
 
They have started her on Cipro to see if it helps if no improvement in symptoms I have an appointment with her new GI at Mott on Tuesday. Finger crossed. Sometimes I wonder if it is better to knock her out and scope rather than giving Cipro blindly like PEZ candy. Thoughts? I guess they are assuming based on her history of pouchitis. :(. What was the point of the diverted ostomy if it is not stopping the stool from being in the pouch?
 
Trying to hold off on going to hospital. Since we have that GI appt tomorrow. If we are inpatient the system will automatically cancel it and he won't one to the room because we have not had the consult yet. Well at least I don't think so. Her doctor told me to do the consult in an outpatient setting is best. :confused2:
 
She is inpatient high fever (103.7) uncontrolled well with Tylenol, having to use Motrin. Rotating doses every 3 hours. On IV Zosyn and Vanco. Probably stopping today. Output extremely high. Off droplet precaution now all Viral PCR came back negative. She is happy to get to leave her room today.

Scope and PICC placed yesterday. No TPN yet. Visually was unremarkable according to the doctor it had a polopy kind of look, which is normal for a diverted bowel. It was a little dilated. Biopsies and cultures taken. Awaiting results. All cultures negative. Missed GI appointment bc of dehydration, high fevers and BP 160. WBC 28.6 they are calling it viral gastroenteritis. Current GI attending is not a IBD GI, they said they will try to get me another consult with a different GI sooner.

If no improvement soon CT Scan or MRE to follow. :confused2:
 
Oh Mary, I'm so sorry you and Rowan are back at the hospital. My heart breaks that you just cannot get a break! Lots of hugs... :ghug: :ghug: wish I could do or say something more... :(
 
Poor Rowan. Really hope they get on top of it soon and she gets to see a GI who knows a little more about her condition.

Big hugs :ghug: xx
 
Well the fevers have stopped. Still scheduled for an MRE tomorrow. Ostomy output is still pretty high. Her sed rate and CRP are up, WBC is normal, Hemoglobin is 8.1. Albumin is low.

Instead of retracting her ostomy has prolapsed. It is humongous. Like a doorknob. :eek2:

They got a new attending he came from a fellowship at Cincinnati so yippee. He saw me today and asked me what was going on I explained him I wanted a GI because I think she needs one and he actually agreed and was pretty disgusted she hasn't had one here for the last year and a half. So I feel better that she now will have a GI checking in on her every time she is an inpatient here.

Cincinnati called they have all of her records and are working on getting the second opinion started. Yay... Finally. Progress.
 
Mary,
So glad someone is finally listening! That is great they are getting her a GI. Sending her healing thoughts and hugs!
 
They did an MRE because I was being extremely persistent. The results are back as possibly Crohns disease due to inflammatory changes above the pouch to her ostomy, thickened wall. As well the think she might have Primary sclerosing cholangitis. Then we did another scope and took biopsies everywhere and no Crohns was found. I guess they had a phone consult with Arnold G. Coran, MD whom apparently is the God of pediatric Surgery and writes all the sugical bibles they live and breathe by and he thinks she has chronic Pouchitis. All I know is my Cincinnati trip cannot come fast enough. Spoke with them today and they are saying in the next two weeks we will have our consult with their top doctors. Dr. Denson GI and Dr. von Allmen Ped Surg.

Discharged tomorrow.
 
Mary, your head must be spinning! Just lots of prayers and hugs :ghug: :ghug:

Glad she's going home tomorrow.
 
Mary,
Sending hugs and prayers hopefully that appt will come quickly and they will have some good answers!
 
I have schedule her j-pouch to be removed and end ileosomy tentatively for the week of Dec 3rd by the main surgeon at Mott, our surgeon will be assisting. I had a conversation with Cincinnati they will most likely be giving me a second opinion but not doing surgery there. They feel her hospital is more than equipped to do this somewhat easy surgery in comparison to all her previous surgeries. It will not be laparoscopic.

We are rushing the second opinion and rushing the surgery because she is febrile, and currently taking Cipro they just added Flagyl and more hydrocortisone enemas to the arsenal as well. Hoping to avoid the ER this time. I won't get my hopes up too much as we never dodge that bullet.

Sorry nothing happy to report. Just another crappy day in Detroit.
 

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