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Crohn's Disease Forum » Parents of Kids with IBD » Check-up time, fingers crossed


 
07-28-2014, 07:28 PM   #61
kimmidwife
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Glad things went smoothly with the SBFT. Hopefully now they will come up with a plan. Keeping my fingers crossed for you guys!
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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.
07-29-2014, 06:06 AM   #62
DustyKat
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So fab to hear all went well today Clash.

Sending loads of luck with the follow up!

Dusty. xxx
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07-29-2014, 12:55 PM   #63
awmom
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Glad things went well......that stuff is NOT easy to swallow!!
08-05-2014, 10:02 AM   #64
Clash
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I spoke with the GI nurse yesterday. The GI got the info he was looking for and wanted to add C at the end of the day Thursday so he could spend as much time as needed discussing our next step. Unfortunately, that is the day C has senior services at school and he is scheduled to work, also I have my second root canal scheduled that day. So, now we are going to meet with him Tuesday morning before his in service rotation.

We were also given the number of the colorectal surgeon to schedule a consult.

C is still unable to gain weight without maintenance EN. One week without it and he dropped about 5 lbs. He is having no symptoms of CD other than that.

He has been complaining of wrist pain so his SpA is active, I think. But we are trying to get the CD decisions sorted out then will address SpA.

Also, I'm fairly certain C has chronic conjunctivitis, which can apparently be an EIM of CD. We already know he has episcleritis but it has been dormant. I'm trying to get back in to see ophthalmologist but between our schedule and his vacation and appt schedule it hadn't happened yet. C does have eye drops for this though, so just treating as arises.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-05-2014, 10:16 AM   #65
Tesscorm
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Good luck at the apptmts! It is hard scheduling all the apptmts into already busy schedules:

Re En and weight - keep in mind, S was on supplemental EN (1500 cal/per) for pretty much two years! And, once he'd regained the pre-dx lost weight and gained a bit more to take him to a good weight, he then stayed steady for 1.5 years on the same EN intake (so, would he have lost weight if he'd stopped??). While he may have instinctively adjusted his diet, malabsorption must have played a bit of a part because with EN's 1500 cal, he was still eating a pretty normal diet. Now that he's on remicade, he only drinks 1, sometimes 2 Boosts per day and has actually gained more weight than he'd like. So, either (or both) the remicade has corrected any malabsorption issue and/or during 17-20 years, his body was still developing/growing and the supplemental EN supplied just enough extra calories/nutrients to keep things balanced. Could be a similar situation for C as he is at the same age when S was at the beginning of his 2 year EN supplementation??
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-05-2014, 10:40 AM   #66
Clash
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At 2700 calories, plus eating like a teenage boy he was gaining. At 1500 calories plus eating like a teenage boy he is maintaining(fluctuating within 2lbs). The GI and nutritionist believe that since his intake of food plus 1500 calories of EN totals more than 3000 calories a day he should still be gaining but isn't due to malabsorption of the food intake.

Due to a trip C went a week without EN, he wasn't extremely active and ate like crazy yet he lost weight. Nutritionist and GI see this as more evidence of malabsorption.

C is willing to do EN to "give him a boost" but does not see the benefit of long term EN just to maintain weight. He says he would rather fix the underlying issue and then rely on maintenence EN for boost of growth through growth window period(like you said 17-20) if needed. GI agrees that we have to address the underlying issue so that C can gain and maintain without EN. He believes in the benefit of EN but says it is not reasonable to be long term dependent on it for the sole purpose of weight maintenance when other avenues exist to treat underlying cause.

My opinion is that EN has been great for C since it has finally allowed him to gain weight. But even though I'm quite enamored by the progress EN has provided it is concerning that he is dependent on it for weight maintenance. We know he has inflammation that high dose remicade and mtx did not address and that there is disease progression and scar tissue involved. I want to address these and then use EN as an adjunct therapy to help achieve optimal growth before the window closes.

Sorry this is long winded but it is therapeutic to put it all in words! Thanks!
08-05-2014, 11:23 AM   #67
Tesscorm
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Totally agree with everything you said! The underlying issue must be resolved or weight maintenance on EN will just mask the issue as the problem continues to worsen.

