Off to the ER again

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Rowans hemo dropped from 10.2 to 8.2 between Tuesday and Friday. Her albumin dropped from 2.1 to 1.8. Taking her into be evaluated at the ER by her GI. I think it has improved over the weekend he gave me the option to take her to her PCP. No point in doing two visits. I'll keep you all up to date. :confused2:

Damn I thought she was doing so much better yesterday. The under eye lids were pretty white. They are pinker today I think her numbers went up but only one way to find out. Hoping they will move her Remi infusion up.

Staying strong... :ghug:
 
I nominate Rowan as the Forum Darling :rosette1:
I'm glad she's going in. I think she needs med attention, too much blood loss.

Love from us :ghug:
 
They are preparing me for a colectomy. Sooo I am praying she has only UC and crohns doesn't show up later. They won't do a scope. I begged. They said they will do more imagining and if they suspect anything elsewhere they will then discuss a colonoscopy. Pray for my baby please... Pray this cures her from her pain forever.
 
I am so sorry to hear this. My heart goes out to you and Rowan. I am hoping that you both find some relief soon. You are both in my thoughts.
 
They must be quite certain it is just UC.
I am so glad they're taking action of a drastic kind, I think it'll be the best thing to restore her health and quality of life, a permanent fix and thank God for it. I wish all IBD pts could cure the disease with surgery.
In a month she'll be living life and pain free, I've read many cases wherein that happened, many. Many cases saying they wished they had done it years earlier.
No more dangerous drugs, and no more pain for Little Rowan...:Karl:
 
I know you hate the thought of it Mary but she's been through far too much pain! Praying for her too Mary! She'll grow up with the stoma and it will be absolutely no big deal to her. It's probably better now than if she was nearing her teens. Keep us updated!
 
They are confident that the can do a j- pouch a couple of months afterwards. My mom freaked out on me though. She has since apologized. She thinks it is too drastic. I know I am scared, but I just want her to be pain free. I hope all goes well. I will keep you all updated as to when we are doing the surgery.
 
Keeping Rowan in our prayers!!!! Hopefully this will be the cure for her. I think you are doing the right thing. Please keep us posted!
 
I sure hope all goes well and things turn the corner for you all !!

Just out of curosity are you able to donate or have people donate blood for the transfusions? We were able to in Calif. Just curious, here in Texas- they dont do that. You can have the blood "replaced" but not "tagged" for you.
 
She is having another blood transfusion it dropped to 7.7 but her albumin is up to 3.0 so I guess I did what I could regarding her nutrition.

I am sure I could have her dad donate. But it takes too long to do that they will be transfusing through the night.
 
Mary, I am praying for Rowan! I hope that the surgery will bring her much deserved relief! :ghug: :Karl:
 
Thinking your little girl. But also you her worried mom and her dad and extended family and friends .
 
Thinking of you both. Hope the surgery puts an end to her suffering. Good luck. Will pray too.
 
Oh Mary I'm so sorry to hear this, but hopefully it will be a cure for her and she can live pain free - .
Many blessings and thoughts! :)
 
I can understand freaking out about drastic measures, but it makes perfect sense when medically necessary - it should be done when at the last resort. Hope everything goes smoothly.
 
We are home. She had a blood transfusion. They decided she failed Remicade. Colectomy is scheduled for April 11thish. So long as she doesn't start declining. They want her to be 6 week out from her last remicade infusion. I met with the surgeon and he explained the hopeful 2 part surgery to me. She is very happy to be home. I am very happy to not have been a liar. I told her we were not staying long. She is riding her bike in her room talking about how much stronger she is now that she got some blood. You can defiantly see a difference in her with this transfusion and that she was nutritionally sound this time around. It didn't wear her out.
 
You'll be so relieved when it is over and she has her childhood back, pain and DRUG free!
So happy for you. I think she'll do great. :heart:
 
So glad she is feeling better Mary. I will continue to pray for you and Rowan.

