Surgery for LJ AGAIN, so frustrated with this #X%#CD!

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Gmama

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Well my poor boy had to have another surgery:ymad: LJ has had a fistula for a year that has never closed & it re-abscessed. We went to the surgeon Wednesday and due to his overall "poor health" admitted him into the hospital. Although LJ has had a bad reaction to cipro/flagyl the surgeon insisted on starting him on those as the "go to" antibiotics & IV fluids. Did surgery Friday. The surgery itself went as expected, placed 2 setons and cleaned out the abscess leaving a crater in his bum cheek. Last time we only left the setons in for 6 weeks, but this time he is planning on them staying in for at least 6 months or longer if need be.:eek2: But then LJ was so nauseous that he couldn't eat or drink anything. They switched him to augmentin oral antibiotic late Friday night. So we had to stay until Sunday night when he felt like he could at least drink without throwing up. He has had awful D since Tuesday. So I quit giving him the augmentin yesterday. He has been going 15 times a day, but yesterday he went 4 and today 6 (so far). The doc said to "try" to stick with it for 2weeks. He is so thin (5'7" & now 100 pounds. Has lost 6 pounds this week) but of course I'm second guessing stopping the antibiotic :ybatty:
I'm just so exhausted by this disease & desperate for remission. I feel like we are no further ahead in a year...he still has failure to thrive, we are having the same surgery we had in March, pumped him full of drugs that either didn't work or don't seem to currently be working. Ugh! I worry about him so much & the surgeon was not impressed that he has had 3 loading doses of Remi & is on entocort & pentasa AND still has stomach cramps and a Sed rate of 29. I'm just not sure where we go from here? Shouldn't the Remi have kicked in? Last appt when I questioned the GI about the "what if" of Remi not working he casually said that we would "just add imuran" although it never worked on its own AND made LJ throw up. What!?!?!!!:ybatty:
Sorry this is so long and rambling...I'm just not sure where to go from here
 
So sorry to hear of the rough time you're going through. I'm sorry I don't have any advice to offer, lot's of support and prayers though. I hope you get some much needed answers soon. Take care!
 
I can only offer my thoughts and prayers to you and LJ. I've been dealing with crohn's sense age 16 some 45 years now. Please tell LJ to stay strong that things will get better.
 
You are Not rambling! Completely know what you are feeling. We also have had difficulties with medicines. And the process is SOOOOOOOO LOOOOOONG going thru each one.... Prayers for LJ
 
Sending hugs and support. Sometimes it takes a while for remicade to kick in. I hope it does, soon.
 
Wow this poor kid. I hope it works this time and he gets back to being a kid soon.
Hugs and hang in there. You might not feel like it but your doing great.
 
What is his Remicade schedule? Might he just need a dose adjustment or tweaking of the schedule? Have his Remi levels been checked recently?
 
Thanks for all the support! You guys are the best! Everything does take sooooo long and the trial and error & the wait and see feels so wrong while our kids are circling the drain & getting worse.
We have a GI appt Monday and surgeon appt Wednesday. I'm not sure what to anticipate with the GI. Usually I have an idea of where we are headed and I have a chance for some forethought of questions, or objections. But I'm not sure what to expect.
Thanks for the prayers, he needs to be lifted up.
 
Mehita,
We have done the loading dose at 0,2 & 6 weeks. Now they want us to wait out the 8 week maintenance dose, which isn't until February 28th. He has stomach cramps, D several times a day (today 6) and has been losing weight.
They have never checked the Remi levels. That is what I should ask for on Monday
Without adjusting the Remi, what else could be done? He is also on entocort & pentasa
 
I would think they would be willing to bump up the next Remi to four weeks at least. It can take some time for it to kick in, but if he's feeling yucky, why not help it along? Or maybe some EEN for bowel rest?

I think another option would be to add Methotrexate. I still get scared with the Imuran/Remi combo in boys and the T-Cell lymphoma. I know different studies say different things about that, but I have a teen boy so that just kind of sticks with me. Our GI said we'd try everything else first before doing that.

I hope he gets relief soon. These kids just amaze me with what they tolerate and push through.
 
Just wanted to add to what Mehita said - my daughter did really really well on Remicade + methotrexate! Combining drugs sounds scary but sometimes it's necessary and it really works.
Hope he feels better soon!
 
