Sores on bottom?

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AZMOM

AZMOM

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At diagnosis, Claire had quite a few sores on her little hiney. They weren't full blown boils, she's only had one of those ever and it was when she was 3. But they were more significant and more painful than a simple pimple or something. We treated them with antibiotic ointment in the hospital and they went away. I was so ensconced in learning about Crohn's, I didn't give them much thought. She had so much going on with the bleeding, fevers and mouth sores, I just assumed it was part of the package. Ugh.

A couple of times over the years, she'll have a couple reappear and then fade. Now that we've had this rough patch, she has several in different stages - probably 5-6 on the lower part of her bottom right now. And, today one on her outer thigh about two inches below her hip bone that is particularly angry looking.

I have started putting the prescribed ointment back on them (got a new script from a friend that's a nurse prac) but I don't like not knowing exactly what it is. She doesn't sit around in wet pants, it's not summer, it's not fungal, I make sure she's dried well after showering, the towels are clean, I've thrown out and replaced her shower scrubby a zillion times, I just don't get it......

Anyone else's kiddos have these? Do you have a name for it? Have you used ointment? Do they come and go? Do they coincide with flares?

We have an appt next Thursday and I'm hoping enough of them are around for the doc to see. But I don't feel comfortable not putting something on them when she's uncomfortable AND there is no way in God's green acre she is letting me take a pic of her bum. I may try for the one on her leg tomorrow.....

J.
 
Hi Julie. I've had a lot of problems with boils the drain and turn into ulcers. I'm told I'm prone to this because of crohns. My GI referred me to a dermatologist. He put me on dapsone (it treats inflamation in the skin and hair folicles). I don't know if it's the same for your daughter but I think it's worth mentioning to the GI and possibly a refferal to a dermatologist. Hope you find answers soon.
 
Thanks DJW. Of all the crazy things we've talked about with him, I don't think this one has come up since we've been with this doc. I think it is worth talking about even though she will be furious. :ymad:

J.
 
I'm not sure if my 9 yo son has the same issue as your daughter, but it sounds similar. Sometimes he has more, sometimes less of these little raised, red bumps, but they never really go away. I've just chalked it up to one of those Crohn's things. Sometimes I slather his bottom in zinc oxide cream and that helps a bit. He is in remission and it doesn't seem to be related to a flare in my son's case.
 
Dusty - Never as bad as the official boil when she was little. There is a little pus drained from the one on her hip today and now it looks darker red like healing. Some of them though, leave a little discoloration and they've been known to reappear almost exactly where they started.

The more I read last night - the more I started freaking myself out!

J.
 
What are you reading that's freaking you out? I was going to suggest that they might be connected to the enema treatments but you said they started before dx?? :ghug:
 
I would take a picture of the one on her hip/thigh if she'll let you. In our experience, things like this tend to disappear right before you get to see the doctor:ybatty:
 
Are you thinking EN, J? :ghug:

I was wondering if there was discharge if you could pick up a wound swab and swab it.

Dusty. xxx
 
Take a picture regardless of her being angry. A dermatologist will likely be able to determine what it is. Just tell her a quick picture is way less humiliating than dropping her drawers in person.....
 
I don't think it looks anything like a systemic JIA rash although if I've learned one thing, Farmwife, it's NEVER say NEVER.

Tesscorm, she the most prolific outbreak of them at the time of diagnosis. I know she always has more when she's more symptomatic. I never really thought much of it until lately. I feel like a terrible mom! She started breaking out with them again about the time we had the big joint flare, followed by a re-emergence of crohn's symptoms.

DustyKat, I'm not thinking EN based on the photos I've looked at. It looks a little like some of the pictures I've seen of staph, specifically MRSA, although the bumps are scattered. A swab might be a good idea.

Then, late at night, I started reading too much on the University of Google and found that Crohn's can also be linked to Hidradenitis suppurtiva. I can't put my mouse on the pictures at the moment but one looked quite similar.

Now when you look that one up, don't get too alarmed. She doesn't have nearly as many as some of these pictures are on the internet!!!!! If she did, I'd be running - not walking - back to the doc!!!!

