Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Update - not great :(


 
11-22-2013, 06:52 PM   #1
Ams-Qld
Senior Member
 
Ams-Qld's Avatar
 
Join Date: Sep 2012
Location: Queensland, Australia
Update - not great :(

Hey everyone, I haven't logged in for ages, but I still read here every day. Not because things are going great, but because I am either trying to keep my head in the sand (the last few months), or licking our wounds (the last few weeks). It is so hard to post and make things real, but I know you guys understand like others can't/won't and so here it all is...
As some of you may remember our 13 year old was diagnosed 3 years ago after 6 months of debilitating illness (severe dh, exhaustion, fevers, huge weight loss, pain, anaemia etc you know the drill!). He was put on 50 mg pred (at 34kg) and 50mg Imuran. Turns out he is "allergic" to pred and developed pred induced psychosis it took a year to get over the effects as it 'clung' to his previous PTSD memories from a trauma several years earlier! Consequently the Psychiatrist said he can not be on pred unless hospitalised. We tapered and remained on Imuran but he never achieved clinical remission though his symptoms improved dramatically and he gained weight (44 kg).
Fast forward to last year and he developed a perianal abscess (after unbeknownst to me he was skipping Imuran tablets ), since our GI was overseas we were told to go to a GP to see what was going on, after two days he could barely walk and was in agony. You can read that story elsewhere, but suffice to say the GP diagnosed it as a thrombosed haemorrhoid and drained it on the spot our ds was traumatised to say the least and consequently we have not been back to that particular GP! Ds went on to develop a fistula (with four sinus tracts), large skin tags, and faecal incontinence. Ten months of antibiotics later (MRE's, ultrasounds etc) and they were sure the abscess was healed and so we needed to look at further therapy. He had gained considerable weight and was not having any dh or significant abdominal pain so we were hoping for some good news!
We chose to have an EUA and colonoscopy in the next few months before determining treatment (he had not had a scope done since diagnosis as his GI is very 'relaxed' about these things ) but soon after our son developed a fissure and extreme, agonising pain for several hours after every bm and so we scheduled the scopes asap as we wanted to know exactly what was going on. He was struggling to get to school and we knew things were getting worse. Suffice to say the results were not great
His fecal cal was 1000, his sed rate 38. His hb 100 and dropping, his serum iron 2. His colonoscopy showed a large, hard, ulcerated mass in his rectum. The GI is sure this is causing his agonising pain, not just the fissures etc. The rest of his colon is mildly inflamed but not ulcerated, praise God! They were unable to find any fistula (most likely that the 'ulcerated mass' is covering the opening). He ordered another MRE to check small bowel and TI. They came back with circumferential thickening to 1cm for the TI, cecum, and a 30cm section of small bowel amongst other things his GI has applied to the government for Remicade approval. I think I am all cried out.
We got an emergency second opinion yesterday. This GI agreed that Remicade/Imuran combo was his best chance at things not progressing. He was shocked at his 'poor body condition' and says he needs to be on EN (he is 6ft tall - obviously his Crohn's has not affected his height and for that I am very thankful - but weighs just 50 kg and that is after gaining 4kg in the last two months!). He also said he needs iron infusions. (We are so frustrated that our previous GI ignored our pleas for infusions and concerns about his weight, he just keep telling us that they were symptoms, not the cause and so we needed to concentrate on getting his disease under control!) Suffice to say we are changing GI's, mind you we live in a place where our options are very limited and getting in to see someone difficult to say the least!
Anyway, if you have read all this, thanks - it feels good to get it out. At the moment I am all cried out, completely numb, all consumed with Crohn's, and just sad. I am worried about the safety profile of the combo, but also aware that he could lose his bowel if we don't get this under control soon. I am so thankful for our faith, it keeps our heads above water, but it still hurts some days to stay afloat. xxoo Ams
btw I have read all your posts and you wonderful, loving, parents encourage and inspire me everyday! I feel for you all and your precious ones and I pray they will all experience complete and long term remission soon!!!
__________________
Son with Crohn's, Dx at age 10 - 4 years ago. Anaemia of chronic disease (first iron infusion Dec 2013) Peri-anal abscesses (Aug 2012) that formed fistulae (early 2013). Began 8 weeks of EEN in Dec 2013 via ng tube.
Current Meds: Imuran (25mg) morning and night. Previous Meds: Pred, Flagyl, Cipro. Allopurinol.
Please take my thoughts and experiences as mine alone; I am not a medical professional and my humble opinions are not to be taken as advice! Blessings to you and yours!
11-22-2013, 07:05 PM   #2
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hugs and more hugs.
I hope remicade is the miracle drug for him.
It was for my son.
He deserves it.
Good luck
__________________
DS - -Crohn's -Stelara -mtx-IVIG
11-22-2013, 07:20 PM   #3
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Wow, I'm so sorry you've both been through so much.
I'll pray things turn around for him soon.
__________________
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
11-22-2013, 07:45 PM   #4
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
You and your son have been thru a lot! I am feeling like a prayer has been answered in that you have a new GI. A long time ago I posted a link to the CCFA website where a doctor talks about the risks vs benefits of medications taken for crohns. Its a long read but I think it will put your mind at ease with remicade.
http://www.ccfa.org/assets/pdfs/risk...transcript.pdf
__________________
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.
11-22-2013, 07:47 PM   #5
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sorry to hear about your son. Hoping the change of GI goes well.

