C.diff, ileus, blockages, j-pouch

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Grace was on ADULT- GAS-X since 1. I can't tell ya it worked all the time but some.
I was told Beno is the best and it's natural. Never tried it though!
I was told NO tums for Grace. I forget why? Sorry


Any birthday plans for the princess?
 
N real plans today we are baking cupcakes and laying low. Her party is tomorrow bc her dad has to work late tonight. She is wearing all of her fancy clothes, jewelery and a paper birthday crown on her head. Her teachers from preschool came by to see her and give her a Christmas present today.
 
We have Beano but I bought some called Enzymedia Digest gold and it is supposed to help break everything down. Where Beano is for veggies and beans I think which we don't eat. I will give it a shot. We have adult gasX around here somewhere.
 
Mary, The Saint has used fecal transplant and said he had success with it for refractory c-diff.
Without a colon though...I cannot say.

I wanted to share with you that when poor V was dying from starvation, literally dying, I YELLED at her because she would not take sips "one every five minutes at least" of Pedisure through a straw.
I was freaking out, sitting by her bed with this drink and straw she was too weak to HOLD the glass, I was timing it by the clock and she could NOT DO IT and I went nuts. I also threatened her with an NG tube, how bizarre that seems now :confused2:

I also dragged her to a child psychologist for a psych eval when she first stopped eating. She was so weak she was lying in the chair at the psychologist's office. To this day she is insulted that I thought she may have an eating disorder.
 
Glad I am not alone being mean in moments of desperation.

Rowan distention has came and gone and came and gone. So I am just feeding her normally and giving juice to keep her soft. She is drinking the Peptamen Jr straight now. Thankful for that too.

I haven't completed my Christmas shopping, and with Rowan on contact precaution I am having a difficult time finding time to get this done. Not to mention I am really not in the Christmas spirit anymore. Kinda stinks. I didn't buy anyone anything really last year bc we got out of the hospital just before Christmas. I can't do that twice for all my family has been so supportive.

My uncle is in surgery now for his takedown and my aunt has to get better with her diverticulitis and schedule to have a small amount of her lower colon removed to avoid future issues. They will both be on antibiotics and my family want me to attend Christmas Eve party. I am a bit uncomfortable taking my kid being that she has c.diff

I don't know what I am going to do. My sister says she would designate a bathroom for just Rowan. I am still nervous I don't want someone else to get sick. This c.diff is tougher than they all think it to be.
 
Interesting??? Grace used it but she was OK. However, she's been on probiotics most of her life. Next time can you cut the dose in half? Remember there are other brands with Saccharomyces Boulardii in it. That is the strand you NEED for c diff.

I wanted to let you know my new GP for Grace said since she has had c diff in the past to always keep her on SB if possible. This strand also helps to keep yeast a bay which Grace needs. The brand I use is a lot cheaper than Florastor and the GP knows where it come from.

Did Rowan have a good day for her b-day?
 
Yes it was good. Uneventful! Which is awesome. We are having a small get together again tonight with DHs side of family. We are going to do a cake again on Christmas Eve for my side. My house is too small for 21 people to try to be comfortable in. Planning something big for both kids in January so long as the c.diff goes away! Probably a pool party for Livanas 3rd. Poor kid has never had a party or cake bc we have always been either in the hospital or she has been ill.
 
Mary, so sorry I've missed all this! Glad to see Rowan is driving you crazy though. That's what she's supposed to be doing at 5. Hope things continue to improve for her:)
 
How is Rowan going Mary? Are things settling for her at all?

Thinking of you, always. :heart:
Dusty. xxx
 
She seems her old self. Tonight we have a Christmas Party at my sisters she is really looking forward to seeing all her cousins. The vanco is done on Tuesday. So getting nervous hoping this thing is done and over with.
 
How on earth did I miss all of this??
I am sorry...you have been through the wringer-again! Hoping she continues to do well and that you have a FAB time at your party tonight!! Hoping finishing up the Vanco does the trick as well...and happy belated bday, sweetie!!
 
Sorry, I missed this tag - the run up to Christmas has been frantic.

Did you end up going to ER? If so, did you find out anything? And how is Rowan now? I hope that she was OK for her birthday.
 
