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Since I've been such a grump on here lately, I feel compelled to share some joy. The tube insertion, while she won't do it herself, is going perfectly fine each night. She is tolerating everything fine. I do keep checking her weight because her belly looks a little distended but she isn't uncomfortable.

AND, she's had ZERO joint pain the last couple of days. I'm cautiously optimistic!!!!

J.
 
Sending the good luck fairy your way J that the past couple aren’t of days aren’t a fluke!
Fairy_by_Zikes.gif


You are both in my thoughts and I am so happy that things are settling for Claire, bless her :Karl:

Onwards and Upwards!

Dusty. xxx
 
Maintaining my sense of humor. Claire thought this was funny!
 

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Well Claire has gained 3 lbs. That makes me happy. Seeing a little color in her face for the first time in years makes me happy too!

Her abdomen though - even before feed - is looking distended to me. If it continues through Monday, I am going to call the GI. BMs are fine, sleeping is fine, joint pain is fine.........is there something I need to worry about that I'm missing? :eek2:

J.
 
So good to hear that things are going fab for Claire! :):):)

But…not sure about the distension J…I have everything crossed, and I mean everything!, that is nothing! GOOD LUCK!

Dusty. :ghug:
 
Could we get more than a week without drama? Apparently not. Feeds are going fine. Three days ago wrist started swelling and pain. I let the Rheum know and we agreed that we would restart meloxicam. She's had three doses but things are getting worse. Now mcp joints and fingers are swollen and painful. Talked to Rheum again today. He said about the only choice at this point is to do a short, low dose, course of pred. I said I'd talk to her about it.

Her answer is an emphatic no. We'll see how things go.

I'm trying to channel my fury for good but I'm pissed. Just pissed that nothing is working. We haven't even begun to wean the stupid Uceris and she just keeps getting worse. :(

J.
 
Sending hugs. The rheumatologist we spoke too told M that Stelara takes a long time to work. Hang in there:ghug:

Why is Claire so against pred? Fwiw M's joints have improved on 10mg (although it take 20mg at least for her to get a LOT better) and she didn't really have side effects on 10mg.
 
Big huge hugs ....
I so feel for her - I know DS freaks if he thinks there will be pred .

When is the next dose of stelara ?
 
Week 4 (second dose is next Thursday). Claire spent 6 months on steroids following her crohns dx. 40mg a day most of the time. Everytime we tried to wean, she started to bleed. She sees those pictures and unfortunately, remembers. And she was precious to me but looked like a completely different kid. That's probably part of her reticence despite all of us reassuring her it won't be like that. Ugh......

She's done a five day one other time. Not for arthritis but the crohns. I think it was right at the time we started the Uceris.

What worries me is not the length of time for the Stelara to work so much as since she's getting worse instead of better before we've weaned anything. I'm afraid it will delay that. :(. She bought into "this tube gets me off Uceris - I will grow and some of this hair will go away" plan. It will be hard for her to understand a detour although we ALL know that happens.

End of rant. Sigh.

J.
 
Ugh poor kiddo :( . M also hated the side effects of prednisone but on the low dose (10mg) she really didn't have any. She was on 10mg for a month and she didn't get the puffy steroid face that she got 30mg and 20mg.

The other thing we've done is an intramuscular medrol injection which gives her relief for about 10 days (her joints, her Crohn's was in remission when we did it, so no idea if it would help that). She had no side effects with the injection.

Hope something changes SOON:hug:
 
That's good to know. I emailed him back and asked about a single injection possibility!!!!!

J.
 
Grace did low dose pred as a bridge therapy between mtx and Humira.
She was on it for 5 months and took 5 mg (she's younger then yours). She did wean down to 2.5mg for a months before stopping.

No side effects for her. I can't say it helped but I can't say it didn't either.
Clear as mud...right.
 
So sorry Julie. I can relate to the "trying so much and nothing working". I got pissed when we went 14 weeks with nothing by mouth via EEN and then TPN and things still got worse. Its hard to get them pumped up to try "the next" thing to have it not work. DS got to the point he didn't want to try anything new. But the sad part is that they say "NO" but they do it anyway because they are used to just having to suck it up and do it in the end. I feel for Claire. I think as they get older the prednisone side effects bother them more. (the appearance ones). At least its summer. I wish I could give you both a huge hug... so here comes one via cyber space!! Prayers the Stelara kicks in soon. I also have heard that it takes awhile to work.
 
Oh what a difference a day makes (or a week lol). We did not do pred. She did improve on meloxicam. EN feedings are going well and we are thrilled to see pink cheeks. Typically she ONLY has color in her face when she has a FEVER. Seriously!!!!!!!!!!!!!!!!!!!!