Maya142 - you are exactly right!! I'm going to try tomorrow.

I'm hoping that she will feel up to the shopping spree this weekend - if she does, I'll post an obnoxious picture.

Thanks for listening.......J.
 
My suggest is the picture need to be done before the shopping spree!!

Any chance it is thrush?
 
blackli you are right! She's just super crazy hypersensitive after this last enemapalooza. Bless her heart. I suspect I'm going to have to talk her into it in the morning.

The hospital where I work is expecting Joint Comission surveyors at any moment. I've been at work way too much this week to be a good mom! Now I'm obsessing, not that it will change a single thing..

I'm glad we have an appointment next Thursday anyway.

J.
 
Catherine - That's a good question.... I don't think so.....

Poor doc, yall better warn him to set aside some extra time.

;-)
 
Definitely worth getting the swab done. When my son was having bottom issues (more of a horrible rash) the IBD nurse came round to do a swab. At least then you can tailor the cream that would more likely help. Hope it gets sorted soon
 
Any chance it is molluscum contagiosum? Both of my girls have had it and it primarily affected their legs and bottom. My youngest seemed to have a particularly rough time with it as hers became infected. The area around the bumps would become very inflamed (red and swollen) and then the sores would start to ooze blood and pus. The Pedi put her on an oral antibiotic and some sort of cream but neither helped much. The virus (and infection) basically needed to run its course.
 
DanceMom - I'll have to look at some pictures of that one. Did your child's coincide with crohns' activity?
 
Molluscum Contagiosum is a virus. They look like flesh colored warts unless they become infected. Petechiae are not raised, they are actually under the skin. If you think she has petechiae that would warrant a doctor's visit asap.
 
Dance Mom - I think it is a better guess. None of them are flesh colored. They do look almost underneath the skin until they start to erupt (for lack of a better word) and look so angry. The worst one she has right now shows no sign of stopping or draining. it's about the size of my pinky fingernail??? She just took a bath and has at least 3 more starting.

The 3 more go along with her weird complaints - stomach hurt today, some pinky swelling in the hand that's had the arthritis issues.

Trying not to have a full on freak out.

We see both Rheumatologist and GI Thursday or I'd be calling for the places on her butt alone.

Think I should warn them by email??? I guess it wouldn't hurt.

J.
 
I think giving them a heads up is a great idea, hopefully they will be pro active and have some useful suggestions. Although, I am guessing that you have done way more foot work and will want to shoot down lots of the probable diagnosis.

Do you find that we have all become our own worst enemy?, we have had to become advocates for our children and have educated our selves in IBD. I find myself dancing around the GI, hoping not to alienate ourselves and saying how I happened to look something up...and what do you think ? Possibly aggravated by having to leave the country to see another Dr. I Hope you get open minded ideas for her sore bottom and it's sorted out quickly.
 
So far - the doc and I are fine. ;). We've had moments of bilateral irritation though. Lol. I told him from the beginning we needed a partner and that I want to be able to tell him what we are thinking, Etc etc.

But to answer your question YES sometimes we are our own worst enemies and the University of Google doesn't help. Lol

I'll let you all know if we all come out unscathed tomorrow. My bet's on him wanting Derm to look.

J.
 
Short version of visit
- GI doc thinks sores may be staph or even MRSA - talking with ID colleagues on whether we should change topical antibiotics (we have been using mupirocin and bacitracin). He'd rather avoid oral. Thinks that maybe the additional steroid from the enemas gave the staph a chance to have a party.
- arthritis in her hand is still active but better than it was - for now, Rheum and I agree that she can decide if she needs the Mobic and will just use sparingly. If she has any other procedure that requires anesthesia, he'll inject it with local steroid in the joints that hurt. We don't want to put her through all that for a couple of fingers that she is coping well with right now. We see everyone in July again but are supposed to call if this isn't working for her.
- she's been on uceris too long and has systemic side effects including the halting of her growth (which is the one we are all worrrying about). So (deep breath), we are going to do EN for 4 months and wean the Uceris. 2 months where the EN is 90% of her calories and 2 months at 50% and then see where we are at
- while we are doing the EN, he's starting with the insurance company on Stelara approval. He said he has tried, and failed, with one other insurance company to gain approval.
- almost forgot to mention.....the mouth sores are back

So, DustyKat & Maya142, here we go. We are scheduled for dietician next Thursday morning so I'm guessing we will officially start the week after????