May the approval process for remicade go quickly.

Have they mentioned anemia of chronic disease?
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-22-2013, 07:53 PM   #6
xmdmom
Senior Member
 
Join Date: Jun 2012
Location: New York

My Support Groups:
(((HUGS))) Supplemental nutrition EN definitely seems like a good idea. Sending your son healing thoughts!
11-23-2013, 03:58 AM   #7
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
So sorry to hear that things have got a lot worse! Sounds like the new GI is definitely better than the last one. I hope the government approval comes through soon for the Remicade. A lot of kids seem to get quick relief on it. Thinking of you!
11-23-2013, 05:56 AM   #8
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
Hi there I am so sorry to hear what your boy had being going through. Hopefully your new GI will get him back on track. My little girl was on the infliximab 6 mp combo for a while so I totally understand where you are coming from worrying about the side effects, but as parents we will always worry about our little ones and sometimes the alternative to these scary drugs is even scarier. Big hugs to you and hopefully your son will start to feel better soon
11-23-2013, 05:22 PM   #9
Ams-Qld
Senior Member
 
Ams-Qld's Avatar
 
Join Date: Sep 2012
Location: Queensland, Australia
Thanks guys, you are all so wonderful! I thought I was cried out till last night. We had a cracking storm and I went outside to cover our dogs kennel and slipped on the tiles - immediate bruising came up on my heel and I just lay there and started to cry. Not pretty tears, deep sobs from the soul. It's like it all came back to the surface. It is invading my dreams, my sleep, everything. So thanks for being there and getting it, it means so much!!!!! Wish we could all have a coffee and a good cry together!!!!
Catherine we have been mentioning anaemia of chronic disease for years to our GI, he keeps saying that it is not that bad and that we need to be more concerned about the inflammation , we felt like we were being too pushy and unnecessarily wanting more treatment!! That is mainly why we are changing GI's. The reason it has taken so long is there are very few (Ped GI's) in our State and so we were worried we would run through them all if we got too picky and then we would be known as "those" parents!! I think the other reason we have taken so long to change is that it was nice to think the GI was not too concerned, maybe it wasn't such a big deal and would just improve as he happily and quickly moved into remission -but hindsight is 20/20 and we kept thinking we could get on top of this without drastic measures and yet here we are
Hoping to get an appt with the only other private GI this week, then we will decide which one to formally switch too. I do know this one also is big on EN and iron infusions so it will probs come down to personality and bedside manner.
Blessings to you all P.S. Sascot, hope it is all going well!!!
11-23-2013, 09:24 PM   #10
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
I'm so sorry you are going through all this just getting caught up. I have so been there where you feel you finally have it all contained and something happens and the feelings just boil over again. Hope the remicade is the magic trick.
__________________
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
11-23-2013, 11:22 PM   #11
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
So sorry to hear about all your son has been going through. I really hope the new combination of medications helps! Sending lots of hugs to both of you!
__________________

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.
11-24-2013, 03:45 AM   #12
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Was surprised to find out about the shortage of pedi GI in Australia. The pedi GI in the practice my daughter attends are doing second opinions for patients from WA.

How can it possibly work to be using a pedi GI over 2500 km from where you live?

Last edited by Catherine; 11-24-2013 at 05:14 PM.
11-24-2013, 04:50 PM   #13
Ams-Qld
Senior Member
 
Ams-Qld's Avatar
 
Join Date: Sep 2012
Location: Queensland, Australia
Yeah me too Catherine! Apparently we only have 3 who take private patients, at first we tried public (there are only a few there too) but the wait was like 6 months also can't believe we have no specialist ped colorectal surgeons either! Really frustrating when your child is 6ft and a teen yet not able to go to an adult surgeon, yet is not the 'average' patient of a ped surgeon who very rarely deals with cases like theirs! If our son's last EUA showed a need for surgery we had requested that our ped GI worked in consult with a colorectal surgeon, and he thought that was a strange request!
11-24-2013, 05:12 PM   #14
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I think must be lucky we managed to skip the pedi gi all together with Sarah as her referral was written when she was already 16.

