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04-12-2011, 04:53 AM   #61
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Sorry for the troubles T! It doesn't make a lot of sense if she's urinating more to be adding the weight. The bloating I could understand but where's the weight coming from? Let us know what the docs say!
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04-12-2011, 10:37 AM   #62
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just read this thread. Praying for your little girl and you. This reminds me so much of Tanner and me when he had his ileostomy. Tanner is 11yrs old and was diagnosed with crohn's at the age of 7. He had his ileostomy for a little over a year to see if resting his colon would help, it didn't so they removed all but 12 inches of his colon and reattached his small intestine to that!!! no more bag and at the moment feels great! So I understand what you are going thru and how she feels about the bag.
04-12-2011, 11:27 PM   #63
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Well all, things are going better today
Not great yet, but certainly better!

My son, the one who plays tennis (and wins! LOL) played in the Regionals competition today...and WON!(one more game and then he makes it to State !) Yippee ! Why do I bring this up here ? Because I had to take Gab to see her GP pediatrics doc today and afterwards I just drove on over to try and catch a glimpse of his match. She decided to just wait in the car. However, as I approached the courts 3 of her bestest friends were there supporting the team and I informed them that Gab was in the car and wasn't coming out. I knew they weren't going to let that happen. They ran full speed to the car and next thing I know Gab came out and joined us ! She was welcomed by everyone with big hugs and smiles ! I think it really made her feel great because we stayed for the entire game !! This was our first real outing outside our home as she has been to scared to go anywhere. I am oh so happy and grateful that her friends were there to coax her !! And they treated her like gold, and watched over her like she was so precious! (and we know she is !!)

I think she eventually figured it out that I sorta, kinda did this on purpose LOL! I knew they could persuade her ! hehehe

On another note...
I did speak with the Mayo clinic today concerning her swelling and rapid pulse problems. They are working on talking to her surgeon about the swelling and pain and calling me back tomorrow. The nurse recommended I take her to her local doc here for the pulse issue so that's what I did. I am so happy I took her there too! He is ordering blood tests to check her thyroid levels to be safe, and he also prescribed some anti-anxiety meds as well. (we know she has panic attacks, and anxiety) The reason I was so happy though, is because we were his only patient at the time and we talked for a good hour. He wanted to know every detail I could possibly give him about her pre-surgery testing, her surgery, how will they treat her now, and the best question of all.....WHAT COULD I (the doctor) LEARN FROM THIS ?? He asked me to "teach" him!! He wanted me to tell him exactly what I, mom, thought he and the other doctors could have done differently that may have saved her from some of this suffering! I about broke into tears right there!
I did what he asked though, and I tell you, once I started talking I couldn't stop. I was reciting blood test results from 2 years ago leading up to the day of surgery and how I tried to show him, and others, over and over, the patterns and that something was seriously wrong! I told him all the little symptoms they, and he, failed to listen to when we were reporting them. Best of all....I told him that he, and all doctors, should really stop and really listen and hear what their patients are saying. We're not all over reacting, drug and disease seeking paranoid hypochondriacs! And we're not all over reacting mommy's and daddy's that think their child is the only "sick" kid on the planet.

I said so much more than this, but most importantly....I said it with grace and dignity and with respect to the man who actually asked me. And he listened. It was a good day! He truly wanted to know so that he can learn and hopefully know what to look for next time, or with other patients that are "tricky" like Gab.

This man has been my children's pediatrician to all three of my children since the day Gab was born a little over 18 years a go. Today just insured why I chose him, and continue to keep him looking out for my babies.
Well, that and ... He looked at me and then Gab and said he is and always will be in awe of the two of us. He said that after the two of us are gone from this life we are going to make someone have two very special angels looking out for them. What a compliment to hear. The doctor, in awe of his patient and mom. WOW.

