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12-05-2012, 12:00 AM   #1
Mehita
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I HATE Crohn's

We're back.

I hate Crohn's disease.

DS is vomiting again. He just dozed off, but he's dry heaving every 30 minutes or so. I just sit here and watch for the signs that he's about to vomit again and try to wake him up before it happens. I just want to cry. And not to sound selfish, but I'm soooo tired.

To recap... dx at age 8, no problems until age 11. Then the vomiting spells started. MRE showed a 6 inch stricture in the middle intestine area. No problems anywhere else. Two rounds of prednisone about 6 months apart in one year and started Pentasa, which I don't think is doing anything for him.

Now we have an MRE scheduled for later this month, though after today, I think it will be moved up to this week. Gastro wants to see if anything has changed with the stricture, which I agree is a good idea. Lukas is protesting, but again, after today, maybe he'll change his tune.

Gastro is really pushing for 6MP, which I am still questioning. That whole deal with teen boys and 6MP still scares me. Plus his TMPT was in the intermediate level. If 6MP fails, then what? Aren't biologics bad for stricture scarring?

I've asked about surgery, but our doctor isn't in favor of it. He said he'd provide a referral to a surgeon if we really wanted one. Do we want one?? I don't know. He hasn't given a reason for not being in favor of it.

... and he just vomited again. I'm giving him one more hour before we head off to the ER. He's never had pain before with these spells, but this time he says there is some. About a 2 on a scale of 1 to 10.

Just needed to vent.
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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

Last edited by Mehita; 07-20-2013 at 11:29 PM.
12-05-2012, 12:06 AM   #2
Clash
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I don't have experience with repeated vomiting or strictures but wanted to send hugs and support your way. I'm sure someone will be by shortly that can give you their experience with your questions about biologics and strictures as well as surgery. I hope you both get some relief soon!
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C age 19
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CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
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12-05-2012, 12:18 AM   #3
Farmwife
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Does he have fevers?
Of course if he's like Grace and not wanting docs around he'll say no to anything!
Sorry no real answers. Hugs to you both.
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12-05-2012, 12:21 AM   #4
Mehita
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No fever.
12-05-2012, 12:21 AM   #5
acheallova
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My dear Mehita, hope you are able to get some rest. I do pray Lukas finds relief. Have they given him anything for his nausea and vomiting?? Weight dependant, there are a few options for him. Is he taking little sips ( about 15 minutes after vomiting) of warm fluids to stay hydrated? Electrolyte solutions/drinks are best but watered down apple juice or warm ginger water will help too. The added ginger is a natural way ( as is peppermint) to calm nausea. Room temp is better than cold as it tends not to upset the stomach more. Thoughts and prayers go out to you. - hugs-
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12-05-2012, 12:23 AM   #6
Farmwife
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Good on no fever.
Has it settled at all?
12-05-2012, 12:31 AM   #7
Mehita
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Thanks, achallova. He has a Zofran about 2 1/2 hours ago. The dr said not to give him any more until the 4 hour mark. I can't get him to drink anything right now. He's vomiting every 20 minutes or so and dozes off in between. He's so tired.

It doesn't look like it's settling, Farmwife. I actually think it's getting worse, but it's hard to get answers out of him because he keeps falling asleep. The ER gastro only seemed half interested when I called. I don't want to be given fluids and sent home... then again, I'm not sure I'm up for a night of lots of tests either.
12-05-2012, 12:34 AM   #8
acheallova
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My motto is- better safe than sorry. Depending on how long he's been at it, I'd take him in just for nothing else but piece of mind. Best wishes. Muah- hugs-
12-05-2012, 01:57 AM   #9
upsetmom
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I agree if he's getting worse take him in.....
12-05-2012, 02:07 AM   #10
Patricia56
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Sounds like a rough night. I hope things are better by now or that you have gone in to ER.

At least they should be able to stop the dry heaves and/or determine if there's a partial obstruction or something else possibly causing the vomiting. And yes get some fluids in him.

Keep us posted.

