Nervous... Is that blood?

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Mary,
So happy things are going in the right direction! :cheers:

I know it is so hard to make those difficult decisions about medications.

I will continue to pray for you and Rowan. Thank you for letting us know how she is doing.

:Karl:

Hang in there
Tiffany
 
Oh Mary...:hug:

It is so wonderful to hear that things are continuing to settle! :) And kudos to you Mum for being such a fab advocate! :)

Always in my thoughts, prayers and wishes, :heart:
Dusty. xxxxxxxx
 
I hope that she really is turning the corner mary...I would have been trying not to cry. To hear her talk. :( stay strong, mama, you are doing a wonderful job!
 
No wonder she is feeling down, poor baby hasn't felt well in a while. I know my son got very down at one point too and just wanted the pain to end, wondered if he would ever get better. It is heartbreaking as a mom to have to hear. Just stay strong, keep fighting on.

:hang:
Tiffany
 
I hate that a four year old would think that way but this %^^&** disease sure makes them grow up fast:(. I hope things are getting better Mary!
 
Her prince is out there, and someday she will find him. He will accept her with all of her faults and love her with all his heart.

I know this as a fact!!!
 
Hang in there - you are doing so well. It must be so heartbreaking to see you gorgeous daughter in so much pain and feeling down.

Call on all the support you can - friends , family and staff at the hospital - do they have play therapists, family support people, social work etc.

You and your daughter will get through this. I hope the TPN helps to rest her gut and the meds get the inflammation back under control soon. I think you will both feel so much better once you feel that it is going in the right direction.

Take care of yoursef too - I remember my doctor reminding me when I was worried about my little boy, that it is improtant for me to eat properly and drink plenty. It is easy to forget we need to refuel to keep going and keep supporting our children.

take care,
LilyRose
 
I'm so sorry that you both have so many worries. Poor Rowan, sometimes we don't realize how much is going on in their minds! :( When my son was six, he'd had some strong ab pains (don't think it was related to Crohns then), his GP thought he was constipated, suggested some suppositories but said if the pain did not alleviate very soon or increased to take him to emerg in case it was his appendix. He then asked if Stephen had any questions, poor kid was so serious and just asked 'am I going to die?' They do pick up on lots that they hear but, sometimes, just don't know how to interpret some of the information. :( As tough as it is to hear, I'm glad she is telling you how she feels - it gives you the opportunity to reassure her that she is, indeed, a princess!

Keeping you both in my thoughts and I hope, hope that she starts to feel better soon!
 
Day 13:
So apparently sulfasalazine has caused all these side effects... Loss of appetite, rash on face, fever, depression, dizziness, drowsiness, weakness, trouble walking, and rectal bleeding. Her Hemo dropped down to 7.4 over night. They wanted to wait until this evening to do the CBC. Glad I insisted on a early morning draw. We are done with the sulfasalazine. Maybe pentasa or Imuran next.

Part of me wonders if the meds aren't causing this. I know people that have UC and get steroids during the flare and come off without a maintenance medication. Am I crazy for thinking such a thing.

Going to contact UofM and see if I can have her transferred after her blood transfusion. Another IV went bad TPN is too tough on her veins. So she has not had her steroids this morning and it really doesn't seem to phase the team of doctors. I know she can have issues from them not giving it to her. But of course I do not know how long that takes. Back to square one for the 3rd time.

I have some friends putting together a fund raiser for Rowan. They started a FB page called Friends for Rowan. I guess the local Detroit radio station WRIF gave us a shout out last night to advertise the event. I do have a great support system I just wish it all made her guts feel better.

The nurses want the doctors to put a picc line in. The doctors don't want to do this bc if her being immunocompromised. Make it stop... I don't want to make anymore decisions, I already recommended the TPN and that has not gone so well.
 
Mary,

Maybe this has already been suggested and discussed but has anyone considered Enteral Nutrition therapy? It would provide her with nutrition and has a comparable success rate at inducing remission as do steroids? There may be reasons why this wouldn't work for Rowan but just wanted to mention it in case the treatment had slipped through the cracks. It doesn't seem to be as commonly used in the US but is used in Canada and Europe.

There is quite a bit of info re EN in the Enteral Nutrition subforum under Treatment and there is an Enteral Nutrition thread under Parents with kids w/IBD.

Hoping something begins to help Rowan feel better soon!!
 
Enteral nutrition works very well in inducing g remission in children and adults but mostly for small bowel crohns. I believe there is much less evidence for uc or crohns colitis.
 