If one of y'all would like to go ahead and threaten my insurance to approve the Stelara ahead of time, it could save them the wrath of another crazed Crohn's Mom.

Thanks for listening.

J.
 
Glad you got the "bottom" of the sores .
DS's go was worried about staph causing the mouth ulcers and other rashes on him since we use the same creams on all cuts etc..,
But have yet to get a biopsy since I haven't figured out the pattern yet.

Sorry about the EEN - that stinks ...
Good luck with the insurance .
 
Great to hear that he's going to try and get Stelara approved! I'll keep my fingers crossed for you!

We'll be talking to our rheumatologist tomorrow about trying Stelara but I have a feeling that she will want us to try other options first that'll be easier to get approved.

I think it's great that she's agreed to EN (but sorry that she has to do it). I wish I could convince M to try it. Will she be drinking it or using an NG tube?

Keep us updated on the Stelara, sending lots of luck that your insurance company doesn't fight it! Hope your girl starts feeling better soon on the EN:ghug:
 
NG tube and nighttime pump is the plan. I showed her pictures tonight.

Oh yes, I'll let you all know about the Stelara.

J.
 
Keep us posted. We did the EN and then EEN for quite some time. I thought doing the NG tube would be hard... but yet again my crohns kid surprised me!! Your Claire is a tough cookie and she'll also make it look easy!! :) There is lots of good advice on here and tricks to help. I really relied on them!! I have a thread somewhere "EN at night".. or something like that.
 
I figured it was some sort of infection. Did they swab an area or drain it and send it to the lab? I would think MRSA would need to be treated fairly aggressively. My husband had it a few months back and had a terrible time getting rid of it. I was shocked they didn't test my daughter's sores (hubby took her to the Pedi or I would have demanded it) and if they had maybe they could have given us some medications that actually helped! For us we had to let "time heal all wounds!" lol
 
DanceMom - No swab. He was going to talk to ID. Has us alternating bacitracin and mupirocin until he calls back.

Good news! Insurance approved Stelara!!!!!!! Ironically it was so fast we aren't ready yet. Her doc wants to have one more conversation with Immunology, her Neuro and the folks at Stelara before she starts. He told me we will talk next week and to proceed with the EN. We are down there with dietician Thursday morning anyway so if I haven't heard from him by then, I can stalk the clinic. This Acute Transverse Myelitis has made everyone gun shy - so that's the issue he wants to go through one more time as we proceed.

I'm looking forward to talking to him. Looks like the Stelara is at home like most of the other sub-q/im injections You do the first injection, a second one 4 weeks later and then quarterly.

Praying this, combined with the EN, is a silver bullet - even a temporary one!!! SHE DESERVES IT (as do all our kiddos).

J.
 
I'm tagging vtfamily her son Gus has had great success so far on Stelara.

I'm glad things are moving along.

EEN is looking like a way of life around here. We were hoping to end it today but since her GI issues and arthritis are flaring she'll be on it for awhile longer.

Do you know what formula and pump she's getting?
 
Try to make sure its a brand she is willing to drink at least small amounts orally.
This can help if she is out and about and hungry.
Also in Tubey emergencies.
Good luck
 
Congrats on getting the Stelara approved!!! I am a little disappointed though as I was going to offer up my services. :yfrown: :lol:

As to starting the EN I think it would depend on how organised they are. They may do a... lets get this thing going/no time like the present…type routine which isn’t a bad thing but if that is the case unless you have full support over a weekend I would request the start up be held off to the Monday.

Sending you mega loads of love and luck that EN works magically for her J, bless her. :heart:

In my thoughts. :ghug:

Dusty. xxx
 
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Here's Claire with her girlfriends last night (and brother less than thrilled to have to go to dinner with them). Claire got to pick where we went....this was a belated bday sleepover. Anyway what broke my heart was a good time was had by all but Claire. She couldn't eat because her mouth hurt too badly from the sores. And, she was the first to bed.

