J-pouch Obstruction Surgery

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Nope! Sorry! You are NOT to blame one bit! You did what we are all encouraged to do...trust the docs! I don't understand why they didn't pull her doc in and keep her advised anyway. Seems like a no brainer to me.

Hun, I know about that trust thing and the wall and full out predator mode. I am right there with you but you are not to blame!
 
She still has the NG and is still outputting quite a bit. She played a lot today our friends from camp met us here today, it was a nice meeting they are a family of 6 and 3 of them are 5 and under so Rowan was so excited to see them. We went to the conference room where every Thursday they have pizza and our friend Bob sings songs and plays his guitar, Rowan loved it and our friends got up there and sang along with him. She couldn't eat pizza though but this didnt seem to bug her, she did not complain.

She pooped twice and farted a lot. This made me happy, very happy.

The dept head replied today that he would be looking further into Rowans case and would be getting back with me soon after he reviewed it and spoke with a few different people.

Tomorrow at 9am she is scheduled for another enema contrast study. :( not looking forward to it the last one was terrible, her dad is coming to help me hold her down for it. Sucks! It is what it is. I wish they'd just put it in her NG tube.

Going to get some sleep. Thanks for all the confidence and support. I think I just suffer from Cindy Brady syndrome where I feel like I tattle tailed, I still know it was the right thing to do. Tearing down the walls daily, they are still working out the logistics of the consult in Cincy. Hope the pipes just start working... this would be a blessing.

Time for some stand up comedy via iPad and Netflix. Laughter is the best medicine sometimes! Good night all, ill catch up on all your kiddos very soon.
 
Happy to read she had a nice day :) I wish they could give Rowan something to relax her during the enema! Hope it is not too terrible today. Please do not feel bad about your 'tattle'. Good should come from it - even if for the next complicated case.
 
So glad to hear she had some fun with friends.
I'm glad she not begging for food. Grace has yet to ask for the any food. I think they know the feel better, so why make it worse.
Hugs to you both.
 
Her belly looks normal today for the first time in a long time. She had 3 bm's yesterday and passed a lot of gas. I am hoping this study shows her belly to not be so dilated anymore. If so they might remove the NG tube. Or at least switch her the independent drainage. This would be so nice, if she can get that thing out. She is so miserable with it in. She actually says I hate this tube in my nose. More to come fluoroscopy at 9:30am
 
Still loopy but dilation is less than it was. Bc of the recent bm's and gas they have changed her NG status from wall suction to independent drainage. If she becomes distended we will have to go back to wall suction. Hoping we are moving in the right direction now anyway.
 
So quickly how things change, they just told my DH. That my information was the priliminary results, now that the radiologist and the surgeons talked they think she still has a narrowing of the ileostomy anastomosis. They want to start feeding her water tomorrow to see what happens. I it goes bad preparing me for exploratory laparotomy surgery next. Idk how well I am dealing with this information right now. I am thinking balloon dialation at least so she can have a break. I am not comfortable at all right now, still waiting on the Cincy factor which seems to be going very VERY slow. Frustrated still, got my walls back up, trying to not speculate outcomes. Sounds like a vicious circle of future issues. They want to do the laparotomy to be sure and feel with their hands to know what exactly is going on vs the laparoscopic technique. Thoughts?
 
Well, the only thing about any of your and Row's experience that I know anything at all about is your worry about the "vicious circle of future issues". And Mary, you just can't let that rule you. You do the best you can with what you have right now! And we all know you've done nothing less than that! Of course you're not comfortable! No parent could possibly be! God bless you all!
 
Oh Mary, I'm sorry. My heart hurts for you, your family and Miss Rowan. I know your mind and emotions are up and down but I want you to know that kids are so amazing and resilient. Once these health issues get taken care of she will bounce back to a happy healthy little girl. I so wish you all were closer - I've told Ellie about Rowan and she wants a friend who 'understands'.