No we didn't go I found out excessive gas can be a common side effect of vancomycin. I started feeding her digestive enzymes and it helped a lot. She doesn't have the formed stools anymore either. :( She ate two bananas today. :dance: Merry Christmas!:dance:
 
So fab to hear that Rowan is doing well Mary. :):):) I so hope things stay settled for her and you are well and truly on the better end of things again! :hug:

Merry Christmas. :heart:
Dusty. xxx
 
The minute I say something positive... It's Christmas and she has a fever 103.0 just gave her Tylenol she is eating a Popsicle in bed. Complains of belly pains all day long. Vanco was supposed to end today. Gave her Imodium today it did nothing to help her output. Thoughts anyone?
 
Idk. I am doubting it because she hasn't been anywhere to catch it anything, being on contact precaution, yesterday we did go to my sisters house where there was a ton of kids but she spent most of her time in the bathroom with Diarrhea. If the Diarrhea symptom would have started today I would say maybe a bug. I just don't think so. I think her poop looks like c.diff poop for the first time. No smell but I can't thicken it up at all with Loperimide so. I was going to call the on call but you know I will get a resident that wants me to rush her in. Worried I should go but don't want to sit in an ER to get sent home. Not to mention all the bugs going around in there for sure.
 
Relapse is common with c diff.:voodoo:
Grace had a couple relapses.
Is she passing gas still?
Is she bloating?



:hug:
 
Drive safe. My son was at the ER today too. At least the nurse were sweet and tried to make every one smile. Keep us updated.
 
Oh Mary!!!

Can't you guys catch a break?? I am so sorry. Better to be safe, and to get it checked out. Hang in there.

((((((Hugs))))))
 
Oh my goodness Mary...:hug::hug::hug:

I hope Rowan will be okay :heart: and whatever is ailing her will be easily treated. Sending loads of healing thoughts your way!

Dusty. xxx
 
Of course we are just sitting here. They havent even started her IV or bolus. Annoyed but trying really hard to be nice just bc it is Christmas. I fear my naughty side might make an appearance. Grrr...
 
Sorry to hear that Mary. My hubby and son got in the ER right away up here but then again.......
We're all State fans up here!:ytongue:



I hope your in there now and Rowan is back to normal soon.


HUGS
 
Oh Mary, I'm so sorry to hear you've had to take her back to the hospital! :( :( Poor kid (and you)... just sending lots of hugs!!! I hope they can determine the cause and get her feeling better (and home) quickly!! :ghug: :ghug: :ghug:
 
Oh Mary I was hoping for good news. HUGS

Devos told me that c diff can cause ulcers wherever the c diff is attached. Maybe that's it? I'll check back later. Got my hands full with my little girl.
 
Oh we are so going in that bubble when we get home if she has something else. Totally sick of this... Home schooling might just be what I have to do.

Good luck with the clean out. I hope scope goes well and is uneventful with a clear dx. What time is it scheduled for?
 
Well they are testing her stool for pretty much everything that might cause diarrhea. Tomorrow flex sigmoidoscopy in the am so NPO at midnight. If everything points to c.diff they are going to send us home with specific instructions for at home fecal transplant. ID recommends it highly. Hmmm they really got ID involved quickly this time.
 
I have no ideas and am total awe of all you handle and the way you handle it. Praying that 2013 is a completely boring year for you and little Rowan...at least health wise!
 
Are they satisfied with the result of the testing? i read the testing that takes days is much more reliable. That the quicker tests are not.
 
I'm with Tiffany, it's so confusing with c diff. I was told you can't test c diff again for 6 months because it will always show up positive.


How is she doing now?
 
Mary, UGH!! I can feel your frustration...I am sending loads of hugs and wishing her well in the worst way! I was told you have to retest up to 3 times to be confident of a - c diff culture...and I have also heard that it should show up + for 3 mos. Maybe this was not the toxin test though?
 
They took two different samples one in the ER and the other when we got in our room 3 hours later. It was an accident I am glad that occured. Honestly I am shocked completely, and a little worried, and a little happy all at the same time. I guess that makes me a wreck... lol

Yes I had 2 different ID doctors tell me it would be positive. To not be surprised. It always is they said. Her doctor felt we caught it so early bc she had no symptoms in the beginning. They said we will run it just bc of protocol for contact precautions. They are testing for many other things are also planning to take the biopsies tomorrow during the flex sigmoidoscopy.

The doctor said this all could be cause by the vanco. But it doesn't explain the fevers. Her blood work is pretty normal beyond a little dehydration that is fixed now.

Just praying now for no one to breathe a crohns to me tomorrow. I will honestly have to be committed if anyone says that to me. My mind can't take anymore I fear.

They just came in and are adding more stool samples for rotavirus norovirus... Etc.

Thanks all, will keep in touch.
 