Upside is these silly girls are the only 3 friends that know sometimes Claire doesn't feel good and that she takes a lot of pills. They all just rolled with it and kept on. :)

Oh and I'm pretty sure they toilet papered big brothers room at some point while he was occupied.

J.
 
MEGA hugs for Claire and you J! :ghug: Bless Claire’s heart and how precious to be surrounded by understanding friends. :)

Love the pic and so fab to see BB get into the spirit of things! :wink: :lol:

Dusty. :Karl:
 
Lol, that's exactly how my brother looked in every picture of our childhood.:rof:

I'm glad Claire was able to be surrounded by friends:ghug: but sorry for the pain.:(
 
Your kids are so cute! I wish things would get better for Claire!

I have a question on the mouth sores.. Brian has 2 ulcers and the start of a third over the past 2 weeks. first time to ever to have an ulcer. Wierd thing,,, I also have had one. Hurts like crazy. My jaw is even a little swollen. So my question, Do you think an ulcer is always a result of crohns. I obviously don't have crohns. Its on my husband's side. I jabbed myself with my toothbrush... and I've been not getting enough sleep lately. Brian has been not getting the sleep he needs either. I'm a little worried we are now in the mouth ulcer world too... but then I remember... I have one too. Could we both just have a virus of some sort?
 
She looks adorable (as does your son)! Give your son another couple of years and he'll be more than happy going out with Claire and a bunch of her girlfriends! ;)

But, sorry she wasn't able to enjoy the dinner as much as others. :(

If you have any questions re EN, let me know as well... :ghug:
 
Thanks Tess. I'm sure I will!!! I'll be glad to meet the dietician this week and figure out what we are doing exactly.

J.
 
Love the picture! Glad C was able to hang out with her friends.
I hope the EEN kicks in soon and you can start Stelara sooner rather than later!
 
I agree about the causes aside from Crohn’s but also something else to keep in mind is Brian’s B group vitamin levels, particularly now that he has an ileostomy, as deficiencies in these areas can cause mouth ulcers.

Hope they have a simple cause Kathy and are soon gone! :ghug:

Dusty. xxx
 
Well it's not a crisis but I cried today anyway. I think I'm obsessing!

Anyway, talked to GI office who told me that AFTER the deitician, the company was coming with the pump, we'll pracitice the ng tube, etc, etc, etc. It was starting to sound like a LONG appt. When I asked, they said dietician at 830, pump people at 10 and probably wrap at 1130.

Well......Miss Thing has the 5th grade promotion ceremony at 1pm that day. We are roughly an hour and fifteen from the hospital. You start doing the math and it doesn't add up.

So, now we are rescheduled for the Tuesday after Memorial Day. Why did a four day push back make me cry? Who the hell knows? It's minor really......but the unexpected tears made me realize I'm worried.

On another note, anyone ever considered Juice Plus supplements????

Hugs,

J.
 
My cousin talked to me about Juice Plus. It was when things were really bad... and TPN, etc. So I never really considered it. I'd like to know if anyone has had experience also.

Julie, It is overwhelming for sure. (as you know). My mother in law always tells me, 'Tears are theraputic sometimes'. I think it's good you rescheduled. The promotion ceremony is important! :)
 
AZMOM, I'm not one to cry much, but I had a good one myself on Sunday afternoon. We've all been there! I attributed my bawling session to hormones, but I'm sure it has to do with my son's Crohn's too. I recently had a conversation with my mother, who makes it her job to tell me of every scary thing in the news, which this time included MRSA and a measles outbreak. I'm sure that didn't help either.

Brian's Mom, my son only had mouth ulcers with his flare and they looked similar to canker sores, but I can get weird lumps on the roof of my mouth if I'm sick with a bad flu. You can't really see them, I can just feel them with my tongue. My GP said it was to do with lymph nodes, your body fighting off an illness, or something like that. Maybe it could have to do with a vit deficiency or something?
 
Aww, J, not weird, just overwhelmed, tired, frustrated, and on and on and on... The promotion is more important!! I'm glad you postponed - a few days more or less won't make a difference!