If you're determined to transfer her, I assume you really don't trust these doctors. I hope, more than anything, you do find a doc you feel comfortable with. Unless he goes way out in left field Mary, let him make the decisions. Rowan is a tough case and she needs something that works soon. There are horror stories associated with every med she could possibly be put on and if you do an internet search, those are the first ones that will catch your eye. I know it's heart-wrenching Mary. Good luck!!
 
No I do not trust these doctors anymore. Obviously I am still here bc her hemo was 7.1 and at 6.9 they will give her another transfusion.

Is this crazy thinking but if the sulfasalzine is causing her to bleed it is possible the asacol was too. Is it insane to think that if they could have controlled this with the pred and did the ween without the maintenance meds but with holistics this might not be happening. It just seems like when she comes here she gets so much worse. They are sending infectious disease in today. I seriously want to transfer her out there ASAP.:voodoo:

Yesterday when they took her off the sulfasalzine she had lost her IV...:stinks:bc of the TPN and she was due for her IV steroids. The nurse was concerned bc Rowan doesn't have many veins left in her little arms. The IV nurse told my nurse to talk to the doc and see how long they were going to do the TPN bc she felt Rowan needed a picc. The doctor took 2 hours to come see us. I was there when my nurse told her she was not getting her meds on time. Then she acted like a complete ego maniac and the other doctor was like oh we are sorry Mame but we started on the 6th floor and you are way down here in the west wing on 5 and in the corner so we saw you last. Ohhh ok so now you have clearly shown me the crack my sick daughter fell into. So pissed off.

Nw that the sulfasalazine is stopped her BMs have slowed down to every 6-8 hours over the last 24 hours. There is still blood clots. But also I actually see brown poop. Yayyyy! I is dramatically improved in 24 hours.

Man I gotta get my little princess out of this darn tower. I think the meds are not doing her any good. I seriously am thinking about stopping and closely monitoring her and seeing if she even needs them. They are not treating my daughter they are treating the symptom that the drugs are causing and then treating another symptom of the next drug. This is so screwed up. No wonder there are so many complications and secondary illnesses, it probably isn't the UC but these damn drugs.

Sorry end of rant!!!! Going stir crazy.:boring:
 
Oh my goodness Mary...:hug:

Asacol can cause bleeding and bloody diarrhoea but you now find yourself in the situation of not knowing if it is the Sulfasalazine alone that caused the bleeding if you stop the Asacol. The fact that the diarrhoea is slowing and although blood is still present it too is changing it may be better to stay on the Asacol if it continues to improve and reassess things later.
I don't think any of your thinking is insane Mary but I think what needs to be done here and now is the get Rowan back onto an even keel and out of hospital and then start rethinking things. I think a fresh set of eyes is a very good idea and the sooner the better.

Just out of curiosity, what is the set up where you are? Is she on the ward where the gastro docs are?

:hang: Mum! We are with you every step of the way!

Dusty. :heart:
 
The GIs change on a weekly basis. They are in a clinic on the 2nd floor where there are no beds. We r on the 5th.

They took her off asacol when they switched her to sulfasalazine. They are talking remicade again. I just cant dodge that drug no matter how hard I try. She freaks out about needles.
 
Mary

So sorry to hear that you and little Rowan are still in hospital. I hope you get some better news soon. Still praying for little Rowan. I really get where you are coming from about the drugs, it is very hard as we have to place our trust in these doctors and when that trust is broken and we feel we have to question every decision they make it is very difficult to think they are doing what is right for our children. Hang in there - you are her best advocate.
 
Mary, I am so sorry for all you are going through.
Are the GI's all in the same group? We had that problem in the hospital as well...a different one would be covering the hospital depending on the day, and their preferences for treatment are all different, which can be so frustrating as a patient/parent when Rowan is so sick.
Know that you make each decision in her best interests. If it doesn't work, it is NOT your fault for suggesting it. Please don't feel guilty about it...if docs felt guilty about every failed treatment, can you imagine? Remicade was a really hard leap for me as well. It is a very personal decision, but the best odds for helping her, so we chose to go ahead with it. It didn't work, but I had the best of intentions when I OK'd it and I would do it again if I thought it would help her despite the potential risks. (I am not telling you to put her on Remi, just sharing my own struggle...I know how you feel)
Is the facebook page up? I can't find it and would love to offer support there as well.
(((HUGS))) for you and Rowan today. I hope it is a good day for you both.
 