I didn't mean that as long as he was on EN and gaining, all was good... actually meant exactly what you said... Once all is treated, using EN during a growth phase is a 'good' use of EN. When when in remission, these kids could still have a bit of scar tissue that would minimally hamper absorption so EN can maybe offset this small malabsorption issue.

Really hope you get solid answers and a solid plan!!!
08-05-2014, 11:25 AM   #68
my little penguin
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We saw the same with DS
Once he had been on remicade a while three shakes caused him to gain a lot almost too much.
Now he just drinks two a day sometimes one to keep from gaining too much .
Hope things settle soon
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08-05-2014, 11:35 AM   #69
Clash
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Tesscorm, I thought we were on the same page and our posts were in agreement. I just needed to put all those thoughts in paper to kinda purge all this anxiety that is building within me! Not sure what to expect in the the next several weeks and that has me a bit nervous, not to mention J's first GI appt is tomorrow...ughh.

I read a study that said that anti tnf doesn't work for 30% of CD'ers. That has me a bit twisted up, I mean C's symptoms resolved immediately after the start of remicade but there has never been an imaging/colonoscopy that has shown him to be in remission Always there has been simmering inflammation regardless of schedule and dose of remicade plus addition of mtx.

I'm also worried by the fact that remicade did not address his SpA-AS(rheumy says when AS comes with IBD it is referred to as IBD related SpA but has the same result as AS). He complained of lower back pain the entire time he was on remicade and has only stopped since changing to mtx injections.

I just really don't know what to do with all this info that keeps coming. I know there is no right or wrong answer only what we feel is best for our child with the info we have but still fret over course of action at this point.
08-05-2014, 11:40 AM   #70
Clash
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MLP, C wasn't on EN for long before remicade was stopped. He never really gained on remicade and mtx alone though. I think in two plus years he gained and maintained almost 10 pounds.
08-05-2014, 01:11 PM   #71
Maya142
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I hope they're able to figure something out for C!

Funnily enough, both my daughters did better on Humira versus Remicade for their AS (not sure if they're just weird or something). However, with AS too there are certain number of people who just do not respond to Anti-TNFs (I think it might be that 60% of people show at least 40% improvement). But you definitely do want to address the AS, we are paying the price for not treating M aggressively sooner .

Hope everything goes well on Tuesday!
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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
08-05-2014, 01:47 PM   #72
my little penguin
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DS has JSpA associated with Ibd as well.
I agree with treating agressively
We were told it can run parallel or independent of Ibd flares /inflammation.

DS has the type that runs independent .

So far the oral Mtx plus humira has not been effective for his .
08-05-2014, 01:59 PM   #73
Clash
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Since C doesn't seem to have reached CD remission then I'm not sure if his is independent or not. I do know know that when he has symptomatic CD flares that joint pain in the knees is always the worst of his symptoms. But not sure if this is SpA?

The only reason we haven't opted yet for another biologic is because he may be having surgery. Afterward we would be deciding on a biologic that can help both dxes.
08-05-2014, 02:11 PM   #74
my little penguin
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Lower joints knees , ankles hips ,SI, pelvis area, heels are all SpA as well as sometimes the upper periphial joints .
Its starts away from the spine ( arms/legs) and then moves inward .
Most kids start with an ERA dx if they don't already have Ibd .
If C had it before he was 16 then he is considered JSpA regardless of his age now but if he had it after 16 then it's the adult form of SpA
The criteria is slightly different for each also depending on whether you are using Europe or international standards - no one agrees .

