# Simponi for M



## Maya142 (Mar 20, 2015)

I wanted to start a new thread since there are so few kids on Simponi. M will be starting Simponi today. It was prescribed mostly because high dose Remicade just wasn't controlling the AS - M has had many many sleepless nights because of pain in the last few months. 

Her IBD seems to be mostly under control, though she did have a week of bloody BMs a few weeks ago and has abdominal pain (LRQ) on and off. Her GI wanted to scope her before we switched but M begged because she's sick of tests (6 MRI's, 1 SBFT, 1 gastric emptying test, 1 upper endoscopy all in the last few months) so she agreed to scope her in the summer instead.

She is doing a loading dose today (2 shots) and then will do one shot every 2 weeks, which is much higher than the regular dose I believe. I think her rheumatologist plans to space them out once she's doing well.

Really hoping this will be her magic drug.


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## Farmwife (Mar 20, 2015)

I hope this works for M and she's back to herself very soon.

I know I'll be watching this thread with great interest as Grace doesn't seem to be responding to Remicade as much anymore.


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## my little penguin (Mar 20, 2015)

Really hope it works it magic for her quickly 
So she can get healthier and some much needed rest


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## FrozenGirl (Mar 20, 2015)

My infusion center for Remicade also teaches people to inject Simponi and I have heard lots of good things about it, the big on being very few side effects. That is a higher than usual dose ( once a month after loading is usual) but from people I have talked to it doesn't sting or burn going in. Are you doing the pen or the syringe? Hopefully it will be awesome for her!


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## Maya142 (Mar 20, 2015)

Pen for M (she will be going to college next fall and wanted the pen so it will be easier to do her own shots).

 I think the high dose is because she has failed Enbrel (before IBD diagnosis), Humira (twice) and Remicade (three times, including 20 mg/kg high dose Remicade). She will remain on Imuran.


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## FrozenGirl (Mar 20, 2015)

Ah, makes sense. Wow that is high dose Remicade. Hopefully this dose will work for her!


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## Sascot (Mar 20, 2015)

Really hope it works well!


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## Tesscorm (Mar 21, 2015)

Lots of wishes this works for her!  Hope her first shot went well! :ghug:


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## Maya142 (Mar 21, 2015)

Shots were not painful at all - no burning like Humira!! Now we wait...


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## Clash (Mar 21, 2015)

Glad the shots went well! I hope this is her miracle med!


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## SupportiveMom (Mar 21, 2015)

D has no complaints for Simponi. she has no side effects afterwards either. Sorry you had to switch biologics but glad to see another kid on simponi! I am hoping she can stay on it after surgery, but based on our last appointment Tuesday doc is pushing Entyvio now. We know what to expect with Simponi and is so much easier for her to do on her own. I like the fact we don't even have to ice the area beforehand, just take it and do it!


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## SupportiveMom (Mar 21, 2015)

Jennifer maybe it's time to make a thread in Treatment for golimumab/ Simponi now that more are on it?


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## Maya142 (Mar 21, 2015)

Simponi is so convenient SupportiveMom! M can definitely do it by herself in college - she really likes that. No side effects at all so far, but we weren't really expecting any.

I hope your daughter can stay on Simponi - the fact that she had some response even if just for four months is promising isn't it? Whatever they put her on, I really hope they can find something to help her :ghug:.


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## SupportiveMom (Mar 21, 2015)

I think the doc is thinking after surgery try something new to Kickstart remission. I worry addING one more drug means she's out of meds to try. I want to hear why the doc wants to switch after our surgery consult & if the surgeon agrees. Otherwise I want to stick with Simponi!


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## Maya142 (Mar 29, 2015)

M's fecal calprotectin (done before she started Simponi) came back. It was 257 - not terribly high but considering she's had one at 36, really hoping the Simponi will work for the IBD as well as for her joints.

So far no improvement, but it hasn't even been two weeks so we're just waiting...


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## SupportiveMom (Mar 29, 2015)

Is she doing Simponi with another drug? D has it with Imuran.


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## Maya142 (Mar 29, 2015)

Yes, Imuran too for M. We are trying to raise the dose but haven't been able to yet because we've been so busy dealing with her arthritis, gastroparesis and weight loss.


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## izzi'smom (Mar 30, 2015)

Just adding that izzi has been on simponi as well. We are at every three weeks with a slight improvement in crp and pain. (initial improvement after loading dose was drastic). She is also on tacrolimus.


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## kimmidwife (Apr 1, 2015)

Be interested to see how they do on Simponi. Our doctor is not a big fan of it which is why she didn't even consider it.


