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So very happy for you and Rowan!!! I can only imagine how happy you will be to finally go home Wednesday! AND with a treatment plan! I hope she continues to improve and is feeling much, much better very soon! :)
 
Rowans diagnosis is severe ulcerative colitis. We are home and beyond getting her muscles to work faster she seems to be getting along just fine. She is back to playing and smiling again. Now I just have 2 months of steroid rage to deal with. Mood swings are crazy they took her down from 36 to 20 but she still is mean and then sweet 2 seconds later. If I could just get her to take a bath now. She is freaking out still about where the picc line was. I got to get her in the tub tonight. She kinda smells bad. Lots of sponge baths for over a month. The kid needs a good scrubbing. Thanks everyone we go for our next infusion on march 5th. Hoping we keep this good thing going for as long as possible.
 
So happy to hear the you are home !! :)

Good luck getting her into the bath! LOL ~ I bet you'll take that drama over the last months drama tho !

I hope things just continue to move in the right direction..you all deserve it!
 
Ohhh and I bought her a kitty. She is 8 months old and is being spayed tomorrow. She is very affectionate and hopefully a great distraction for Rowan. Rowan named her Olivia. She wanted a boy named Oliver but Olivia will be great.
 
:kiss: Oh Mary, I've been watching for Rowan updates. God love her.

AWESOME. She sounds like she's feeling great, I cannot believe how fast and well the med worked, and I am so glad. This is like the third happy post I've read today and I NEEDED to read them!

I'm glad you got her a kitty! I saw a fabulous dancing kitty thingie on a post by Dusty in another thread...Dusty, please come on here and post it...
We still have the parakeets in a macaw cage that Violet requested when sick. She says they are annoying now. :eek2:
 
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Oh no !! You've requested the dreaded creepy dancing kitties from my Cimzia thread !!
Dex.....get ready to request bump posts !! LOL
 
YEESSS...I saw them in your CIMZIA thread...I read so many threads today I couldn't recall wherein I saw them..
THEY RULE
BRING ON THE KITTIES for ROWAN
 
Such wonderful news, mary...welcome home to rowan and olivia :) I say let her be stinky one more day, though ;) I am so glad to hear that you are home and have a diagnosis. Hoping that remi continues working wonderfully!
 
Hahahahaha, in ya nightmares Dex!

Now, the first one has all the moves but perhaps the second one is still the favourite!...

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Fab update Mary! I am so happy that Rowan is home! Bless her...:hug:...Everything crossed that all continues to go well!

:mademyday:
Dusty. xxxxxxxx
 
LMAO Dusty !
I still find the larger ones a bit creepy, however, you're right ~ the first ones have all the moves ! Those are some little cuties ! LOL
Sure hope Rowan enjoys them :)
 
So glad to read you are home and have a new family member! :)

And, HOORAY, HOORAY, HOORAY that Rowan is feeling better, mood swings and all!

I hope she just continues to improve!!!
 
So happy Rowan is home and feeling feisty! And a new kitty too. :cat:

Great news Mary, thanks for letting us know how she is doing. :)

Tiffany
 
Well last night she got up during the night with d 3x and a low grade fever. Doc said to watch her. Worried again. Doc says it could be constipation too even though I am not seeing it. Giving her miralax today. :(
 
I well recall that minute by minute feeling when they first come home from hosp! :(
It seems like the day when you can relax will never come...but it will. She'll be well and you'll be calm again. :ghug:
 
She is laying around not eating much. Have to push water on her. I am so worried I will be back to the hospital. I can't do that again right now. I have white coat syndrome too.
 
Oh for God's sake...that just sucks. :angry-banghead:
Mary, what about using an NG tube for hydration/liquid nutrition just until she stabilizes? I know enteral nutrition doesn't do much for UC, but I mean just for the nutrition and fluid factors?
I sound like I am in love with the NG tube but I know it was and is such a comfort with Violet, knowing her nutrition is covered whether or not she eats enough.
 
She loves to eat. I am going to make her drink a nutren jr if she doesn't eat something tonight. She at a eggo, bowl of grapes half an apple with pb and string cheese and milk and water today.
 
Got some nutgen jr in before bed and she vomited it up. It is nasty stuff. Gave her the miralax this afternoon... Something finally broke thru... hard broken off pieces of poo, unfortunately the hat fell in the toilet and I only saw what I could make out during the flush, but there was something blocking her up. Miralax again tomorrow morning and early evening. Then Aloe Vera juice daily from here on out. It got hard quick... The day before it was formed but not hard looking at all. I hate that I talk about poo so much. Ohhh well.
 