Let me know if you need anything!!
 
Sorry to hear things are getting more stressful again. Unfortunately not much you can do but roll with the punches and keep getting back up. Wishing you loads of strength! :hug:
 
Oh Mary...:ghug::ghug::ghug:

My heart breaks for you hun. :heart: I know the feelings you have about not being that Mum and taking matters further. I faced the same this time two years ago. As strong and competent as you are you still feel so alone and vulnerable. You are there for child and you shouldn't have to be thinking for everyone else, least of all the doctors. Unless they have walked a mile in your shoes then they don't understand the pain and helplessness you feel when you can only sit by a hospital bed and wish and hope with all your might that it was you in the bed and it would all go away. Jesus, when will they ever realise that we don't want to be there and given a choice we wouldn't. :hug:

I was not in the situation you are now Mary when Sarah was facing surgery. Sarah was undiagnosed but she had been suffering for so long that I wanted them to open her up and look at and feel what was happening to her.

Always in my thoughts and prayers Mary. :Karl:
Dusty. xxx
 
The good news is her belly looks normal enough for them to try to feed her the water. She is acting normal and not sick, but this has been going on for months now. I asked them to not pull the NG in fear that they will just replace it again in a couple of days. Idk what they plan to do... my guess is they will want to still remove it. I hope all goes well. I just don't like the idea of adding more scars to my kids already very scarred abdomen. Thanks all for the advice. Trying to stay calm and not break stuff. ;)
 
Thinking of you Mary and sending loads and loads and loads of love and luck across the pond. :heart::ghug::heart:

Dusty. xxx
 
She had 5 bm's day before yesterday with NG in no suction, 3 yesterday with it out, gave her about 16 oz of water total today and 1 BM. We are trending in the wrong direction. Preparing for surgery mentally now. :(.
 
Could it be that there's just not anything in her gut to come out at this point since she's been npo for a while?
 
Hi Mary,
I was thinking what Xmdmom said maybe because she has nothing in there less came out but I don't like to hear she is getting former again. Sending lots of hugs and prayers your way. I am just hoping we hear good news from you tomorrow and no surgery is needed.
 
Yes idk how that works in the past when she has been NPO she still had bm's all the time it was just all bile. It has been all bile for the last 4 days. She did have that contrast enema to they used Gastrografin so it might have emptied her out so might be why we saw more.

I am just sick with worry, my mom is up the they are having a sleep over. It doesn't even feel right not being there. Why can't anything ever be easy for her, like cross the T's dot the I's and help my kid and let's be done with it. We have been waiting for 11 days now and then what is going to happen? Another 2 weeks of TPN you know she is going to get another ileus from them playing in her dilated intestines. I am just so worried, it feels like there is like a big hole in my chest. Worst feeling ever. I just dread going in there tomorrow, and hearing them drop the bomb on me.

Probably going to be doing a follow through study again where she drinks the Gastrografin, I be damned if we are leaving that f'ing machine without watching it with my own two eyes.
 
Sorry I need to change my tune. Tomorrow is going to go great. I got to have hope. I don't mean to worry you all, either. I need her home. I get stressed out. If you haven't noticed. I have got to restore my faith. Nothing is in my hands and I don't like to not be in control. She is going to be fine, I know it.
 
Rowan got distended again today with just an 8oz glass of LF milk and 4oz LF ice cream. She is NPO again, fluoroscopy scheduled for tomorrow. Same stuff different day. Soo frustrated still. No word about Cincy:thumbdown:
 
Goodness, I'm so sorry for all she and you are going through.
Somethings gotta give soon !
:hug:
hang in there momma
:hug:
 
Praying for some good news tomorrow.

Cincinnati Children's was shut down today because of Martin Luther King day. I couldn't get into any of the labs for Johnny's blood draw. Hopefully they will get back to you tomorrow.

Keep that chin up Mary, you and Rowan will get through this.
 