We in the private system as well, didn't even find out how long the wait would have been for public.

The wait for appointment for my 14 year old for with a pedi gi is 2 months, only another two week to go.
11-24-2013, 05:41 PM   #15
Niks
Forum Monitor
 
Niks's Avatar
 
Join Date: Nov 2012
Location: Swindon, United Kingdom

My Support Groups:
Sending you hugs. I really hope his new GI and meds get things sorted for him very quickly. Xx
__________________
Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
12-16-2013, 08:20 PM   #16
Ams-Qld
Senior Member
 
Ams-Qld's Avatar
 
Join Date: Sep 2012
Location: Queensland, Australia
Ok, so I haven't updated for awhile, things have been crazy!! We got in to see the 'third' opinion two weeks ago yesterday. They are the only IBD clinic in our State at the Children's Hospital. The only reason we got in was because DS is not in a great place, normally you can wait for up to a year!!
The 'Fellow' saw us and spent about 2 hours getting our full story, he was young and very nice and knowledgeable (doing studies and writing papers atm and going to Canada for a year to train further in IBD soon). He then presented our case to the head Dr who was also very friendly! They then sat with us for an hour and the outcome was: DS in their opinion needs the Remicade/Imuran combo. However, his body condition is not great and his iron is terrible. His scopes and MRE showed what they believe to be inflammation, however they both agreed that remicade can heal so fast as to induce and/or worsen scarring. So they recommended 8 weeks of EEN first to be followed by more scopes and MRE's. They are hoping to find that it is indeed inflammation and that it has substantially settled or gone, at which time they feel the remicade has it's best chance to promote full healing. If they find at the scopes that it is indeed scarring, they would look at surgery before starting the remicade. They also felt that if he did need surgery the EEN would build his body up to better deal with surgery and subsequent wound healing. They also gave us a heap of Remicade prep to get through. They felt we could start the process with them and move to the private Dr later, when DS had stabilised. We were happy with this plan as they were so helpful and even though it is time consuming to see them for appointments it is easier to get lot's of things set in motion at once, and it is free!!
So, we went home after more bloods and a quantiferon (?) test, and started the EEN the next day. Of course by afternoon it was obvious that he was not going to be able to keep them down (he has an aversion to milk at the best of times and lots of nausea) and so we were admitted to the Children's hospital to put in an ng tube. Apparently they have a 50/50 split of kids who can drink the EEN and kids that can't. The tube was not so pleasant and got stuck going down!!! Eventually another nurse tried and after lot's of pushing, gagging, and some vomiting it went down!! Mind you he doesn't want it taken out for the whole 8 weeks after that!! Annoyingly they put in a size 12 tube, which is huge!!! At least while we were in hospital for the night learning to run the feeds, he was given his first iron infusion and a pelvic MRI, saving us lot's of time and dollars!! Thankfully the MRI showed no abscess in his pelvis needing to be drained and so we were allowed home.
First night at home was horrible, my hubby was away on a business trip and in the middle of the night DS threw up the 600mls he had just had, all over the floor - and so I was stressed and crying as I try to make sure his tube hasn't moved into his lungs (that the nurse took such great pains to freak me out about!) and then spent an hour cleaning up him and the floor - 600mls is a lot of vomit!!!
Thankfully it has gotten heaps easier, although the first week he was really hungry for real food, what do you say??!! I feel so bad!! I think this week has been better because he is starting to feel better in himself, he has a little colour, and he has gained 2 1/2 kgs in the two weeks on EEN!!!
So, at this point in time we have 6 weeks to go and it is over Christmas!!! At least we are on summer holidays and so he doesn't have the tube for school at all. He is finding it a little hard to sleep well, I wish he was willing to change the tube to a 10, which is about half the size. But because it got stuck going in the first time he is pretty against that idea!! I am happy that the EEN has given us some breathing space between treatments. He had his mantoux test yesterday, the reading of it is tomorrow. He also has to have a bone density scan as they are concerned with the effect the malnutrition has had on his bones. They have added a PPI for his nausea, removed the allopurinol, and split his Imuran into a morning and night regime. At the moment he is hooked up to the pump for about 7 hours per day as he finds it better to sleep without being hooked up, and we tried bolus feeds but he felt too sick when the formula goes in too quickly and I didn't want any more gigantic vomits!! So thanks for being there, that's the latest, hopes this finds you all really well, and any advice on the EEN would be much appreciated!!!! xxxooo
12-16-2013, 08:30 PM   #17
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
No experience with the NG tube here but I have read on here the smaller ones seem easier on the kids.
When Jack did EEN the first couple of weeks were actually the hardest with no food and the last week. The formula kept him full enough that it wasn't hunger so much it was just the process of eating. He was allowed gum which helped as at least he had something to chew on.
Hope it does the trick and gets the inflammation under control so you can move easily to the next step.
Big Hugs
12-16-2013, 09:00 PM   #18
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
As does chewing shaved ice .
Not sure if he is allowed table sugar ( cane sugar)
DS was permitted a few tablespoons a week .
You can also make pure sugar shapes
Sugar and boiling water into silicon molds ( Christmas trees)
Or cotton candy think cotton ball size of pure sugar in a cotton candy maker
We called them snowballs