When you're feeling overwhelmed (or things are moving in that direction :)), try writing down what needs to be done/priorities - a list helps organize me but, somehow, also seems to take away some of the 'emotion' as I'm just working my way down my list... :ghug:
 
Hi friends - the promotion ceremony went without a hitch - Claire won the Art award for the whole 5th grade. Proud Mom!

Talked to her doc today. All the folks on his "to call" list are in agreement that she is at no worse risk for side effects than the average joe. So the Stelara is a go.

The only small bump in the road is that they have decided on a different dosing schedule because of her height/weight/disease vs. the standard dosing for adult. So the plan is beginning 45 mg dose, at week 4 45mg dose, at week 8 135mg dose (not a typo), at week 12 45mg dose and then 45mg every 8 weeks afterwards. But all this means we can't pick up the "typical" preloaded prescription. He's working with the pharmacy there at the Children's Hospital to get it straight.

During our conversation, we decided that even though it's a home med, we are going to take a day trip down and have the first dose in clinic. He said, "You're a nurse, right?" I was like, "NO!!!!!" He said, "Oh well you speak medical so well" I told him 20 years in hospital administration can teach you just enough to be dangerous. That, and running the doc/hosp route with this sweet girl since she was 3. :rof: So, we agreed on a road trip.

We are still planning to start EN on Tuesday night if the teaching goes well that morning and we have everything we need. Hopefully the Stelara soon after! It would be nice if it could ALL happen Tuesday but I'm sure that won't work that way - it would be too easy.

Doc says the first drug to try and get rid of is the Uceris. But we have to be one month into the EN before we start that.

Doing a lot of praying around here these days.....this has to work!

J.

PS Labs were mediocre at best. ESD & CRP (for FIRST time ever on CRP) elevated, a little anemia, iron binding capacity very low, Vit D fine ironically, etc, etc, etc.
 
Woohoo C for winning the art award!!!!
So glad the sterlera is starting soon.
We gave DS all first doses of meds that were injectable at the hospital per his Gi.
The nurse however was a little panic 'd at the time since the GI wanted DS there in case of a reaction- nurse thought I needed to learn his to inject a sub q shot - Umm no ...
I was of course told that she couldn't do any more AT THE hospital then I could do at home ...
I of course had the epi pens in my purse - and knew DS 'a allergist was down the hall but I didn't tell the nurse that ...( :)

Hope your training goes smooth and the nursing staff is informed
 
Very interesting about the dosing! We just met with a rheumatologist who also does research and he said (for M, who is 88lbs) he would give her 45mg of Stelara every 12 weeks (after the loading dose which is 45mg at week 0 and 45mg at week 4). If the 45mg did not help enough he would try 90mg every 12 weeks.

There was no mention of shots every 8 weeks or a 135mg (!!) dose. I guess because it would be for AS and not Crohn's?

Hope everything goes well with the injection and EN!
 
M - I think you are exactly right. Our girls' weights are similar. He said because she's not an adult (I shouldn't have said weight!!!) and because she is "special". Lol. Do you think he meant her immune system is as stubborn as she is!?!?!?

I'm nervous!

J.
 
Wow! Mega congratulations for such an amazing achievement Claire! :medal1: And so happy for you J! :dusty:

Sending loads of luck, love and warm wishes that all goes well with the road trip, EN and Stelara. :goodluck:

In my thoughts J and so proud of Claire! :kiss:

Dusty. xxx
 
M wants to know if the Stelara shot hurts. Keep us updated!!
I think the high dose in the middle may be due to the fact that it takes Stelara longer to kick in (we were told 6 months versus the 3 months for Anti-TNFs).
Good luck :goodluck:!!
 
Congrats on the Art Award C, that is fantastic.
Hope all goes well with the stelara and EN and she is feeling wonderful soon
 
Well I need a new shirt that says, "I SURVIVED MY DAUGHTER'S NG TUBE INSERTION CLASS". :ybatty: The RN did it first. Claire did great but was mad as hell. RN said best ever. Gave her a break - listened to her talk about how she would take steroids forever and do enemas because she was "never doing that again". Talked her off the ledge and then it was my turn. I can't say I like it but hell, I'm the daughter of an old nurse and a veterinarian - I can put a tube anywhere when I'm told to.

