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03-27-2011, 12:43 PM   #31
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Big Hugs to you MOM !!! The first time is nerve racking as you don't want to cause her any pain or mess up! I'm a nursing assistant & have changed quite a few over the years. They can get tricky as you never know when they are gonna burp! Good for you sticking to your guns girl! You are like her personal nursing assistant. We are the EYES & EARS hands on 24/7 there for them! Some one who pops in & sees them for 5 minutes at a time a couple of times a shift doesn't always see it all! That's because the medical system is more more more with less staff! My pediatrician refuses to go computer for charting for the fact that you can't observe if your face is looking at a computer screen. Observation is part of being a Dr.! I know you want to go home but some more time would be good if that's what needed. My oldest was in a week after his resection & he didn't nearly have what your Gab did. You will be home before you know it!!!
Go Moms Go & Dex for sure!
03-27-2011, 12:55 PM   #32
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Alright ladies!! No need to include poor old Dex in everything!! I know when I'm out estrogened!! Love you moms and mums(that's for Dusty) Upside down Australian!!

I think EJ and I are gonna go out and play some ball!!
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03-27-2011, 03:25 PM   #33
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Awww Dex, it's always nice to see a SNAG doing some boy things...............ahahaha................now beat the hell outta ya old man EJ!!!!

Dusty.
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03-28-2011, 12:18 PM   #34
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OH Go Figure !

Gab is feeling awesome ! Up walking, eating, drinking, laughing, etc....We are so ready to go home! Every other day this week her surgeon has been by before 9 a.m. and tells us we're not leaving yet...

Today?? He's still not here ! (it's almost 1:30 p.m.)

Did i mention we are READY to go home !!





Hurry up and wait....arrgghhh....
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03-28-2011, 03:53 PM   #35
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YIPPEE!!!! Hurry home now and let the real healing begin. So happy to hear this. Did they draw labs this morning? That may be the hold up...hurry up Doc, they want to go HOME.
(sometimes the lab holds things up, waiting on results)
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03-28-2011, 07:57 PM   #36
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Well, T, did he show up? Are you home? Is a :mbh: in order?

Love, J.
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03-28-2011, 09:06 PM   #37
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YIPPY :mbh: INDEED!!!! 2 Steps forward & 1 Step backwards! As long as you keep going forward!!!!

Can't wait to hear how things are going!
03-30-2011, 12:37 PM   #38
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HI everyone !
We are finally home (we've been home for a little over a day now)
I think things have hit poor Gab a little harder now that we are home and things are "quiet". She's getting a bit depressed I think. Breaks my heart

I know she'll be fine and it will take a little time. It just sucks that all I can do is try and be there for her and spoil her rotten. I want to just take it all away! I would wear that damn bag, for life, if it meant she didn't have to suffer!

As far as healing goes she is doing quite well. Her incision, as big as it is, is quite beautiful. It's going to be so thin when it is finished, we can tell already. She's not eating or drinking much at all so I have to be a nag and keep on her. The home health nurse said that this is a normal reaction and it is her only source of "control" in her mind right now. I understand that but I don't want to see her health go backwards because of it. I have explained to her that she is about to get very skinny and NEEDS to eat due to her new short bowel syndrome.
@Dusty...just wondering if Sarah went through this at all after her surgery ? I know she doesn't have a stoma, but her surgery was unexpected and probably just as traumatic.
Gab has never been one of those girls who worried about her weight or what she ate. She has never been on a "diet" to loose so much as a pound. She was always the one forcing food on her friends because she hates to see them not eating so they can be "skinny".

It's a little hard on me too being home with her. At least at the hospital I had the nurses to help me. At home I am afraid to even run to the corner store for 10 mins. I have tried to enlist the help of family, but that is a whole other story....
I know I can do this, I will find a way.

Things are going well considering tho, and I'm sure will just get better and better from here. Time, time, time right ??

I hope everyone's having a fabulous day !! Thanks again for all of the support !
03-30-2011, 01:20 PM   #39
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Glad you ladies are home. I hope the adjustment to everything at home goes smoothly for all of you.
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03-30-2011, 01:21 PM   #40
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T - SO GLAD to hear from you. All of what you are describing sounds VERY normal to me. I know I don't have any surgical experience and Dusty will be the wise one but just from the Mom perspective, I think it is normal.

Know that love & prayers are being sent your way and you are doing a GREAT job.



J.
03-30-2011, 01:36 PM   #41
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Oh T, what a difficult time for you and Gabs......