You are certainly not insane!!! I can't believe you have been dealing with this for so long without an answer yet! :ymad: Praying and wishing that you finally get an answer soon!!
 
Definately not going mad, I would be too! With that amount of time I would also have expected them to have treated her and everything getting better! Thinking of you.
 
45 days of not clearly knowing what's going on and a lack of sustained forward progress.. ... it seems time for the second opinion. Hang in there! Sending positive thoughts to you and Rowan!
 
I hope that today brings better things for you and Rowan. You are all in my thoughts and prayers. I went to my first support group this weekend for Crohn's and Colitis. There were people I was able to meet who have been through so much (much like you and Rowan!) and are now living normal, healthy lives. I know that you all are going to get through this and that you'll look back and wonder how you made it through but you will have done it. :)
 
Well that was forever. Drank the contrast at 8:45am she just got done at 2:45pm. 5 hour transit without a colon. Talked with the radiologist he didn't see a narrowing is still reviewing the imagining. Waiting for the doctors to come talk with me.
 
Her current diagnosis is an ileus. They are going to review her case again and talk with the group of Doctors again about her case. I really hope this is fixable.
 
Well her surgeon came down and said even though her follow thru appear like there was not an obstruction she is finding it hard to believe that all of a sudden Rowan got am mobility issue. She has the doctors information at Columbus (not Cincy) whom is the mobility guru, but says that they will not deem her a mobility issue unless tissue and muscles samples are taken. She has scheduled Rowan for an exploratory laparotomy for tomorrow afternoon, she also will take the muscle and tissue samples to collect for mobility study. She says she wants to fix her and doesn't believe the follow thru results are correct even though it was performed perfectly. So fingers crossed she finds the obstruction and Rowan doesn't have a mobility issue which would require her to be on long term TPN. Very nervous of course and scared.
 
Don't google it trust me....
If it is mito
I know a few good moms who can help you
Until then not worth the extra stress . Kwim
 
No it's very rare.....
Trust me I know a few moms whose kids have it
Most find out by time they are two or three .
Most have way more than R going on with multiple systems not just Gi.
Other one may be etlhers danlos - it can effect motility
But the muscle biopsy made me think mito .
Sorry to have mentioned it
 
I am feeling concerned reading what's going on. I don't understand why the surgeon proposes an exploratory lap when there is no evidence of obstruction on imaging. I know surgeons want to fix patients especially if they think they made the problem in an earlier surgery, but I'm not sure about "going in".

What kind of motility issues do they think she now has? If she never had them before, they don't just suddenly appear -- that would be extraordinarily rare, I think.
Motility can be affected by electrolyte abnormalities, drugs and even infection. I saw a case report of Cdiff that caused prolonged ileus as a sole manifestation http://link.springer.com/article/10.1007/s00384-003-0541-9?LI=true

I would think genetic type causes of hypomotility would be very far down the differential diagnosis and not a reason to do surgery. I would want a second opinion if there is time and no emergent reason to have another surgery.
 
I really don't know what I'd do if I were in your situation. You certainly have a better sense of your doctors, than any of us can. I am sending lots of HUGS and well wishes to you and Rowan.
 
There actually are two purposes for the lap one to explore and find obstruction and the other to take the tissue samples. All of her numbers are spot on, electrolytes, infections, CBC, I think they are a bit stumped and want to test her muscle. I don't know what to do at this point but the doctor in Columbus said that she needs an ex-lap to rule out a blind loop causing it and the need of the muscle samples for testing. I don't know. She made it out to be like this is what is required to rule everything out in order to move forward. She doesn't think Rowan has a mobility issue. The only thing that worries me is there is no bottle neck anywhere. Even her jpouch was dialated but granted she was also on the vanco which caused her to have pouchitis. I don't know, I just know enough is enough and I can't keep doing this anymore. :yfrown:
 
I wish I could type to say how I feel but I can't.
All I'll say is your in my thoughts and prayers. I wish I could do more but I think that's the best thing I can do.

