I think she's impacted...again...new meds not working?

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Momto2girls

Momto2girls

Joined
May 18, 2012
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So, Gracie (4) has been having severe constipation/impaction -- to the point of diarrhea going around her impaction. She's been on miralax for 1.5 yrs and now senna, too, for the last couple of months, and even with that, and even with going 2-6 times per day, she get impacted within a matter of 1.5-2 weeks of a "clean out." (She's not holding it, she drinks CONSTANTLY so she's well-hydrated, we've pulled almost all dairy, and she never goes a day without a BM).

Her most recent cleanout was 2 weeks ago on Mother's Day, to prepare for her colonoscopy/endoscopy -- where they found mild inflammation of the ileum, left colon, and gastritis with Rare H. Pylori in the stomach. The GI does not think it is Crohn's. (But, of course doesn't know what it is??) But she's put her on Sulfasalazine...even though she does NOT think it is Crohn's. (?? Umm, OK?) And she said she thinks the constipation is caused by the inflammation and this medication should help.

Well, here we are 2 weeks later and all signs point to her being backed up...again. She's up now at 3 AM...was inconsolable but is fine, now. Will call GI in the morn and likely she'll send us for an x-ray.

Has anyone experienced anything like this? I am at a loss? If it isn't Crohn's then what else could it be? And if this medication isn't working then what's next? And she says she's not treating the H. Pylori? Does that sound right? Ugh.
 
What is it with girls named Gracie!!!!:yfaint:
No much info to add. I myself wonder if my Gracie has had or is having the same problem. I just don't know.
Let us know what the GI says. I'm interested in it. We're on your own until June 7th when we meet with the Gi for the first time.
I hope our Gracie's get better soon.


Farmwife
 
Ok a question for you. You said " rare H. Pylori". I looked that up and it said that half of people can carry that bacteria. It can cause ulcers.

Way is it considered RARE?:yrolleyes:

Farmwife
 
I have no idea why it is rare!? Everyone I've mentioned it too, though, seems to think that you normally treat it? Like with 2 or 3 rounds of antibiotics? But the GI said she's not treating it?

So I put a call in to see what they want to do? She's having more diarrhea today. She just asked for a yoga video! Maybe that makes her feel better? I sure hope so b/c she's had NO energy lately.
 
Awe, I'm so sorry your Gracie(s) aren't feeling well !
I wish I had some advice to give, but I hope you get some kind of answers from your GI very soon ! :(

Big Hugs
 
Sorry to hear she is not feeling great. Seems odd to me that they are not treating the h pylori. Especially since they don't know what else is wrong you would think they would treat the thing they do know about!!:yrolleyes:
It might be worth pushing for that to be treated so that at least you could rule out some symptoms. Good luck!
 
:ghug: WE have more than our share of constipation to the point of prolapse here.
It wasn't until we got the right meds and went EN for a while did things get slightly better. Still have constipation but prolapse is better.
Did the GI ok an increase in miralax??

I know we have had to do that more than once. The worse his crohn's is the more miralax he needs and even then that doesn't stop the vomiting.

Hope you can get a GI to work with you to stop your LO pain soon.:hug:
 
I'm so sorry to hear that Gracie is still suffering with constipation. :( We haven't had any of that sort of experience here, have you tried pear or prune juice in conjunction with the Miralax?

I have been thinking about the term rare and wonder if they are using in the context of being few/not frequently occurring as opposed to extraordinary.

Dusty. xxx
 
Thanks everyone!

So we had an xray yesterday and she was not constipated or impacted! YAY! So the doctor thought maybe the D is from being over-medicated and said we could stop the senna laxative -- YAY! But that we should continue the miralax and of course continue the sulfasalazine.

So I was celebrating this morning. But that only lasted until this afternoon. She had two stools within an hour or so of each other -- they were soft but formed -- and bloody. :( It was sort of coated and a bit mixed in -- what does that mean?! :(

(Dusty, I have been thinking the same about "rare" -- as it not very much -- and maybe that's why she's not treating it?)
 
Sorry to here about the stool. :hug:
No idea about why.
I'm still trying to learn the meaning or my girl's pooh.:lol:


Farmwife
 
Thanks Farmwife. Now tonight she had bloody diarrhea. I am scared. My best friend's hubby is a pediatrician so she's calling him to find out if it can wait for morning. :(
 
WE have had blood here before.
If it is "new" for her then you need to call the on call GI tonight and they can tell you if you need to head to the ER or wait till the am.

Ds has had coated/streaked BM's before but we always call in the am for those since it's not new for him and if its a pattern then once a week to update.

Bloody diarrhea is different since she is young and it depends on how much- the GI would be the best to answer.