Mehita & Maya,
I know exactly what you mean about the "sticking with you" with using Imuran & Remi. I never thought it would be an issue even if we did Remi because when we did imuran alone at week 7 LJ became so sick, throwing up. So at that point we crossed it off the list as a fail. So I was totally shocked when I asked the doc what if this isn't working, and he said so nonchalantly "we'll just add imuran"
The bubble above my head...WTF?!?!
I'm really worked up about our Monday appt...if the doc is insistent on adding imuran instead of metho or instead of bumping our infusion up...what do I do?
He briefly said that imuran gives the Remi the best chance to work, but with our history with imuran does that even make sense?
I also have never seen any studies with metho & Remi in teen boys...is the t-cell risk still there?
 
Ok, giving him the benefit of the doubt here... maybe he forgot about the Imuran experience? Or maybe it's not in his record for some reason? I'd just remind him that you tried it once and it didn't go well.

If he insists on Imuran, then ask him to explain exactly why he wants to go that route and keep asking questions until you fully understand. That being said, you don't have to agree with him. Ask why not mtx or bumping the schedule. Don't leave until you're satisfied and comfortable with an answer. This is your kiddo's life you're talking about here. I know YOU know that, but your doctor needs to understand that. KWIM?

I believe the risk is there with any immodulator whether it's Imuran, mtx, 6MP, whatever. And it's not necessarily the combo of taking them at the same time. It's just the fact that he's taken them at ANY time. Since he's already been on Imuran and he's already on Remicade, you're already in the risk group.

Hope that helps...?
 
Here's a link that explained the cancer risk well:
http://programs.rmei.com/CCFA139VL/

The risks sound scary but then you see your child suffering and that's awful too. For my daughters, once the combinations worked (both used methotrexate and not Imuran, but like Mehita said I believe any immunomodulater increases the risk), I never really thought much about the risk again.
 
That does help & makes sense. My real problem is that I'm SO desperate for him to feel better that I will do anything, and I second guess myself constantly about what makes sense. Normally I can give things an objective look & make a decision...over the course of this year I have become a stressed out, irrational,second guessing, wear out my friends with my crap, nervous stomach,aged 10 years this year, furrowed brow, jaw clenching, exhausted, would make a deal with the devil to cure my kid, nagging, over protective mama bear!:lol:
 
Sorry things are going so badly at the moment. I really hope the surgery at least deals with some of the issues. My son had abscess surgery a while a go and ended up with a crater in his bum cheek - our GI nurses gave us silver dressings to put in to help with healing - it might be worth asking about?
I would also hope that the GI has just forgotten about the reaction to the Imuran. You can just say no if it is something you don't want to risk again. I am sure that the Methotrexate/Remicade would probably work just as well. I am surprised they don't want to bring forward the next Remicade infusion - seems odd when your poor boy is suffering so much. Good luck for the appointment.
 
Thanks Sascot,
Crater is a very good way to describe it! I will ask the doc about silver dressings. I will let you know what comes of our appt!
 
Well both appts were pretty bland.
Today was at the surgeon, spent lots of time with us. Said the 2 setons were staying in until LJ was in a solid remission or they fell out. Seeing that remission for my poor boy is nowhere in sight...these will be in for a REALLY LONG time.
The GI said that we just need to give the Remi lots of time to "kick in" said he is hopeful that he can make it another 4 weeks to our next infusion (February 28th)
(We have done the first 3 loading doses & are now in the middle of the 8 week maintenance dose)
Was not concerned that he is going 4-6 times a day.
I'm not sure what to think...I really thought we would see more results after doing the first 3 doses.
Patience is evidently not my thing:ybatty:ugh.
 
Oh hun! I am so sorry for all you are both going through. I somehow missed this whole thread. Remicade works like a charm and right away for some. For others (like my dd) it takes a while. We were almost 3 months in at very frequent intervals and high dose and my daughter still wasn't a lot better. It wasn't until we added something to help it along that it took off. We were given the choice of Mtx but chose a course of EEN. The EEN worked for us and got my daughter another year on Remi alone until we eventually had to add Mtx but still sailing along on the combo.

I am so frustrated that your GI isn't thinking about pulling Remi levels and testing for antibodies. If he has built antibodies then why waste time sitting around waiting to see if he can make it to 8 weeks? Perhaps it just got metabolized too quickly and he is leaving him with no treatment. It could be levels are fine and it just needs more time but in the meanwhile it needs a little assistance. Imuran and Mtx take a while to really start working (up to 3 months) so maybe that is why he is hesitant to add them at this point. But I don't understand leaving him the full 8 weeks. Maybe a low dose of prednisone?
 