Next step....I guess I'll go ahead and speak with her previous pediatric GI doc. (the one I've been angry with). I feel better now and feel like I should just offer her up my advice, even if she doesn't ask for it LOL

Thanks for listening to me ramble so much everyone!
I have so much respect for all the stories and people and families here in this forum.
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04-12-2011, 11:39 PM   #64
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just read this thread. Praying for your little girl and you. This reminds me so much of Tanner and me when he had his ileostomy. Tanner is 11yrs old and was diagnosed with crohn's at the age of 7. He had his ileostomy for a little over a year to see if resting his colon would help, it didn't so they removed all but 12 inches of his colon and reattached his small intestine to that!!! no more bag and at the moment feels great! So I understand what you are going thru and how she feels about the bag.
@tannersmom:

I asked Gabs pediatrician today about the irritation around the stoma site. (he told me he has a lot of experience with ileostomies) I told him that it's been quite red, with a small amount of bleeding, and a bit painful.
He said we can use Miralax powder and take just the powder and rub it on the irritated area and that will, or should, take care of the problem.

Have you ever heard of this "trick" when dealing with your son's ??
Our pediatrician has always had lots of "home remedies" and prefers them over prescribing anti-biotics any day, so this advice didn't surprise me coming from him. However, I have searched and searched before today and haven't found one person that says to do this.

Do you have any thoughts ??

I am glad your son was able to get rid of his ileostomy and is feeling great right now!!
04-13-2011, 12:59 AM   #65
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Sorry I haven't popped by sooner T!

Firstly......Congrats to your boy! That is so fab to hear!......

Secondly......I am so relieved to hear that they are going to jump on the pulse and swelling issues, let us know how you go with that.

Thirdly......VALIDATION!!! My favourite thing in the whole world! How good is that T! I am so happy that you have had this opportunity to tell your story and to be listened too and such a heartfelt compliment to top it all off, you both deserve nothing less. Kudos to you guys!

Fourthly......Snaps to Gabs friends! and way to go Mum! It's brilliant that all went according to plan...... and that Gabs enjoyed herself, nothing better than seeing your kids happy!

Thinking of you, take care hun,
Dusty. xxxxxxxx
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04-13-2011, 05:51 AM   #66
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Wow T, if a doc had asked me to do that, after I picked my jaw off the floor, I would have proceeded to um and uh for ten minutes and accomplish nothing w/o being prepared. I'll have to add you to the level headed list and say I'm not
04-13-2011, 08:56 AM   #67
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crohnsmom, I have not heard of rubbing miralax powder on the area. Tanner had alot of issues with his bag, pretty much he had a month of doing ok with it and then the rest of the time his skin stayed VERY red and irritated. At the end we discovered that he was just very allergic to the bags, and I always ordered the hypo/sensitive skin bags. I hope your daughter doesn't have skin issues, Tanner had some skin issues before his ileostomy and after getting it those issues seemed to get worse. What really helped Tanner was when the bag was off, his skin rested, but of course it could never stay off as long as it needed too. I hope this issue improves for you guys, it can really wear you down.
04-14-2011, 09:03 AM   #68
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T..... Congrats to your son!!! I am cheering him on! Go go go!
I am so glad you have such a wonderful Peds Dr. I have had mine since my oldest (23) was born! (I even had him as a teen for a short bit!) Anyway I think our Dr's are NEVER too old or young to learn! Just because a case is in a textbook...doesn't mean it's a "TEXTBOOK" case! Look at all the new medical shows like "Mystery Diagnosis" .....I am just glad your Dr. is Human enough to realize he can do better! As for the "Miralax" on the ostomy site....try it if he has had others use it & has had some success. It just might be the one thing that helps!
If you try it let us know how it goes!
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04-17-2011, 02:52 AM   #69
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T..... Congrats to your son!!! I am cheering him on! Go go go!
I am so glad you have such a wonderful Peds Dr. I have had mine since my oldest (23) was born! (I even had him as a teen for a short bit!) Anyway I think our Dr's are NEVER too old or young to learn! Just because a case is in a textbook...doesn't mean it's a "TEXTBOOK" case! Look at all the new medical shows like "Mystery Diagnosis" .....I am just glad your Dr. is Human enough to realize he can do better! As for the "Miralax" on the ostomy site....try it if he has had others use it & has had some success. It just might be the one thing that helps!
If you try it let us know how it goes!
Thanks Mom!
He lost his last round of regionals...but hey the team did great and it was his first year on a team. I'm still so proud !