Most answering services should get back to you right away. I call for less- that is what they are there for.
:hug:
 
Well, I did call the on-call doc and she said we were OK to wait until morn but if she got worse to take her to ER, so we made it through the night -- thanks goodness. I will call the doc this morning and we'll see what she says. The on call doc was sort of surprised to hear she wasn't diagnosed with Crohn's and then really surprised to hear of our family history and then kind of said this is another symptom in line with that diagnoses. So who knows!?!?!!?
 
Mom2g: O has had blood since the beginning and if I were on last night I would have told you from my experience definitely a symptom of IBD and even if not something that must get checked out. I don't think there is much they can do about it until they know what is causing it but it might get you moved to a more aggressive position in terms of investigating, diagnosing and getting treatment.

I am so sorry you are hitting another bump. Hugs and good luck and keep us posted as to what the doc says:ghug:
 
Thanks so much crohnsinct -- my initial fear was horrible allergic reaction to the sulfasalazine? But, the doc said no, she had never heard of that. So I actually was like, OK then we can deal with what it actually is tomorrow. Because my DD had a anaphylactic reation to a cashew nut when she was 2 I have the fear of god in me about allergic reactions. She also is allergic to amoxicillan so we get nervous about new drugs.

Crohnsinct -- Do you think that she could progress from acute focal inflammation of the ileum and cryptitis of the left colon with no ulcers/granulomas almost 3 weeks ago, to having this now!?!? In only 3 weeks!? Yikes.
 
Well I am no Dusty or doc and my daughter wasn't scoped prior to dx but I am afraid as our doc put it to us yes it is possible but I don't know how likely.

Our daughter was not sick at all prior to dx. Yeah a little skinny and swim times were getting slow but otherwise felt perfectly fine then BAM...the diarrhea started and two weeks later we were in the hospital getting blood transfusions, tpn and being told to call our pastor. Dx Severe Crohns throughout entire colon, stomach and rectum. Not saying that your daughter is that bad but just that things can change quickly. Also, we didn't know about O's diarrhea until it was problematic and didn't know about the blood until in the doc's office when he asked her:eek2: So we didn't get in as fast as we should have...guilt much? You are much more on top of things.

There is this thing called terminal bleeding that our doc says doesn't worry him too much. You kind of have to watch them while they go (what every 12 year old wants of course). If the bm is finished then the blood comes that is it. He mentioned suppositories to make it stop but you say it is mixed so hmmm.

Good Luck and keep us posted.
 
The doctor hasn't called! OMG...seriously what has to happen to your child before the doctor will call you!? The nurse called at 11 with the whole "what's going on" routine. I hate that b/c come on I left a message!? And talked to the on call!? She said she'd pass it along to our doc but that she's scoping today. Um, OK, can you just pass it along to one of the other 8 doctors? No. It HAS to go to her doctor. Even if that means she's bleeding going into the weekend. Well, we are always welcome to go to the ER.

REALLY!>!>!>!!> Me going to the ER is easier than you passing along the message to a different doctor this one time!?

I am SO :ybatty::ybatty::ybatty::ybatty::ybatty: I am seriously about to lose my mind.
THEY ARE SOOOOO BAD!!!!!!!!

When waiting on the results from our scope we got a message from CVS that Gracie's new medicine was ready...the Sulfasalazine. THAT'S how we found out they discovered inflammation on her scope. I looked up the med and decided she probably had chron's and was freaking out -- that was on a Thur. The doctor didn't call until MONDAY and then she said no, she didn't think it was Crohn's.

I am SO done. And yet I do not have anywhere else to go!?
 
Stand in line sister.:hug:
I had to call the nurse to find out the test result,
that have been setting on her desk.:ymad:
Even more confused. :yrolleyes:You'll have to read my thread for that.

OK, you said "she didn't think it was crohn's". Then what did she say it was?
How is she today. Poor kid.
:ghug:I feel for you FIRST hand momma! Hang in there!

Farmwife
PM me if you like! Where else will I be.:tongue:
 
Thanks Farmwife! I will go see your other post! So glad to know we're together in this!

Turns out a good family friend used to work at this hosp and put a call into the patient advocate who is paging the doc. THANK GOD FOR CONTACTS!

She just had a non-bloody poop! It was smallish but I didn't see any blood!?
 
OH NO! Hope that doc called and you are not having to suffer wondering through the weekend. Glad to hear she had a non bloody poop...hoping for more to come.

Gosh...I think I am going to send my doc's office a great big basket of muffins. They are great...never leave me waiting more than a couple of hours. Could be annoying as the doc was always answering messages on his blackberry while O was in the hospital but if that means I get answers when I want em...type away...I am not going anywhere.
 
They called and basically said we don't know why she's bleeding. The main cause if bleeding is IBD and we already said she doesn't have that. Her bloodwork in April was fine (can things not change from April to June?). So, she called in a new set of labs so we can go get blood taken "if we want to." Basically, it us up to us. Ummmm....OK?:thumbdown:

I am changing doctors. We only have this one practice but I am DONE with this doctor.