Her hemo went up from 7.1 to 7.3. Yay. Starting to poo brown again. Yay. The facebook page is called... Friends for Rowan. I don't know really much about it. You can friend me too there. Mary Reinhard. :)
 
izzi'smom said:
Mary, I am so sorry for all you are going through.
Are the GI's all in the same group? We had that problem in the hospital as well...a different one would be covering the hospital depending on the day, and their preferences for treatment are all different, which can be so frustrating as a patient/parent when Rowan is so sick.
Click to expand...

They are in the same group yes. Her GI is the head of all the others. But of course each thinks different treatments might work better depending on their experiences. I am going to switch to UofM motts children's hospital. I know boston hospital is a participant in improvecarenow.org is izzi enrolled? If yes has she always been? Do u think it is better care with ur experiences so far?
 
*love* Boston and our doc there. While he has told me to call with any questions, he is not covered by our insurance and I was unable to switch from our HMO to GET covered by him this year :( I would like to within the next year or two, as I am told surgery is likely and our GI does not recommend getting it done locally. Never heard of icn.org...what is it?
I am super glad her hg is rising...hoping for continued improvement!!
 
https://improvecarenow.org/joinus


ImproveCareNow is an established network of gastroenterology care centers and professionals nationwide specializing in pediatric Crohn's Disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD). ImproveCareNow believes in collaboration - between physicians, nurses, administrative staff, patients, parents, families and researchers.CookieCookieCookie

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This is why I want to transfer Rowan out to UofM. Bc they have joined this program and where we are now is not apart of it.
 
Your state does not cover her costs? In michigan we have Children's Special Health Care and it covers everything that out Blue cross doesn't. At least that is what they have told me. I just enrolled Rowan in this state health care. It was only bc we were here for so long that they told us about it. It will end up costing us about $350 a year but if it covers everything bcbs doesn't it is worth it bc our bills are huge right now, and I have only rec the bills from her first stay. Nt her second or this one yet.

She just spiked another fever 103.2.

I need to get my Ropunzel out of her tower.:sign0085:
 
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Latest news... So doctors said they would not release Rowan until her stools bulk up and hemo gets higher. They have tested her for everything under the sun with every fluid she produces and nothing has came back positive. They have her on IV ceftriaxone and oral flagyl. Today I am going to request they take her off the ceft bc another drug that is not proven she needs and can cause... Her newest list of symptoms... Fever, loss of appetite, dizziness, persistent diarrhea, abdominal or stomach pain/cramping, blood/mucus in stool. Come on!!! Really

We take her off sulfasalazine bc she is having all these side effects have a day of relief they add this antibiotic and now she is sick again. Really??? Why are they not putting two and two together here. They are a team of doctors working with a team of GIs

Going to ask why she is on them and what bacterial infection she has and if they tell me it bc of her fever. I am going to freak out.

Yes it is 5:48am so irritated!
 
Hi Mary :)

Im quite a bit late here, but I've just read through this whole post.
Wow ! What a roller coaster ride you and your sweet girl are on :(
I'm so sorry for all you're going through.

I hope they get things sorted quickly.
Have they told you why she is on that antibiotic yet ?

You seem like such a strong, and positive, advocate for your daughter!
Hang in there..you're doing great.

:heart::rosette1::heart::rosette1:
 
So I regrouped and convinced her we were going to get out of here. I told her we are going to eat little meals so they don't keep bugging us. Then we are going to stop using the bedside cam ode and walking to the regular bathroom. I also think if we play more they might let us go home. She promised me and shook on it. Then she had to go potty. She had rectal prolapse, this is new and I freaked out ran down the hallway. Got a doctor in there and they were like ohh when she is done put on a glove and push them back in. Omg... What??? Waiting on the doctors to tell us what is going on. Is this going to continue to happen? I just want to go home already. Can we please just eliminate all the drugs that cause rectal bleeding and send her home.

They want to have a meeting with all the different doctors to discuss my concerns. Annoyed completely.
 