Funny you mention that show "Mystery Diagnosis"! We have heard that term way too many times to count; as well as, you need a "Dr. House". Geez! If only he were real! LOL

I see in your signature about Flagyl and hand neuropathy ... My daughter had that as well, it affected her entire right arm and drove her crazy! The docs ordered her Flagyl in the hospital after the surgery and I told them about this. They said it really only happens with "long term use" and that they weren't going to continue it after we left so she would be fine. I was nervous of course, but, they were absolutely correct!

To update on Gab:
We're still having some problems with her recovery. It's 3:30 a.m. here right now and I can't sleep because of worry of course
Her abdomen is so swollen and painful again.
Her skin has been driving her insane with itching; even after taking Claritin daily and benadryl for extra help. There are no visible rashes or anything to help me figure it out though.
No fevers...thank gawd !
She continues to gain between 5-10 pounds by the end of each day. Somehow she manages to lessen the pounds and the swelling while she (barely) sleeps and then as the day goes on she is swelling right back up. so strange ?!?
And, to top it off....her arthritis is flaring again! Her right hand and wrist are in pain and swollen (with a bit of a visible lump?)...also her knees are starting.
Her back pain that she had pre-surgery hasn't eased one bit. I was sooo hoping that this would all be gone, poof, like magic directly after surgery.(or at least by now) arrgghh!
I am so worried that she is not only NOT in remission yet, but that her right kidney decided not to "heal itself" like they were hoping. She is scheduled for a nuclear dye scan of the kidney on Friday, along with numerous labs. I hope she can hold out that long because she thinks she may be getting yet another UTI

Oh lowdy, lowdy....does it ever end ?? Where's all this energy and health they promised my baby after they gutted her ??
I have definitely decided that no matter what we will fight for Remicade or Cimzia a.s.a.p. This nasty disease obviously wants a big fight and we are going to give it the best one we've got !!

I sure hope everyone else is doing well! I haven't had much of a chance to pop into the other threads lately as she is pretty much a literal 24/7 job lately. I promise to come around and give back some support when things are calmer !!

Be well and hey....smile at a stranger today and make them wonder what your up to!

Oh I just HAD to do a little "edit" and add something positive! Gab actually put on a pair of her jeans today instead of the "yoga" pants she's been wearing since months before the surgery!! She didn't get to wear them too long due to swelling...but hey..she gave it a try! (Her new supplies I ordered came today...I got her some mini bags specifically so she may feel more comfortable with the look of her clothing!)

Last edited by Crohn's Mom; 04-17-2011 at 03:29 AM.
04-17-2011, 04:38 AM   #70
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Hope you got some sleep T!! Is Gab's GI satisfied that her recovery is going OK? It just seems like things should be settling by now. Fortunately, I don't have any first hand knowledge. I'm just concerned for you both and I hope things start normalizing for her soon!!
04-17-2011, 04:41 AM   #71
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Thanks Mark!
We are not scheduled to see her GI doc for follow up until the 25th; the same day we get the results from the Urologist appointment.
However, we have the follow up appt. with her surgeon on Wednesday afternoon. I am going to request when we are there that he approves her labs, that are scheduled for Friday, to be done while we are there.
That is the wonderful thing about the Mayo clinic....everything you need, and every dif kind of doctor you need are all right there. It just requires a lot of elevator rides and a bit of walking between buildings now and then!

another edit: obviously...nope, no sleeping tonight!
04-17-2011, 04:59 AM   #72
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Do the docs not seem concerned about her progress or lack of? I wouldn't know, maybe everything she's going through is exactly as they expect but I'd want to hear it from them. Are you having e-mail or phone convos with them?
04-17-2011, 05:57 AM   #73
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Hey T,

Your boy has done so well! YAY! Good on him......

Oh man, I am sorry to hear that Gabs is struggling, this is so bloody unfair! Just tossing some ideas around so bear with me!

How much output is Gabs having through her ileostomy?

Could she be dehydrated?? This is a risk with an ileostomy. The reason I ask this is dehydration causes bloating and dry itchy skin and the decreased urine output will irritate the bladder and increase the risk of a UTI.

It's good to know you have follow up this week. How often is she having blood drawn?

Maybe keep a food diary and see if any foods or fluids she is consuming are causing increased bloat or gas.

Hells bells mate, I hope things start to settle as of now! Hopefully the docs appointments over the next week can sort the problems out and Gabs can start having a taste of wellness and normality......