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## Maya142 (Apr 1, 2015)

Our GI doesn't like Cimzia at all, and it was between that and Simponi. Incidentally, her rheumatologist isn't a big fan of Cimzia either.


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## SupportiveMom (Apr 2, 2015)

I know one other kid on Simponi at SickKids hospital and he is doing very well on Simponi. He is the only person I know on the drug besides those here on the forum. He has had a resection, and ever since the drug does even better for him I am told by his mom.

To touch base on the dosage, D also takes it every other week. It is standard dosage for those with UC so I think that is why it is the same dosage for Crohn's. See the link here: http://www.simponi.com/ulcerative-colitis/about/treatment-frequency


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## Maya142 (May 21, 2015)

Just got M's iron studies back and they are weird:

Name		           Value		    Reference Range
Iron Bind.Cap.(TIBC)		*287*		    250-450 ug/dL
UIBC		                      *110 (L)  *         150-375 ug/dL
Iron, Serum		      *177 (H)  *          35-155 ug/dL
Iron Saturation		      * 62 (H)*	     15-55 %

Ferritin, Serum		 * 187(H)*	              15-150 ng/mL

She is not taking iron supplements - just a multivitamin with some iron in it. Her iron studies are generally normal (except Ferritin is high due to inflammation usually).


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## Mehita (May 21, 2015)

Does she have inflammation going on now?


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## Maya142 (May 21, 2015)

Her joints are definitely inflamed, her IBD seems mostly ok (last FC was 257).


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## Catherine (May 21, 2015)

I would be looking at getting a multi vitamin without iron.

What are her folate and B12 level?   How her haemoglobin level?


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## Maya142 (May 21, 2015)

Hemoglobin was 11.2. Folate and B12 weren't done. I think you're right Catherine, I am waiting to hear from her hematologist about it.


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## my little penguin (May 21, 2015)

Hope the hemotologist has some answers


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## Catherine (May 22, 2015)

Getting her b12 and folate up to top end of the ranges may help her hemoglobin level.  Iron won't help less she has IDA.


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## Mr chicken (May 23, 2015)

How is she doing today ?
Can you see a difference in the joints since starting simponi?


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## Maya142 (May 23, 2015)

Joints do seem better but she is also on Medrol, so I don't know if it's the Medrol or Simponi. She has had diarrhea and urgency (many accidents) for the last few weeks, so wondering if there is something IBD related going on.

MLP you need to clear your inbox - can't send you a PM until you do!


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## Mr chicken (May 23, 2015)

I have to post 10 posts since I am new 
Only get two messages 
Yeah I know very Grrr at the moment. :voodoo:

Since everything is locked out. :stinks:

Can't  do anything


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## crohnsinct (May 23, 2015)

Maya - where does her FC sit normally?  Is the 257 elevated for her?  I know T's GI isn't jumping out of his skin yet with that same number BUT he is carefully watching it and if it repeats that high I suspect we will be reassessing the situation.


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## Maya142 (May 23, 2015)

Her FC was as low as 26 (0r maybe 36, can't remember) when she was doing well on Remicade. Her Imuran dose has been increased quite recently and levels will be checked soon. I'm hoping between that and the Simponi, something will take care of the urgency and diarrhea very soon. If not, I'll ask them to repeat FC. 

Honestly, we've been so busy dealing with the gastroparesis and her AS, that her IBD has sort of gotten ignored!


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## crohnsinct (May 23, 2015)

Oh man!  Quite a juggling act you have going on there.  Hoping right along side you that the increase sorts things out quickly!


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## Mr chicken (May 23, 2015)

Same here 
DS.is at 21 for fc
Highest 237 which had GI concerned at the time 

Hope things calm down


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## Maya142 (Aug 14, 2015)

Wanted to update M's thread. M has gained nearly 20 lbs with the NJ tube. She will be getting a GJ tube soon since she can't really maintain her weight without the extra calories from formula.

The BEST news is that her FC came back 28 (<50 is normal at this lab) today!!! So Simponi is definitely doing something for her gut! I don't know if the supplemental EN has anything to do with, but she's going to stay on it for a while anyway.

Some of her joints are better but others are still pretty painful, so the AS is still a work in progress.


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## Farmwife (Aug 14, 2015)

I'm so glad for the weight gain and low fc.
Grace's gtube has been a blessing to us.
I hope it works well for her!


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## Maya142 (Aug 14, 2015)

Thanks FW. Do you remember how long it took for Grace to recover? M is quite nervous about the GJ tube.