NY has a program for children without insurance...but I am guessing we exceed financial requirements if there are any other programs to fill in the gaps of insurance coverage. We have an HMO and are required to use in-network doctors...no one in Boston is covered. Dr. Essers (Boston) is still willing to consult with Dr. Rivera (local)...and didn't run any tests himself...he required all of her records before seeing her as it was. He also told me to call any time with questions. What a great program ICN sounds like!
How is she doing with the flagyl? Izz had an awful time taking two rounds of it last year...she vomited up every other dose :(
I am wondering why they are waiting for her stools to "bulk up" before releasing her...my child has had a relatively "normal" stool less than a dozen times in the past year. I can certainly understand the fever and hemo being an issue.
Hoping you get rid of that fever....and they figure SOMETHING out today :(
 
She is handling the flagyl fine. She did throw up after the rectal prolapse occurred. That was so scary. It seems now that I am being a bitch they are all over me. Free food tickets and lots of department heads have been coming down.
 
Well in two days her hemo went up from 7.3 to 7.5. She has a high heart rate, dizziness, loss of appetite, fevers, low blood pressure, and she is very weak. I am going to convince them to give her another blood transfusion. Though it doesn't explain the fever. After her last transfusion she stopped having fevers, it could be her auto immune system reaction to anemia. Supposed to have a meeting with all her doctors today so hopefully we have a break through and we can all be on the same page. She needs to come home she is so depressed, and how many 4 year old say... Mommy I just can't do this anymore. my heart just breaks for her. I have to get her better and home.
 
She received a blood transfusion and albumin and a diuretic. She is less swollen but last night was rough. Her fever spiked up to 104.3 and couldn't get it under 102 for 2 hours. Had to pack ice around her. She was hallucinating seeing her skin and my face crack before her eyes the whe time. She woke happy and requested pancakes but then they gave her flagyl and now she is barfing it back up. So we are going to eat first for now on. The ywqnt to start remicade ASAP but we are waiting on tb test and I am freaked out by these high fevers worried she has something they are missing. She will be on the steroids and the remi so the bubble will be even smaller than b4. I wanna go home. :(
 
I can't imagine how you're feeling Mary :(

Hang in there ! Hopefully the Remi will help.
Are they running a daily CBC to try and find out why she's having such high fevers? That would greatly concern me as well...

big hugs!
 
Yes they are running CBCs daily. She just got another fever. I am so scared she has toxic megacolon. She doesn't eat much and her belly is so distended. Also the rectal prolapse was a red flag, along with the fevers and elevated WBC. Idk they have did xray to check for it but they have all came back normal. I am under the impression that this is very difficult to diagnose.
 
Her symptoms sound like toxic mc. Did they do an x ray with her on her side and/or standing, or just laying on her back? The side-lying/erect views show any air/fluid levels. Generally speaking I think plain abd x rays are a waste but tmc and/or a perforation will show up fairly readily in many cases. In Rowans case x-rays are absolutely warranted.
Plus I can't imagine they'd start remi with high fevers of unknown origin (?)
 
Mary,

Wish I had some experience to draw on here for you. Just keep questioning the Dr.'s. Toxic mc does sound like a possibility and it sounds like they are looking into it. I will keep praying, hang in there.

Tiffany
 
They did do 2 sets of xray for tmc. The second one the did from the side while she was sitting... A side shot and front then both sides laying down. I asked the doctor again today and they said that they don't see tmc. They just upped her flagyl to a humungous syringe through her IV. The lady from infectious disease said it is not tmc that c.diff causes it and she does not have c.diff. I thought I was just an extremely inflamed colon. Her belly distention has gone down since the blood transfusion, Albumin and Lasix. She peed out like 1500 cc last night in 3 hours it was crazy. Her adema is gone beyond the moon face. They also said she would be more sick if she had tmc. So scared though bc back b4 this exasperation she pooed that 6 hat fulls in one day. That is not normal either. The doctor told me too today they have had 2 other kids with Rowans symptoms that they have saw that the fevers were from the UC and not infection and they take remi. Ugggh is this supposed to make me feel better? I hope they are right. Scared to death to do the remi now. This like a nightmare I just cannot wake up from.

Ct scan is next if she keeps having the fevers.
 
C diff CAN cause tmc, but so can IBD:

"Toxic megacolon (megacolon toxicum) is an acute form of colonic distension.[1] It is characterized by a very dilated colon (megacolon), accompanied by abdominal distension (bloating), and sometimes fever, abdominal pain, or shock.
Toxic megacolon is usually a complication of inflammatory bowel disease, such as ulcerative colitis and, more rarely, Crohn’s disease, and of some infections of the colon, including Clostridium difficile (C. difficile) infections which have led to Pseudomembranous colitis. Other forms of megacolon exist and can be congenital (present since birth, such as Hirschsprung's disease)."