Oh my goodness Mary that is a surprise about the cdiff. Is there any possibility that the Vanco could cause a false negative? I will be thinking of you guys and sending good thoughts your way tomorrow.
 
Yes I would say it is very possible the abx is causing the negative, she is on IV Flagyl and PO vanco still. Just got blood cultures taken bc she got another fever? Also got a in room chest X-ray tonight. They have tested her for almost everything but a UTI and I am having trouble getting her to pee in the cup, I might have them cath her. I don't want to but she is not cooperating. The last time she got a UTI she had high fevers from it. Her pee is cloudy looking.
 
It is hard to tell with pee by visualization. Hopefully it is just a simple uti that would be nice. It sounds like they are doing a good workup and everything they should do. Hopefully they will get answers fast. Remember if it is something viral antibiotics won't help the fever. Even though she has not been around others that much she could have picked something up her last hospital stay. Sending you hugs. I hope they get some answers fast.
 
Mlp, Only ID and Ped Surgeons. Saw her old GI today, she didn't even blink an eye like she knew me. It was kinda awkward. Told the Ped Surg I would like some reassurance of no CD. He didn't comply and felt the sigmoidoscopy would be all we need. Still a little frustrated. I really don't have much fight in me right now. Feeling drained completely.
 
It was weird. She talked to me for 15 minutes asking how Rowan was just two weeks ago. Maybe she was trying to get out of here. We did get a huge snowstorm. There is like a foot of snow on the ground and drifts everywhere. I am sure it was more awkward for me and not her. She probably didn't want me to corner her and talk again. lol
 
You are probably right she probably was scared of getting stuck in the snow. Well at least it snowed after you got to the hospital and you didn't have to worry about getting stuck.
 
Sorry to hear you got stuck in the hospital again! Hope they find out what's happening soon. Wish poor Rowan didn't have to go through all this, can understand why you feel like you've had enough!
 
Well... They cancelled all the abx, bc it isn't helping. Just making her have severe diarrhea. She was up all night with D. Got two fevers. Scope is at 2:30pm. Spoke with the ID fellow and she said she is so happy she doesn't have c.diff. I asked if the abx could cause a false negative and she said no the test is extremely sensitive. So sensitive in fact that she thinks the first dx was a false positive. Doesn't think she ever had c.diff to begin with. Said as I did that an ileus cause by c.diff is an extreme case of c.diff and her symptoms or lack there of does not make any sense. She isn't leaving a stone unturned and really hopes to find something in the scope pointing to cause a blockage or narrowing that might have caused the false positive. Happy to hear it from her but very pissed off at her doctors for not giving me the consult I originally asked for 2 weeks ago. :voodoo:
 
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So they are testing her for c.diff yet again bc it was sent down in the wrong tube. Just doing another check bc it could effect the results. I am asking for a GI consult. If I don't get it I am going over their heads. Done with this shit. Got my vice.
 
Scope showed an inflamed pouch. Cause unknown. The plan is to remove the abx and give her Imodium and feed her and see if she improves. This does nothing to explain the previous so-called "ileus"

I guess they are hoping this clears on its own and that the inflammation was diarrhea caused do to over use of abx. Doesn't really jive in my book. They think the fevers could be caused by the pouch inflammation but to not treat it doesn't make sense to me. Her X-ray was still very loopy so in my opinion not that they want it is we need a GI consult.

She is eating a little now and no she is not comfy. They filled her with air for the scope. Lots of extra gas in there.
 
So Gi didn't do the scope ???

Did they take biopsies of the TI while in there since she just had ileus .
I am thoroughly confused.
 
No Ped surgeons did the scope. And yes they took biopsies but I don't know of what and they didn't explore at all. I don't even know if they took pictures it was seriously a 15 minute procedure. I am demanding a GI consult for first thing in the morning.
 
Oh my goodness Mary...:ghug:...you must be beside yourself...:ghug:

I hope you are able to get a GI consult ASAP and some clear and solid answers for Rowan. What an awful time she is having, bless her :heart:

:hang: Mary. You are doing fab for her. :hug:

Dusty. xxxx
 
Mary,
I second Dusty I hope you get that GI consult ASAP!!!!! This whole picture seems unusual to me. How are her blood counts? Ask the nurses what her lab results are. Have they gotten back any of the blood cultures yet? I am thinking maybe the fevers are related to a virus and have nothing to do with the GI issues? Ask the ID people about that possibility when you see them. Keep going over to the nurses station and being a PITA until they get you that consult. (If it was me I would be there every 5 minutes). I know this has to be so frustrating. I wish there was more we could do to help. (how about borrowing Farmwifes rolling pin and chasing those doctors with it?)
 