Oh CIC it's like you are a mind reader!
Yesterday evening and last night LJ went into an absolute flare. It's like flipping a switch and suddenly nothing is working. He went 10 times D with blood in it & lots of cramps.
Anybody on Remi have this?
Called the GI at 8:01 told the nurse & she said the ins co won't let them bump up the dose because this is his first 8 week dose. I said we still have 4 weeks to go and if I left him like this he will die! (Over the top I know:ylol:)
She called back with a rx for 30 mg prednisone and said to give him Imodium 2 tabs twice a day
Then we go see him in 2 weeks
We have never done prednisone...I'm praying it agrees with him!
 
CIC one more thing...thanks for sharing DD experience. Seems like so many kids see fabulous results day one (which is wonderful) but I was definitely feeling discouraged so far with the lack of progress LJ has seen
Thanks again!
 
Well then! Glad the GI saw it the committee's way! I hope the prednisone has him feeling on top of the world soon!
 
Well we started the pred Thursday and by Monday he was no better. So off to the hospital we go! Day 2 in the hospital what did they come up with....drum roll please....c diff! Ugh. Wrote us a rx and sent us home.
My question for all of you that have had this or have it (shout out to SupportiveMom) is all about cleaning!
First, for years I have spent the extra money for the brand name Clorox wipes. Guess what there is no bleach in the wipes. Clorox, the name that is synonymous with bleach, has no bleach in it!!! I feel betrayed. And color safe bleach doesn't have bleach in it either.:ybatty:
So for colored towels and clothes, what did you use?
I also have granite that I can't use bleach on, what else would work? In my 1 day of reading all I came back to was that bleach is the only thing that kills the spores.
I used so much bleach today I think I ruined the mucous membranes in my nose! :ylol:
Any advice would be much appreciated!!
 
Sorry, I don't think I'm much help I washed the colored towels and his navy blue sheets on the sanitary cycle of my washing machine. Biggest place I used the most bleach is bathroom. I used the clorox kitchen cleaner with bleach (that's what it says on the label). I didn't have problem with granite but it is sealed. You could test in small hidden area. So far, so good. He had it in July
 
Oh no! So sorry to hear this. No advice on cleaning as I only have white towels and don't have granite on my main counters.

The committee used to ask all the time about c diff...I guess we have gotten lazy assuming the docs were covering that base. Makes sense as he was just in the hospital for surgery.

Back to assuming we know more than them and asking about that first.

Good luck! I hope he feels better fast.
 
Thanks JM
I do have a sanitary cycle but I wasn't sure that would do the trick. My issue is that his symptoms (which we all thought was a flare) started a week ago so he has used towels that got washed & put back in the closet for the next guy. And I have also washed his stuff mixed in with everyone else's clothes for the past week. :ybatty:
 
CIC
I made hubby stop at SAMs club & buy white towels for him today! After this I'm thinking I might need to switch everyone to white everything and give up the matchy matchy towels & bedding!
 
Bahaha I gave up matchy matchy years ago! So much easier...everything white..everything into bleach! When one towel fades etc I don't have to throw out a whole set. I told hubby we are going spa motif.
 
I used Lysol throughout my house. It is the only think that I see kills germs.

My SIL is a nurse in a hospital & my brother is finishing up med school. They use lysol. If they use it, it is good enough for me.
 
There really isn't enough info anywhere about cleaning and disinfecting.
I have LJ quarantined to his own bathroom as well & I put a roll of paper towels in there instead of a hand towel.
I am bleaching his bathroom everyday & the shower
Bleaching towels & underwear
Sanitary cycle dark clothes, blankets etc.
So, question, how long do we do all of this for? He has a 2 week rx, do this until he is done??
I was going to ask the nurse, but she told me to use Clorox wipes & I had to tell her there is no bleach in Clorox wipes!

I'm with you SM!!! Give us a vaccine already!!!!!!!!!
 
It sounds like you are cleaning good. When Brian had C Diff I made sure I kept the bathroom really clean. After he pooped and he flushed (and always with the lid down-otherwise its like the toilet is spraying droplets all over the bathroom) , I'd spray some bleach in the bowel and let it sit, Then flush it down again. Then clean the countertops, the doorknob, the light switch, etc. Don't have toothbrushes out on the sink counter. C Diff can live for a long time on surfaces. I would steam mop my floors with a little bleach in it, and also kept sheets clean. He didn't re-infect himself..nor did anyone else in the house get it. Its a hand to mouth thing... so keep hands clean-and out of the face! :) But it sounds like you are doing what you need to and beyond.
 