Oh cool. It must have just been small block of poo. :poo:
If she eats great then that's awesome, and no worries there.
Fever could have been from being "backed up".
Maybe give her prune juice (old school thinking here) daily to keep things soft?
 
Her belly was distended and now it is not so much. She hates the miralax but it is better than feeling like a turd. I think it is a big poo cause it is breaking off in chunks. Toilet looks like green old stuff. She is still having a hard time. Hoping the miralax does the trick!

The aloe Vera juice is a gentle softener like prune juice but helps in healing too.
 
Rowen and your family have been thru so much. Happy to hear you are home with the new kitty. Wishing Rowen continued improvement :heart:
 
She is still having pain with her BMs, some are applesauce some are coffee grounds. Doctor thinks she has some old poo in her. Still giving miralax, today I am going to once a day instead of the twice a day protocol. Her belly is not as distended as it was. I did see more coffee grounds again this morning. I thought I should just given once bc I saw yesterday's lunch pass through by 8pm last night. Still worried about a blockage/narrowing in the colon. She is pretty much peeing out her rear now so I figured I should back off to once a day. She is drinking a ton of water. It is scary dealing with this myself. I wish I could see her insides without going to the hospital for xrays. She seems like she is feeling better at least until night time comes or bm occur. No fevers since Saturday. I cannot wait until her next remi infusion on March 5th.

She rode a tricycle for 45 minutes yesterday. So got some PT in.
 
Still hoping, wishing and praying with all my might Mary that your baby keeps heading into positive territory...:hug:

Much love, :heart:
Dusty. xxx
 
Myreinhard said:
She rode a tricycle for 45 minutes yesterday. So got some PT in.
Click to expand...

That's got to be a good sign Mary!!

Mary, I saw where she ate grapes and apples the other day. Just a thought, but those are two of my sons no-no's. Raw apples just pass through him in the same shape he swallowed them. They may not bother Rowan but I'd be careful especially now while she's still having problems.
 
So glad she is home. hopefully this episode is just her bowel trying to get back to some normality. Hope it all works out ok this time. Great news that she rode her bike.
 
So glad that Rowan got to play...HOORAY!!
We avoid most fruit and veggies...I occasionally let her have a peeled apple reluctantly, but she regularly is only allowed well cooked carrots, well cooked broccoli (this can cause problems with gas though), bananas...and canned peaches/pears. It makes me feel better if I think about the fact that they aren't absorbing the nutrition from their food like normal kids anyway...they depend on their supplements a lot for this. (It took me a bit to get to this point...this daughter of mine ate organic and homemade baby food, no refined sugar for the first two years, and she didn't even know what a cookie was until she was three! I have thrown in the towel, though...she gets all junk these days because it doesn't bother her. *shrug*)
 
Wow really. The sad thing is she likes the fruits and veggies. I made French toast and eggs for dinner. It was a struggle. I thought ohh cinnamon is supposed to help the gut. She didn't eat it at all. All she wants is french fries, spaghetti, pizza, cheese, lays potato chip (lightly salted), bread and butter, and milk (lactose free). I just hate that all this stuff is constipating. Sucks. More miralax more miralax. Uuugh. The doctors told me to give her whatever she wants. What does izzi actually eat. I just want to know cuz I am curious.
 
Izz does a lot of cooked baby carrots (about a pound a week), she loves tacos and chicken, pasta/meatballs, bananas. SHe is far pickier than when first diagnosed, though...I almost think it is a guarding reflex.
She does love salad, which is so difficult for her to digest. I quit keeping it in the house but have put on weight from following her diet so need it around again...I give her croutons off of my salads now as a consolation lol!
Incidentally she loves salmon and tilapia (fish oil, YAY!) but has problems because it is so fatty.
 
I ordered the scd breaking the vicious cycle. It looks impossible to do. Make my own yogurt... Idk. I am the only one that really likes it. Idk if I would like what I ake better than what i buy at better health.

My main issue is snacks... I need snacks... The steroids she says she is hungry constantly.
 
Mary

My daughter Lucy is the same when it comes to food - she is three and has chrons, all she wants to eat is white bread, potatoes, chips, pasta and generally any carbohydrate that is white I wonder is it because they are so bland that they dont irate their little digestive systems. For snacks she will take at a push a cheese string or a yogurt drink, but will always start with can I have white bread and butter. I find it extremely difficult to get any fruit and vegitables into her at all. She might relent to eating an apple about once a week, will eat bananas and while they are good for potassium etc. they are really constipating. Like you I have to maintain the regime of teh daily laxative also, but my GI is always telling not to worry, it wont do her any harm in the long run and as her chrons is perianal it is more important that she poos regularly and that it soft. Also like you GI he tells me to let her eat what she wants. Us mothers eh we just cant stop worrying. I am so glad Rowan is home and doing well by the way and also hope you are doing ok as it must have been such a difficult time for you.
 