Sarah took quite a while to pick up after her surgery. She was in very poor condition going in and afterwards she did look anorexic for 2 - 3 months. If I remember correctly getting back to eating took some time as well, I think the body takes such a battering with the surgery that the emotions take quite a time to settle. I worried about Sarah and her body image, the whole female, teenage issue, this didn't end up being a problem. Sarah and Gabs sound very similar personality wise but as you know Sarah didn't have a stoma. The SBS was the hardest to come to grips with and up until last year she planned her eating around her days but that has changed now and she has become very in tune with her body, that and the help of pysillium husks has mean't she can eat out now, she still makes careful choices but it's a far cry from the past.

It will take time to adjust to0 T and I know you know that. It is so overwhelming for both of you and it's such a fine line between saying too much and nothing at all!!! What does she say when you speak to her about her eating?

It is very early days yet T and yeah time, time, time!

Lordy, lordy, lordy T I have been stewing over whether Matt is going to have a stoma after what the surgeon told the GP. Matt said to me last night when I was doing his dressing......I will be so glad to get out of hospital with nothing attached to me! I didn't hear that, I didn't hear that! Yikes!

T! You are doing so wonderfully well!

Always thinking of you and Gabs,
Dusty. xxxxxxxx
03-30-2011, 01:45 PM   #42
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Dusty honestly, I know next to NOTHING about the SBS. When I asked the GI doc pre-surgery he said it wasn't going to be an issue. Well, he didn't know any more than the surgeon just how bad it was in there. Then the home nurse was trying to explain it yesterday but all I took away from it was how I have to continually watch her weight, watch her weight...etc...

I guess it's time to do more research ! She has already lost over 10 pounds this week. That is mainly from the removal of the mass, and the kidney functioning again so lots of water weight gone.

Gab has never had weight issues either. Even when she was rapidly putting on weight with the prednisone, she still just said F it and kept eating whatever she was hungry for ! That is why I am so concerned now. Every time I ask she says she is just not hungry. So yesterday, I decided to just make her food ( a yummy egg and cheese quesadilla for breakfast), woke her up and handed it to her with a bottle of water and said Good morning beautiful it's time for breakfast ! I don't think she was hungry but she ate it for my sake I'll take it ! I tried the same approach for dinner but didn't have as much luck

Do you all know of any quick reference websites that I could go to for more information on whats to come ?
I guess it's a good thing that I love to fill my head with medical information!
I think most of us should have honorary medical degrees by now !
03-30-2011, 03:28 PM   #43
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What medication is Gabs on T? Oops! Just read your signature.

Sarah lost about that amount of weight when she was in hospital and it did take time for her to get her appetite back. She just couldn't stand the look of many foods so had to start off little and slow.

Do you mean SBS websites? I don't have any particular ones and haven't looked at them for a long time now, sorry. I asked after Sarah's surgery if the remaining bowel would take up any of the role of the removed bowel and they weren't sure. They did feel it would improve over time though. The issues you will have to look to T is malabsorption. Gabs will need B12 injections for the rest of her life, she will need to watch her Folate and Iron as well. It wouldn't hurt for her to have B12, Folate and Iron studies done periodically. Gabs will not absorb fats and salt absorption will also be affected. The GI told Sarah the one thing that most people would die for to hear a doctor say......eat as much fat and salt as you like! . Sarah's response was......I don't like fat and I don't like salt. Unfortunately these malabsorptions cause other issues with things like uric acid and so lead to an increased risk of Kidney and gall stones over time.

When the stoma is reversed Gabs will have frequent loose watery stools and it is a result not only of some disruption to the reabsorption of water in the large bowel but more due to the fact that she won't be able to reabsorb bile salts. There is a medication called Questran Lite that for many people is very effective in alleviating this problem. I know it worked for Sarah but she found it quite unpalatable so refused to take it.

Sarah was unable to manage the SBS very well and I think some of it had to do with her age at the time. I saw no improvement at all in the problem. She settled into planning her eating around the day as her way of dealing it but this is not ideal if you are busy all day and can't eat until late in the evening because then you are up all night to the use the toilet. Untreated Sarah was using her bowels about 5 - 7 times a day.

The last year of school was particularly hard for Sarah and I know she went off the rails. Now last year she moved away to university in Sydney and the change has been dramatic to say the least. She has taken control of her life, has a new belief in herself and her abilities and has become so in tune with her body. Has time made a difference to her SBS? I don't know but it has definitely improved quite significantly. She has moved to a vegan diet, primarily organic, because she said it suits her the best, it gives her more energy, she doesn't suffer with bloating and generally just feels so much better. She also found that natural psyllium husks added to her morning coffee allow her to spend the day and classes and still eat things like sushi at lunchtime without her bowels causing her any problems. It takes fine tuning but she has found the right formula for her that gives her a happy balance......not diarrhoea and not constipation!