As of today I do feel like I have entered the gates of cleaning hell! Lol!

How long should I keep up the perpetual bleaching/cleaning?
 
We are on day 6 of vancomycin have 8 more to go

We haven't seen much improvement yet:yfaint: My poor boy.
I am SO NOT GOOD at the watch & wait & wait & see!

I am so worried someone else is going to get this too...how long until we are "in the clear?"
 
Usually people who aren't immune suppressed or have IBD don't get it. Our gut fights it off. If his symptoms are clearing...then the c diff is probably too. (Just my opinion, of course)
 
My daughter started feeling better around day 6 or so, so it should happen soon! She stopped having bad diarrhea after 10 days or so. Hang in there!
 
Gmama we aren't on vancomycin we are on Flagyl, and we have 4 more days. If the c diff doesn't clear up with flagyl then we move to vancomycin supposedly. The diarrhea is gone, the blood is gone (except now she is back to what she had before, just a little bit, I think which is the crohn's) but her frequency hasn't changed much. In fact she was up twice last night! I was really hoping the c diff was the real problem of this all and she would miraculously have her symptoms reduced... That it appears is not meant to be.
 
We couldn't do the flagyl because the 2 times we have tried it the flagyl made LJ super nauseous (to the point he couldn't eat and would barely drink)
He is on 500mg 4X day, which seems like a really strong dose (but what do I know about dosing:ybatty:)
He still has all of the same symptoms day 7 as he did day 1. I was also hopeful that this would give him some needed relief. He can't make it to school like this and has already been home for a month. I too think that this is the Crohn's and not just the infection:eek2:
We are both acutely aware at this point that homeschooling is not what either of us wants. LOL!
 
Well back to the GI. He was a bit too happy that LJ has c diff. Said he thinks the D 8 times a day is from the antibiotic. The grand plan is to leave the Remi infusions as is 5mg at 8 weeks, and keep him on the pred for the next 3 months or so before we start to taper giving the Remi time to "kick in"

Questions for (as CIC would say) the committee
Anybody else stick on prednisone for a good 3 months before a taper?

I have started giving LJ florostor 2 caps a day...should it be more?

And when he is done with the antibiotic should I give him a different probiotic or stick with the florostor?

A friend says that Standard Process Symbiotic is the best probiotic out there.
Anybody heard of it?

Sorry for all the questions...just not sure what we should be doing:yfaint:
 
Sarah's third course of pred was a long one, I think she was on 50mg pred for 5 weeks then taper at 5mg per week.

What is the dose of pred?
 
He is on 30mg

This is the first time we have used it. He has been on Entocort for the past 9/10 months. It seemed to be pretty effective until about 2 months ago. So the doc switched him straight from Entocort to prednisone 2 weeks ago.
I wasn't sure how typical a long dose of prednisone was. It seems like most of the kids just do a burst.
Thanks Catherine!
 
Hopefully when c diff clears up your son will get my favorite side effect of pred which is weight gain.

Has he started eating more?
 
My daughter was on pred for about 2 months before we tapered. Be ready for the "moon face," my daughter was NOT happy about that.
Not sure about the probiotics - my daughter takes VSL #3 and has done well on that. A doctor has to prescribe it though.
 
3 months of pred here for DS but only because MTX was not able to work enough for him to taper.
everytime - we tapered things went south so we change mtx doses and round and round it went until we finally moved on to remicade after 3 months
 
A 6-8 week course of Pred before tapering is pretty common, three months not so much but certainly not uncommon.

VSL#3 seems to be the probiotic most recommended for IBD when reading through the forums. I asked our GI about probiotics generally and this one in particular and in his opinion he thought VSL#3 was okay to take if wanted but there were not enough studies to support its usefulness in IBD, or any probiotic for that matter. (shrug) Seems it is good for some liver conditions and other disorders??