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## Tesscorm (Aug 14, 2015)

That's great weight gain!!    And glad the FC is down!! 

I hope the GJ tube isn't a difficult transition...  Wish she didn't have to deal with this too. :ghug:


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## Farmwife (Aug 15, 2015)

If I remember correctly... which I may not.:ybiggrin:
By day 3 she was up and running,
By one month all was healed.
Our DME  supplied all her bandages and tapes.
Split gauze will be your new friend. At first we doubled the gauze around the tube so it didn't wiggle around and hurt her. As it healed we just stopped doubling.
Also remember to change the bandages frequently. The drainage can sick to bandage and skin.:ack: 
Grace did get cellutitis a month in. Make sure to get her to the doc ASAP, if this happens.

Do you know what type of button (mickey or AMT).

 Hers will be going passed the stomach, right?


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## Maya142 (Aug 15, 2015)

Yes, hers is a GJ so there will be a G port and J port (which we will use for feeds).
Glad it only took Grace a few days! That will definitely make M feel better.

We don't know what type of button yet - we have the consult with interventional radiology next week and then we'll know more.


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## pdx (Aug 17, 2015)

Thanks for the update!  It's great to hear about both the weight gain and the low FC.  Hope the consult goes well next week.


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## kimmidwife (Aug 17, 2015)

Glad to hear the news that is excellent!
Hopefully the tube transition will go easily.
Glad the simponi really seemed to be working that is excellent news!


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## awmom (Aug 18, 2015)

What good news and relief for both of you that the Simponi is working!!!  I hope the GJ procedure goes well and the healing is swift and that she has a great fall semester.


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## SupportiveMom (Aug 21, 2015)

Simponi can be such a good med. Still if I have to pick favorites that would have to be it. So glad its working! 

Looks like we are going off it. Waiting (still!) for pathology but doc wants her off biologic & she's been off it since surgery. Now what to do with 2 unopened boxes. Going to my chapter meeting next month to see who can take it. Pharmacy won't take them back, just destroy it. Lesson learned to only order what you have to!


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## Maya142 (Aug 21, 2015)

What will D be on SupportiveMom? Entyvio? Too bad you had to give up Simponi - definitely our favorite biologic too!


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## DustyKat (Aug 21, 2015)

Thanks for the update Maya.  

Fabulous to hear that the gut is responding so well! :dusty: 

Sorry to hear the AS isn’t settling as well though.  

Everything crossed that M will soon have brilliant outcomes for both, bless her. :ghug: 

Dusty. xxx


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## Mehita (Aug 26, 2015)

Curious... what specifically makes Symponi your favorite biologic?


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## Maya142 (Aug 26, 2015)

Simponi shots are not at all painful according to M. We use the pen, and she says they just don't burn like Humira does, they feel like regular shots. We've also tried the syringe and she said those hurt even less (the pens are kind of violent) but Simponi hurts so little anyway, that it is more convenient to use the pen.

For most people, Simponi is also only once a month (100mg a month is the FDA approved dose for Ulcerative Colitis). M gets 200mg per month since her AS is so bad.

No side effects, just like the other biologics  Overall, a much easier experience than Humira though both worked very well for M.


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## lchele1203 (Aug 26, 2015)

I have been on Simponi for my Crohns the last year and a half and I have not had any flares.  My GI would not prescribe it but my arthritis doctor did because it also helps with my arthritis.  I have tried Humira and that made things worse.  My veins are to bad for Remicade and I just didn't want to go that route.  So for now Simponi is working great!


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## Maya142 (Aug 26, 2015)

Update on the GJ Tube surgery:
M's GJ tube was placed on Monday. She was kept in the hospital two days and discharged today. The first day was pretty painful - never realized how much we use our stomach muscles to sit, stand up, go to the bathroom etc. IV Pain meds helped a lot.

 The drain was removed the second day and by today she was walking around more easily, though she will still need oral pain meds for a few days. 

Unfortunately, the tube retracted on its own (which we were told is very rare) and so is now in the duodenum and not the jejunum. We will go back in ten days for it to be fixed and they will see if we can switch to a button type tube.

Glad we're mostly done with this and have a way to keep M's weight up without fighting about the NJ tube.


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## pdx (Aug 26, 2015)

I was just thinking about your daughter today, wondering if she had had the tube placed.  I'm glad that the surgery is over, but sorry to hear about the pain and tube retraction.  I hope that she is feeling better really soon, and that she is feeling great about not having to use the NJ tube anymore!