Stay strong Momma, better days ahead. :)

((((Hugs)))))
Tiffant
 
My goodness Mary, what a roller coaster ride you are having...:hug::hug::hug:

You have done such a wonderful job hun and I wish you and your little Rowan all the love and luck in the world. I so hope the surgery brings her lasting peace and health.

Always in my thoughts and prayers, :heart:
Dusty. xxxxxxxx
 
A quick vent... Before I left the doctor suggested I call and give an update once a week. He stressed this factor bc he felt I called too often. I felt guilty for all the calls I made but now I am just mad. They told me if she is eating and drinking her hemo is probably fine. Well they were wrong she needed a blood transfusion. If I had all good experiences with the doctors maybe I would've called less. Who do they think they are? her hemo dropped 2 points in 3 days. On Monday they freak out and have me rush her in for a transfusion. If they would have did their job over the weekend and took the time to get the lab results on Saturday she wouldn't have been in such bad shape when we got there. It pisses me off that she is just a name on a chart to them. I think Rowans case is probably the most dangerous case of UC they have right now and I think they should be a bit more proactive. She bleed pretty bad last night... I am worried but I will wait to call bc I know her hemo is still up. Hoping tonight is better. Poor kid. Stupid doctors.:voodoo:

Blood draw is set for Monday.
 
Screw that, Mary. She is too precarious. You are absolutely correct, had they reviewed labs on Sat she'd have gotten the blood she needed that night.
I am appalled, that's putting it mildly. :voodoo:

The Saint (V's GI) emails personally with parents. Not his nurses. He has replied at 11 pm and 4am. That is why I call him The Saint, he really cares and he isn't young either, he is prob 60, in ill health himself but he still goes above and beyond.
Thank GOD she'll be surgically FIXED (keep reminding yourself this is a PERMANENT fix for that baby) and done with them except for aftercare which shall be nothing compared to this nightmare.
I so wish I lived near to you, I'd be offering any sort of help you needed.
It'll all be over soon and a month or so post-sx she'll be enjoying Summer! Pain free. :hug:
 
A quick vent... Before I left the doctor suggested I call and give an update once a week. He stressed this factor bc he felt I called too often.

I'd be mad too! Did he really say he felt you called too often? How in the world could a doctor say that given Rowan's condition!??
 
He (gi fellow) was trying to be as diplomatic as possible. Saying, if something dramatically changes I don't want you to feel you cannot call me. Like more blood loss than normal, or new symptom come up. Only after I defended myself and said "well in my defense here, she had a blockage to start, miralax causing the prolapse but cleared the blockage, no one actually seeing the prolapse and the lack of concern about the prolapse. The need for steroid enemas, and then more blood caused by the enemas irratating the prolapse, and the under eye lids being white which was confirming too much blood loss. The attending GI was like thoughs are all reasons to call. The fellow then retracted and agreed. Still a crappy thing to say to me. I was calling often in hopes they would fit her into the clinic and look at the prolapse and ease my mind about it. It being stressful to have to push my child's colon back into her body 8x a day.
 
Prayers and good thoughts to your family and Rowan. I say keep calling the doctor with your concerns and questions - that is what we pay them for! My daughter's doctor never tells me I call to much - they welcome all the questions and concerns - especially early in her diagnosis. Hope Rowan feels better soon!
 
OMG, with all you're dealing with, you should NOT have to deal with ignorant doctors! With all the complications/side effects Rowan has suffered, of course you need to be able to discuss them with her doctors!

You're doing the right thing! Am thinking of you and Rowan! :ghug:
 
I know it's hard Mary but don't have them second guessing yourself or make you feel inferior. :ghug:

You have every right to ring and voice your concerns or seek advice. They are not the ones left to face this alone and if they had done their job adequately in the first place you would have been given guidelines as to what was normal and what wasn't and when to ring and/or present to hospital. It is failings on their part that have you ringing them, not the other way round.