I read up a bit on ileal Crohn’s and Culturelle Lactobacillus GG was the one that seemed to be the favourite there, but that was a while ago. Sarah took it for a while, she is in remission and didn’t notice any difference but if you are in remission I don’t imagine you would see an appreciable difference?? Anyway, she decided to stop taking it and nothing has changed. Again (shrug) :lol:

Dusty. xxx
 
O was on prednisone for three months when she was first diagnosed and while waiting for Remicade to "kick in". Are there plans to taper? My only concern would be "without tapering how do you know if the Remicade is working or not" For us, it was clear it wasn't, as every time we tapered symptoms returned. Our GI's response to that was to shorten intervals and up dosage.

Poor guy. So no advice from the GI on the diarrhea caused by the antibiotics. I feel for him as antibiotics rip my system apart and I don't have CD!

As for probiotics our GI is luke warm on them. He says there are so many different types and you have to take the exact right type for your system and it is very hard to nail that down. What do you know...it is an individual thing..who would have guessed?
 
Dusty-thanks for the reply. Yes our GI said there are no studies that show probiotic use is beneficial for Crohn's. So he has not been helpful. Nor would he prescribe a probiotic. When he saw that I was giving LJ the florostor, he literally did shrug! Ha!
I'm thinking that since we are coming off of a c diff infection, I need to have him on some type of probiotic, KWIM?
I chose the florostor because it said that it does not get "killed off" by the antibiotic like other probiotics would. I'm just not sure if I should leave him on that or switch him to another probiotic once he is done with the antibiotic?
MLP-we have been in that boat with the entocort for almost a year because nothing was working on its own. So every time we tried to taper LJ would flare up. But a few months ago it really stopped working for him, so here we are with the prednisone.
Maya-he really is sensitive about his looks, right now it's about being so thin...maybe he will think a moon face is an improvement!
Catherine-he will eat a normal amount of food...not overly hungry. I'm hoping that once we are done with these antibiotics the prednisone will just make him so hungry that he will gain a ton of weight! He totally needs it! Between the flares, surgery, & c diff D, he is down to 100# at 5'7":eek2:
 
CIC,
He says that once we get him over the c diff, the prednisone should get hold of the inflammation (Sed rate is 20) along with a few more infusions (our next one is 2/28 & then wait out another 8 weeks) As long as he is under better control at that point, then taper and see how he does. Then he would consider adjusting the Remi dose or interval. I am so not good at the wait & watch & watch & see:ybatty: he literally looked at me & said you need patience! Lol! I know I annoy the hell out of all of these docs, but I don't even care anymore! Ha!
 
The waiting is the worst part… we're currently waiting for Humira to kick in for my daughter. It's so difficult to watch your child in pain and so miserable for so long.
Have you considered getting a second opinion? Our GI was quite willing to shorten the interval/up the dose. It seems quite standard to go more often that every 8 weeks.
 
Oh girl you should take lessons from me. So patient and all the docs run to answer my calls because I so rarely bother them:ylol::ylol::hallo3::hallo3::
 
I know what you mean about needing something after having C Diff. I don’t know that you would need to change probiotics though??

I know I would have missed this somewhere in one of your threads but aside from the perianal disease does your son have disease located elsewhere?

Also if your GI won’t prescribe a probiotic can you get your GP to do it?
Our GI whilst not prescribing to the idea that probiotics are useful he doesn’t disagree with their use, he just says...go ahead, who knows and they won’t do any harm…and really that it is exactly the case.

Dusty. xxx
 
My daughter was on Prednisone for 5 months, first at 20mg then 40. She didn't get the dreaded moon face until we doubled her dose. Prednisone really gave her her life back and for that reason we are considering trying it again.

Our GI isn't big on probotics either. However, he did prescribe Florastor before A was officially diagnosed. It didn't help her symptoms and was expensive so we stopped.
 
WE use VSl#3 DS ( prescription only) for DS....
It really helps when he is on antibiotics....
GI started him on it last summer because his bothersome symptoms are in his lower gi track and rectum .
It "seemed" to help so he continues to take it.
 
Sarah only last 4 weeks between 2 and 3 course of pred.

Our GI plan was to stay on pred to the inflammatory markers returned a normal. Blood tests were done at four weeks which showed normal markers, she begin the taper a week later.

On 30 mg pred she had no side effects a part from weight gain.

On 50 mg pred she moon face, acne and trouble retaining information.
 