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## pdx (Aug 28, 2015)

How's your daughter feeling?  I hope the pain is gone.  Is she able to use the new tube yet, or does it have to heal more first?


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## Maya142 (Aug 28, 2015)

Thanks pdx - she's doing ok. Her new tube still hurts quite a bit . They told us it takes most kids about a week but some recover faster and others slower (I think M is definitely slower!).

We have been doing feeds (at a lower rate) and so far they are going well. Mostly she is just sick of the incision pain, though because she is on pain meds 24/7 she has had a very nice break from the AS related joint pain.


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## pdx (Aug 28, 2015)

Oh, I'm sorry that she's still hurting.  I hope she feels better soon.  :ghug:


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## Tesscorm (Aug 29, 2015)

Ugh, so sorry that she's still feeling pain!!!  I hope the feeds do help her and she begins to recover more quickly!!  :ghug:


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## awmom (Aug 31, 2015)

I'm so sorry M is still having pain.  I'm thinking classes must have started for her.....will she be able to go?  I hope the feedings (even though slower for the time being) are more comfortable for her than with the GJ.  Will the fixing of the tube require a surgical procedure?  Hoping the worst is over and it's a speedy recovery from here on out!


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## Farmwife (Aug 31, 2015)

Sorry for the late reply.

How is she now? Has she been able to do the set up and feeds herself?

If she still hurts make sure the drainage is clear(ish) and no smell. We were told that those were signs that an infection was coming or there already.


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## Maya142 (Aug 31, 2015)

M is doing ok. Tube is still sore but is getting better every day. Farmwife, there is some blood but no drainage, is that normal? She does still have stitches so it's possible one broke or something.

Feeds are going ok - M keeps turning them pump off because she is sick of being hooked up - teenagers :ybatty:.

The tube is being replaced on Thursday.


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## Maya142 (Aug 31, 2015)

awmom - classes start after labor day (late this year!) and M currently wants to go to school and see if she can make it through the semester. She says she still might change her mind though.

The tube change is under sedation but is a pretty simple procedure I've been told.


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## kimmidwife (Aug 31, 2015)

Glad she is doing better. Sorry I was off for a few days and am just catching up.


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## awmom (Aug 31, 2015)

That's good that she has one more week to recuperate before trying school again.  She is a brave girl for going for it, and I so hope she succeeds, but I'm glad she is also open to postponing it if she feels the need!!  I think for N, although he gets stressed at school, it helps him keep his mind off his ills. The problem is that he doesn't always take good 
care of himself.....yup, teenagers....
Sending the best to you and your girl....I hope she is like new by weeks end!


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## Farmwife (Sep 1, 2015)

Yes Grace had some blood but it didn't last long. 
Does she have a home health care nurse? 
They are great at answering questions. Grace loved her nurse.
How is the site today? Is m doing all the feeds and cleaning herself?


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## Maya142 (Sep 1, 2015)

No home health care nurse yet, we're trying to set it up. Feeds are going ok and M is doing everything by herself for the most part. Still a little bleeding but much less than this weekend, so that's good.

M does still have stitches so I'm guessing it is possible she just ripped one and that caused the blood.


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## Farmwife (Sep 1, 2015)

Where are the stitches? Grace had two but we're removed before we left the hospital.
The switches were just to hold the tube in place for 24 hours.


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## Maya142 (Sep 1, 2015)

Same place - they're holding the tube in place. Since we're taking her in Thursday they will remove them then.


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## Clash (Sep 1, 2015)

I don't know how I keep missing this thread! What a trooper M is! I hope the appt goes well this week and she heals quickly! Kids in our state would be thrilled if school started after labor day. Most of the high schools started around the 1st of August! I hope she has a great year!


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## Farmwife (Sep 1, 2015)

No wonder she hurts. That's what hurt Grace in the hospital. I think the surgeon made them to tight. Once he took them out Grace instantly said that was better. 
I'm surprised there still in for M but it sounds like your girl has a different tube, so that's probably why.


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## Maya142 (Sep 1, 2015)

You know Farmwife, that's exactly what the surgeon said - that kids say once the stitches are gone, they feel much better. I don't know why they needed to be in so long, but regardless, they'll be gone Thursday.

 Hoping that'll make a big difference since she's still quite sore getting up, lying on her side and bending. If she's still, her tube doesn't hurt at all, it's mostly changing positions that's an issue.

Clash - can't believe schools start so early where you are!! Does school still get out in mid-June or is it earlier?


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## Clash (Sep 1, 2015)

No classes get out mid to late May depending on how each school arranges their breaks. 

