After the reconnect

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

QueenGothel

QueenGothel

Joined
Oct 13, 2011
Messages
1,557
Location
Michigan, USA
Well we went to her doctors appointment and they think she looks great and are not very concerned about the drops of blood she is passing. It is hit or miss. Not always present. But of course today it seems to be more than usual. As of right now she is not on any drugs. She is taking supplements and lot of them.

Tumeric 2 a day
Fish oil / 1000 Omega 3- 2 a day
VSL 1.5 sachets daily mixed in everything cold that touches her lips
Multivitamin
Vitamin c 250 mg
Ferrous sulfate liquid 3/4 teaspoons 3x daily
Biotin 500 (hair loss)
Beano before meals (when I remember, I suck this one is new) lots of gas issues.
Vit D 400


I am wanting to get this bleeding under control, so after lots of research this above is her new cocktail.

I am also trying gluten free again to avoid using Imodium. Her jpouch is not emptying properly and I am thinking the Imodium is not helping.

She starts preschool in 2 weeks. Nerves are making me a wreck.
 
I know how stressful it is when school is looming ahead! I hope the blood stops soon :). Your story has been one of my inspirations so I'm rooting for you!!!!
 
I hope the issue with the blood stops soon.
I'm glad every thing else looks good.
Is Rowen looking forward to pre-school?
 
Sending stress free thoughts your way.
preschool is hard without the medical stuff ( for the moms)
 
Yes she wants it to start now. I am glad I have a couple weeks yet. Not looking forward to it or a gluten free lifestyle. I should know within a week if it is helpful. Thanks for listening.
 
Glad to hear she is doing ok, hope the little bits of blood go away! Good luck with her starting school, she will have a ball I'm sure. Also good luck with the gluten free, don't know about where you live but our supermarkets are getting more and more gluten free foods which makes it a bit easier.
 
Wow! The docs say she looks good and aren't concerned?! Woohoo! She is excited about school...woohoo!

I am sorry you are nervous. I could totally understand. It is amazing how unbelievable on you have had to be through all of this and you just keep going...like the energizer bunny. I hope you hit on something to make that stupid blood go away.
 
Gluten free isn't so bad once you get used to it and accept it as your new "normal". We're going on 4 years now! Just holler if you have any questions...
 
Thanks for the update. Keeping our fingers crossed that preschool goes great! Have you gotten to meet her teachers yet and discuss her medical issues with them? I found if you can go in prior to school starting and meet with them it sometimes helps.
 
She was approve for free state preschool so they actually come to my house to talk with me. I will have the 504 plan printed and ready to go. Dusty she is so excited. I am nervous bc I have been on poop patrol for so long, gotta let her clean herself up is not settling too well. We are working on it.

Thanks everyone! Gluten free isn't sooo bad when you can eat less restricted. She can have corn now so taco night is coming soon. Yay!!!
 
There is a good chance we will be at the hospital clinic tomorrow. Under Rowan's exploratory laparotomyscar (after closure she almost herniated and needed another surgery to correct fascial dehiscence) there is a small lump, it is def a foreign object. Feels sharp. Hoping it is just a suture knot and scar tissue over it. Still am pretty concerned and her bowel movements have been very unpredictable with still a spot of blood now and again. Though they think it is caused by the ileo-anal staple line.

(sigh)
 
Well they basically said if it doesnt hurt, grow or move not to frett. It is probably a suture. Still seeing blood. I really is bothering me there is not supposed to be any blood. I just want them to find the source ya know. Frustrated completely.

On a good note. I have back off of poop patrol gearing her up for school and she seems to be doing a pretty good job on her own. Still is have 6-10 bm's daily though and I have titrated her completely off the imodium to see if it is a pushing thing.
 
After titrating her completely off the imodium her bm's are more liquid by have decreased to 5 a day. I find this odd. She is still happy kid even though we were finally able to catch her up on her immunizations. She got a couple shots today. She is a bit mad at me but the flu and whooping cough are not something I want her to have to deal with this year.
 
Nothing has changed... Sigh...

We are all going gluten free to see if it helps. I know I have said this before but I was being sabotaged by DH. I actually boxed up all gluten so he cannot give her any. Still having spotting of blood. Sigh...

Going to bake my first GF bread loaf packed with psyllium tomorrow. Wish me luck, I hope it is not as nasty as the crap in the store.
 