I so hope Rowan is able to find lasting relief very, very soon. Good luck hun and :hang:

Dusty. x:heart:x:heart:x
 
So 5 days into gluten free. Had Rowans CBC and other blood work done. Her Hemo stayed the same 10.3 C reactive protein is normal. All numbers are normal no signs of inflammation. She slept through the night last night also. Very odd don't you think? Colectomy scheduled for 4/17 courious what the tests will read next Monday. Never got her last remicade infusion either. Hmmm weird. But very cool.
 
Mary, that is very interesting. I'm assuming she's been tested for celiac, though? And it doesn't present the way she did. But removing gluten is helping her...puzzling.
As for the normal labs...V's CRP is always normal or a decimal above. Highest ever was 2, that was at dx when she was near death.
What does the doc say about her response to eliminating gluten?
 
Rowans is usually high. CPR 1.5 She always goes off the charts with all the inflammatory markers.

I didn't even talk to the doctor. It was his head nurse I spoke with. I am courious what he will have to say though. I hope he calls me after reviewing the results.

Yes she was tested for celiacs.
 
Mary - That is wonderful news! I really hope Rowan continues to feel better while gluten-free. Wow!! Please keep us posted ... this is really interesting.
 
CRP was 25 when we left the hospital, and was 36 at her worst I have on record. I do find it all very interesting. The surgeons office just called and informed me of the crazy prep... I opted to do the prep in the hospital bc her last prep (scopes) didnt work out so well. She cannot have anything but clear liquid the day before the prep either. She can't eat for 2-3 days afterwards either. All TPN for 2-3 days. The surgery is 6 hours long. :eek2:

Glad I get another week for the remicade to be completely worn off. Less possibilities for complications.
 
Idk. Doubtful. She did poo last night once, but there was minimal blood almost non existent. But she keeps bulking up. Can't have that with the prolapse. Probably going to have to increase Miralax again. I did yesterday and the day before and she is still bulkier each day than the day before. Finding the right dose is probably key.
 
I am anxious and interested to hear the doc's reaction to her improvement with no gluten! What in the heck? It makes no sense to me, but I am thrilled to hear it.
What if she CAN avoid sx...it sounds like her improvement is so dramatic. Do keep us updated.
With love always to you and that dear little dolly :heart:
 
Wow Mary, what a turn around!

I hope more than anything that all continues to go well, bless her heart. :heart:

Thinking of you, :hug:
Dusty. xxx
 
I still think they are pushing for sx. Bc there is not a maintenance medicine she can take beyond predisone and 6mp. It will take too long to get 6mp in her. I am wondering bc the 5asas made her bleed if she might have been ok the first time around if they would have put her on steroids and weened her. It might have been a one time deal. DAMN YOU HINDSIGHT! I know they will not support that. Just courious if she might do ok if we just remove all the drugs ya know. That sulfasalazine really messed her up.
 
If her improvement is this dramatic and also some bleeding at least was from the ASA drugs (Pentasa made V bleed too) then if it were me I'd push the sx date up, not cancel it, just push it up and see what happens. What if this is the answer...I was all for sx for Little Rowan until this. I can't make sense of it but I'd sure want to see what happens in the longer term.
 
She is still bulking up daily... Less and less blood than day before. Prolapse isn't happening but once per day and that is when I see blood. She is getting confident... Just peed and pooed and emptied the hat herself. I had to tell her no she can't do that bc I need to see her output. She said ok ok mom... Jeez sorry.

She gained another 2 lbs this week. :)
 
Fab update Mary! :):):):):):)

Long may it continue hun cause Rowan surely deserves the peace and relief, bless her...:hug:

Much love, :heart:
Dusty. xxxxxxxx
 
They say 5 percent of people who do have celiac show a false negative to the test. Maybe she is truly dealing with an allergy. Can u put the breaks on surgery to find out? I am sure you don't want to get your hopes up but it seems so promising Mary. Glad she is feeling better. :)
 
Oh God...emptied it herself...that made me smile and almost cry, both. :soledance: What a sweetie.
V still won't collect her own specimens, mind you...and she is a big overgrown teenage lug. And now the doc wants them WEEKLY...and her poo is huge and hideous, like a monstrous thing lying there. :shifty: :poo:
 