Thanks everyone for your support! It really means a lot!
I do feel reassured that we are not too off base with the prednisone situation. At least for the current plan:smile:

Dusty he has inflammation in his TI as well. I do wish there was more of a "whole person" approach with these doc's. Even my docs don't recognize anything except what medicine to use next. Don't get me wrong, I'm all about needing the meds but there has to be a benefit to the addition of supplements & diet.
Maya-I do know what you mean. I feel like it is literally killing me to wait for this or that to work.
The doc said that he feels like the Remi needs more time ( we have done the 3 loading doses) and after 2 rounds at 8 weeks, he will consider adjusting the dose if he needs it. I am praying for the Remi to work. If it doesn't, we are close to being out of options so at that point I think we would go to CHOP since we live in PA.
 
We've been to CHOP and loved it! We were very impressed, we saw both a rheumatologist and a GI.
I hope Remicade works though and you don't have to go!
 
I am a huge fan of diet. Not alone mind you but in addition to meds and to at the very least support overall health. It started when I realized these kids don't absorb everything they are eating so I decided heck then I will make sure everything she eats has dense nutritional value. Then we went with "clean" eating which then led us to vegan. O had her last GI appointment in November and he couldn't stop saying how great she looked and how good her numbers were. He swore there was no medical support for diet but he told me whatever we were doing to keep it up. We fell waaaaay off the wagon after Thanksgiving and are having a hard time getting back. Apparently, infusion nurses and docs nurse are reporting that O doesn't look as good as usual. Not alarmingly bad just not as good. GI's nurse asked me what we were eating these days. We are going to try to go back on clean eating and the anti inflammatory diet for a while and see if that helps her. Diet is just as individual as everything else with this darn disease but it doesn't hurt to play with it to help support their overall health and healing.
 
So when you say clean eating, is that like a whole food, or is it just certain foods?
I'm always curious what people are doing!
What I hate is that all of the docs we have seen have said that "diet doesn't matter" yes in those exact words. And current doc tells LJ to eat anything & everything he wants because he wants him to gain weight.
Makes me nuts :ybatty:
 
Oh I got plenty of that also. I think what they fail to really explain is diet didn't cause this and diet won't cure it. That is really what they mean by diet doesn't matter. However, if you have one of those CD sufferers that certain foods bother them then heck to the yeah diet matters! Plus, I think it is irresponsible to at least not acknowledge that a healthy diet will at least help with overall health.

I was so encouraged that our GI office has a registered dietician on staff. Until I realized that she is just a calorie counter, calcium, iron and vit d3 pusher. Beyond that very little in the way of true nutritional counseling.

I also really think that until inflammation is solidly under control you will not see much weight gain as he isn't absorbing everything. Just throwing tons of food at an inflamed bowel isn't going to make a child gain weight. O ate like a football player prior to dx and lost weight!

Yes clean eating means nothing processed. There are varying degrees to which people do this. Some won't eat cheese because it didn't come out of the cow as cheese. Our family is trying the anti inflammatory clean eating diet. O also has psoriasis, another inflammatory disease, so I am hoping the diet helps with that as well. The docs who advocate this way of eating say if you need to gain you gain and if you need to lose you lose. It just naturally balances your body to where it needs to be. I will let you know. We have two in the family who need to lose, two who should gain and one who is perfect.
 
I think you are spot on with the inflammation factor.
I do need to do a better job with our diet here. It's not awful but could use some improvement. I get worn down just trying to figure out what to cook! Ha!
Yes let me know what happens with the family gaining or losing...I do think it will work for everyone.
I'm thinking about doing some juicing, but the fruit is awful right now! Lol
 
OH! We do smoothies. Not juicing per se...we do the nutria bullet. It pulverizes everything into a juice consistency. O's favorite is spinach (you can also do Kale), strawberries, blueberries and banana. We add chia seeds, flax seeds, wheat germ and hemp seeds to it. Definitely a great way to get a lot of nutrients into them fast and deliciously.
 
Matt has no particular diet but doesn’t eat much ‘junk food’ and his diet tends to resemble that of a low residue diet for the most part. This style of eating just seems to be what sits best with him.

Sarah on the other has made drastic changes to her diet about 3.5 years ago. She moved to a vegetarian diet and from there gravitated to a vegan/raw vegan diet. I have noticed of late she is slipping in some seafood from time to time but definite no no’s for her are dairy and excess sugar.
She juices but also does smoothies via her Blitz 2 Go, I imagine it is much like the nutria bullet that cic uses…

kambrook_blitz_2_go_blender_007ff0fd_POP.jpg


With having terminal ileum involvement please ensure he has blood levels done for Iron Stores, Folate and B12.