Why would she be so unconcerned!?!!?!?!!?!?!?
 
So sorry your poor girl is having to go through this! I think it's a good idea you changing your doctor - sounds like they are not taking it seriously at all. I have had a few of those banging your head on a brick wall moments so I really sympathise!! Thinking of you both, hope she settles down and you manage to get a doc to help asap. Take bloods "if you want to"? :ymad: That is ridiculous, why would anyone not be concerned if there is blood in the stool? Keeping fingers crossed for you!!!
 
Change doctors!!!
Do you know if you have a clinic or hospital with a good pead. GI department?
Theirs some kind of web site that rates these places.
Sorry I forget what it was.
Sorry she's suffering.
I'm sorry any of our kids have to go through this!

Farmwife
 
Excellent idea to change doctors Mum. Bloods are only one piece of the puzzle and if they are negative and what you are seeing in front doesn't match that then they are not to be trusted.

It is ridiculous and rude to treat you in such a flippant and offhand manner. You deserve to have your concerns listened to and validated and if they can't even manage the most basic of care then the sooner you ditch them the better.

I hope you are able to find a doctor that gives you and your girl the time and care you need and deserve! Good luck!

Dusty. xxx
 
Just checking in to see how she's doing today.
Were you able to go and get blood taken?

Farmwife
 
Momto2,

My son was on Sulfasalazine for a year and it worked. Last fall, he started having a flare and when they did the scope, they discovered the inflammation/bleeding was in the transverse and ascending colon. The Dr. took him off the sulfasalazine because the GI said it only worked on the small intestine and not on the colon. They changed him to Lialda, which did not work either. I just noticed that you said some of the inflammation was in the left colon.

I am so sorry she is feeling bad and hope you get some resolution soon!
 
Thanks so much everyone for your concern. It really does make me feel like I am going CRAZY -- is she is THIS UNconcerned then it must all be in my mind, right!?!?!?! Sadly, this is the ONLY ped GI practice in town, but there are like 8-10 docs in the practice, so I have talked to lots of people in town and I think I have picked who I want -- and I plan to call his nurse practitioner on Monday -- and see if we can switch and how soon we can get in. We haven't gone for blood yet -- we have an appt with our current doc's nurse practitioner on Wed. which I want to keep so we at least see someone. And while we are at the hospital maybe we'll get blood? But if we can see our new doc soon maybe we'll wait?

Gosh I cannot believe what an IDIOT that doc can make me feel like!?
 
Kick that doc to the curb! Unreal! If you look up blood in the stool on the web EVERY page and EVERY answer says if you see blood see your doc! I can't believe that doc brushed you off like that especially given the other issues.

I hope you are able to find a better doc soon. There are so many good ones out there you shouldn't have to settle.

Poor pumpkin...I hope she is feeling better.
 
I am so glad to hear that you all think it is important. I have NEVER in my life...ugh. Anyway, luckily the bleeding stopped, and we feel OK waiting until next week for bloodwork. :)
 
Happy to hear the blood stopped. Hope the dr. change goes smoothly. It is so important to feel that your child's dr. is on the ball and on your side, especially with a chronic illness. Hope you guys get answers soon.
 
Glad the blood has stopped. Hope your next doctor is alot more sympathetic and helps you figure all this out!
 
Keep pushing for a doc you are comfortable with.

The blood would have me concerned too.
BTW DS had a completely "normal" visual scope last sept but had evidence indicative of crohn's (i.e. granuloma in his cecum). Blood work was normal as well.
Fast forward to this past week- GI had already dx crohn's based on the biopsies from last year but now there is visual inflammation present in all the areas which had only microscopic inflammation before.

So you may have just caught it early but without treatment it can get ugly fast- I don't want to think where DS would be without the 6-MP. We know it wasn't working as well as we would have liked but I honestly feel he would have scar tissue or worse by now if we hadn't treated his 'crohn's" before it started to get ugly and truly resemble typical crohn's.


Hope the new GI can get you point in the right direction as to what is really going on with her and figure out a plan.
 
Yes, we are going to work with the patient advocate at the hospital to get a new doc -- one we think will work best for us. I am glad the bleeding has stopped, too.

Have you all noticed that bleeding comes and goes? I sometimes wonder if I wasn't seeing things, ya know!? She's still having diarrhea, but as far as we can tell no blood. And she isn't her highest energy but she's not awful today. Eating a bit and even came to the library with us!

I am just worn out -- as if all of this isn't hard enough, and now I also have to fight with the doctors? Crazytown!!!

I wish I had become a doctor -- I really do!
 
Oh wow -- thanks for this! Amazing they make an app for that. Sadly I don't have a smart phone. In fact, my phone is rather dumb. :) But, I think I will start tracking it. Glad to hear that the fact that it is gone doesn't mean I was seeing things?
 

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