We do white bread with peanut butter, ice cream, Ravioli (it has no preservatives), roasted chicken, mash potatoes, gold fish, pasta with butter, bagels with cream cheese, yogurt, tuna melts (grilled cheese with tuna and mayo), pancakes, (we do bacon!) string cheese, rolled up turkey lunch meat, and fruit smoothies.

Hope this list helps, I would love to hear other suggestions. I struggle with thinking of different snacks too!

Tiffany
 
Hey Mary, what about smoothies made w/Pediasure instead of milk? You could cram a lot of nutrition in there and fruit that's so pulverized it'd be easier for her to digest, even put liquid Vit D etc. :soledance::dance:
 
Just bought some liquid vit d3. You read my mind. Lol trying here...but the kid can taste the miralax in her water. I can't. She only drinks water and milk. I found a water called Essentia it has electrolytes and minerals and a high ph she can't tell the difference. Bought some carnation instant breakfast today going to try tomorrow. I probably end up pouring it down the drain. I might as well just throw my money in the garbage disposal. Can't get her to do a smoothie. It is just ridiculous. She has a total meltdown when I give her anything new. Even changing her iron from a red pill to a green pill. Totally freaked out on me. Frustrated completely. Thanks though. Am trying here but am losing big time. It has to be the steroids raging. :ymad: I have another month or more still to go.:confused2:
 
V never would drink a smoothie either but I know most kids will.
I hated the days before dx when I was trying to get food into her and couldn't. I got mad at her (didn't know she was ill yet), I was so scared as she was losing weight at an alarming rate.
I LOVE the NG tube. How sick is that? :ylol:

If her doc said to let her eat anything she wants (V's always has said that too)
and she's not losing weight and is nourished, don't stress it. As long as she is eating enough protein, that was always my thing. My kids never eat veg and rarely fruit. :strawberry:
 
We have been doing a lot of peanut butter and nutella sandwiches on white bread, lots of high fat yogurt (9% MF), bagels and cream cheese, Ritz crackers, french toast (cramming as much egg into it as possible), bacon (very crispy), grilled cheese sandwiches, eggs (scrambled, fried with very little oil, and soft boiled), ice cream, bananas, apple sauce, canned peaches, the occasional bit of grilled salmon or chicken, small amounts of steamed carrots and TONS of milk. My son can ALWAYS detect things I try to hide in smoothies. He mostly hates the various nutritional liquid drinks, he says they taste like vitamins. He will drink chocolate Boost if I blend it with lots of ice and call it a Frappuccino!

We have cut WAY back on fruits and veggies, so counter intuitive!!!!!!!!!!!
 
Poor kids got a fever again today 101.2 and 2 rectal prolapses through the night. Not a good day. Remicade tomorrow. Hoping for some much needed relief for her. So tired. So drained.
 
Hope Rowan had a better night tonight and good results tomorrow. :ghug:

Twiggy930, Hunter likes the chocolate Boost too instead of pediasure. He really likes it blended with mint chocolate chip ice cream. :thumleft:
 
:hug: Sorry Mary, that just bites.
How often is little Rowan getting Remicade? She just had it a few weeks ago, I'm curious as I thought they went 4-8 wks.
How long until her next scope?
 
Well she had two loaded doses 3 days apart at hospital. Now 2 weeks later and again on March 30th. They almost removed her colon. That is why they did it. Being a last ditch effort to save her colon. They consulted U of M GIs who treat adults that use this more Hyper vigilant remicade therapy for severe UC.

The norm is:
For the treatment of adults with moderately to severely active ulcerative colitis (UC) who had an inadequate response to conventional therapy
REMICADE® Dosing and Administration

Recommended dose of REMICADE® 5 mg/kg at Weeks 0, 2, and 6
Maintenance:
REMICADE® 5 mg/kg every 8 weeks thereafter

They aren't even talking about a scope. They did the MRE and they found the inflammation to be in her entire colon, no signs of inflammation in the small intestines. they keep saying it is to risky that they could perforate her colon. They won't do one until they believe she is in remission.
 