So, we are using Vital 1.5. Anyone done that one? We are starting at 50ml per hour x 12 hours. Daily or every other day increase by 10ml until we are at 100ml per hour x 12 hours. Her daily intake is supposed to be 1200ml Then try to increase rate to 120ml per hour so it's a 10 hr treatment.

250 calories food per day for the snack (EN overnight).

Waiting for the damn pump people to deliver all our goods right now.

Stay tuned......

J.
 
Well done J! :thumleft:

And Claire, bless her. :heart: And you too J by the sounds of it! :eek2:

I hope all goes well hun and it works wonderfully well. :ghug:

:goodluck:

Dusty. xxx
 
:eek2:Oh boy, right now I'm happy I'm not the pump people.:lol:


The whole n-g tube memory still haunts me. The nurse was amazing but poor Grace was so traumatized by it all. I felt so faint for the rest of the day.:(
Still it was the best for her and have never regretted it.:hug:

Do you know what style pump?
Are you having a home healthcare nurse come over every couple weeks?
 
Hope she gets used to it soon! Glad you got a good nurse, it makes all the difference!
M also says that she wants to be on steroids forever:lol:
 
I called. Courier arriving between 8p and 10p tonight. No home health unless we aren't comfortable, Farmwife.

Can't remember the pump brand. But walgreens infusion providing it.

J.
 
:cry: Tonight was a big ----ing disaster. I couldn't get the tube in like we did in the office. She threw up all over me and her carpet. Lots of tears. Lots of drama. I was being a drill sargeant (unsuccesfully), bribed (unsuccesfully), threatened consequences (unsuccessfully). She will have to add tonight to the list of issues to work out in therapy. All of her childhood trauma comes from her mother trying to help.

I could cry. Actually I have cried. A lot. And fought with the husband - like that helps. We are all just frustrated I think.

What a mess. We will try again tomorrow I guess and then if we make no progress, we will talk to Dr. Thursday when we go for the Stelara injection.

J.
 
I'm so sorry tonight went so rough. I so well remember the frustration and worry the first few nights C and I were trying to get the tube in on our on. I thinlbthe first night we tried consistently for over and hour then off and on for about 4 hours.

It went this way until the parents here encouraged us to go with an ng tube with stylet or guide wire.

I hope things go better tomorrow. HUGS!
 
Clash - They told us to take the wire out before we put it in???? Should we have put the tube in first??????????????

J.
 
J- Sorry to hear things didn't go well with the NG tube placement. Did you get any more info today? Are you inserting in daily? Hope things are going better since your last update.
 
Well here it is 1:30ish am. and I was happening for a good update.:(




Can you call the home health care nurse to come out a few times in the evening and insert it until Clare realizes it can be done?
 
Yes, when using tube with stylet you slip the tube in then pull the stylet out. The stylet gives the tube some rigidity for guiding.

But maybe you guys are using a different type, I'll tag Tesscorm she is one of the ones that helped me.
 
Poor Claire and poor you! :ghug: I wish it had gone easier last night! :ghug: :ghug:

S's also had a guidewire and the wire was to stay in while inserting the tube, once in position, pull out the guidewire. S had forgotten to insert the wire once and was having a really tough time trying to get the tube in until he noticed the guidewire on the counter - made all the difference!

Also, one nostril may work more easily than the other. S always had a tough time when he tried on the right side, pretty much used only left side for two years (and he had no problem using the same side all the time).

Make sure she's drinking water (through a straw) while trying to 'swallow' tube. Did you get a gel to make the insertion easier? S used it at the beginning to help (he would coat an inch or so of the tube before inserting)... there are also gels that numb (S didn't use this, so not sure how much it helps??).

Also remember reading here recently to tilt head down a bit to open up throat a bit (and tilting back will close off space - maybe she was looking up at you??)...

On the Kids on EN thread, I posted a link to a girl demonstrating the insertion (post #3 on the thread) - maybe it would help Claire to do it along with the girl demonstrating.

http://www.crohnsforum.com/showthread.php?t=36345

Hope tonight goes a bit easier...
 