Talked to the clinic nurse whom talked to Rowan's Dr. They want to do a pouchoscopy early next week to determine if she has pouchitis, cuffitis, or a staple causing the bleeding. They almost wrote me another script for Cipro but I refused without a clear diagnosis since it didn't stop the bleeding before. I am scare to know but want to know at the same time. Biting my nails and stressed out a bit. Didn't really want to give her propofol (sp?) again.:shifty-t:
 
Thanks for the update Mary. :hug:

Good luck with the gluten free hun and extra, extra good luck with the scope...:goodluck:

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

Dusty. xxx
 
Hoping right along with you Mary and sending my wishes to Rowan from across the pond! :ghug:

Lots of love, :wub:
Dusty. xxx
 
Flex scope today on the J-pouch. It was a staple not pouchitis. No Ciprofolaxin needed. Glad I refused to give it without the scope. They won't pull the staple, it will eventually stop bleeding on its own. Having them run all her blood work whilst we are here. She is so hungry. Glad there was no sign of inflammation.

My trooper is still kicking butt and taking names. :highfive:
 
Thank God only a staple.:kiss:
Wow I never thought I'd be saying that.:shifty:
I hope Rowen can get a descent meal soon.:D
 
Glad you didn't have to get your ball vice out today :shifty:
Yay for a staple!!!!
Sending love your way for you and Row!
 
And she is not anemic anymore for the first time in a long time her CBC came back normal. I need to up her Vit D more (24). All inflammation tests were ran CRP...etc all came back normal. It feels so good to be normal. Yay for normal. Gutless and happy.

I will put my ball vice away for now... :biggrin:
 
Oh man Mary!!! This is just the best news EVER!!!

I can't even express how happy I am for you all...:):):):):):)

Normal is priceless...

Dusty. :heart:
 
Hey Mary,
Little ROWAN was the first kiddie I checked on after returning.
I am thrilled to hear she is well. Well and cured. :kiss:
She'll love preschool. All of mine went to 3hr/day nursery schoool at age 3 and pre-k at 4.
I am glad the first person I checked up on is in a good place. I so hope all the others are too...:ghug:
 
So I have been online on Facebook support other moms of kids with colectomies and possible J-pouchers. I am totally paranoid now and on the defense. I met a mom who's life mirrors mine almost identically. Same age same diagnosis, same complications, she even has a two yr old non-IBDer. Her kid was just re-diagnosed CD 6 months after colectomy. I know I need to push this from my mind but I can't seem to shake it at all.

We have stopped the GF diet, Rowan lost 2 lbs in 2 months. Not good, and my scale apparently sucks bc I was not aware.

She was home sick for a week, she had a fever the whole time. Doctors said it was a virus and my 2 yr old did get it but hers only lasted 2 days.

I am living in fear and really on edge sending her to school. I don't want a cold causing her to get sick again.
 
What's that saying??? Once bitten, twice shy. You and Rowan went through so very much, its so understandable that you would be nervous :ghug:

but, try to focus on how well Rowan has been and, as time passes and she continues to do well, I'm sure your concern will lessen! :hug:
 
Oh Mary...:hug::hug::hug::...you have been through so much, much more than many experience in a thousand lifetimes.

With that wealth of experience, pain, knowledge and memory how can you not worry about it. It is always there lurking and waiting for the perfect opportunity to pounce and this is one of those occasions.

I have those same feelings too, when I come here. When it was only Sarah that had Crohn's I felt lucky and hopeful at times but then when Matt was diagnosed it changed. I didn't have those feelings anymore, I often think to myself...what are the chances that both of my children are going to have an easy go of it now that we have things under control.

I know it's hard Mary and even harder to keep the thoughts at bay but as Tess has said, as time goes on it will get easier. I know you are just over the six month mark yourselves, as each day passes you move further and further away from that milestone and the stories become less convergent and I hope more than anything it continues that way Mary. I wish it with all my heart. :heart:

In my thoughts and prayers, always.
Dusty. xxx
 
I trust all is going well Mary and the post is related Thanksgiving Day...:hug:

Thinking of you guys, always. :heart:
Dusty. xxx
 
Rowan has had her 4th tummy ache since Monday. I was thinking blockage so I cut out the Lopermide for 2 days and it seemed to help. She was passing pure liquid yellow for a whole day so I gave her a dose today at 3am and after lunch the belly ache is back. I am so sad about this. I want to cry she asked for her heating pad which she hasn't wanted since the colectomy and it is bringing a lot of my fears to the surface. :yfrown: idk what to do, I have a call into the clinic nurse and a post on J-pouch.org with no response. I wish I had some better places to help me like you all were there for me before. This totally sucks. I feel so alone right now.
 