Well I told my whole entire story to the resident and he agreed that a GI consult makes sense. Granted this resident has a soft spot bc he has UC. Agreed that the previous ileus dx doesn't make much sense, since they didn't follow there own protocols. The feed her the whole time. Said he thought maybe they found the c.diff and thought an ileus sounded like it was what they wanted it to be. Then I just got the night time resident and he said they talked to the attending and he felt the GIs weren't going to do anything other than what they are currently doing. I said oh really well I heard that 2 weeks ago about ID and they think it was a misdiagnosis of c.diff bc no one get an ileus from a mild infection. All the cases report the patients were in the ICU. He then kept trying to change my mind with smooth talking... I pointed out that I felt she wasnt diagnosed properly last time and how possible is it that they give her contrast and miraculously her ileus went away. I said I didnt make it a point to correct your paperwork but if that was what cures an ileus than omg we best get the word out. I then said hey I am not trying to be right here I left and was happy the plumbing was working. I know you guys were wrong and right now you dont know what is even happening. He kept trying to correct me... I said this is how I am feeling about this. I am not going to let the ball be dropped again at my daughters expense you can either get a GI in here while we are here waiting for this flare or whatever is happening to stop and waiting for all the cultures to come back. Or I can take her to another hospital all together and get another opinion. I really do not want to travel to Cleveland clinic but I will if that is what I have to do. I will transfer her tomorrow for a elevated level of care. He than just said the attending will talk with me tomorrow about it. F~*king butthole! Grrrr so pissed off right now. Have I mentioned I hate residents?
 
:hug:

I am in :eek2: that they didn't do blood counts and won't bother Gi
Is there a work around where you happen to call your Gi nurse explain the situation and ask for someone to take a peak?
Or did Gi drop her all together ?
I thought you were still considered a patient as long as it had not been more than a year since your last appt????

Really hope they get back into the game for her sake
If they don't want Gi do they have cause for all her symptoms .
Other than we would just do the same ... Ugh
 
I know it sounds weird but the GIs here apparently don't deal with jpouchers ever unless the diagnosis changes to Crohn's disease. They are very territorial about it also her surgeon actually has referred to Rowans anatomy as "her Jpouch"
 
The nurse is trying to get the attending to come and talk with me now. I guess he is still in the building.

MLP really your not kidding I could be at home and watching her get fevers and give her Tylenol myself. If I leave with a dx of gastroenteritis I will go postal on someone.
 
FW: ummm you do know Cleveland is a city right?

Mary: still in awe! There is pretty much nothing you could do ever that will make you come down from the pedastol you are on. I want you as my daughter's patient advocate the next time I have to fight! I hope you get somewhere with the attending.
 
Yes I am aware of where Cleveland is. I don't really want to travel 3 hours but I will if need be. So very frustrated completely with the arrogance and the territorial pissing going on over here.

I read FW: as a foreward not Farmwife... lol brain fog. It is the logistical analyst in me... lol
 
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LMAO! Mary I wasn't asking if you knew Cleveland was a city...I am not worried about you at all. It is the city hating farmwife I am worried about and all her bravado with" I will pick you u"p. Pretty sure it would be the other way around!
 
lol I just re-read and somehow completely missed farmwife's post about picking us up... That is some funny stuff. Cleveland actually would be a great time. I went there for my bachelorette party and had a great time. Lets make another road trip, who needs Chicago... If the shit hits the fan we know a good hospital we could go to.

Second c.diff test is in and it is NEGATIVE! So we are officially going to be off contact precaution soon. Freaking hooray for that. I am thinking the using the Cleveland Clinic card as more of a ploy to get my way and get the GI consult. Trying to avoid actually moving her and stressing her out. If it happens it will be a transfer directly bc that is the only way to get something accomplished quickly. I learned this from Farmwife. I don't even know if they are in network... Ekkk. I will still drop the ante down and hope they fold to my bluff. HA HA HA (meniacal laugh)

I just don't really understand why they are not trying to treat this active inflammation. What should I ask for steroid enemas? Entocort? Something else? She is now refusing to eat and I am back to pushing the shakes on her. These are my reasons for wanting the consult is I don't think it is their area of expertise, maybe they don't do jpouchers whom are not having inflammation but I would imagine I am not the only mom out there whom this has occurred with and wants their opinion.
 
