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Crohn's Disease Forum » Parents of Kids with IBD » Surgery for LJ AGAIN, so frustrated with this #X%#CD!


 
01-22-2014, 03:55 PM   #1
Gmama
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Surgery for LJ AGAIN, so frustrated with this #X%#CD!

Well my poor boy had to have another surgery 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. 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
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!?!?!!!
Sorry this is so long and rambling...I'm just not sure where to go from here
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Ginger
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
01-22-2014, 05:28 PM   #2
CrohnsKidMom
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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!
01-22-2014, 06:31 PM   #3
Donjh
 
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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.
01-22-2014, 08:34 PM   #4
Brian'sMom
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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
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-22-2014, 08:51 PM   #5
araceli
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Sending hugs and support. Sometimes it takes a while for remicade to kick in. I hope it does, soon.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
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Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
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01-22-2014, 09:12 PM   #6
Farmwife
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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.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-22-2014, 10:44 PM   #7
Mehita
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What is his Remicade schedule? Might he just need a dose adjustment or tweaking of the schedule? Have his Remi levels been checked recently?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
01-22-2014, 10:47 PM   #8
Gmama
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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.
01-22-2014, 10:53 PM   #9
Gmama
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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
01-22-2014, 11:42 PM   #10
Mehita
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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.
01-22-2014, 11:51 PM   #11
Maya142
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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!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-23-2014, 03:55 PM   #12
Gmama
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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?
01-23-2014, 04:03 PM   #13
Mehita
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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...?
01-23-2014, 04:09 PM   #14
Maya142
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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.
01-23-2014, 05:18 PM   #15
Gmama
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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!
01-24-2014, 04:27 AM   #16
Sascot
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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.
01-24-2014, 09:56 PM   #17
Gmama
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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!
01-29-2014, 08:54 PM   #18
Gmama
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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 thingugh.
01-30-2014, 09:39 AM   #19
crohnsinct
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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?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-30-2014, 03:53 PM   #20
Gmama
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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)
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!
01-30-2014, 03:56 PM   #21
Gmama
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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!
01-30-2014, 04:06 PM   #22
crohnsinct
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Well then! Glad the GI saw it the committee's way! I hope the prednisone has him feeling on top of the world soon!
01-30-2014, 10:27 PM   #23
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I really am sorry to hear he is struggling so much. I hope the prednisone kicks in fast.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-05-2014, 10:32 PM   #24
Gmama
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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.
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!
Any advice would be much appreciated!!
02-05-2014, 10:41 PM   #25
Jmrogers4
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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
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-05-2014, 10:46 PM   #26
Jmrogers4
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Found this too.
http://www.azdhs.gov/phs/oids/hai/do...et-general.pdf It has a cleaning section in it.
02-05-2014, 10:48 PM   #27
crohnsinct
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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.
02-05-2014, 10:49 PM   #28
Gmama
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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.
02-05-2014, 10:52 PM   #29
Gmama
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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!
02-06-2014, 08:22 AM   #30
crohnsinct
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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.
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