Interesting. I always like learning the different treatment approaches in case I ever need to consider them.
So they're going to do like Super Remicade and then see if she can go to maintenance...sounds a good plan and surgery is always there if you want it after all.
It's this waiting for drugs to take effect period that kills us...I'm there myself with V with the damned Humira. I detest waiting for anything. :mad2:
 
Well just saw the GI he is very concerned that Rowan is having prolapse and diarrhea. Says she shouldn't have any signs of inflammation. He is going to a conference to discuss Rowans next course. Fearful to start Imuran, bc if the remi doesn't work and steroids don't work there won't be enough time to get Imuran in to see good results.

He is fearing the remicade isn't working well enough for Rowan to achieve remission. I told him whatever we need to do if coletomy is what we need to do, give it to me straight. If we need ng tube to get her healthy enough for surgery or complete enternal nutrition to get her off the steroids to decress the risk of surgery, we will do it.

He said let's see how this remicade treatment goes and we will discuss it at her next appointment and treatment on March 30th. He also said he was surprised I said complete enternal nutrition, most parent don't want to do it. I don't want to do it but if this is what I have to do to decress her risks during surgery. Let's do it. I am not opposed to the ileostomy and wish for a j pouch reconnect. But hey as a parent you do what you got to do right.

Wow, what a day. Rowan is not having any kind of reaction to the infusion so far and no premeds... we are almost done now. She wants pizza. Still praying for remission.
 
Hey Mary,
If she ends up with sx it is a cure and that's what you need to hang onto.
No more drugs and a normal, if altered, life.
I've read a bunch of stories of post-colectomy pts (older than Little Rowan) who say they wish they'd done it sooner.
I told you this before, if it were V or ME I'd opt for sx straightaway, no drugs period. I like the idea of removing the diseased part and having that control, as opposed to the drug effects I cannot control.

Much love :Karl:
 
Yeah I just need to pray she only has UC. Ugh I don't even want to go there. I probably should have started a new thread. Oh well. This one is getting a bit long.
 
Myreinhard said:
They aren't even talking about a scope. They did the MRE and they found the inflammation to be in her entire colon, no signs of inflammation in the small intestines. they keep saying it is to risky that they could perforate her colon. They won't do one until they believe she is in remission.
Click to expand...

Ugh, Catch 22!! I believe I'd take that risk if they were prepared to remove the colon anyway!

Total EN would be a piece of cake for you Mary compared to spending a month in the hospital. Good luck!!
 
Ugghh, Mary, I hope you and Rowan have some better days soon! Poor thing has been through so much! :( Also keeping you both in my prayers for remission!
 
In my thoughts and prayers Mary, always...:ghug:...Please give that gorgeous and amazing little girl of yours a big but gentle squishy hug from me!

Dusty. :heart:
 
How are you both doing today? Been reading this from the start, but I don't have a child so I have nothing to offer in terms of advice. But I wanted to know how things are :)
 
Today we skipped the steroid enema and decided to do it at night. Idk why they wanted me to do it in the morning. Hoping it helps her sleep some. I haven't slept in 6 days. I have been in her bed every night. Changing diapers trying to keep the prolapse inside. Made a psychology appointment for Rowan. I am going not her for the first appointment. There is a lot to talk about.

Thinking about private dance class, get her doing something beside sitting around saying this is terrible or I can't do this anymore. It is very depressing around my house.

Eating is hit or miss. Somedays she eats like a chow hound others not so much.
 
Sorry things don't seem to be improving Mary!! I hope Rowan gets better soon to save both your sanities!!
 
The psych appt sounds like a great idea if she is starting to say stuff like that...God...heartbreaking. :heart:
I was there, the no sleep for a week and more...I know that feeling...all too well...:kiss:
 
If I compare her to when she was in thee hospital there is an improvement. So I guess I can just be thankful she is home. I just wish I could give her something to relax her.
 
Well last night doing the enema at night I think helped but time will tell. Instead of waking every 20 minutes, she woke every hour and a half. So she seems more rested and so am I so hopefully we can do something fun today and get our minds off the issues.
 
Swimming at the Y and a local play place (bounce houses, rock wall, balls/hula hoops/ slides/kiddie roller coasters) are high on Izzi's list...she still has to use the restroom while we are out but these places seem to keep her stress at a minimum. They both seem to tire her out also...but I'd rather her tired than stressed. :) Hugs to poor Rowan!!
 
I give Stephen Neptune Krill Oil, I think it's 500 mg per capsule. But, just something that I've found... although the package says the dosage is 2-3 capsules, we've found that whenever we've tried to bump Stephen up to 2 capsules, he has looser stools.
 