I'm so sorry Mary, it seems our worries are neverending at times! Have you ever tried to post these type of questions on the surgery subforum, where you may find other members with post-surgery experience? In any case, you are not alone as we are all here! :ghug:

I hope you get a call back from the nurse soon! And even hope more that the tummy aches just disappear!! :ghug: :ghug:
 
Yes I have a few out there and here but no one seems to support me quite like you guys have. Even though we are not going through the same thing sometimes it is just nice to know someone is listening and cares. Thanks
 
Oh Mary we care and worry and hurt right alongside you. I hope she feels better soon and that you get some clear answers.
 
Oh Mary I saw this and had to hop on.
Does Rowen have a fever? Does she seem off in other ways?
Does anyone in the house have a virus? Sorry I'm just thinking out loud.
I'm sure you've already thought these things.
Grace is sick:thumbdown: and now her bother has it but....she seems to be way worse. You can drive yourself nuts doing this all day.

Hugs to Rowen and you. Let us know what the nurse says.
Call again before the day is over.:shifty-t: Sound familiar?
 
No fever. Still waiting ill call back at 4:15 before they close if I don't get a call back soon. If I cant get through I will email her surgeon. Luckily she is so good about getting back with me through that channel!
 
Stomach ache seems to come and go. No pain when I push on her belly. BMs are completely liquid and yellow and foul smelling now. Lots of gas. She says she is hot thermometer reads 99.2 so not a temp. Still waiting. Ugh. I hope they don't say Cipro again. The nurse tend to say Cipro a lot.
 
...and they called in a script for Cipro as I thought. Well at least it will bulk up her stools and relieve her of gas. 2 week course then a re-evaluation of symptoms. They suspect pouchitis. Next appointment in February and they are hoping to take care of everything over the phone until then. They do not suspect blockage bc she is not throwing up or having a fever.
 
Mary,
Sending hugs, hopefully that is all it is and the cipro will work quickly! I totally understand the worrying though! we are all with you there!
 
I really think it is a partial obstruction and I am putting her on soft foods and liquids for 24 hours to see if it all improves. Get her dancing or something! Keeping her from school tomorrow I think. She is not happy about it.
 
She seems fine now. She is running around, I have been tickling her so she will contort her body and I made her drink some grape juice though she is a fighter bc she hates juice. She didn't really ask for any dinner, I gave her a small helping of mashed potatoes and she ate about 5 bites and said she was full. She has drank about 30 oz of water since coming home from school. Trying to do all of this to get a blockage to break loose. This is what was recommended by jpouch.org so I am hoping for some results. I have left over Cipro as they wanted me to start her on it. Previously it bulked her up so much that her stools were formed which is sooo not normal for her jpouch. Scared of that happening and making an obstruction worse. :eek:

I plan to keep her home so I can keep an eye on her an push liquids. I have a wedding tomorrow and it is a hour away. My sister (who is an RN) is supposed to keep them over night. Idk if that is going to happen or if she can deal with that. Being she is so loose right now. Totally stinks 4 days ago she was fine and sleeping through the night. I am just doubting this pouchitis theory bc I know she woofed that food down before all this started. Sorry if I am rambling. Am feeling a bit :yrolleyes:

Time to put her to bed. Praying this lets up.
 
Will keep you guys in my thoughts and prayers! Hopefully if it is a small blockage it will resolve on its own!
 
Oh goodness Mary !

So sorry hun, you are such a great mommy !
I hope it easies for her quickly

xoxoxoxooxo
 
Oh Mary, your poor little princess and what a worrying time for you! :hug:

How is Rowan today?
I so hope she is getting on top of things.

Sending you loads and loads and loads of love and healing thoughts. :heart:

Dusty. xxx
 
Thanks everyone. I have elected to start the Cipro and give it 48 hours if no marked improvements getting her into the clinic on Monday to see someone as her surgeon is working out of Beaumont this week.

Dusty if it weren't for the symptoms she is fine, playing laughing, making jokes. Her urgency has increased but this is no shock since I have been pushing all liquids and soft foods without Imodium. No pain complaint today. Waiting on the Cipro. I hate waiting.:angry-banghead:

Of course this happens right after I write her success story. Seems like when I say something positive it gets me everytime.
 
Last edited:
Oh, Mary I am so sorry Rowan is having such trouble. :( It stinks to be on Cipro all of the time but I am hoping it does the trick.
She is such a strong fighter, and I know it is tough for you to see her go through all of this. (((HUGS))), mama. I SO wish we were closer. Sending our love to you and Rowan. :heart:
 
Myreinhard said:
Of source this happens right after I write her success story. Seems like when I say something positive it gets me everytime.
Click to expand...