Love ya guys!
 
This is just beyond believable at this point. I am so so sorry you are having to endure all of this and poor little Rowan. We are all hoping and praying for you both!
 
Just catching up on your sweet Rowan. I am so sorry she is going through all of this. Praying for you all.
 
I just sent her doctor a note bc I want her thyroid tested I have severe Hashimoto's thyroiditis and I want her levels checked. My sister just called me and told me Hashimoto's can cause an ileus if untreated.
 
Mary - you are a great mother and I know you won't let up. Wish I could do something besides grimace and clench my fists on your behalf and your sweet baby's behalf.

Hug, prayers and more prayers,

J.
 
QueenGothel said:
I just sent her doctor a note bc I want her thyroid tested I have severe Hashimoto's thyroiditis and I want her levels checked. My sister just called me and told me Hashimoto's can cause an ileus if untreated.
Click to expand...

What do you take as treatment?

Hang in there Mary…the poor girl, bless her!
 
Dexky said:
What do you take as treatment?

Hang in there Mary…the poor girl, bless her!
Click to expand...

I take a loaded dose of Levothyroxine, and unfortunately I still get nueropathy in my left leg all the time. I actually have had to cancel 3 appointments for myself recently bc I am still so symptomatic, my plan is actually to start taking LDN and maybe thyroid armor to try to treat all my hormone levels, where the Levothyroxine is just T4. Been reading up on it and there can be a lot of hormones that are out of whack and just correcting the T4 makes me appear on paper like I am ok but I still get symptoms from not treating my T1, T2 and T3 doctors believe that treating the T4 should correct all the levels but this is not always the case hence why many people with Hashimoto's get a secondary auto immune issue.

Just got her numbers back and she was within normal range, though 4.14 TSH is higher than she should be. I will keep an eye on it. Still going in to the theatre... Scheduled for 11:15am
 
She is out of the theatre. Just had the consult, Doctor said her omentum was wrapping itself all around her upper intestines, she removed it completely. Been an issue since first surgery. Very large thick adhesions all over the upper part of her intestines. She is 90% positive she fixed her. She has a catheter, NG tube and an epidural pump. Still on TPN. Waiting to see her now.
 
Oh and they gave her a revision of her original wound bc the wound vac left it not so pretty so it looks a lot better. Hoping the pipes work well in the next few days! Thanks everyone. :rosette1:
 
I have no idea about T1-4 but that's the most hopeful you've sounded in a while so praying and hoping for that 90%!!
 
lol Dexky that was my hashimotos I was talking about. The important thing is the doctor thinks she fixed her, so this leaves me hopeful. I think I was losing my trust bc there was so much uncertainty before. The Fellow whom was in surgery with Rowans doctor actually said the omentum looked like a big spider on top of her upper small intestines which was weird bc she had no surgery there so they were a bit surprised to see so much adhesion's so high up not related to her surgeries. Even though there was no clear obstruction, basically if this doesn't fix it she has a mobility issue that I will have to see a specialist about. Praying we do not have to do that and this was her fix. I am still nervous, but yes very hopeful! Her doctor giving me a 90% certainty is not her style she is very conservative and never talks like that but to see her doctor smile like at last a success, was so refreshing. She can be very pessimistic (doesn't want to give false hope), so to hear optimism is refreshing.
 
Well that's great to hear. 90 percent is good odds. You both deserve some good news.
HUGS to you both.
 
oh and they didnt take any tissue samples or muscle samples bc they said her anastomosis sites were both open and were not thickened at all. they didnt want to cut into her bowel so she would have aclean surgery and would heal up faster with less chance of infection.
 
So happy to hear that they think this will help. I hope this will be a step in the right direction and Rowan will be feeling better with each day! Sending hugs and still keeping you both in my prayers.
 