It wasn't this way when I was in school but a large majority of the state has moved to this schedule.

Since our state was mostly rural for years, our school start dates fell with the end of harvest season of tobacco, cotton...yada yada yada but not anymore.


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## pdx (Sep 3, 2015)

Did your daughter get her tube changed out today?  How did everything go?


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## Maya142 (Sep 3, 2015)

She did! She was very nervous about awake for the procedure (they were going to give her sedation but she wouldn't be totally asleep like for other procedures) but her first question when she came out was "When are they going to do it, Mom?" 

I guess the sedation worked a little too well because she had no memory of any of it (which we're very glad of)!!

The tube looks great - no infection (even though we had some yellow drainage last night - yuck). She now has a low profile MicKey button which doesn't show at all under her clothes, which she loves. We can start using it tomorrow for feeds. 

She's a bit sore but not in too much pain. They told us it takes six full weeks for the tract to form so we have to be patient (not one of my strengths). 

Now all we have to do is get her ready for school in three days!


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## pdx (Sep 3, 2015)

That all sounds great.  I'm glad the sedation worked so well, and that she has the MicKey button now.  I hope that school goes really well for her!


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## Sascot (Sep 4, 2015)

Glad it all went smoothly, hope it all settles down well now. Good luck for school


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## awmom (Sep 4, 2015)

Im so glad the procedure went so well!!!!  Hoping for many happy days to come!  All the best staring back at school again.


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## my little penguin (Sep 4, 2015)

How is she doing today ?


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## Maya142 (Sep 4, 2015)

M is doing well today - she slept a LOT last night (12 hours!!) and I'm guessing that made a big difference. Tube site still looks great though it's leaking this goopy stuff. We'll try doing her feeds in the evening.

Now we have to get her ready for school in two days!


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## Greeko (Sep 4, 2015)

I know someone that is taking Simponi and it's working great for him, When I asked my GI about it he looked at me weird and said it wouldn't work and is meant more for colitis patients. Sometimes I feel these doctors are morons!!! Maybe it's time for me to move onto the 3rd GI.


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## Maya142 (Sep 4, 2015)

It is typically used for UC and I will say that my daughter is her GI's first patient on Simponi -- even though we go to a large Children's Hospital which has a big IBD center. We mostly chose Simponi because M's AS is worse than her Crohn's and neither her rheumatologist nor her GI like Cimzia.


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## kimmidwife (Sep 5, 2015)

Maya,
 Very glad to hear she is doing better! Fingers crossed for school this week to go smoothly!


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## Tesscorm (Sep 9, 2015)

Glad she's doing better!!   Hope the start to the school year went smoothly!!


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## pdx (Sep 11, 2015)

How's everything going with school and the tube?  Hope it was a good week for her.


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## Maya142 (Sep 11, 2015)

M is doing ok. She's had lots of ups and downs this week. She loves her classes which is great, but is struggling with pain and sleep. Lots of joint pain (darn rain!) and also pain around the tube. 

And to top it all off she's had trouble doing feeds either because of the painful tube site or the lines getting tangled and then the pump going off all night, so she's not even getting all the calories she needs 

We see her GI next week and I'm really glad because I'm worried the tube site might be getting infected (although she says it looks fine).


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## Pilgrim (Sep 11, 2015)

Man, that is a lot for a kid to deal with all at once. I hope the tube site gets sorted out so that she can get the sleep and calories she needs.


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## pdx (Sep 11, 2015)

That's great that she loves her classes, but the rest sounds really hard.  Hopefully she can get some rest this weekend, and I hope things get better for her soon.


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## kimmidwife (Sep 16, 2015)

I hope things get sorted out with the tube. It stinks after finally getting it that it is giving her all these issues.


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## Maya142 (Sep 16, 2015)

The tube is infected  so now she's on Keflex for 10 days and we're desperately hoping she won't get CDiff. That explains why it still hurts.


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## my little penguin (Sep 16, 2015)

Fingers toes and noses crossed for her and you


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## pdx (Sep 16, 2015)

Oh no!  Well, at least you know why it's been so painful, and hopefully after the antibiotics do their thing, the pain will be totally gone.  

We used Culturelle and Florastor and kefir when E was on antibiotics last summer, and she didn't get Cdiff.  We started the Florastor while she was still taking the antibiotics, and then started the Culturelle and kefir right when she finished the course.  We continued all for about a month after.  (She didn't like to swallow the big probiotic pills, so I just poured them out into yogurt for her.)  