Hope the EEN continues to work and you get set up with remicade soon
12-16-2013, 10:04 PM   #19
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
My heart goes out to you!! Sounds like your son has been thru a lot. We started EEN 7 days ago also. I didn't even think about it being Christmas until we were coming home. (From being admitted). We didn't really have a choice with the EEN. We haven't been told yet we can do gum, cotton candy, or ice pops. We were just told water or gatorade. And it has to equal 20 ounces. My son gets a continuous rate of 66ml per hour 24/7. He feels hungry...I just hate that too. But when we did the volume at night we had vomiting too. I think it was just too much for him to digest. My son puts his own NG tube down...but during his really sick time he got a fear of vomiting and putting the tube down became a source of anxiety. So I think that is why he's on a slow continuous rate with leaving his tube in. His tube is 6 FR. Not sure if any of this helped. I hope so. I hope your son gets on a good track.
12-16-2013, 10:20 PM   #20
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
 
Join Date: Sep 2010
Location: Florida

My Support Groups:
I am glad to hear the visit went well. It sounds like the GI team there is really good. I hope he continues to improve quickly and he doesn't need surgery!
12-16-2013, 10:29 PM   #21
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
I had never thought of taking care of the inflammation first to avoid scar tissue. They sound like they are on top of things. We are seeing the benefits of Remicade here. I hope it goes well for you!
__________________
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
12-17-2013, 01:32 PM   #22
Willowcat05
Senior Member
 
Willowcat05's Avatar
 
Join Date: Jan 2013
Location: Glasgow, United Kingdom

My Support Groups:
My son had a size 8 tube and kept it in for the whole 8wks of EEN it helped to dampen down his inflammation before surgery and helped him to recover afterwards its hard at the start for kids but just think of the benefits .



Hemicolectomy 18/10/2013
Azathioprine failed october 2013
Ferrous sulphate
Methotrexate injections 1/11/2013
Folic acid 1/11/2013
12-17-2013, 02:25 PM   #23
polly13
Senior Member
 
polly13's Avatar
 
Join Date: Jan 2012
Location: Tipperary, Ireland

My Support Groups:
Thinking of you, hope he continues to improve.
12-17-2013, 05:06 PM   #24
imaboveitall
Senior Member
 
imaboveitall's Avatar
 
Join Date: Feb 2012
Location: Statesville, North Carolina
Violet's been on feeds via NG for years, and on a Remicade/Imuran combo since May, so I can well relate to both.

I balked at the combo therapy until she was in hospital, then succumbed. Now she is doing great on it. It is scary for sure.

A small tube (V's is an 8fr) and a slow rate on the pump may help him tremendously. When very sick, V could not go above 90cc/hr. Also elemental formula, not whole proteins, are more easily tolerated and absorbed.
__________________
VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
12-18-2013, 05:28 AM   #25
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Good grief Ams……what an awful time of it you have all had. My heart goes out to you.

I so hope the EEN puts your lad in a good place and he can then move onto treatment that will give him back the life he deserves, bless him.

Good luck!