WOW! I surely hope that finally resolved her problems. The omentum ... WOW! It is too bad the omentum cannot be visualized better on imaging.
 
She is not in any pain. Has an epidural, (delaudid) doesn't want to do anything but watch tv, won't talk with the NG in, it is still pretty soon after surgery. I am supposed to get her up in a chair twice today. Not looking forward to that struggle at all. Just wishing, and hoping, and thinking and praying and waiting.
 
The epidural is definilty the best thing! It was a miracle for caitlyn when she had her surgery. Don't let them take it out to soon. Caitlyn had hers in for three or four days. She had a little trouble walking because of it but was able to do it with two people supporting her. By the time it was out she was on her way healing up and barely needed any pain medication. Send Rowan hugs and tell her she has lots of people thinking about her and wishing her to get well quick!
 
I just wanted to wish Rowan a greAt big
Get well soon from me and Lucy x x
Also to say Mary you are a great mum
And your doing a wonderful job x x
 
She sat in her chair for about 2 hours we played Sorry sliders. Then she slept for 2 hours. No pain. She gasped for air a few times today and it freaked me out, I told the nurse, the doctors, pain management. They weren't concerned. Said she was doing good. She also is getting IV Tylenol. I get to go home tomorrow until Monday morning. Nervous!
 
Oh my goodness Mary...:hug::hug::hug:...so, so much that you and your sweet girl are going through.

I hope, wish and pray more than anything that the surgery has resolved all of Rowan's problems, bess her. :heart:

:getwell: Rowan!

Are things still going well post op hun?

Thinking of you both. :ghug:
Dusty. xxx
 
She walk down the hallway yesterday. Her incision looked a bit pink yesterday, they might open it to drain. I am hoping it looks better today. The catheder is irritating her they might take it out, and see if she can pee without it with the epidural. Idk yet. I don't like being at home. My mom is supposed to go there tonight, but if she starts having more setbacks I might just go to the hospital tonight. Waiting is the tough part.
 
She pulled out her epidural this morning, so catheder is coming out next. Trying to decide what iv meds to give her while avoiding an ileus. Ugh hoping the delaudid doesn't wear off too fast.
 
Sorry to hear that, I was afraid there would be a sudden surge of pain when my epidural came out, but it didn't happen, honestly. I have been following this thread and so hope this last op fixes things for Rowan. You are a fantastic mum. Best wishes xxx
 
Not an easy day for her. They didn't give her a double lumen picc last week like they were supposed to. Soo they tried 3 times to get an iv in an failed all 3 times. She is getting nothing for her Pain now. :( WTF?

They are adding dilaudid via pca. Which of course is not compatible with tpn and lipids. Poor kiddo
 
Wow what difficult path you and little Rowan are on, Mary! I'm so happy to reach the recent post about the surgery and adhesions, etc. I pray that she will not develop any more adhesions and that she can move on in healing and get on with life! Hugs to both of you and thank you for sharing your journey with us -through the good, the bad and the ugly. Sorry I haven't been able to read through this until now...
 
In my thoughts Mary and Rowan...:ghug::heart::ghug:...and sending much love your way.

:hang: Mary! You are doing so wonderfully well for your precious girl. We are all thinking of you and are with every step of the way.

Dusty. xxx
 
They decided to try iv tylenol and toradol. I don't like toradol bc it is an nsaid don't know if it even matters now bc she technically doesn't have UC anymore. It was that or morphine I picked the less of two evils. Trying to avoid that darn ileus from sticking around for too long. She hasn't had any real pain since the epidural came out. Hoping to escape without any more setbacks. Drs say her incision looks really good. My mom is going there tonight. Hope it is an uneventful evening for both of them.
 
Toradol actually works really well for pain and hopefully used short term should have limited side effects. Continuing to send healing thoughts!
 
So glad to hear. HUGS
No walking outside. Up here we got a foot of snow with an inch of ice on top. It's crazy up here! It's raining!
 

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