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Mary you are really handling this well. I know you must be so frustrated. I hope they can get their sh*# together so you don't have to go to Cleveland. I know you will do whatever you need to do.

(((((Hugs)))))))
 
Johnnysmom, I lost my mind months ago. Thanks for the compliment of handling it well. I can really turn on a dime. She isn't in distress like I have saw her before and believe it or not I am very used to living at the hospital now. One thing is for sure they do take good care of us in regards to meeting our needs and making sure we are comfortable.

I am thinking of asking ID for the Fecal transplant instructions anyway since we have destroyed her flora completely. I can't hurt and I would rather get it done as fast as possible since we wasted all this time dosing her with the vancomycin.
 
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ForeverCrohns said:
Steroids can make an infection spread if there is one
Click to expand...

Oh ok any suggestions for fixing the inflammation without 5asas for she is intolerant to them due to the rare side effect of rectal bleeding. It could be the fevers are caused by her inflammation right? Almost all the tests with be in by tomorrow to rule out infection, parasites, ova, roto, noro... Etc they tested her for pretty much everything they could think of. And took cultures of every liquid. I do have to say ID did run test on everything they could think of that could cause a fever and diarrhea.
 
Mary,
I can't believe they did not do blood counts that makes no sense to me. When you see the attending please ask why they have not done them. They can tell at least if their is an infection if it new or old and how her immune system is responding to it. They tell this by looking at the different types of white blood cells. I am so upset for you! I wish I could come and pick you up and drive you to Cleveland myself!
 
Myreinhard said:
Oh ok any suggestions for fixing the inflammation without 5asas for she is intolerant to them due to the rare side effect of rectal bleeding. It could be the fevers are caused by her inflammation right? Almost all the tests with be in by tomorrow to rule out infection, parasites, ova, roto, noro... Etc they tested her for pretty much everything they could think of. And took cultures of every liquid. I do have to say ID did run test on everything they could think of that could cause a fever and diarrhea.
Click to expand...

I went through a similar thing this month had partial obstruction which turned out to be severe inflammation .. All my test results came back negative for any infection .. Yet the doctor said if there was any kind of infection that wasn't detected, taking steroids would spread it and the problem will get worse. Just be careful because you still don't know exactly what's causing your daughters inflammation. :)
 
Really wishing that you and Rowan didn't have to be going through this. Hoping that you both get some relief soon and those docs get their acts together!

:hang:
 
Well she just had a record amount of blood in this last BM and the idiot resident came in and was like have you checked her for fissures or anything bc a little blood can look like a lot of blood. Ok, asshole trust me I know what a lot of blood looks like. Grrrr:ymad: said with that being what it is I want a CBC ran in the morning to check her WBC and hemo. He says I can talk with the attending in the morning. O I could punch him in the face.

I really might be going to Cleveland Clinic. It is no longer a trump card. I am thinking it might just be a better fit. I will talk with the doctor tomorrow and see if they can talk me out of it with some serious ideas as to how to fix this.
 
Wow, I don't blame you for being incredibly frustrated. I also have a few issues with residents after getting the "she looks well" comment a few times, and there really isn't much else we can do (this after 2 tests in 6 months).
I hope you manage to get someone who will actually be able to help soon, whether that is at that hospital or in Cleveland. Crossing all fingers and toes for you!
 
I can't believe with all Rowan has been through, you're still having to fight as though she had no history at all!! I guess 3 hours is doable if you finally find answers and a dedicated GI to take her(and you) seriously!
 
Well the Attending surgeon came in this morning and was very very pushy about not getting a GI consult from what I can tell he has no respect for them or their practices. Said they will want to run bloodworm and all these tests... Like blaha blah blah... If your thinking she has Crohns Disease she does not. I looked at her bowels yesterday and there was no sign in the TI. Crohns is always manifested there first, especially with jpouchers bc believe it or not we know a thing or two and the small bowel really doesn't like acting like a colon. I would have saw it in the jpouch. I think we should increase her Imodium and feed her. If she won't eat an NG Tube will do. I said well what about this inflammation what are we going to do about that, and he said we should get the biopsies back today and the rest of the cultures and we should be good. He had an answer for everything and I felt like punching him in the face to shut him up. Nt to mention was very loud and condescending. Finally after me what if...ing questioning everything he said would a GI consult make you happy??? I said yes it would and he said fine we will get them in here for you... hope she doesn't go anemic from all the blood they will want to draw everyday. Glad he will be gone soon and I get a new attending before long.:voodoo:
 

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