The only two proven biologics to treat both are remicade and humira .
Still holding out hope sterlera will be approved for both soon .
08-05-2014, 02:16 PM   #75
Clash
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C was dxed with CD when he was 15 had joint pain with flares from the beginning but wasn't diagnosed until 17 with SpA. The first rheumy wasn't really concerned and seemed lackadaisical in dxing anything.
08-05-2014, 02:16 PM   #76
Clash
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C will be 18 in spetember, so eligible for stelara, which might be considered.
08-05-2014, 07:27 PM   #77
my little penguin
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http://keck.usc.edu/en/Education/Aca...-Int%20IBD.pdf
08-05-2014, 07:32 PM   #78
my little penguin
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http://m.ard.bmj.com/content/57/3/135.short
08-05-2014, 07:35 PM   #79
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Thanks for the article, MLP!
08-05-2014, 07:35 PM   #80
my little penguin
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686901/
08-05-2014, 08:47 PM   #81
Maya142
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M's SI joints, knees and hips give her the most trouble. But any joint can be involved - truly any - we have elbows, fingers, ribs and jaw (and wrists and shoulders - the list goes on!).

One rheumatologist we saw had very positive results with Stelara (an adult rheumatologist that my older daughter sees)!!! He did say it takes a long time to kick in though.

JSpA does seem to involve more joints versus AS/SpA - my husband's only joints that are involved are hips and spine.
08-12-2014, 05:26 PM   #82
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Ok C will have a surgery consult next Tuesday. We have decided on surgery. We discussed at length, I knew it was coming yet it still makes me a bit anxious. I can only hope this gives C the opportunity to have a clean slate to start anew with a med that will hopefully keep even the simmering inflammation at bay.

I have to say I love C's GI as does he and he spent all time in the world going over his reasoning. We felt very confident in what he had to say and are ready to move forward. There are no guarantees but I have hope that this will really help C.
08-12-2014, 05:32 PM   #83
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Hope the surgery consult goes well. A hard decision, but it does help when you trust the doc!
08-12-2014, 09:52 PM   #84
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Clash,
Surgery is a hard decision but sometimes it can work out well. I highly reccomend asking that he be given an epidural during the surgery for pain control for after. They gave Caitlyn one and kept it in four days and it made a huge difference in her recovery. She felt almost no pain those first four days and by the time they took it off the pain had already lessened greatly. She was able to walk with the epidural with assistance the day after the surgery and until they took it out. Keep us posted. Sending prayers for an easy and successful surgery and a fast recovery.
08-13-2014, 12:03 AM   #85
Maya142
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Glad you have such a great doctor. It makes all the difference!
Sending hugs
08-13-2014, 08:03 AM   #86
Tesscorm
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Wish C didn't have to go down the surgery path but, if it will eliminate the inflammation, then sending lots of wishes that it works and he has a quick recovery! Dusty's kids have had great results from their surgeries, hoping C has the same experience!

Not sure where the thread can be found but Dusty posted day-by-day experiences with the surgery - might help you and C know what's coming.
08-13-2014, 08:23 AM   #87
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Thinking of you in this tough time. Facing surgery and making that final decision to do it tough wondering that unknown variable of what happens after and will the surgery be worth it. Keep us posted!

Thanks for the tip of the epidural. I will keep it in mind.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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08-13-2014, 09:03 AM   #88
Clash
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Kimmidwife, thanks for the tip about the epidural. So I should bring this up at the consult I guess? Are there any cons to having the epidural?

Another question, during the 2nd colonoscopy C had at the hospital he ended up having trouble with his bladder, the nurse said it can happen with sedation, anyway there were a few frantic moments between the nurses when the did some type of bladder level test, C was at 94%, and it resulted in a catheter which has probably been C's worst hospital experience. So could they or are they putting a catheter in once he is under? That was he wouldn't have to experience that pain. Is a catheter common during this type of surgery or am I over thinking it?
08-16-2014, 08:59 AM   #89
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A couple more questions:

1. What does an epidural for surgery consist of and does it eliminates the need for a pain pump?

2. Hubby's niece with CD has had numerous surgeries and due to steroid dependency she always has issues with surgical wound heal. This last surgery she said the docs used some type of staple and binding that remained on for two weeks, she said it was awesome and after the two weeks the scar was this itty bitty thin line. They called the procedure something but she can't remember what. Now I know C's surgery should be laparoscopic(I assume) but I'd like to ask about this just in case things change while in surgery(I know over worry and preparation). Anyone know what this is?