FWIW about the meds, vs. surgery vs. ?

The problem with surgery is that once you take it out that's it. No putting it back. And you have no way of knowing how much surgery he may need in the future. Plus surgery is not a magic bullet. It might fix the stricture (and it may be needed for that reason) but the disease will come back at the site of the surgery especially if he's not getting any other treatment.

Meds - so my then 10 year old son went on 6 mp and was on it for about 2 ro 2 1/2 years. Then I switched him to MTX oral. In between he also went on Humira. It took Humira to get him into solid remission. After he'd been on it for a couple years he chose to stop and stay on just MTX which has held him until this summer when he developed a small flare. That has apparently responded to increasing the dose of MTX.

I swore I would never put my son on these meds and then found that I actually had no choice if I wanted him to have any quality of life, if I wanted to preserve his health both in the short and long term, if I wanted to allow his body to grow and develop, if I wanted him to develop socially and attend school regularly.

All of those "knowns" were on one side of the scale. The other side of the scale was mostly unknowns. The tiny, tiny risk of developing cancer, the possible changes to his body that might become problems in the distant future, risk of infection and side effects.

For me it became simpler - not easy, but simpler - when I really "got" that for my child there really was no choice. That to refuse meds was to rob him of his childhood and possibly his adulthood due to the continuing damage this disease was going to do to his gut.

It may be that you are one of those families who can sustain EN for long periods of time and whose child responds really well and is able to handle staying on it for long periods. In that case, I would do that.

Otherwise, my honest opinion is you need to make peace with the meds and go forward instead of going in circles worrying at it without making a decision.

I would also say that I would choose MTX over 6-MP at this point although I'm not really sure that it's going to make that big of a difference.

All the best
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 12-05-2012 at 11:55 AM.
12-05-2012, 03:38 AM   #11
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Sorry to hear about Lukas! Is it possible to phone your GI and let him know how bad it's got? Maybe he would see Lukas instead of the oncall gastro.
I have to say (and it's only a personal opinion), that I don't seen how the med will fix a stricture. I would say it's worth getting a surgeon's opinion anyway - asap. If they operated and removed the stricture then they could keep him well on the meds afterwards. At least get the surgical referral going, it doesn't mean you have to go for the surgery. Good luck!
12-05-2012, 06:37 AM   #12
Farmwife
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How did the night go?
12-05-2012, 07:12 AM   #13
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I sure hope you both were able to get some rest last night. Lucas' story sounds a lot like my son's---he was diagnosed at 9 and didn't really have any problems until he was 13.

About a year ago he started Remicade and then was having vomiting about every other month. That went on for about 8 months. This led up to an ER visit about 4 months ago because of severe vomiting. Turns out he had a 4 cm stricture and had that removed. Surgery has made such a difference in him.

I would definitely at least have a visit with the surgeon to get their opinion.

I hope Lukas is doing better this morning.
12-05-2012, 08:41 AM   #14
Mehita
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Good morning, everyone. Thanks for the responses. The dry heaves stopped around 1:30am. I was fully dressed and ready to head for the ER. Quite by accident, both Lukas and I ended up falling asleep around 2am. I told myself I'd just close my eyes for a minute before we left... but now it's 7:30am! He's still asleep. I will wake him up in a minute and start pushing fluids. We are on our GI's short list this morning and expecting a call anytime now.

I had lots of time to think last night. I'm going to request an MRE as soon as possible so we can see what's going on and compare it to last year. My biggest question: is it inflammation or scar tissue. Secondarily, has it gotten worse. Then we'll start 6MP (since he's going to end up on it with or without surgery), but also get a surgical consult.

Humira or Remicade would likely be the next if 6MP doesn't work, correct?

Does anyone see any holes in my plan? Things I'm forgetting to consider?

Thanks...
12-05-2012, 08:50 AM   #15
imaboveitall
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Mehita, you may consider enteral feeds.
When V was diagnosed in 2008, she had such awfully impaired gastric motility she was vomiting even water.
She lost 19lbs in 7 weeks.
Formula feeds of a "broken down" version of formula will ensure he gets the nutrition he needs while waiting for the drugs to work.
Formula was V's sole tx for three years, no drugs at all.