Ekkk well i don't need that right now. Lol but will eventually since she is usually constipated. I want to get her to start them guess I need to get the miralax out of the picture.
 
:) Yeah, I just thought I'd mention our experience to you when you asked about the fish oil! :) Might be just Stephen but...
 
Hmmm...I don't have it in front of me but all of the vitamins are different and I worked with a nutritionist to get the correct dose. 68 mg ala and 32mg dha right now. When we first started I was giving her double the recommended dose per the nutritionist and we didn't have any problems.
 
She is bleeding pretty bad all night again. Doc says if she is eating, drinking and moving around to not worry. Hmmm idk if it from the prolapse or her UC or both. I am a wreck. I don't think the remicade is working very well anymore, based on the amount of blood I am seeing. Looks like a menstrual period... Sorry guys. Concerned. I don't want to put her through the ER again her appointment is Friday for remicade and doc appointment. I can't wait to find out her numbers Monday. Idk if I can wait until then. Youd think I could get these numbers since the lab is open. Apparently the doctor only thinks it is vital if they call bc a number is too low.
 
Mary, that sucks...I think she needs attention NOW...increased bleeding...WTH.
V's doc emails all labs to me as soon as he reads them...why the he** can't you get hers...I am mad and I don't even know you guys :angry-banghead:
 
Myreinhard, I've been reading off & on here. To say you all have been through the MILL is an understatement! I know through reading that your daughter has been in the hospital for blood loss before amongst all the other problems. I am sure you are now aware of what she looks like when it's bad. With that said....I am not sure when these blood test were run & exactly what they tested for? But if they checked her levels for blood loss again. When was it done? Because the results don't include what's happened last night & maybe the night before. If it was done several days ago or even a day ago & last night she was bleeding more? My thoughts are as I am sure you already are....keep an extra vigilant eye on her for signs of blood loss other than the actual blood. But how she looks. Pale in color, lips, nail beds when you press on them, do they pink back up or stay paler. Increased breathing (while resting) or more than usual. Is her little heart racing? Confusion, agitation, sweating, being more cold than what might be normal for her? Decreased urine output? These are things that suggest that she should be seen. As I am sure you know little ones head south real quick as apposed to us adults. I am soo frustrated on your behalf! I wish you had Dr's that were MORE of everything!!! Keep us posted! And know I as well as many others think of you Often! Julz
 
She doesn't look bad to me. But I really don't want to wait until she gets so bad that if they have to do a surgery that it would be riskier. They keep saying I am not giving Remi enough time to work. On March 30th will be her 4th infusion since her original on Feb 16th. I dont even know adults who have gotten this much remicade. I am so frustrated... I personally think there is something wrong with her rectum... And I think it all started there. Back to Hirshsprungs but they won't even give it the time of day to test for it. If you look it up you can get colitis from Hirshsprungs. This rectal prolapse is a classic symptom. They said it is also a symptom of UC but I am not finding anyone anywhere on the internet that has dealt with it as a symptom of UC.

She is eating and drinking. Her pee output is good. The lower eyelids of her eyes are whiter than normal... Which means she is pretty anemic. If she bleeds tonight like she did last night I am going to take her in Sunday morning through ER. She hasn't pooped at all this afternoon. We are about to take a nap. It was a long night.
 
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I really don't have anything to offer other than :ghug: I have read everything that you've been going through and I can't imagine what it is like to watch you child go through that. I hope she feels better soon.
 
Your so right about not waiting till things get that bad. As some of those symptoms are of more severe blood loss. My DIL has UC & she HAD good results from the get go with Remi. But 2 years into it stopped working. They gave it to her every 2 weeks towards the end in a last ditch effort also at a higher dose. They then tried Cimzia (sp) but a few shots & no effect at all. So they stopped & she is on just on prednisone waiting to set up her surgery to have a colectomy. She hasn't had any prolapse rectum to my knowledge. I wish the Dr's would take us parents more serious or at least credit us with the guts to wanna find out how to help our kids get better! If they would just explain & not treat us like underlings....sometimes I think they think we are beneath them! Granted we may not have their knowledge....please give us the chance to understand! Sometimes we just may have a clue! As NO Dr. knows ALL about EVERYTHING! Why would they have these shows on TV about Mystery Diagnosis! Get some rest indeed! I will have to look up Hirshsprungs!
 
I am back tracking for my blog which I was supposed to start 6 months ago. Wow what a difference a year has been. It was last year in September her symptoms started and now she has a J-pouch. At that time I was researching and that was my worst fear. Now hindsight really is 20/20. Thank you all for all the support.
 

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