Infectious disease lady needs to research better ;P

Tests:
Abdominal x-ray
Blood electrolytes
Complete blood count
So there are a few tests to use in conjunction to rule out tmc. I am not saying they are wrong, and I am also glad they did an abdominal series. I would also agree to the CT...I just hope you get some answers soon, mama!
 
izzi'smom said:
Infectious disease lady needs to research better ;P
Click to expand...

Your so right. They are saying no on the ct scan as of this morning. They THINK her fevers are just autoimmune response to the inflammation. For her sake I hope they are right.

I have a cold the doctors told me I need to leave. My husband is coming up here to relieve me for a couple days so I can get better. I have a mask on now. Horrible timing. I have been so good at taking my vitamins, eating, probiotics, and airborne. Of all times for me to catch a cold. Now my husband is going to have to live here with no relief and no pay check coming in. Just can't seem to catch a break here.
 
I just wanted to say I'm thinking of you and Rowan and am so sorry that she is not feeling better yet!

Sending lots of wishes that things will begin to improve very soon for her and you! :ghug:
 
Oh...I hope remi works for rowan. Poor kiddo...it is. Time for her to catch a break! Hope you are starting to feel better also, mama!
 
I know you don't want to start her on Remi Mary, but after all you and she have been through, I also know you just want her to get better. I hope it does for her what it has done for so many! Good luck mom!!
 
Update: I caught a cold and was told not to return until I am better. My DH is staying with her now 24-7. Was told that TB test would not be back until mon-tues. The waiting is the hardest part. She is very malnourished they gave her lipids and sugar today through her IV. She has been doing good. My husband has this calming effect on people and they have the same personality. I was starting to go insane. After her blood transfusion, she got a crazy 104.2 fever and was hallucinating for over an 2 hours. She was seeing her skin crack and my face crack and fire in the room. It was a horrible experience. I was starting to crumble and now I am sick and my 2 year old is sick too. Having a cold and crying is a bad combo. I now realize I am not in control in this situation, and I truly think god is working through Rowan. People are praying for Rowan that have never prayed in their lives and I the community has came together and created this benefit for her. I am so blessed to have such a wonderful daughter and everyday with her is a gift. I pre- pray to not cry while I pray. And I pray apfor Remicade to put her in remission. Doctors say we should see a turn around within 24 hours bc she is in such bad health. I have been praying for a miracle and I hope this is it. I just want her home, healthy and not in pain. Thank you all for your continued support and I am hoping to send you a good update next week.
 
Thanks for the update. Now go get some rest, try to relax, trust that your daughter is in good hands with dad there. Eat some comfort food, stay up on the fluids, and REST!! I can't stress that enough! You have been wrought through the wringer, and it's time to forget about it for a minute or two. I also get the feeling you are beating yourself up, or even blaming yourself for what is going on.. if so, then STOP IT!! You are doing your best, and that is all you can do. Take comfort in that.
 
Hi ... and do not feel bad about the crying now that you are home .. you've got a lot of pent-up tears from being strong. Praying for Rowan.
 
Rowan is being transferred to U of M M.C. Motts Children's hospital. She has been excepted as a patient. We are waiting on a room and transport at this time. We have been reassure all will be covered bc it is considered and elevated level of care. Ya think? We decided to move her bc her doctor were unsure if they were doing an MRE or an MRI and if it would be done today then told sometime tomorrow meanwhile she is bleeding still and soon in need of a third blood transfusion. Annoyed completely with the lack of urgency in Rowan's care. She will be joining the improvecarenow.org initiative for pediatric crohns and colitis.

Another note I do not believe in coincidences...

Spoke with a pediatrician that goes to my church. She called to ease my mind about the treatments and diagnosis of Rowan's Ulcerative Colitis. I told her the whole story about what Rowan has been going through. After she asked what my concerns were and I told her I am concerned with the fact that even on Miralax Rowan is constipated. While doing the colonoscopy prep I followed the procedure to the perfectly. Rowan did not evacuate her bowels until the next morning when I gave her the suppository and that took 20 minutes. You could shake her back and fourth and hear the fluid in her. Cookie

After her incomplete colonoscopy her belly gets so distended, everyone's said it was the steroids, but before this last time going in to the hospital Rowan pooped 6 hat fulls in 8 hours. It was a lot of poop and the last one had blood. CookieHer belly was distended before and was flat after it was over. CookieThen her flare began.