Thinking of you and sending mega loads of healing (((HUGS))) and (((THOUGHTS))) your way,
Dusty. xxxxxxxx
04-17-2011, 11:24 AM   #74
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Thanks Dusty...I'll bear with ya anytime...you know I need your advice and opinions!
And hell, if you sing....I could use a lullaby too cause I've yet to go to sleep...running on 3 hours in the last two days. My "mom" alarms must be on full alert !

You could be spot on with the dehydration...and of course I keep that at the front of my mind because of the ileostomy at all times.
As far as I am concerned, she is drinking more than enough, and her output depends on the time of day really...but, seems relatively her "normal" thus far.
Her urine out put isn't so great, but she is still "going" and that's a good sign I know.
She knows her personal symptoms of an oncoming UTI and she believes it's there. I will be calling doc's in the morning for lab orders; we're not waiting till wednesday or friday.
I just woke her to give her daily meds and took her temp and it's at 98.8 F...it's been running at around 97 F post surgery, so I will take it again in an hour or so just to make sure it doesn't continue to rise.

Back to that dehydration (scramble sleep brain kicking in ) When you were a kid did you ever drink a bunch of water, or whatever, just to see if you could hear it "wiggling around" in there ? I know...I sound silly but I wanted to use this as the only way I know how to reference her tummy last night! LOL That tells me she's probably drank plenty of water; however, I never really understood what made our little tummies swim like that !

As far as the "food diary" we both have one of those stored up in our brains now...and starting up a new one especially for her new attachment. We have found out for sure, with out a doubt, DAIRY IS OUT FOR EVER! Not a good mix with her body, or our nostrils ! LMAO

I better stop here...I'm outta control with the
I guess I really do stay pretty damn positive even when I'm greatly worried hehe.

thanks for the and back at ya !
04-17-2011, 02:21 PM   #75
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I do sing, you just may not want to hear it if you're looking to get some sleep!

Getting the bloods done earlier is a great idea, this early on post op could mean there are electrolyte imbalances. Keep an eye on sodium and potassium.

Good luck mate and roll on appointment time!

Much love,
Dusty. xxxxxxxx
04-17-2011, 03:37 PM   #76
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Dusty you're so smart..and level headed !

I just did a quick google check on potassium and sodium levels and poof! Both of those could just about cover every one of her symptoms right now!
As soon as you said potassium, bells went of in my brain! She had low potassium post op and she was taking supplement the entire hospital stay. And..these symptoms are exactly what extended our stay there as well. I believe I just read that it's the low potassium that could possibly be causing her rapid heart beat as well?

So just to pick your brain a bit....
In your opinion, would this be from her kidney function, or possible malabsorption, or both?
Mostly what I quickly read, that may pertain to her, was about kidney function.

Thanks again!
I got a 2 hour nap....heaven!
04-17-2011, 04:58 PM   #77
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I would be more inclined to think it is directly related to her ileostomy and the accompanying issues with malabsorption and water loss. It is early days yet and it is going take her body a while to adjust to the changes. Low pottasium can cause a rapid heart beat.

I don't think it is her renal function causing the problem but I can't say for sure so don't quote me! It's just my two cents worth....... Even if Gabs right kidney has problems she has still has a normal functioning left kidney that should negate the effects of the other as far as the body/blood is concerned. Most imbalances and issues relating to the kidneys from crohns are due to malabsorption so they arise from the Crohns not the kidney itself.

I would be having bloods drawn weekly post op until Gabs problems resolve.

HTH,
Dusty. xxx
04-17-2011, 05:20 PM   #78
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getting potassium through IV hurts like a son of a bitch.. so hopefully she can eat as many bananas as possible.... or take potassium pills...(are there any??)...

...makes me shudder....
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04-17-2011, 05:30 PM   #79
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Stop shuddering Wendy!......You can take tablets, but they are enteric coated, you can also get effervescent tablets.

Dusty.
04-17-2011, 05:43 PM   #80
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Phew...lol..okay good
I'd go with the effervescent tablets... makes it all the more interesting..