Fingers crossed!


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## Maya142 (Sep 16, 2015)

Is Floraster over the counter pdx? We're using Culturelle right now, but M's GI did suggest probiotics (actually she suggested yogurt, but M is lactose intolerant and especially doesn't tolerate yogurt so that's not an option).

Also considering asking for VSL#3 though it doesn't really suit M (causes bloating).

Also doing the anti-CDiff dance  it was successful last time she was on antibiotics!


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## Tesscorm (Sep 16, 2015)

Ugh, so sorry she's had such a rough start with the tube!  I hope the abx resolve the infection and everything then runs more smoothly for her!  :ghug: :ghug:


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## pdx (Sep 16, 2015)

Yes, Florastor is over the counter.  It's saccharomyces boulardii, and we used a generic drugstore equivalent.  It's a yeast, and thus not killed by antibiotics, so it's helpful even while you're taking the antibiotics.


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## Mehita (Sep 16, 2015)

I think I read somewhere that sometimes Florastor increases yeast infections in girls/women? Does that ring any bells with anyone?


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## Maya142 (Sep 16, 2015)

Yikes, will look it up. That's all we need, one more problem! Thanks Mehita.


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## awmom (Sep 16, 2015)

Oh no!!!!  I'm so sorry M is having to deal with this!!!  N took Florastore when he was on antibiotics for about 6 months.  It is over the counter and you can probably pick it up at any pharmacy.  We ordered it online also and it was a bit cheaper.  I hope it heals fast going forward.


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## pdx (Sep 16, 2015)

I just did a quick search, and while I didn't find anything about increased yeast infections with Florastor--I think that's a different type of yeast--I did see that you have to be careful of fungal infections if you have a central line, and that S. boulardii isn't recommended for severely immunocompromised patients.  Since your daughter has a lot going on medically right now, it does sound like it's worth more research.


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## Maya142 (Sep 16, 2015)

i'm going to check with her GI, thanks everyone. I think it'll be fine - I don't think M is severely immunocompromised and it seems like a mild infection (and a GJ tube isn't as dangerous as a central line), but better safe than sorry.

I didn't find anything about yeast infections when I researched it, so glad about that!!


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## Maya142 (Sep 21, 2015)

Wanted to update - M was on antibiotics for a grand total of 4 days before they caused diarrhea. Her GI stopped them and ordered stool tests (CDiff and FC, among others). The discharge from the tube came back so now we're going to do a CT scan tomorrow.

M is completely exhausted and still is trying to make school work. The tube site is painful and her joints aren't doing so well. She absolutely LOVES her classes, so she really wants to get through the semester.


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## my little penguin (Sep 21, 2015)

Big hugs
Hope it's an easy fix 
Fingers crossed for no c diff


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## Gmama (Sep 21, 2015)

Yes! Crossing everything for no c diff!
So sorry she is going through so much:stinks:


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## pdx (Sep 22, 2015)

Ugh--so sorry that this is all happening for her right at the start of the school year.  Really hope it's not Cdiff.  :ghug:


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## Sascot (Sep 22, 2015)

Very sorry she is struggling with all this, hope things start improving soon so she can enjoy school


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## Tesscorm (Sep 22, 2015)

So sorry she's still struggling with this!   And hope no c.diff!!!  And, hoping even more that all of this can soon be behind her so she can just enjoy her classes!

I know it's not commonly done but is it possible to have abx given by injection??  S had flagyl thru IV but that was when he was inpatient.  Has anyone else ever heard of getting abx thru injections, bypassing the intestinal system?


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## pdx (Sep 22, 2015)

Tesscorm said:


> I know it's not commonly done but is it possible to have abx given by injection??  S had flagyl thru IV but that was when he was inpatient.  Has anyone else ever heard of getting abx thru injections, bypassing the intestinal system?


E has had IV antibiotics too, but unfortunately there's still the same risk of Cdiff, since both oral and IV antibiotics act systemically.  

For what it's worth, when E was taking oral antibiotics this summer, on Day 3 she had antibiotic-induced diarrhea (not Cdiff though).  That was when we started the Florastor, and her diarrhea stopped by the next day.

Hope the CT scan gives you some answers.  Let us know how everything goes today.


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## Maya142 (Sep 22, 2015)

Never heard of antibiotics by injection but knowing M, they'd cause diarrhea too. We have her on VSL#3 and she still had diarrhea with Keflex. We just did the CT scan and they're supposed to get back to us within 24 hours.

Love having her home  though she'll go back to school today.