Since Rowan was an infant she was constipated. She always had a hard time. I would have to give her Karo syrup even when she was just drinking formula. Once potty trained she would plug up everyone's toilets all the time. CookieHad to know where a plunger was at all times. The pediatrician asked me if they tested her for Hirshsprungs Disease. CookieContacted her doc at children's of Michigan and asked him if she was ever tested and he said no. She does have any of the symptoms. After researching she has all of the symptoms and apparently he needs to do his homework.

In my research I also found that hemangioma are sometime hereditary and I had a huge one as a child until age 10 and it was on my butt near my anus. Another thing I need them to check. I know I am reaching here. But I have since her diagnosis been a skeptic bc Rowan has no family history of ibd and also doesn't seem to be responding to anything they give her including steroids. I just want to make sure before we give her Remicade that they are sure she does not have tmc or congential mc or this hemangioma which I realize is rare and only 1 out of 15000 chance.

That is my update. I hope all goes well and this transfer is not traumatic for my little angel. I truly think uc is a symptom of something larger going on. I pray these doctor can find out what is happening.

Mary
 
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You're doing great Mary. You know Rowan best and you just have to keep pushing. I think you are on to something. Hoping U of M finds you the right answers. Tiffany
 
Oh Mary, I hope more than anything that this transfer and "set of new eyes" can give the answers you so desperately need. :hug:

Loads of love and squishy hugs to Rowan!...:ghug:

In my hopes, wishes, thoughts and prayers...:Karl:

Dusty. xxxxxxxx
 
She is all settled and happier. They are already are taking picc line to avoid pokes and MRI for tomorrow. They took her complete history and were there to meet me the minute I arrived.

I told Rowan, " you know Rowan we moved you here because this hospital is so nice and pretty. Do you know why it is so nice and pretty?" She shook her head no. I said "it is because this is a hospital was made for princesses." her eyes got really big she didn't say much but I think she is liking the hospital more than the other now.

I can sleep better knowing she is there. I already feel like she is in a safer environment.
 
Bless her, :hug:

Wishing you all nothing but the best. I so hope this opens up a new chapter in your lives Mary and Rowan soon finds herself well and truly on the road to recovery!

Much Love, :heart:
Dusty. xxxxxxxx
 
Just wanted to wish you good luck with the new hospital. Hope they find out what is going on. I have been following your story as well as others, but tend not to add comments since I am just at the beginning of my Crohn's journey and don't know much about any of it. However I really hope it goes well for you.
 
Mary,
I just read this whole thread. Please pursue the Hirschsprung's angle. She presents enough like it to bear investigating.

I've been in hosp w/Violet at diagnosis when she was desperately ill, starving and cachectic and I can only say it's heartbreaking to hear your situation and I know just how it feels.
I'll be following this with much interest and the empathy of a veteran who has unfortunately been through the same battle.
 
I actually spoke with the director of gastroentology this morning. He doesn't think she has Hirshsprungs says she is presenting as UC but says he will take the time to rule it out. Rowan disease is so severe at this point that they cannot do the normal tests for it and the have scheduled her for an MRE at 4:30pm today. I hope they can see what is going on and get us some much needed answers.
 
Good.
And good that you are the questioning type of mother.

She's just a baby, this is horrible. Too young to understand. It will make you crazy with pain as a mother. I have PTSD from Violet's experience. I wish I had words to help. All I have is a ton of understanding.
 
MRE showed no sign of crohns but her colon is a mess. She received TPN last night and they are all over her nutrition.Her hemo dropped down to 6.8 and they transfused right away type and cross was done the day before. They gave her her first dose of Remicade. Praying it works. They are preparing me for a Ileostomy next in case it doesn't help her. 2 part surgery with a j pouch is the goal. They have told me remi works more for Crohns than UC. She now has a picc line so no more pokes. She has saw psych, pt, child life services and social workers today. I meet the surgeon also, he explained the surgery and had me ask questions. Still praying remi works... Please work please work. We should know in 2-3 days and if not she will go into surgery. She was happier today and actually got her to laugh out loud a few times. It was nice to see and hear.

I am good. Feeling better and back in the game.
 
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I'm glad you're feeling a bit better! :) Poor Rowan has been through so, so much! I'll keep her in my prayers that the remicade works quickly for her! :queen:
 
God, facing surgery with a little child.
The positive to that if it has to happen is that she will be essentially "cured" as you know, with UC, removing the diseased colon is the end to the disease.
I hope it doesn't come to that; but knowing that she shall be able to live a healthy,full life post-sx without drugs is a comfort.
I'm not minimizing the idea of sx; but I have put thought into it in V's case, wishing they could just remove the diseased part and be done with it. But with Crohn's that isn't how it works.