Last edited by Keona; 04-17-2011 at 05:55 PM.
04-17-2011, 05:50 PM   #81
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Hey T.....Oh my are you having a time! As usual Dusty is da bomb! LOL! All kidding aside she is making a lot of sense. As a nurses aid....we have seen a lot of diarrhea cause very little urine output. The elderly, young, & those that are sick to begin with are ALWAYS more susceptible to dehydration! Electrolytes are a very fine balance to keep! I am surprised that they sent her home without some potassium to supplement! As someone who takes a diuretic for my BP in the beginning they watched my potassium closely & told me to eat food rich in the nutrient! Well duhhhh it's a whole other ball game for Gab's she has many factors to consider! 1. absorption, 2. recent surgery & the nature of her surgery, & 3. an Ileostomy!
That's what we are here for to help each other through the really hard times! We understand that you will be there when things ease up & you can have your Beauty rest again! You need to be there for Gab's now & that's what matter's!

As for Daniels hand Neuropathy it is much better but he still has some slight hand tremor. The Dr. does want to try Flagyl again. He likes to cycle the meds so they don't get immune to one med. It's something we haven't been able to do with all the problems he has had with his meds. It works better to treat with Flagyl for C-diff than Vanco.....also much cheaper. I saw the price for 25 pill's over $900!!!!!!!! I am glad the insurance covered this.

We are here for you Proud Momma T!
04-18-2011, 08:28 PM   #82
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Okay T I'm caught up. And whew! You all have been through it. Dusty is of course, on it like Donkey Kong. :-)

I'm with you on fighting for the biologic. I also believe that might kick her arthropathy in the tail.

Please keep us posted and know that even though I've been "absent" - you all have been on my mind!

Love & Crohn's Disease!

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04-19-2011, 08:46 PM   #83
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Tracy, did you guys find anything out yet? How's Gabs?
04-19-2011, 08:55 PM   #84
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Hey Dex...

We went out and got a home kit for UTI testing and she definitely has one...it changed colors as she was going on the stick and it's supposed to take 2 minutes! She was positive for Leukocytes according to how it reads. So Mayo Clinic ordered labs for in the morning when we get there.
They also moved her Ostomy Clinic appt. to tomorrow as well so we can get things checked out. I changed her wafer again a bit a go and it does look much better tonight...not healed yet, but just a little bleeding and less red; that makes me feel a little better at least about the stoma part.
Just need to get that relief about her kidney now

She's still itching like crazy, and her tummy is super bloated along with her face again. (she only has 1 week left of 5mg every other day for prednisone..so it's not that).

Today hasn't been so great; she woke up saying "I just don't feel right mom". Also, her legs are really weak today which is new, and strange. Still no real sign of fevers tho! She is also very fatigued today, but I know "down" days with post-op is to be expected (and she actually cleaned her room yesterday, so that could have done it too ! LOL)

Thanks for checking in hun. Hope EJ is doing well, haven't seen much lately about him.
04-19-2011, 09:34 PM   #85
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T - I don't know what to say other than you are so like me, the lionness is out. And she'll stay out until your baby can find a "new normal". Keep us posted.

I wish I had other words of wisdom......but I'm too fried tonight. Ha ha.

Lots of love and all that other squishy southern stuff,

J.
04-19-2011, 11:26 PM   #86
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Hey T,

Bloody hell, it doesn't rain but pours!

It's good to hear they are taking notice and moving things along, as the should be! I'm glad the ostomy area is settling......phew.

Please give Gabs a big (((HUG))) from me. I am always thinking about you guys......

Good luck with the appointments hun and let us know how things go when you get the chance.

Much love,
Dusty. xxxxxxxx
04-19-2011, 11:45 PM   #87
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good luck with the appointment tomorrow
04-20-2011, 09:21 AM   #88
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T- Make sure they check her protein levels... She is sounding a bit like me before I got better. Hugs to you both!

Oh... Yep, the area around my stoma stayed irritated off and on for about a month. It will probably get better after the pred. leaves her system.

Wendy
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04-20-2011, 10:48 PM   #89
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T- Make sure they check her protein levels... She is sounding a bit like me before I got better. Hugs to you both!
@Wendy...Call me dumb...does that mean blood protein or urine spilled into protein? Thanks

Well we made it home safe and sound from Gab's appt. today; even out ran a storm
I sure wish we could all say the same for outrunning the Crohn's storm....