Idk about celiacs

They say 5 percent of people who do have celiac show a false negative to the test. Maybe she is truly dealing with an allergy. Can u put the breaks on surgery to find out? I am sure you don't want to get your hopes up but it seems so promising Mary. Glad she is feeling better. :)

I don't think celiacs ever presents as bad as colitis symptoms but I could be wrong. I googled it and didn't find anything. If it were a false negative, she might've had both??? :ywow: idk
 
There is gene test for celiac disease. This test will not confirm celiac disease but can be used to rule it out.
 
Oh we are not going to avoid sx. Since we have exhausted all maintenance meds there is no options. I cannot have her going into another flare where predisone is needed. Thank you for the well wishes.
 
Well we had to stop gluten free. Too constipating for Row. Bummed out bc she was doing so well. She is still doing well and I think it did helped slow down her frequency of BMs. I can see how it would be wonderful if you suffer from diarrhea, but with Row that is not the case. Might be something she will need after the sx. But for now we are back on wheat. :( she is not waking at night and is not bleeding much and the prolapse only happens every now and then.
 
Mary, is the surgery still on for tomorrow?? What prep are you having to make? I know you'll be out of your mind with worry but let us know as soon as you can. Good luck and prayers coming your way!!
 
No sx was moved to April 17th. They wanted her 6 weeks out from her last remicade infusion. She has been doing great. I kinda hate to spoil it with the sx. But she is really healthy right now. So in the best shape for it now. It sucks bc she is finally feeling like herself for the first time in a really long time. It will be a tough 6 hour sx. I am already scared of it. I just keep asking myself... If you had a way to change your destiny... Would you? (it is the quote from the movie Brave that she wants to see.) her current path is a painful one and I won't have to fear the big C later.
 
The prep b4 sx is two days. It is a bit more aggressive than colonoscopy I am told. 1st day only clear liquids. 2nd at hospital is all the miralax drinks that she hates and the magnesium citrate.:stinks: I chose to do it there bc it will be a hard prep and I might need a feeding tube to get it in her. :(
 
Interesting to put it mildly that the gluten elimination helped her so much.
Excellent that she is in good shape to go into sx and I bet it goes well and she is back to living life by summer. You know how I feel about sx, and how I wish it was an option for Violet.
Just some hugs and love :heart:
 
Yes I am just hoping for no crohns still. I know you wish you could do a sx and get v out of pain. I totally get that. I am still nervous though. It will take me years before I feel safe. Fearing the Crohns. Checking poop all the time. It is a nervous tick I have now. All I talk about is poop and what food it looks like. I can't wait to have a normal conversation with an adult that doesn't revolve around bowel movements.
 
I completely understand where you are coming from...(((HUGS)))!
I feel like surgery is completely different from meds...the decision to potentially make their life better with a slight risk of side effects versus potentially making their life better with life-changing effects...so tough to do for our little kids!!! I truly hope for the best for Rowan, though...you two have been through the wringer and while I am glad she is feeling good now, I am hoping she stays in great shape and comes through the surgery with flying colors!! Y'know, MI isn't too far from NY...they could be stoma buddies ;)
 
Yes, it is a very short flight. I was in manhattan about 5 years ago for a friends wedding. Didn't take long at all. That would be a great thing if they could talk. Even if they skyped. It has got to be nice to have a friend that knows exactly how you feel. Kinda like us. If I could just get Row not to be so shy on the video chats. We tried chatting during her last two hospital stays but she wouldn't do it. Even with me when I was sick. I was a wreck and would make DH be sneaky so I could see her.
 
I am doing now what gets me to see my grandkids. Lol. I just want her to forget this last 6 months 7 months and get on with being a kid ya know. Hopefully we can get reconnected before preschool starts.
 