Also have his Vitamin D, Magnesium and Zinc levels checked and continue to monitor even if results are normal now.

After extensive reading on the forum and wider web plus invaluable research and advice from David I have come to be of the full belief that I need to aim for my kids to be at the upper reaches of what are considered to be the normal range for these vitamins and minerals. They each play a critical role in the body’s well being and for magnesium and zinc they have the added role of playing a vital part in healing and inflammatory control. I supplement to deficiencies only and interestingly enough, aside from Zinc which I am tweaking at the moment for Matt due to being above normal, with the supplements I am giving they are being held in good high range numbers but not exceeding limits. So in their case I think it serves to prove that there are certainly limitations as to what they are absorbing from their diet and without supplementation they could potentially face some serious issues. I must make mention here that both of my children have had ileocaecal resections.

Our GI also recommended taking the spice Turmeric, it has anti inflammatory properties. I had read about it on here but never went any further than that until the GI mentioned it. They now take it in capsule form once a day.

Dusty. xxx
 
We also saw a dietician who was useless. My son's vit D was low so I spoke to her - all I got was "cereals sometimes have vit D added, take a kids supplement" and "are you going on a summer holiday somewhere sunny?" :ybatty:
I do some juicing and some smoothies. My son loves coconut milk, banana, frozen mango and cherries - yummy and like a milkshake. I add a bit of kale to fruit smoothies as it is quite a mild taste and gives them some greens. Hope things get better soon
 
Dusty I always appreciate your advice! Although I do need to beg a bit, the doc is willing to run nutritional/mineral blood work. But then if anything is low he doesn't have any real suggestions, so then I'm here with all of you trying to figure things out!
LJ eats a low res diet as well. He is a very plain eater. No sauces, only butter.
I do need to experiment with juicing but he doesn't really like smoothies or milk shakes...it's all about the texture. I can get him to choke down an Ensure plus (350 calories) but it's just out of necessity. I might be able to get the juicing to work with the nutribullet if I can get it to come out more like juice, and not thick.
My thought in changing the probiotic is that the florostor only has s. Boulardii where another would have a blend of a few different probiotics. I guess the question is what is best to "crowd out" the c diff?
I will have to look at my turmeric options here in the states...even for myself, I have a form of RA.
 
I don't know much about juicing but with the nutria bullet you can control the consistency with how much water you add. My girls complain I make them to "juicy" so maybe that would be an option?
 
Gmama,
We take the viva labs tumeric called curcumin c3 complex. We buy it on amazon. Whatever form of tumeric you decide to get make sure it has Bioperene in it. Bioperene is an ingredient made from black pepper that enhances the absorption of certain vitamins and minerals. Without it tumeric is barely absorbed by the body.
 
I'm a bit late to the discussion, but I just wanted to say with probiotics and diet, it's well worth thinking outside the IBD box sometimes. Our GI is meh on probiotics and says there are no studies they help with Crohn's. Key words "help with Crohn's". Ok, they may or may not help with Crohn's, but I do believe they help with one's general health. Big picture, KWIM? The same with diet. A particular diet may or may not help with Crohn's, but eating clean, for example, may give you more energy, help you sleep better, and catch fewer colds.

We need to remember that specialists are specialists for their 10% of the body and don't always think big picture and that leaves it up to us as parents to remember the other 90% of the body.

DS and I take Melaleuca brand probiotics and my younger son takes Culturelle. I've heard Florastor can cause yeast infections for some people who are prone to them (DS!) since it is yeast based. I'm a total believer that the probiotics are what's kept my kids from getting the puking bugs that have been going around school like crazy. The nurse sent my younger son home last week because 1/2 his class was out with the puking bug and the other half was throwing up in class. He was the only one that wasn't getting sick, so she thought he'd be safer at home! Woohoo, probiotics? I think so.
 
Thanks Mehita & well said! Our GI is all about the medicine and doesn't think supplements, diet, juicing or probiotics help. So then I'm here with all of you trying to figure it all out! Ha! So happy that I have all of you otherwise I don't know where I would be at this point!!! Even crazier I guess:ybatty:
 
He is sill having D 8 times a day. The doc thinks it's from the antibiotic being such a strong dose & when he is done (Last day Tuesday) that the D should subside, and the prednisone should "take hold"
I am just praying the doc is right & the c diff is clear. I don't know how LJ could struggle through any more time on the antibiotics.
Thanks for asking about him!
 