While the surgeon said Gab "looks" so much better, and she does, he just didn't seem so confident with his attitude (for lack of a better word) today. You know what I mean...when the doc just tries to say things so convincingly, yet at the same time he says things like probably, hopefully, and it (shouldn't) be a problem...but I can't guarantee it.
First off...her incision is healing as expected, and looking really nice.
Secondly,..we are doing just fine with the stoma, it has just thrown us some learning curves, it's healing up better, and the stoma nurse assured us we're "normal" HA! what does she know

and then...
we started discussing the ileostomy take down. Post-op he said 6 months. We knew this. But he also told Gab a couple days later when she was crying over it that he would try really hard to do it before she left for college. He didn't promise that day.. but I wish he never would have even mentioned it. Today was a different story, and there's no way that will happen. He said as her doctor he would be rushing it and he is not willing to risk her health(I completely respect that); nor risk, as he told her, that she ends up with another, even more major surgery and comes out with 2 stomas instead (which would be likely) HOLY CRAP!
Anyhow, he is willing to (probably) try it at the 6 month mark (Sept.) but that is about 6 weeks into her freshman year of college. He said she will need at least 1 week in the hospital after and probably 3-4 wk. recovery at home. I didn't realize it would be another major surgery like that. He did tell her that he will do it the first break after her finals (December). He checked his schedule, brought in his scheduling nurse, and made sure she heard him tell Gab that when she calls and lets him know when her break is, she is his #1 patient and they will move other peoples surgery's to fit her in on her time. He's such a human surgeon, and oh so very kind and good at what he does, but man I didn't want to see those tears flowing from my baby's eyes. She went from being super positive to tears in about 2.5 seconds.

We also discussed her UTI and her kidney issues. I asked why do we have to wait for an anti-biotic until the culture grows? Why can't we start her on something now when we know she has one? He explained that it is critical to know as best we can with Gab exactly which meds are needed because of her known ureter and kidney problems already. He also said, even tho he's not the urologist, that they will probably have to put the double J stent in her ureter after all. We won't know for sure of course until after we get the kidney scan results on Monday.
Hopefully we will have some kind of info on the infection in the morning tho, because tonight she has started a fever on top of it all. ( I knew it was coming).
Oh yeah...I also asked about her other random symptoms, and he basically said they can all be attributed to her kidney issues. I really hate being right

So all in all the day "is what it is" and Gab's emotions are set back to square one. I know she'll bounce back...it's just hard seeing her this way again. It doesn't help that I haven't been sleeping a wink this week, so I am over tired and probably a bit too emotional. I am also having a problem with my chronically angry appendix today, so the pain and fever from that doesn't help my emotions any.

Bless you all for being here through my ups and downs with me! I really don't know how I'd get through this without all of my new friends

Hopefully, when things are bright and sunny and oh so healthy here in this thread for good, our posts here will help a new mom or dad, scared out of their mind because, their baby is going for the dreaded surgery...they will get to the end and realize it WILL all be ok, and there IS hope I hope all my ramblings will anyhow

Last edited by Crohn's Mom; 04-20-2011 at 11:58 PM.
04-20-2011, 11:03 PM   #90
Crohn's Mom
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Join Date: Mar 2011
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This is what keeps me going no matter what:

Gab entered our picture in a contest on Facebook for a "Brag about your mom contest" to win a $500 gift card.
It required a caption to be written underneath; this is what she wrote...
My mom has sacrificed everything to make my life the best she possibly can. I was diagnosed with severe Crohn’s disease, and have been in and out of doctors’ offices and hospitals for the past several years. My mom has never given up trying to get me healthy; she chose a clinic an hour away just because they are the best of the best. She always keeps a smile on her face even when she feels like breaking down. She takes months off of work giving up the money that our family needs. 3 weeks ago I had major surgery and while I was in the hospital she would go out of her way to keep me laughing through the pain and no matter how much bad news we got. She slept on a small, uncomfortable recliner for a week straight just to stay by my side; she is my guardian angel. You will never catch her complaining even though we have been through more than most people will know in a lifetime. She is the strongest, most beautiful person I know, inside and out, and never gets recognition she so deserves.
Yes, I will share my tissues with you all! She is the most special daughter, and person, I have every had the privilege to know. I am grateful and proud to call her my daughter.
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