Sadly, it was insufficient to halt disease progression BUT her nutritional status has been/is stellar as has/is growth/development.
Many kids drink the fromula but with really bad motility a feeding pump as V used/uses is best.
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12-05-2012, 08:52 AM   #16
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I'm so sorry your son is having to endure so much. I'm too new to know anything about med choices but I pray he wakes up feeling much better.
12-05-2012, 08:55 AM   #17
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Hi there, I was in the same situation as Lukas three weeks back....I was vomiting continously and had severe abdominal pain....

Is the vomiting bilious in nature? I was vomiting bile due to obstruction..
12-05-2012, 08:58 AM   #18
Mehita
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@shalinco - The vomiting, towards the end, was all bile. He's awake now and has a sore throat, yucky taste in his mouth, and still some cramping. So far two sips of Gatorade have stayed down. Wishing the doc would hurry up and call...
12-05-2012, 09:10 AM   #19
Devynnsmom
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Mehita, I'm sorry he is feeling unwell. I hope you get some answers and a good game plan soon. Its awful watching ourk kids go through this horrible disease. My daughter is going in for an MRE tomorrow.
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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
12-05-2012, 09:12 AM   #20
acheallova
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So glad something is trying to stay down. I've learned from experience that warm fluids ( room temp) cause way less discomfort and/or cramping. Hope everything goes well today. Keep us posted. Thoughts going your way! Muah- hugs-
12-05-2012, 12:06 PM   #21
Patricia56
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My son had extensive stricturing at the time he went on Humira. It wasn't clear how much was inflammation or scar tissue.

It's not easy to tell I'm told - and was shown on the films - because the appearance is nearly identical. That's one reason why they do the glucose push on the MRE I believe. It stimulates peristalsis which should help identify areas that are "fixed" and don't move much. Of course you can still get that wiith swelling due to inflammation so it's still not that helpful I think.

Anyway, what I really wanted to say was that my son's recent MRE showed ZERO strictures. I could not believe it. I nearly cried. That was the result of 2 1/2 years of treatment with Humira plus 6-MP/MTX and continuing on MTX for another 2 years beyond stopping the Humira.

If I needed proof that using the meds had been the right choice - that was it.

That said I agree that some strictures have to be removed even if they're inflammatory. Hopefully that's not the case here.

And doing EN is always a good idea in my opinion. We did 2 stints and they were both good for my son, reduced his symptoms greatly. It just wasn't enough.

Hope you've gotten in to the doc this morning.
12-05-2012, 05:15 PM   #22
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So sorry that your son is going through such a tough time. I know how exhausted you must be.

My son's first med was 6mp at age 12. It did very well for him for over 2 years. Not much in the way of side effects except hair loss. We have never had any experience with strictures, but he does vomit randomly every once in a while. GI has never found a cause for it, just calls it part of the IBD.

I like your plan.
12-05-2012, 06:49 PM   #23
my little penguin
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DS took 6-mp for about 8 months .
It did elevated his alt and ast ( liver ) so we dropped the 6-mp dose and added allopurinol.
Hope it works for your child.
For DS it was not enough.
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12-06-2012, 11:59 AM   #24
acheallova
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Your plan sounds great for a start. Way to think ahead. I do hope your doc takes everything to ask/tell him into consideration. That is an important part of therapy, getting the doc to understand what you are observing and documenting. They really have no idea, unless they too suffer from the disease. Unfortunately, a lot is trial and error for some individuals. I hope everything improves for Lukas. Muah- hugs-
12-06-2012, 12:30 PM   #25
Mehita
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I've said it before and I'll say it again... you guys are all so wonderful. While I don't really know any of you, it is very comforting to be able to ask questions and get support on this forum from people who "get it". And even at 2am my time, someone is usually up and awake Thanks!!!!