J- Use the guide wire... once in then you can pull it out. Also, wouldn't it work better if she guided it herself? My son liked to be in control of it... He knew when to stop and take a little break... he knew when it hurt and was going the wrong way. He knew when to take a sip and swallow so he wouldn't gag and vomit. Try letting her guide it. And without the wire its like a cooked spaghetti noodle. I've tried it on my self to see how it feels. Also, My son did a terrible job if looking in the mirror. He had to just look straight ahead. Chin straight out... not looking up or down. He also had a side that worked the best for him. Good luck tonight. I have a video I took of Brian putting it in.... I wonder if I could get it to you somehow. I don't really want it on youtube
 
Short update:

Best news is that on third attempt we got tube in without drama tonight. She is over there with the Vital running right now. Thank God!

Worst news is that after frantically messaging DustyKat and a sleepless night (Thanks Dusty :) - glad I caught you awake on the other side of the world) - I took Claire to the ER just after 5 this morning. She had terrible pain in her upper thigh/leg. As in screaming and crying and unable to sleep. As in could hardly walk at all.

Spent about 6 hours in ER at "my" hospital. Doc basically determined it was actually her hip generating her pain. The labs were comparable to 2 weeks ago. Toradol didn't help at all. Tylenol with codeine did seem to help. Once things were calmed down, we trekked the hour and half to the Children's Hospital were the docs were. Rheum wanted to be sure the hip wasn't septic arthritis.

The conclusion (at least for the moment) is that it is a bad flare related to her Crohn's. He may be the only one nearly as anxious as we are to get the Stelara started (that's tomorrow). He gave Claire an ng tube peptalk (we texted him a photo of our success tonight). We are starting the mobic back and he gave us enough tylenol with codeine to get us through the week. We are supposed to call if she worsens and check in with him in 7 days no matter what.

Poor baby quite literally can't walk more than about 10/15 yards without crying. What a mess. :ymad:

On a happy note, the tube is in, the girl is getting nutrition, the pain meds work as long as she stays relatively still........ This Momma is tired! I'll try to give a Stelara update tomorrow if there's anything to report other than "we did it".

J.
 
Oh J so sorry to hear Claire is feeling so awful. We've been there with the hip pain - it's definitely miserable. Did they give her crutches? Or Tramadol for pain (worked better than Tylenol with codeine for M)?
Hope the EEN does its job and Stelara works soon:ghug:
 
Maya - We didn't even talk crutches. I think everyone is hopeful that this will be a few days like the "bad thumb". If it isn't, we are going to have to come up with something. I can't haul her everywhere when she starts to crumble. Especially because she can't do piggyback or wrap her legs in anyway due to the pain.

I guess if things don't improve early next week I need to ask!
 
I ended up barrowing a wheelchair for Grace, when her legs and arms were at their worst.
At least I was able to save wear and tear on my back. Most DME's will rent them out (insurance pays for this). Just an idea

Her Rheumy never wanted Grace on crutches because of her shoulder having arthritis in it. We also were thinking walker.

I'm glad your home and hope she improves soon.
 
Sorry you both had such a rough night. Sending lots of hope and wishes that all goes well with Stelara and it brings her some very quick relief! :ghug:
 
Sorry you are having such a hard time. Glad the tube went in a bit easier. Hope the thigh pain doesn't last too long!
 
Oh I am so sorry Julie! For it to hurt that bad while trying to sleep it must be really awful for her. And scary. I'm praying for you both that some relief comes soon.
 
Long story short I'm mad at the GI office. The trip was pointless and they said the insurance hadn't approved the Stelara. I knew they were wrong. Called insurance who said they'd already approved a year and stayed on phone while I got them to send nurse back out. Then come to find out the insurance had no record of them making the inquiry. I got mad (husband even madder) and asked them to transfer rx back to outpatient pharmacy at my hospital. We raced back home and got it before the pharmacy closed and administered it at home. Trip is just over an hour each way and after three consecutive days of heading down there, I was aggravated.

I'm happy to report that monitoring was clearly not necessary and Claire hasn't had a reaction.