I'm trying to take my own advice to enjoy every good day and we've had a few. Last week Claire was doing a day drama camp. It was taxing with the arthritis pain and every day after 6 hours of camp, she literally came home and went to bed until I put the tube in and then went back to bed. Friday I wouldn't let her lay down because I was afraid she'd sleep through the performance BUT that was the day she started to perk up. Then I obsessed she'd forget her lines because she'd felt too poorly to really practice at home as they suggested.

Well, folks, have you seen Steel Magnolias? The youth drama camp was doing selected scenes and Claire was Clairee. It was the scene where M'Lynn breaks down over the death of her daughter (M'Lynn was played by Sally Field in the movie, Ouiser was played by Shirley Maclaine and Clairee by Olympia Dukakis). Clairee grabs Ouiser and starts shouting for M'Lynn to hit her. This was the scene and my little girl stole the show. First of all, the girl playing Ouiser was a good foot taller than Claire who had to hold her by the arms. Her struggle to hold her, plus her line delivery was hilarious. I'm her biased Mom but person after person told us how hilarious she was and that she was a "natural". After the summer she had, seeing that grin on her face was PRICELESS.

Hugs to all of you and your "Clairee's" tonight. :ghug:

J.
 
Of course she stole the show! She gets all that talent from Mom right ;) ?!
Really wonderful news, glad she's a bit better!
 
You all have got to think I'm crazy. I AM crazy but I'm not insane....... This week of Broadway musical camp is going well BUT we have only been off the meloxicam 2-3 days (I'm losing count) and tonight, she was having trouble raising her arm.........damn shoulder. I have emailed the Rheumatologist and re-started the meloxicam. :ymad: Then for good measure, I emailed the GI and told him about it made sure we could reduce the Uceris to 3 days a week starting today. His original instructions were to start lowering the level at 4 weeks successful EN and here we are at 4 weeks.................

J.
 
We can t THINK your crazy since we have all btdt more than a few times .
Last gi appt stated DS hasn't had any blood - two days later bright blood just once to mess with my stable mind.
Hope the mobic helps
 
Haven't quit Meloxicam. Arthritis is worse. Damn it. Trying to talk her into the pred. Maya142 - she might need a peptalk from M. ;)

J.
 
Hah M does love steroids (but only low doses) ;)
Poor Claire, I hope everything turns around soon. Joint pain is the absolute worst!
 
These girls, I mean even Grace's jia is flaring. I can't figure it out and hate it all.:ymad:

I do hope Clare will feel better. :hug:
We always end up going to pred even though I try my best to avoid it for her.
 
Farmwife - right now it's her choice - I'd give it to her in a New York minute.
 
It's so hard when they get older and stubborn. I wish Claire could convince M to get an NG tube!
Maybe her rheumatologist can talk her into it -- you certainly don't want her finger joints to get damaged from the inflammation. M has a lot of damage in her knee and hips, I really wish we had treated her more aggressively.
 
Big hugs to you ..
Its so hard when they are in pain.

Are there any non medication therapies she can try ?
Not sure which joints are bothering her .
Splinting , heat , warm water therapy , etc...
 
MLP - she has heated mattress pad she uses at night. Tried heat on ankle this morning. She complained that the pressure of the pad was too painful. Lordy.

Those things seem to work for us with the less acute onsets. I'm going to keep trying though.

J.
 
Voltaren gel? An ankle brace if she's having trouble walking? M also has lidocaine patches but those are kind of hard to put on an ankle (works great on her lower back and ribs!).
 
Parafin wax ???
It doesn't stop things but she could dip her foot/ankle to give a little relief

Tens unit??
DS has one of those
 
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MLP - we did those things before. Probably could this time if it would stay in one joint more than 4-5 days. I have to get a new strategy in my head.

I emailed her rheumatologist to ask him if we should expect more of this since we are weaning Uceris. I also asked if doing short pred burst would work for the migratory big joints. When I talk to him I'll ask about the other things. Especially if left wrist/thumb continue. We did paraffin and iontophoresis to that wrist before.

Thank you all for thinking of us.
 
Maya142 - an ankle brace might be in order if this continues. School starts first week of August - had it been today, it would have been disastrous!
 
Poor Claire, thinking of you both:hug:

Other than pred all I can think of is joint injections but those are hard if the pain is migratory. M had one in her knee that helped a LOT recently. It was easy too, only local anesthesia.

Hopefully your next dose of Stelara will do it! Let us know what the rheumatologist says, I hope he has some ideas.

On a totally separate note, can't believe school starts so early!
 
This was the ankle (and the girl) at noon today. Not the usual 😡. And no, that's not a bruise - it's redder and a little more mottled (for lack of a better word) than the stupid picture appears.
 

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