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## my little penguin (Sep 22, 2015)

Glad the ct went well
Hope you get good results

Funny on the barium


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## crohnsinct (Sep 22, 2015)

I did IV antibiotics.  Antibiotics rip me apart and give me such bad diarrhea that the risk from taking them far outweighs the reward.  So once a very long time go, I had IV antibiotics when I was pregnant.  Don't ask me about the particulars.  It was a blur but I do know they just used the same IV line that they had in me for nutrition so maybe a PICC line?


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## Mehita (Sep 22, 2015)

For what it's worth, DS did (2) IV abx via a PICC line and it wasn't much fun. It had to be every eight hours on the nose and it took and hour to run. Thankfully he had a double port so we could run them both at the same time. It was quite disruptive to his schedule, but he didn't have any side effects like diarrhea.


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## awmom (Sep 22, 2015)

What a brave girl to be keeping up with school with all this going on!!!  I hope they are able to resolve the problem and get her on the mend soon!!


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## Maya142 (Sep 24, 2015)

M's CT was clear but she still has fever and drainage from the tube, and the site is all red, so now her GI has prescribed two antibiotics - Flagyl and Levofloxacin. Anyone know why Flagyl would be used in this situation?

CDiff and FC tests are not back yet.


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## kimmidwife (Sep 24, 2015)

Probably they prescribed flagyl and Levo. to hit two different kinds of bacteria. It is not unusual to do this in these kind of situations. We used to do double and sometimes triple antibiotics to really kill an infection and cover all the bases. Hope they work quickly and she is feeling better


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## my little penguin (Sep 24, 2015)

Fingers crossed she get relief soon 
And you get results


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## Farmwife (Sep 25, 2015)

I'm so sorry to hear this. Grace had cellutitis but it responded to treatment right away.
The drainage slated the longest, even after the infection was gone. 
Have they checked for infection in the abdominal wall? I know of a girl that had that happen.
But I suppose the doc should have looked already.
Does it hurt to hook her up????
Hugs to you and m.


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## Maya142 (Sep 25, 2015)

They have -- the CT ruled out an infection of the abdominal wall or abscess. It does hurt to hook her up - any pressure on her tube hurts, so she's not doing feeds every day. I'm really hoping the antibiotics will help in a couple of days so we can start doing them regularly again.


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## Clash (Sep 25, 2015)

I truly hope the antibiotics clear whatever is going on and she is able to bounce back quickly!


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## awmom (Sep 25, 2015)

This was not supposed to be like this!!  But it is good that the CT didn't show other issues.    I do hope the antibiotics work fast.


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## kimmidwife (Sep 26, 2015)

Maya,
So sorry to hear. It seems like both our girls can't catch a break! Praying the antibiotics kick in fast for her!!!!


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## Maya142 (Sep 26, 2015)

M is actually doing a bit better! It's only been 3 days of antibiotics and her tube site already hurts less and there is much less pus! I'm so so relieved.

Her joints are still a mess, but that's another story. 

Kimmidwife - I hope Caitlyn feels better soon, thinking of you both.


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## pdx (Sep 26, 2015)

Great news--so glad to hear it.  Hope things keep getting better every day!


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## Maya142 (Oct 7, 2015)

Wanted to update -- M has been done with antibiotics for a few days. She had an absolutely miserable time with Flagyl - nausea, vomiting, headaches and is very glad to be done.

They figured out that a suture had migrated through the abdominal wall and into the muscle and her body was treating it as a foreign body, which was what caused the infection, pain and discharge. They were able to see this on the CT scan.

Yesterday they made an incision to remove the suture. They had trouble sedating M so she was awake for many painful lidocaine injections. They said she handled it well (though she was NOT pleased because she was told she'd be asleep) and they were able to remove the suture. Hoping everything will be smooth from here on out!

She's sore but doing ok so far.


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## pdx (Oct 7, 2015)

Glad they found the migrated suture, but it sounds like the removal was quite an ordeal.  Fingers crossed that that stops all the problems, and that she won't need any more antibiotics.


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## kimmidwife (Oct 7, 2015)

Maya,
I am so sorry she had to go through all this! I really hope removing the suture does the trick and she feels better quickly! Our girls deserve a break!!!!!


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## awmom (Oct 7, 2015)

oh my goodness, that sounds rough....what a brave girl!!!  I do hope this takes care of things and she is able to sail through the rest of the semester!!


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## my little penguin (Oct 7, 2015)

Hope she feels better soon


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## Maya142 (Oct 7, 2015)

awmom - M decided to take this semester off because there was so much going on. She is going to do a pain rehab program (at Cleveland clinic) which should hopefully help with the chronic pain. She's planning to go back to school for the spring semester.


