Crohn's Disease Forum » Parents of Kids with IBD » WARNING: Venting ahead. Son just threw up-Yay for the Stomach bug

01-23-2013, 07:31 PM   #1
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WARNING: Venting ahead. Son just threw up-Yay for the Stomach bug

Hello again. I have posted once since my 12 yr old son was dxed with Crohn's the end of December. I feel like I can barely keep my chin up lately. Emotionally, I am just drained. We have him on Asacol, Omeprazole, entocort, culturelle probiotics, as well as trying gf diet for a period of a couple months to see if we notice improvement. He's been on those since the first of January, and still stomach aches every day, though mostly somewhat milder. He had more severe pain two Tuesdays ago, so I called his GI doc, and they added oral pred for a course of 7 days to the mix. Then last Thursday night, he woke up in the middle of the night with severe pain, nausea, shakiness, chest tightness. Called his doc, stayed up with him and it got better, so we didn't go to the ER but I did ask the doc the next day just to do bloodwork to make sure it wasn't pancreatitis, and that was normal. WE had a good, relatively low pain weekend, then more pain over the last few days and today after lunch he has had severe pain and he threw up. So I called the GI doc again, they said to monitor him, take him to the ER if he gets worse, and they called in zofran to add to the mix. I just feel so discouraged in all this. I feel overwhelmed. We haven't got a second opinion yet, but I think now we are leaning toward driving to Cincinatti. Mainly, I am not looking for a different diagnosis at this point, because the more I read, the more I feel confident that it is most likely Crohn's, but atleast having another opinion on the best method/medication for treatment for my son would probably be helpful. I know another mom said when I described the idea that my son needed to be on immunosuppressants "for life" it sounded like I was describing a prison sentence. But that's how this feels to me right now. And the doc used that term too---when he said it, he said he would need to take it "the rest of his life." And it has been SO FRUSTRATING. I have two kids with asthma, and their diagnosis never frustrated me like this. I felt like when I talked with their doctors at the time, we had a clear diagnosis and a direction to go in that they were pretty confident would work for my kids. And we did, we made adjustments and moved on. But with this, I just feel like every day, I hear someone else suggest something different to try or read someone say why the thing that was just suggested made no difference at all for them, and it's really discouraging. It would be a heck of a lot easier to embrace these riskier drugs if I felt confident they would help him, but I don't feel that way at all. And today, with him throwing up, I feel like we are back at square, well not one, but two. In the midst of all this, my ped has become concerned because my 10 month old (different child that son with Crohn's) is also not growing well, and so we are feeding this kid to the point of throwing up to try to get her back on the charts growth wise also with a weight recheck on Monday. Meanwhile, my own stomach has been tied up in knots, but mostly I think it's just from anxiety over my son, though I have had elevated liver enzymes in the past and I am prone to migraines, so there is that question in my mind now if maybe I could have undxed Crohn's as well. I just want my son to feel well and be able to do the things he wants to do, to grow and be healthy and have a wonderful life. I know my problems on this board are like a drop of water in the ocean compared to others', but right now I just needed to vent a little. This has been the worst winter for us ever for sickness in our house, every time I start to think we can actually have friends over again or get back to a routine, someone else gets sick. Can I curl up in a ball for a while and just cry a little? Thing is, my son has been a trooper through all of this. I just wish I could take all the sickness he feels, and put it on me instead, so he wouldn't have to deal with this crud.
01-23-2013, 07:53 PM   #2
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Thing is, my son has been a trooper through all of this. I just wish I could take all the sickness he feels, and put it on me instead, so he wouldn't have to deal with this crud.

You nailed it on the head right there. There so much stronger than we are. We have to push on and fight back tears as they tell us it's going to be ok.
Every parent on here knows what you mean. We all know this horrid disease hits most kids harder but it doesn't mean we have to like it. Dusty wrote a great thread on grieving. We all have to through this grieving process for what we feel our children will lose or have to be put through. I'll try to find the thread for you.

My advice. One day at a time. Lots of hugs. Lots of smiles. Find a quite corner and cry until you need to leave and get on with life. There is a light at the end of this tunnel. It's just this tunnel is very long and you have to travel quite a distance before you start to see it.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
01-23-2013, 07:55 PM   #3
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Hey Chef...

So sorry for everything you are going through... Your story is VERY similar to ours. My son was diagnosed just a couple of years ago and the events leading up to diagnoses sounds like what you've been going through (especially the cramping... I used to think he looked like he was going into labor as the pain started slowly and far apart building up to the point they were right on top of each other and he was in agony)

He was on a very similar cocktail as your son is on. At one point there was talk of changing his meds to level 2 type drugs (instead of the pentasa). I had read of folks taking larger doses of the pentasa and asked if we could increase his intake instead of changing drugs. They did and it has worked for him (he's been on the same regiment now a couple of years), but I know of others where it didn't work and/or the severity of their illness truly required a stronger med.