Izz can be super shy too, so between the two of them skype would be a lost cause lol! Have you discussed reconnecting already? I know absolutely nothing about it, but a local (and not one whose opinion I highly value) surgeon told me if they take Izz's entire colon she won't get reconnected. I should stop speculating as it is driving me crazy lol!

I hope that she can get reconnected before school also, but just know that kids can be so understanding. A little girl at Izz's table told me she was crying "cause her belly hurts...a LOT lately" and all of the kids in her class were so good to her when she had the ng tube. If they have to have this done, I have a good feeling it will be second nature to them by the time they get to that tough social aspect in school. :)
 
Ohh yeah I had a big discussion with the surgeon. Two step procedure. They are doing colectomy leaving just enough rectum, going to create the pouch and attach it. Then the ileostomy. They will have that all done in the first go. Then the reconnect is only a two day stay. Two scars one that looks like a appendectomy and the other that looks like a c-section. Both will be completely unnoticable by age 10. If all goes as planned. Of course they told me there are exceptions but Rowans surgeon does this all the time. Travels to Ohio, Maryland but works out of UofM here.

You know it really helps that my physician assistant out of my office gave me her cell number and her dd had this surgery like 5 years ago at UofM. Her daughter had UC at age 5 and colectomy/j-pouch at 7 she is now 13 years old and she says it was the best thing she ever did. I pray for the same results. She reassures me all the time.

Don't get me wrong. I am scared to death. I just know in my heart she will be alright and go on to do great things. I have to have faith in that.

My GI told me that even if Rowan had Crohns Colitis this is the best thing for her now. It is a matter of avoiding the big C ya know.

You know you have done everything in your power. Izzi will go onto do great things. May her weakness turn to strength, suffering into compassion, sorrow into joy, and pain into comfort for others.

We will get through this Angie. I know it. Your a toughy, so is Izzi, and so are we.
 
God love Rowan and Izzi, bless them, such angels. :hug:

Sending you both loads of love, luck and healing thoughts. :Karl:

Dusty. x:heart:x:heart:x
 
Kind of awesome that Izzi and Rowan can connect :heart:, and Mary and Angie...that has to be a huge support.

Nothing to contribute beyond some love as always for both these tiny but mighty girls, heartbreaking but with a great projected outcome and pain free lives ahead :heart:
 
Sure does, Mary. Rowan and Izzi are intense emotion-stirring cases, and I cannot wait to hear both are living life full and without all this s*** going on.

You really should visit one another in summer when both are recovered. Or meet halfway. We did that with a pal V met at sleepaway camp. :D
 
Getting me out of Detroit will not be an issue. Seriously I would love to go over to the east side. We could defiantly get to an eastern state for a summer vacation. We need a vacation. Soon. Somewhere with a condo on the beach and not a whole lot of people around. Rest and relaxation. Ohh how I can see that bucket of coronas just like the commercial.
 
I am badass because I handle the Great Barrier Reef of poo weekly now and without cringing...much. :stinks: She can't seem to just deposit a teaspoon's worth in the "hat" :ywow:
 
Sending lots of wishes, prayers, hopes, healing thoughts and anything else I can come up with to Rowan and Izzi (and to you, Mary and Angie... coronas and hot GIs when all have recovered! ;)).

I'm counting on everything going wonderfully well for them!!!!! :Karl:
 
Good news!! I am sure it would have faded anyways as she grows but safer all around to have it laparoscopically.

Is she still feeling pretty good?
 
Hello,

I know I haven't been posting for a while. But I have been thinking of you guys. And i know surgery date is approaching. I wiash all the very best for a fast recovery back to a wonderful and fun-filled days.

i am so pleased you have found great support hear on this forum - to deal with this all alone would be too hard for anyone.

take care,
LilyRose
 
That is such good news Mary, :) and not before time!

Sarah has a horizontal C section type scar. I have to look super hard to see hers now but laparoscopically sure is the way to go!

Dusty. x:heart:x:heart:x
 
So glad to hear it...lap surgery!! Hoping the good news trend continues, Mary!!
@Tess...YES to a hot GI...I need to have *some* kind of fun here!
 
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