I'm sad to report that now in addition to the right knew and right hip, her left shoulder is the worst of the three. Maya that knocks out the crutches. She's limping but is more mobile today than yesterday.

Hoping for a good nights' sleep for all of us. Hugs,

J.
 
Glad you got the drugs.
Sorry you had such an ordeal running to get them.
I think it unfortunately happens like that lot and people give up.
Hope it kicks in gear really soon
 
Sorry to hear more joints are hurting. Fingers and toes crossed that Stelara works quickly!
 
Ugh! You guys must be absolutely knackered. :( :ghug:

So good to hear that the first shot has gone well J! :) I hope with all my heart all continues to go well for Claire and Stelara proves to be her miracle med! :heart:

Dusty. xxx
 
I don't know if it will help but when Grace's shoulder is the most painful we put the arm in a sling. We don't stop her from moving the arm but want to give her arm a comfy position to rest her shoulder in.
HUGS
 
So sorry you've had so many problems lately! Poor Claire! :ghug: :ghug:

Glad the shot went well and hope you begin to see improvement very soon for her!
 
What is the Stelara like? How much is in the injection and was it a painful one? Humira is so painful... and Cimzia is 2 syringes with 200 ml each!! (And its thick). I'm hoping Stelara is an answer for Claire. And this drug works differently than the TNF so I'm so excited that it could be an option for us one day. Keep us posted on its success. When is the next injection?
P.S. Shame on the GI office! I'd have been mad too!
 
AZMOM said:
At diagnosis, Claire had quite a few sores on her little hiney. They weren't full blown boils, she's only had one of those ever and it was when she was 3. But they were more significant and more painful than a simple pimple or something. We treated them with antibiotic ointment in the hospital and they went away. I was so ensconced in learning about Crohn's, I didn't give them much thought. She had so much going on with the bleeding, fevers and mouth sores, I just assumed it was part of the package. Ugh.

A couple of times over the years, she'll have a couple reappear and then fade. Now that we've had this rough patch, she has several in different stages - probably 5-6 on the lower part of her bottom right now. And, today one on her outer thigh about two inches below her hip bone that is particularly angry looking.

I have started putting the prescribed ointment back on them (got a new script from a friend that's a nurse prac) but I don't like not knowing exactly what it is. She doesn't sit around in wet pants, it's not summer, it's not fungal, I make sure she's dried well after showering, the towels are clean, I've thrown out and replaced her shower scrubby a zillion times, I just don't get it......

Anyone else's kiddos have these? Do you have a name for it? Have you used ointment? Do they come and go? Do they coincide with flares?

We have an appt next Thursday and I'm hoping enough of them are around for the doc to see. But I don't feel comfortable not putting something on them when she's uncomfortable AND there is no way in God's green acre she is letting me take a pic of her bum. I may try for the one on her leg tomorrow.....

J.
Click to expand...

My son also gets sores on his bottom and and lower back. the family Dr tested it for staph infection. The results were negative so he gave me cream for them which did work. I have never been given a name either for the sores.
Hope you get a name for what it is.
 
Brian's Mom - it was a 45mg injection in a small prefilled syringe. Claire said it burned. The plan for now is

Week 0 - 45mg
Week 4 - 45mg
Week 8 - 135mg
Week 12 - 45mg
Then 45mg every 8 weeks.

I'm gonna check out the Stelara page.

She's in there sleeping peacefully.....EN running away.

Love, J.
 
Maya142 - yes - the hip is greatly improved. The shoulder is slower. She is RESTLESS and irritable but better. And, EN is going smoother every night so I'm trying to focus on the positive!!

J.
 
AZMOM,I'm so sorry to hear about all your troubles. It makes me so angry that our kids have to go through so much pain.When is the world gonna wake up and see that we need a cure for this horrible disease, just as much as we need a cure for cancer,if not more?
 
Yes Max's Mom - a cure would be LOVELY (understatement :)).

EN is going fine. Stopped Meloxicam again per Rheumy after 7 days. Last night started grumbling about thumb. Here we go again, I'm afraid. I HOPE I'M WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

J.
 
I hope you are too J! :ghug::ghug::ghug:

Sending much love and healing thoughts your way! :Karl:

Dusty. xxx
 

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