I know what you mean. I said Grace is doing better so I'm waiting for the other shoe to drop.:shifty:

Is she doing better? Did you go to the wedding?
 
Thinking of you Mary and Rowan. :hug::hug::hug:

???Ton of loops = backed up. :(

Sending love and healing vibes your way...:Karl:...:goodluck:

Dusty. xxx
 
She has been admitted. Hasn't had a BM since 3am. Got an IV and waiting to see what is next she is NPO. Hopefully this passes without needing the OR. Very Nervous!
 
So sorry to hear this!! :(

Sending lots of hugs your way :ghug: :ghug: :ghug:
 
Had a small BM very foul and green in color, sending it off for testing. Some gas too!:poop:

Hopefully it just takes IV fluids and bowel rest to get things moving again. They took her off Cipro do you think one dose would mess up her flora?
 
I wouldn't think so but never say never.......

Praying for no OR.

Hugs,

J.
 
I wish they would let me keep giving her the VSL they won't order it up I don't think. I will ask tomorrow morning. Won't see the team of docs until then, her Surgeon will be here too I think. Admittance was a breeze. I can't believe we got her normal room and everything. Weird how that keeps happening. I know the phone number by heart.

They tried to give her a potassium drip. I was like :nonono: her potassium is a 5. WTH were they thinking? Gosh I hate new residents.:ybatty:
 
Just sending lots and lots of hugs your way...:hug::hug::hug::hug::hug:

Take care ..my heart breaks for you and your little girl.
 
Oh my gosh Mary I am so sorry to hear this. Hugs and prayer coming your way.

New residents? In your haste to get to ER you DID pack the vice right? Do you need FW to swing by the house and get it for you?
 
Oh Mary...:hug:...I hope it all resolves by itself. Bless little Rowan, she is such a trooper. :ghug:

Sending loads of luck that all is well on the morrow! :goodluck:

One dose of Cipro...I too shouldn't think so.

Dusty. xxx
 
Catching up on threads, sorry Rowan is feeling so badly hope they are taking good care of her at the hospital. Sending lots of support and hugs
 
Thanks all. Vice in hand. Gotta keep those new residents learning ya know. No time like the present.

Urine is very yellow, almost neon. yikes! They are checking her for UTI. Surgeon said it is common for a UTI to stop the bowels. Anyone hear that before? Haven't found any info on it don't know if its a jpouch thing or not.

She is sleeping now and I will be too.
 
All right Mary here it is 1:30 in the am and I'm checking on you guys.
I'm glad she went poo a little.
Two severe bouts Grace had was during UTI's.
I think Crohn's Mom has some similar problems, right T?


Back to bed after putting Grace to sleep after a bad bout of eye pain. I guess that's what I get for saying she's better also.
 
Myreinhard said:
Thanks all. Vice in hand. Gotta keep those new residents learning ya know. No time like the present.

Urine is very yellow, almost neon. yikes! They are checking her for UTI. Surgeon said it is common for a UTI to stop the bowels. Anyone hear that before? Haven't found any info on it don't know if its a jpouch thing or not.

She is sleeping now and I will be too.
Click to expand...

Thanks for the update Mary...:hug:...I hope you are both able to get some peaceful sleep.

I'm not sure about a UTI causing constipation. The only thing I can think of in that respect is some people tend to drink less due to the painful voiding and drinking less would tend one to constipation.

The other way round isn't uncommon though. Constipation can lead to you not being able to empty the bladder properly so you have residual urine there. Having that urine sitting there can create the potential for perfect breeding ground for bacteria.

I hope Rowan will be alright hun...:ghug:

In my thoughts, :heart:
Dusty. xxx
 
Just getting caught up. Sorry to hear Rowan had to be admitted! I agree it's scary dealing with docs that seem to get things wrong. Hope they get her better quick without surgery
 
Today they are either going to decompress with NG or do a CT Scan or both. They want to see of she gets better on her own, since she is not vomiting YET. I requested the CT if I can have an opinion that is mine. I made them aware and hoping to get this done soon. I don't feel the X-ray is the best image for this situation, though it got us admitted, I want to see exactly what is happening.

They elaborated on there UTI theory, saying sometimes though rare a UTI can cause an ileus with a jpouch bc if the bladder doesn't empty properly it can put pressure on the jpouch. I don't think this is what is happening. I go on my hunches a lot bc I tend to be right somehow with my mommy intuition.
 
Hugs ...
Just got caught up with it all.
Glad you are teaching the residents.
I hope the ct shows improvement and she can move things on her own.
 