Again, much empathy and understanding.
 
Praying right along with you Mary! But like Julie says, the surgery is a viable option for UC. I know the last thing you want to imagine is surgery on your beautiful baby, but anything is better than what she's been through lately. I hope the Remi can get her childhood back for her and if nothing else give her a few years before having to make the surgery decision. Let us know mom!
 
Just scared too bc the surgeon told me yesterday that they usually do surgery about 4 weeks after Remicade. Bc of the immune system factor, but last night he came back to talk w/ DH bc I asked him... what do we do for 4 more weeks. He didn't know. Said that is more a GI question he is the surgeon. Surgeon returned after talking to the GI and said Rowan is too sick to wait. It will be right away. So now I am totally freaked out bc she is so sick.
 
I am glad you are at this hospital and Rowan seems to be getting urgent care. I hope the Remicade works wonders - and also glad they have the backup plan in place so Rowan will feel better.
 
Dear Mary, I don't know you but my heart ached when I read your last post.
I know exactly the fear you are experiencing, the fear that only another whose child has been *that* sick can understand, and that makes me feel as though I do know you.
Violet was desperately ill and I feared for her life, legitimately so. I feared also that even if she lived, her life would be one of unrelenting pain and misery. I know this is how you feel right now.

But in your darling girl's case, there IS a sure fix. Surgery, while frightening for you and life changing as it shall be for her, WILL FIX her problem and she WILL be healthy and well afterwards. An altered lfe? Yes. But a healthy and full one; she shall be able to live as any other child, pain free and active. She's so young, and will be able to enjoy her childhood after sx without scary drugs, without bleeding, pain, and hospital stays.

I know you may not get this right now, but I envy you. I would rather Violet have surgery and be "cured" for life than endure the unknown dangers of chronic illness and dangerous drugs, for her entire life.

Once it is all over you will be relieved; in a few months when she is playing and happy and living a four y/old's proper life, it'll be awesome.

With love.

Julie
 
Thinking of you and your little one Mary, bless her...:hug:...I am hoping, wishing and praying that she does respond to the Remicade and things settle so you can all breathe a little easier and take stock of what is going on.

Sending loads of love and luck your way...:wub:

Dusty. :heart:
 
UGH, Mary...thinking of you both. Hoping that she miraculously turns around, but if not, that surgery changes her life for the better so she can again be your sweet little girl and get out of that hospital. I can't even find the right words for you...you are going through so much and I am wishing you could get some relief soon! <3
 
I know it is early but I am hoping that the almost formed turd today is a good sign. Less blood... Still painful but I have hope. She played in the toy room and walked a little bit she collapsed and she thinks she can't walk but we got her up again. PT is helping her daily and they are forming a bond. She is snoozing now and looks like an angel. Thank you all and Julie your words were very helpful to my frame of mind thank you. Take care.
 
So GREAT to hear she is better! Sweet baby. At least Violet's a big teenaged lug. I hate to hear of the littlest ones going through it.
Thanks for taking time to share this. :ghug:
 
HER HEMO WENT UP ON ITS OWN! No longer anemic 11.1! Showing darker red blood clots doctor says it is sign of healing. He is talking constituents about possibly hitting her with another dose of Remicade sooner than 15 days.
 
So so happy to hear Mary!!!!! :dance:

Yea for Remicade! Hoping, praying for great results for a very very long time!

Tiffany
 
When they're sick we can't say no to any request. Get her the kitten for sure.

When V was so sick she asked for parakeets. I couldn't stand the thought of birds in a small cage so I got a cage meant for a macaw; it is taller than me (5' 2") and maybe 3' wide. It has two parakeets in it. I'm glad she didn't ask for a snake :shifty:
 
Well everything looks better but her hemo was not an improvement. It went down from 12.3 to 11.7. The sudent doctor apparently had her info wrong. I told the whole world too. Now i get to retract it. Bummer. :( she had a good day and she is eating so I'll take that and say today was an improvement.
 