I think crying is the BEST thing you can do sometimes and for me it's been a TON of praying... For your fella, anything you can do to reduce his stress I would strongly encourage... For my son it has been having him homeschooled (I don't pay for it, I don't do it, because of his illness the county pays for it and they send in teachers to handle everything including a Spanish teacher this year, as he is now a sophmore in HS).

Keep breathing Mom!!! And keep asking the questions!

Praying for you!

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Priesthood Blessings
01-23-2013, 07:57 PM   #4
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This is so hard. My son was diagnosed at 11 years old last October and there are times I felt like I couldn't make it through another week.

The time right after diagnosis was the hardest for us. It was up and down for months. Lots of medications, lots of weird side effects and food poisoning on top of that! But now my son is in remission and is only on one medication (down from 6 when he was diagnosed). It gets so much easier I promise!

I don't think you need to accept that your son will be on immune suppressants for the rest of his life. There have been amazing advances in medications for crohn's and there will continue to be. How this disease is treated will be dramatically different when our boys grow up. I have a friend who is a doctor, researcher and his wife has Crohn's and he said he believes that my son will see a cure for this disease in his lifetime. At the very least I think we will have better treatment options.

My son was diagnosed when we lived in Michigan and we moved to Cincinnati for my husband's job about 10 months after his diagnosis. It is a great hospital and it has been helpful to get a different set of eyes to look at our son. When he was first diagnosed we asked our same family Dr. friend if we should get a second opinion and he said crohn's is pretty cut and dry as far as diagnosis. The protocol for treatment is pretty cut and dry too. He said to wait until we were at a crossroads, had a decision where we didn't know which way to go or were unable to get things under control. This is a life long issue and you may need that second opinion at some point, but we decided we could wait. I was very happy with care my son got in Michigan and I am also happy with Cincy. I think there are only major differences if you have a case that needs thinking out of the box.

I am so sorry you are going through this but we are all here for you. You will get through this and better days are ahead. Just one day at a time right now. (((((Hugs)))))
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
01-23-2013, 08:00 PM   #5
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I think this is so well written. Everyone should read this. Specially parents.
01-23-2013, 08:02 PM   #6
my little penguin
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Take your mommy time- trashy novel / tv and veg
Your grieving - it takes time - seriously about a year to hit normal again.
Just take one day at a time
They will find a med that works for your kid
And when they do you get your child back
You'll learn to recognize flares as will your child
It ill be ok
As the for life thing well
He will be on those meds now until something better comes along
When my DH was little with asthma most of today's fancy meds were not around
Most meds he took as a child are now banned but he survived and takes the Easy asthma meds
Things can and do change so so the best you can today and have hope for tomorrow .

Btw if they found a good drug for my kid after a year of trying everything under the son then they can for your kiddo too.
DS - -Crohn's -Stelara -mtx
01-23-2013, 08:14 PM   #7
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I'm so sorry you're feeling so discouraged! It is overwhelming at the beginning, seeing your child in pain, not having a clear direction and, as you said, getting conflicting messages all the time! It really does get easier!!! Perhaps the best thing to try to do is accept that nothing will happen overnight. This does not mean that your son will not be feeling well soon but there may be some twists and turns but, all the while, you are still on the road to recovery!

Unfortunately, there isn't a tried and true treatment for crohns. There will be some trial and error with treatments, so you will hear many stories of what has worked or not worked for others. Learn from others but don't get discouraged - what didn't work for one may work very well for your son.

I'm not sure if I have mentioned this to you earlier but, if not, I very much encourage you to look into enteral nutrition! It is not a drug, no side effects, can be used with other treatments, has a comparable success rate at inducing remission as steroids when used 'exclusively' (meaning formula only diet, no food for a few weeks ) and will provide your son with all the necessary nutrition! It can also be used as a nutritional supplement with a regular diet. It may be the bridge your son needs while finding an appropriate drug treatment. There is info in the Treatment forum as well as a thread called Kids on EN in this forum, under Diets for kids.

Try to take one day at a time (not easy! ) and know you have lots of support and advice here!

Tess, mom to S
Diagnosed May 2011

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
01-23-2013, 09:36 PM   #8
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I remember how you're feeling all too well. I'm sure all the parents here do. I cried, screamed, denied, and cried some more--for months--when my 9-year-old son was diagnosed with Crohn's.

He is now 14 and has been through several meds, surgery, and now is doing better than he has in a really long time. Your son will get to this point too. Yes, there will be ups and downs, but you will be amazed at how strong your son will be and what he can do. You'll get there too, it just seems to take us moms a little longer!
01-23-2013, 09:57 PM   #9
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Thanks so much for the encouragement. All of your kind words and wisdom are truly a treasure. It helps alot just to realize I am not the only one to go through stuff like this.
Champsmom, we actually do homeschool. I know it's not for everyone, but I have been thankful God led us to this choice for our family. I think the past year would have been even more stressful if we hadn't been. And I appreciate any prayers, for sure. God has been very faithful to our family through trials of the last year. But sometimes on a day like today, I just get tired of fighting and want to cry a while. I know you all understand what I am talking about.
01-23-2013, 10:22 PM   #10
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((((hugs))))) I know how you are feeling. I have days where I get very discouraged as well. I hope your son gets some relief soon.
Samantha, AKA Devynn's mom

Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-23-2013, 11:48 PM   #11
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So sorry your son is having a hard time.