The D is usually a sign to stop, it can really dehydrate a child quickly. Have you used pedialyte or other electrolyte replacements?
 
Durwardian,
We have been really diligent with the fluids...even using a chart! Ha! Which of course at 13 he thinks is stupid but it's working!
BTW did a family trip to Oahu a few years back...such an absolutely beautiful place! To live there has to be just amazing!
 
Oh my gosh! That poor boy. I know how I suffer on antibiotics and wouldn't wish that on my worst enemy. UGH! 24 more hours!!!!!!
 
How is he now that the antibiotics have stopped? Perking up at all? Haha see how patient I am? Not even 24 hours off the antibiotics and I am looking for improvement. I should really give classes.
 
Hi CIC! I just need this kid to be BETTER! he is still the same, but I'm hopeful for some improvement by tomorrow! Ha! And I'm going to be disappointed if it's not at least a few times less a day!
I said to the doc, should we retest in 10 days? He said yes AND as soon as you are done with the antibiotics because I don't want to wait 10 to find out it's still there. Everything I read (which by the way, the info out there is lacking) said that there is no reason to test and only a possible re test 10-14 days later.
I did gag my way through a collection & got it to the lab anyway.
I have never been a "I need a break from my life" kind of person, but I think I need a break from my life. KWIM?
 
Oh no! I was so hoping that today he would have turned the corner. I am glad the doc is retesting although sorry you had to collect. O.K. gross question here but you ay you gagged your way through the collection. C diff has a particularly noxious odor. Is that still there?
 
LOL Gmama, me too! Still gag at every collection. You'd think I would have a stronger stomach than that by now, but nope... Poop, barf, saliva, snot get me every time. I was so glad when the boys grew out of that snotty nosed, diaper wearing, vomiting stage. Yet here I am still dealing with the poop.
 
You two make me laugh! :ylol:I can look at anything, if I smell it I'm done for!
I was praying that hubby would still be home when LJ went this morning, but nope he was long gone! Ha!
CIC who knew...your every hygienist dream!
You are right JM & I are signed up for the wrong disease!! Never in my wildest dreams could I have realized that all I would be thinking about, (begging) to look at, collecting samples of somebody else's poop! Life is crazy!
 
Want to know what regurgitated fettuccine alfredo smells and looks like? Ugh. DS spent most of 2012 vomiting with his stricture. I will take poop any day!
 
Gmama said:
Never in my wildest dreams could I have realized that all I would be thinking about, (begging) to look at, collecting samples of somebody else's poop! Life is crazy!
Click to expand...

Girl! I sunk to an all time low when O had to use a porta potty at a track meet and I was in there with her. For some reason I caught a glimpse of the previous deposits and saw one that made me say, "hmmm that person needs to get in to GI fast". Haha I told O I was sick because now I was analyzing a stranger's poop!
 
Well the update of the day is that his c diff test was negative, although we will check it again in 10 days.
He did go 5 times today all bad D, but that is about half of what he was going, so I'm trying to see the positive.
Praying he improves enough to get back to school, even if it's just a few hours a day.
 
Keep up with the c diff testing. Dani's 1st one was negative last week. Today she got the bright red blood back. Think she still has c diff... monday call to the doctors I'm sure this will be a positive test...
 
You can use normal bleach with colors. They may fade a bit over time, but no big deal. That is the least of your worries.

Gmama said:
So for colored towels and clothes, what did you use?
I also have granite that I can't use bleach on, what else would work? In my 1 day of reading all I came back to was that bleach is the only thing that kills the spores.
I used so much bleach today I think I ruined the mucous membranes in my nose! :ylol:
Any advice would be much appreciated!!
Click to expand...
 
Just an update.
LJ had a literally crappy weekend. Called the GI, told them that we are now through the antibiotics but the pred is not "taking hold" as the Dr. said should happen.
Long story short, they think that he will get lots of relief from the Remi infusion and made a big deal about the ins. Co. Allowing them to move it up 2 days. So we are now going for our 4th infusion on Wednesday.
Praying this gets my poor guy on track!
 
Hope the infusion helps! The nurses told us we should see an improvement by the third or fourth infusion when M was on Remicade - perhaps this will be the "magic" one?
 
I'm sorry he's still not feeling well. I hope the Remi takes care of things.

How are you holding up? Are you taking care of yourself through this?
 
Wow! Even prednisone isn't helping? That's odd. Poor guy. Poor mama! Sending some Remi prayers up for you!
 

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