The MRE is scheduled for December 17th. Hopefully, he'll be feeling well enough by then to manage the drink (unlike last time!) and we'll get some answers. I'll take any tips and suggestions on the drinking though! We go to the U of MN Children's Hospital and have a child life person join us which is always great, but if you have ideas, I'd love to hear them.

After more research and reading, I'm over the 6MP hump. Thanks, Patricia56 and others for helping with that. If that's what we need to do next, that's what we'll do next to bring back a decent quality of life.

Again, thank you, thank you, thank you...
12-06-2012, 10:25 PM   #26
kimmidwife
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Mehita,
How is your son feeling? I didn't see this thread of yours until just now. I hope he had a better day today! They cant get him in any sooner for the MRE? I know when my daughter was having some issues in September our new doctor got her in for an MRE two days later. Usually if the GI calls directly they will get him in. If he continues to vomit I would push them to make that call. I think your plan is definitely reasonable and a good start.
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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.
12-07-2012, 03:56 AM   #27
DustyKat
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Hey Mehita...

I am so very sorry to hear of all your boy has been going through. Have things settled for him at all?

My son was older when he had a CTE so drinking the contrast wasn't an issue. The only thing I can suggest if you do think it will be a problem is if he open to the idea of an NG tube then it could be given that way. Mind you, I don't imagine anyone is open to the idea of an NG tube! but it may be worth considering to decent films.

Patricia has laid out the reasons so well for medication. It is a ghastly decision to have to make, both of my children take Imuran and as much as I hate the thought of it it has been kind to them and assisted them to maintain full and healthy lives. The old saying about better the devil you know than the one you don't really suits this disease well. Crohn's is the devil we don't know, it is often silent, unpredictable and unforgiving but at least with the medication we know what may happen and we know what to look for and we know we can track it. I have been a companion to both of those devils and I will take the devil in the form of meds any day.

Mum, you truly are doing wonderfully well for your lad.

Dusty. xxx
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12-13-2012, 02:15 AM   #28
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How is lukas doing nw?
12-13-2012, 08:17 AM   #29
Mehita
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Thanks for asking, shalinico. He's "managing". Two nights ago he had a pretty tough stomach ache... rated it it a four on the 1-10 scale, which is high for him. He continues to show classic stricture symptoms. We're just taking things day by day (even hour by hour some days!) and hoping to get to the MRE on Monday.

Unfortunately, all his labs came back "normal" earlier this week. No inflammation.
12-13-2012, 09:15 AM   #30
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Mehita,

Agreed, Crohn's Sucks.

Don't have a bunch of advice on what you might do for treatment, try to listen to your child's and his body, pay attention to his reaction to any new meds. And be prepared to stand up and make suggestions when you think the Doc's are going in the wrong direction. It is just a tough situation to be in, my heart goes out to you.

As for the vomiting from the blockage. That I know a bit about. Make sure to get him on a clear liquid diet after this event. Just like the hospital does, he need broth (I just use bullion), jello, popsicles, Gatorade, and probably some pediasure. He needs to be kept hydrated and you need to go easy on the restrictive area for a few days. No apples, broccoli, onions, corn, etc. Just let it cool down for a while.

Can you equate any food he ate to his reaction? Does he have a certain spot in his abdomen that is sore get sore, and does he notice it before the vomiting comes on? I am with the Doctor, avoid surgery whenever possible.

Normally, for me, the hole episode last about 15 to 19 hours. That is from the moment I feel the pain in my abdomen, and realize I am not going to pass, to the time I finally get things to pass the stricture. For me I know it is over when my ostomy bag start to fill up again. For him it may be having a bowl movement. But he probably has it going both ways. He will know, the pain will subside and he will be able to rest. If it were to ever go past 24 hrs. I would go to the ER. I am sorry it is such a helpless situation for you, but you been hung over before, or not, but this experience is something you can do little about. It rips my wife up everytime it happens to me, I have kinda learned to get through it, but it sucks just the same. Pain killers help some, and it seems that the acid blockers work a little as well. But, it just has to run it course.

Hope Lukas starts feeling better soon.

Peace and love.
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