Just want you to know that we know what you are going through. I remember when Ryan was dx'd at 12 and I read myself into an emotional coma! Not just absorbing the dx, but also realizing that our normal would change forever and grieving for the "normal" childhood I thought he would have. It's okay to allow yourself to cry, be angry, whatever helps. As long as you can pull yourself up and get back to fighting it afterwards, I think it helps you gain some focus to get the emotion out so you can be objective in making treatment decisions.

It gets easier. You will learn more about the disease, more about the meds, and once you get a treatment going and he is starting to improve, some daylight will peek through! You'll look back at the months prior to dx and remember the faint things that were signs that something wasn't right. Remember those for the future and when they peek their nasty heads out, get bloodwork done asap so you can stay on top of things.

I know it seems overwhelming, but you can do this! We are in the same state, so if you need anything, let me know!
01-24-2013, 12:00 AM   #12
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So sorry you and your son are having to go through this. My son was diagnosed 1 year ago at the age of 10. It is a horrible feeling to watch your child in pain and have no clear path to fixing it. I cried LOTS. At times I thought it would never get better but it did, it just took longer than I wanted it to. I am happy to report that my son is now back to his normal self!

I too felt devastated that my son would need to be on immunosuppresents for the rest of his life. I sobbed uncontrollably the first time I gave him prednisone. While I wish with all my heart that I did not have to give him all this medication I have come to accept that it is the best we can do at the moment and I am grateful that there are more treatment choices now then there were 15 years ago.

it does get easier and feel free to vent on the forum anytime you like, I think we have all done it!
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
01-24-2013, 08:19 AM   #13
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Hi there and sorry you are having a hard time. So BDTD. I agree with Tesscorm...hard part is the disease and even the doc is so different patient to patient. And JMK has excellent advice about allowing yourself time to cry because you have to get the emotions out of the way.

For a pick me up I like to read the success stories here. I will try to go get a link for you.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-26-2013, 12:30 AM   #14
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Hi chefmommaof6 and

I am so very sorry to hear of all you are going through...

I can only reinforce what has already been are not alone hun.

I can well see how having other children with a chronic illness makes its so frustrating for you now, not to mention another little one with problems. You surely have a full plate. It is very early days for you Mum and what you are feeling normal, natural and just. Your boy is suffering and you feel it just as acutely as he does and very likely more. We all have the same wish, that we could take this disease away from them and make it our own.

I know you are in dark days right now but there is light at the end of tunnel Mum. As crohnsinct has suggested, have a look at the success stories. It is not hard to get a skewed view of Crohn's from the forum. It is only natural that folk come here in need and when times are good they drift away to live their lives. As to the crying, I found the best times were when everyone else was in bed or when I was in the shower. A good cry surely does help you to face the day afresh again.

In my thoughts.
Dusty. xxx
Mum of 2 kids with Crohn's.
01-26-2013, 12:38 AM   #15
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Just came by to check on you and your son. I hope things are getting better. One day at a time!
01-26-2013, 01:10 AM   #16
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Thanks all. We have had a good couple of days (me too, actually; a good cry can do wonders, it seems ), though Joseph's (my son) attention span has been shot thanks to the prednisone course he was on. Last night, he was talking at mach 5, and it hit us that it was a side effect of his meds. I do wonder now whether the throwing up was another symptom of the Crohn's, since he only threw up once and then proceeded to eat tacos for dinner that night with no issue. If it is, it's a new symptom. It's funny that you all brought up the stages of grief; I had actually been thinking about that with regard to all this (My college degree is in psychology) and yes, I can clearly see how it definitely applies in this case. I know God is not the author of evil, but I have faith also that he does indeed allow hard things into our lives sometimes for a greater purpose that we may not understand until years down the road. That doesn't make it hurt less, but it gives me hope in the midst of the suffering, to be sure. In any case, thanks so much for all the kind thoughts and words; they are meaningful to me as struggle to find our new "normal."
01-26-2013, 07:20 AM   #17
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So glad he's feeling better.

01-26-2013, 10:21 PM   #18
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Talking Mach 5, that is great. We tease my son quite often and ask him if it is possible for him not to talk for 30 seconds. He managed it barely but then had to get everything out he held in for that 30 seconds as quickly as possible

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

Husband dx Crohn's 3/1993
currently none due to liver issues

Crohn's Disease Forum » Parents of Kids with IBD » WARNING: Venting ahead. Son just threw up-Yay for the Stomach bug
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