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## Tesscorm (Oct 7, 2015)

OMG, poor thing!  It all sounds horrible!  What she's had to go through with the suture and now the removal!  Sending lots of hugs and hope that all goes smoothly now for her! :ghug: :ghug:


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## awmom (Oct 7, 2015)

Awwwww, I know she must have been disappointed....but at the same time relieved.  Now she can concentrate on healing with fewer pressures. I've heard such good things about the Cleveland Clinic...I hope the program helps.  You have both gone through so much these past several weeks.....I hope this is the beginning of feeling and staying well for a LONG time!!


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## Clash (Oct 8, 2015)

Hugs! I truly hope the PRC at Cleveland is able to give her some strategies to relieve all of her pain!


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## kimmidwife (Oct 8, 2015)

Maya,
Let us know how that program goes.


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## Maya142 (Dec 7, 2015)

Wanted to update on M.

She's doing well: the pain program helped immensely with her sleep. She used to lie awake every night in pain and fall asleep at 4 am. Then she'd either get up and go to school (at 6:30 am for high school, 9 am in college) or sleep in till 12 or 1 pm if she was at home. It was very messed up and no matter what we tried, we couldn't fix it.

She started doing a full day's worth of activities despite the horrible chronic pain at the program and within two days, was tired enough that she was falling asleep by 11pm and waking up at 7 am with no issues, every single day! She was also sleeping through the night and not waking up because of the pain, every few hours.

She did a lot of PT/OT, aqua therapy, psych and learned many coping skills. She also made a lot of friends and had a great time, even though it was hard work. All the therapists - psych, group psych, PT, OT, recreational therapy, music therapy - were amazing!

She was there 3 weeks (2 inpatient) and has done well since we've been home. She has been VERY good about following her sleep schedule and doing the exercises she was given by PT/OT. She also makes sure to exercise and keep herself busy so that she's distracted from the pain and also is tired enough to fall asleep at night.

GJ tube looks good - we had some granulation tissue around it that was treated with silver nitrate and so it stopped hurting (!!!). We're also using a topical antibiotic (Bactroban) whenever the discharge begins to look like pus. 

She's eating a lot more and so she's getting fewer calories by tube. We even tried to maintain her weight without the tube for a few weeks, but she couldn't maintain her weight. She's still getting nauseous but nowhere near as bad as before (mostly).

She's doing ok on Simponi - she always seems to get worse right before the next dose is due (diarrhea, urgency, joint pain, swollen joints) but she's on such a high dose already, that I'm not sure we can do anything about it.

I know there are a few parents considering pain programs for their children, and I wanted to say that I highly recommend it!! M did not expect to have so much fun, in fact, she was dreading it. But she learned a lot and had such a great time that she tried to convince them to let her stay longer :lol:.


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## pdx (Dec 7, 2015)

Thanks for the update!  The pain program sounds so good; I'm glad it has made such a difference.  Is she going to be able to go back to school in January?


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## Maya142 (Dec 7, 2015)

Yes, she's very excited (and a bit nervous)!


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## Tesscorm (Dec 7, 2015)

That's a great update!!   I wish she didn't have to continue with pain at all but, I'm glad the program has helped her so much!!


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## kimmidwife (Dec 7, 2015)

Very glad to hear! We are definitely going to speak with the GI about the program!


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## my little penguin (Dec 7, 2015)

Good to hear
Long may it continue


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## awmom (Dec 7, 2015)

That is so-o-o-o good to hear!  I'm glad the program was helpful AND that she had some joy in the process!!!  She must feel good to have some control over the pain and her positivity and resolve to get out, exercise, continue with her studies, is really remarkable!!!


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## Clash (Dec 7, 2015)

I'm so glad that she got such good out of the program. C's sleep schedule is the worst so I can understand the feeling of triumph with that for sure!

Her grit and determination amazes me. I'm just in awe of what she works to accomplish. I hope things continue well!


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## Mehita (Dec 7, 2015)

So happy for you guys!


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## Sascot (Dec 8, 2015)

What a great update! I truly wish they had pain clinics here, there seems to be no such thing. Apart from psychologists, they don't do anything else. Well done to her for keeping up the exercises, etc.


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## SupportiveMom (Dec 13, 2015)

My D valued her pain Clinic time when they would give it. It was hard to ever get a treatment covered in the hospital and outside of it was not covered. In glad it works for M!


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