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
12-18-2013, 06:56 PM   #26
Ams-Qld
Senior Member
 
Ams-Qld's Avatar
 
Join Date: Sep 2012
Location: Queensland, Australia
Thanks everyone!!! Really appreciate the support! Brian's Mom it sounds like we are in pretty similar predicaments
Mehita I am really glad they have done the EEN first, it does make a lot of sense to try and minimize the possibility of scarring and blockages caused by healing too fast, but I had also not heard of it before!
Imaboveitall, you guys have been through a lot! Hoping Violet is in a great place now!
We are now 2.5 weeks in, he is going really well, just drinking clear apple juice through a straw. Mind you he has been so sick the last few months he was developing lots of food aversion, so I am now hoping he actually does want to eat at the end of the EEN!!! Oh more things to think about
His mantoux came back negative (mind you they sent us to a TB clinic with active TB patients to have a test to determine if we have avoided TB!!). So his last Remi hoop is done, we just need the bone density scan. Has anyone done that before? Is it long? What did they find??
Oh, and can I ask about BM's while on EEN?? He has only been going once or twice a week, is that ok?? It doesn't really hurt much (which is a huge improvement), but I am worried that if he is slightly constipated it might tear the fissure again if it is finally healing, any thoughts?? Thanks!!!
12-18-2013, 10:33 PM   #27
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Just catching up... you have been through so much! I hope the EEN brings relief quickly!!!

Just a couple of things...

- if he is allowed gelatin (plain), you can make it with clear apple juice/drink or gatorade (but not sure if he's allowed to have these drinks?? Sorry, there are a couple of EEN threads going... not sure who's allowed what?!? ). Kind of strange when you try it - the apple juice gelatin tasted exactly like apple juice except it was 'solid'
- BMs - my son had diarrhea throughout the six weeks of EEN - no urgency or pain though. Dietitien told us that this sometimes happens, ie liquid in, liquid out. BMs went back to normal as soon as we added food back. He did have, at least, one BM each day - first thing in the morning, maybe because he had his entire EEN dose overnight??
- bone density scan - I am assuming this is the same as a Bone Mineral Density (BMD) test?? If yes, I have had these done and it is quick and easy. No prep, you lie on a table and there is a small machine (nothing like an MRE) above you. The technician positions it and you lay still for about 5 minutes while the machine takes images. You can 'quietly' hear it moving, again, nothing like an MRE. It's all done in a simple room - technician sits at a desk next to you and there's be no problem with you being in the room as well.
__________________
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
12-18-2013, 10:40 PM   #28
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Grace had worse normal than constipation on full EEN.
Add Miralax or any stool softeners (ask a doc of course)
12-19-2013, 04:00 AM   #29
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Thinking of you! Andrew still went to the toilet every day on EN, it was quite soft and an odd colour (too much info ). Hope it doesn't irritate his fissure!
12-28-2013, 07:53 PM   #30
Ams-Qld
Senior Member
 
Ams-Qld's Avatar
 
Join Date: Sep 2012
Location: Queensland, Australia
Thanks Tesscorm! We have the Bone Density scheduled for next week and that makes me feel so much better as our ds has had so many MRI/MRE's etc that he is really over it and starting to get scared of them (as he is claustrophobic at the best of times!). He is also due for a fecal cal this week and bloods next week before his clinic visit on the 13th. Really hoping all is great!
He has gained over 4 kgs now!!! His ribs are almost not sticking out!!! His poop is still funky (black sludge), but he is enjoying having a break from daily painful bm's! His skin tags are a little smaller and his fistula leakage has slowed down a bit. He finally has energy!!!! After three years he is jumping around the house!!! We went to the coast for a few days before Christmas and he went swimming and to the beach and we went bowling and he didn't even have a nap!!!!
The tube only annoys him at bedtime, he has not slept well at all for the last 4 weeks. Other than that he has been great about it, even over Christmas! He didn't sit with us for the Christmas day meals, just stayed in his room, but he was playing with his new Ipad Mini so was happy as a pig in mud! He hasn't complained about wanting to eat for several weeks now, I am actually more concerned about introducing food; him and food have not been on great terms for so long now that I hope he can eat at the end of this!
He is allowed to eat hard lollies (candy) and drink clear apple juice and natural lemonade fizzy drink (soda). He hasn't wanted the lemonade as he had a bad experience with it one bowel prep time but he has a lot of 50/50 water and clear apple juice each day. He did develop a small nodule under his chin last week but I think it is a blocked salivary gland from not chewing, (he has had one before). His Dr did not say we could have gum and he doesn't like it anyway as it has always given him the runs. So yesterday I bought some very sour hard lollies and I am hoping this does the trick. Has anyone else had this problem?? Best wishes for a happy healthy 2014, thanks for being there!!!! God bless you all
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Update - not great :(
Thread Tools


All times are GMT -5. The time now is 03:17 AM.
Copyright 2006-2017 Crohnsforum.com