Hitting her with another dose of remicade today.:confused2:

It is her sisters birthday. :bdayparty:

I hope it doesn't wear her out. Hoping to get her to the play area so they can spend some time together it has been 25 days since they have saw each other. :hug:
 
:birthday2::bdayparty::getwell::bdayparty:

I hope they get to play together !! That would be a special moment for them in the middle of all this...I hope the Remi continues to do it's magic ! :)
 
Awwwww, Happy Birthday to your little one...:birthday2:

I so hope Rowan is up to spending some time with her sister, bless her...:hug: Good luck hun and give her a big, but gentle, squishy hug from me! :heart:

Thinking of you all, :ghug:
Dusty. xxxxxxxx
 
She is doing great only three BMs yesterday. :thumright: Both still pretty bloody... But her hemo is not dropping as fast. They hit her with the remi again yesterday. No reaction beyond a raised heart rate during infusion but not over limitations set by docs. They took her off of IV solumedrol and put her on oral pred and lowered her dose. She has been eating like crazy today.:strawberry: Only one poo so far. She went to the playground here and it was really nice... She cannot do stairs so she was sad but I lifted her onto the gym so she could go down the slide. She is scary walking still but she said today that her legs weren't so crazy anymore. So I think she will bounce back soon. Doctor showed me her MRE and why he doesn't think she has crohns today. I get a new GI tomorrow, I asked the doc Here who her GI would be and he said he would assign her one. He doesn't do patients he is the director. So hoping to get home soon.
 
I am glad she is starting to feel better!!! A doctor there does not think Rowan has Crohn's? Did he say what he thinks she has?
 
oh Mary, this is so good to read! :hug:
I am so glad the med worked so FAST. I had doubts. This is just awesome.
If she's eating you KNOW she is better!

Very happy for you guys. I was feeling low about the damned drugs and successes always pick me up.
Thanks for letting us know!
 
Her diagnosis without a complete colonoscopy and an MRE is severe ulcerative colitis. GI said there was no sign of inflammation in the small bowels. We will know more when she has her next colonoscopy. He doesn't think she has Crohns. Doesn't think... is not good enough for me either. I need that answered before ileostomy options are explored. Also still have Hirshsprungs in my head. He says no but I am sure you can have both so I want her tested when she is well. She is way to constipated all the time. It is ridiculous.:angry-banghead:
 
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imaboveitall said:
oh Mary, this is so good to read! :hug:
I am so glad the med worked so FAST. I had doubts. This is just awesome.
If she's eating you KNOW she is better!

Very happy for you guys. I was feeling low about the damned drugs and successes always pick me up.
Thanks for letting us know!
Click to expand...

It took me long enough to post something good. Just hopefully we can keep this going in the right direction.
 
Hi Mary

I am so delighted that Rowan is getting better. I haven't been online for a couple of weeks but have been thinking about you. Looks like you made a good call getting her moved. I hope she continues to improve and you get the answers you need.

Polly
 
Well the new GI wants to start Rowan on Remi/Imuran combo. For maintenance. Sounds kinda scary... Double the chances of lymphoma cancer. Ekkk. I will do what I need to do to get her to her next colonoscopy. I want the no Crohns verified then I might just opt for the j pouch to avoid all the cancers. Again not a bridge I can see or cross anytime soon. We will get there when we do. She has 2 hours left of her TPN then no TPN tomorrow. Yay... They are working towards Wednesday release.... Yayyyy :dance:
 
Excellent, Mary and Rowan! :biggrin:

And I think your bigger picture plan is very sensible. Make sure they also investigate the Hirschsprung's angle when they can safely do so.

With love :heart:
 
Myreinhard said:
Well the new GI wants to start Rowan on Remi/Imuran combo. For maintenance. Sounds kinda scary... Double the chances of lymphoma cancer. Ekkk. I will do what I need to do to get her to her next colonoscopy. I want the no Crohns verified then I might just opt for the j pouch to avoid all the cancers. Again not a bridge I can see or cross anytime soon. We will get there when we do. She has 2 hours left of her TPN then no TPN tomorrow. Yay... They are working towards Wednesday release.... Yayyyy :dance:
Click to expand...


:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy: :congratualtions::congratualtions:

I forgot everything else that I just read when I saw this!!!!!!!

I hope that they figure out *what* is up since they don't think it is Crohns/UC but am so glad to hear that she is feeling better...good LUCK!!!:goodluck:
 
So happy to hear that the Remi seems to be helping and you may be going home! :)

Hope all continues to go well!
 
Oh Mary, how wonderful to read this update! I am so happy for you all that something is finally working, YAY! How relieved you must feel, phew! :hug:

Thank goodness you now have some time to breathe and take stock before moving onto further decisions. :) Good luck hun, I wish you nothing but the best from here on in!

Dusty. :heart:
 

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