3. The other struggle I have right now is we have decided on this surgery partially because C can't gain weight due to supposedly malabsoption in TI and at IC valve where things are absorbed. So, ummm how does removing those things help the effort of weight gain and growth?

4. Any kids on MTX get pigmentation change(darker) around the bends of their arms and a bit up from that? C showed it to me last night, almost looks like dirt not washed well(ha). Who would I call about this could it be mtx related or something else entirely? He did have a beach trip a few weeks back and although he wore sunscreen he did tan(he doesn't burn usually just darkens to deep brown)

5. Lastly,(I know all these questions are probs driving y'all mad), awhile back C had an infected fingernail if I remember right. And these red bumps came up around it and down his finger. He now has dropped something on his toe, it did the normal turn purple and blue but now those red bumps have come up there as well. Any ideas? And should this be a GP or derm thing? Last time GP basically said I don't know, could be infection and gave him antibiotic and a steroid burst.

Still no CD symptoms, I still need to get him to the ophthalmologist because his eyes still get red but not in the episcleritis way. I wish while in the hospital for surgery I could have each specialty come by as a team and wrap all these things up so each doc knows every aspect!
08-16-2014, 07:44 PM   #90
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Old post so ignore the references to date/time frames.

Sarah:
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased.

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips.

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once.

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

Matt:
had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery.

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair.

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation.

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left.

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it.

They have both been on maintenance meds (Imuran) following surgery.
He will have a urinary catheter but it will be put in once he is under.

1. What does an epidural for surgery consist of and does it eliminates the need for a pain pump?

It depends on how the epidural is set up. Some are controlled by staff and others are much the same as a PCA in the sense that the patient can control, to a degree, how much pain management is delivered.

2. Hubby's niece with CD has had numerous surgeries and due to steroid dependency she always has issues with surgical wound heal. This last surgery she said the docs used some type of staple and binding that remained on for two weeks, she said it was awesome and after the two weeks the scar was this itty bitty thin line. They called the procedure something but she can't remember what. Now I know C's surgery should be laparoscopic(I assume) but I'd like to ask about this just in case things change while in surgery(I know over worry and preparation). Anyone know what this is?

Iím not sure what the closure was your niece had Clash but neither of my kids had any issue with wound healing.

3. The other struggle I have right now is we have decided on this surgery partially because C can't gain weight due to supposedly malabsoption in TI and at IC valve where things are absorbed. So, ummm how does removing those things help the effort of weight gain and growth?

I see where you are coming from Clash and you are right to be confused about it. For some people it is difficult to gain weight following surgery but the surgery is often more about the overall well being off the patient that surgery often brings. Eliminating that simmering inflammation benefits not only their bowel but also has positive effects on other body systems as it allows the emphasis to be taken off the constant problem area.

4. Any kids on MTX get pigmentation change(darker) around the bends of their arms and a bit up from that? C showed it to me last night, almost looks like dirt not washed well(ha). Who would I call about this could it be mtx related or something else entirely? He did have a beach trip a few weeks back and although he wore sunscreen he did tan(he doesn't burn usually just darkens to deep brown)

Donít know about this one.

5. Lastly,(I know all these questions are probs driving y'all mad), awhile back C had an infected fingernail if I remember right. And these red bumps came up around it and down his finger. He now has dropped something on his toe, it did the normal turn purple and blue but now those red bumps have come up there as well. Any ideas? And should this be a GP or derm thing? Last time GP basically said I don't know, could be infection and gave him antibiotic and a steroid burst.

Not sure with this one either Clash.

Pre operatively Imuran and Prednisone werenít great meds for Matt. I donít believe they did nothing but I do think they only stabilised him at best, certainly nothing even approaching a state of remission. He has maintained remission for three years plus, is it the Imuran? I donít know, maybe he would be the same with no meds?? Unfortunately there is no way of knowing but whilst ever it isnít broken we arenít changing a thing.

Sarah had no meds pre op and she too is maintaining remission on Imuran post op. The same analogy applies to her.

Dusty. xxx
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