I am so sorry sweet Rowan is inpatient again...(((hugs))) mama!
Did you get a final report from the radiologist?
and good for you to rely on those hunches...they got us this far! Darn residents!
I will be thinking of you this weekend. :heart:
 
Oh Mary...:ghug::ghug::ghug:..this is so not fair. :(

Sending all the luck and healing thoughts in the world that Rowan is able to kick the C Diff to the kerb pronto! Bless her heart. :heart:

Dusty. xxx
 
My question is how the heck did this happen? She has not been in the hospital or nursing homes. She takes VSL even though no Saccharomyces boulardii she has never had c.diff before. She hasn't been on Cipro since August. I am just so frustrated. Could she have gotten it from school? My cat? Door knobs? I mean I know super bugs are everywhere but come on. I was a Germaphobe before. We even have a freaking bidet.

Where the hell did I put that bubble, we are all going back to the damn bubble. Jk
 
Mary we all can carry c. diff naturally.
Now it does sound like she had it.
Grace had it.

Forgive me...but does Rowan have her colon?
If not then the c. diff is in the small intestines and we were told that's harder to treat because c diff can route in deep. Don't LEAVE until you feel the c diff is uncontrolled. Meaning the stool is back to normal for her and not as smelly. This is serious stuff and most hospitals don't yet know how to treat it properly. Are they wearing gloves and gowns? Are they washing hands before and after. If not that's a good indication they don't fully understand what this bug can do and how it can spread. The CDC has a great outline on hospital proceeder on how to treat this and stop it from spreading. Your house needs to be clean with bleach. Nothing else works. If you need all my research I've done let me know and I'll send it all!
Grace is the youngest c diff patient up here.:frown:
 
UGH, Mary. C diff sucks.
I am so sorry. :(
Ditto to bleach, and everything needs to be washed in HOT water. Plus I am sure she is stuck in her room on precautions.
I am wondering...you said she WASN'T on probiotics?? THese may help to keep her well after it's cleared up.
Glad to hear she's getting vanco as opposed to Flagyl.
 
They aren't gowning up unless they are coming near Rowan or helping her or cleaning up her poop. They told me to wash my hands often and to bleach my home. They gave me an insert about how to kill it at home. Basically bleach everything. Ugh. I have been reading up on it and I guess it not very common with the colonless, but it does happen and there is a lot of info on j-pouch.org about people that get it and get over it.

They believe even though Rowan has gotten paralysis from it that it was caught early and they are treating it with vancomycin which is for severe c diff. They aren't messing around they said they will give her 24 hours and if a significant improvement doesn't happen she will get either a NG tube or cat scan for possible obstruction.

This is so screwed up. I can't believe a week ago things were good. I don't want to read anymore bc I can't read about how many more people die from it every year and how they are getting stronger and stronger. I feel completely sick from thinking about it.
 
izzi'smom said:
UGH, Mary. C diff sucks.
I am so sorry. :(
Ditto to bleach, and everything needs to be washed in HOT water. Plus I am sure she is stuck in her room on precautions.
I am wondering...you said she WASN'T on probiotics?? THese may help to keep her well after it's cleared up.
Glad to hear she's getting vanco as opposed to Flagyl.
Click to expand...

She was taking VSL 1 sachet a day. But not florastor with Saccharomyces boulardii I didn't even realize it. I feel so uneducated all of a sudden. Wtf ya know.
 
Then don't read any more.
Rowan is a t good hospital and they sound like they know what their doing.
They caught Grace's early also and she was bouncing around with in 24 hours IF that.
The fact is most Poeple get it bad because they think it's just a normal bug and carry on. How would they know differently.
If hubby or your baby get the runs have them head in right away.
BTW-None of us got it.
 
I am just so freaking tired and really don't want to go home and bleach my house the good news is I don't have any carpet so that is good. Sick completely feel like a dirt ball who doesn't clean or something. I know I am not but you can't help but think damn I should have clean the toilet twice a day. So stupid I know.
 

Similar threads

C
Our SCD Journey
Replies
34
Views
8K
crohnsinct
C
R
My Story - hoping for some advice
Replies
13
Views
4K
D Bergy
D Bergy
H
Help for husband/patient who had J pouch in 1989 serious problems now.
Replies
4
Views
1K
Dyana
Dyana
SophiaS
New diagnosis and super confused/scared
Replies
5
Views
2K
Scipio
Scipio
B
Middle-Age Onset CD
Replies
13
Views
3K
Lizzie
L

Latest posts

Back
Top