Sarah use to be up to the toilet at night quite a bit but that doesn't seem to plague any more. The one thing that does really set her bowels off is any type of oil, whether it is in salad dressing or used in cooking. It will be a lot a trial and error for Gabs but she will settle into a new normal over time and then watch out!!!

Hope some of that helps T!
Dr Dusty.......
03-30-2011, 08:55 PM   #44
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Glad you and Gabs are home T!! I'm also glad Dr. Dusty is here to offer her long-learned advice. I hope Gab soon learns her limitations and the things that work best for her.
03-31-2011, 09:12 AM   #45
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"T".....It is a known fact that when you go through surgery you can feel low & depressed. Especially when it's something so major & life changing. In the hospital there is always someone else there & much going on. Then boom your on your own so to speak. This is the slow process of it all. Some days are good some not so. I remember when my son John had his surgery he went through so many emotions....tuff for a guy. Not ALL ....but us girls can & are softer in this emotion department! (Not tramping on any in particular & we can be strong & ARE....just saying) ; )

Dusty I believe my son is taking Questran Lite as they removed the eliosecum valve (sp). It helps him a lot. But your right about the taste so he mixes it with orange or fruit punch Gatorade. He gets the big powder can then he can mix stronger for taste if he likes.
I can't add more other that what "Dr." Dusty has said... She is so good!!!!

Your Gab & You are in my thoughts! Lots of long distant Hugzzzzzzz!
03-31-2011, 04:22 PM   #46
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Tracey,
Glad you're home but sorry it's rough right now. It is said that there are 5 stages of grief, and I imagine Gab will have to go through them all before she gets to acceptance. Hopefully it gets better soon. Hugs to you both.
04-01-2011, 01:39 PM   #47
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Hey T,

How are things going with you? Is Gabs doing okay?

Much love,
Dusty. xxxxxxxx
04-04-2011, 01:53 PM   #48
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Hi,
I hope that Gabrielle and yourself are doing ok today?

She is a very brave little girl. X
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04-04-2011, 08:36 PM   #49
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Hi there everyone !

I realized I haven't "updated" in a few days. It's a little more difficult at home then in the hospital, that is for sure.

Gab's doing pretty well really. She of course has her good days, as well as not so good.
Yesterday she looked amazing ! She was happy, and smiley; her friends came to visit too. I got her to ride to Starbucks with me (she wouldn't get out of the car tho! LOL), and also to get her favorite tuna sub from Subway.
Later last night we went to rent a couple of movies and she did walk in with me. Bonus!

She's having a hard time accepting that the rest of the world is not staring at her, and no one can really see "the bag". She is more worried about the noises tho. I can't say that I blame her really.

Today tho...different story...She woke up looking "pale" and with dark circles under her eyes again. She says her tummy hurts and she just doesn't feel well. Her pulse has been running rather high the last few days (between 110-125) after any activity. The home nurse was a bit concerned about that so if it doesn't resolve I will call the surgeon tomorrow. She is also quite shaky and, even though our house is like an igloo for her, she continues to sweat. I personally think it is all food and drink related. I made her eggs and toast and gave her a vanilla boost for lunch and it seemed to help.

All in all she is healing quite nicely. I know the bad days are to be expected with recovery....but, I can't help but to get very nervous with days like today. My anxiety takes over and I start to question whether or not this surgery was worth it? Is she in remission? Will she be? What if it all just comes crashing back that quickly? And on and on.....

I am hoping tomorrow she wakes up with that beautiful smile again and we can take a little walk outside or something

Time, time, time....and lots of patience and deep breaths !!

Thanks everyone again for your continued support !!

P.s> Dusty....I'm still thinking of you and Matt !!
04-05-2011, 07:36 AM   #50
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Hey T!

Thanks for the update hun......

I hope all turns out just fine for Gabs. Please keep us posted about her pulse rate and pain. This is such a difficult time for you all T and it's no wonder you are having anxiety! I guess the only thing I can say about the second guessing is the one thing you never need to second guess about is the surgery itself, no matter what happens now it is far better than the outcome of severe Crohns continuing to go on untreated.

We are here for you T and boy oh boy are you doing a fab job Mum! You are not alone on your roller coaster ride!

Sending MEGA hugs to you and Gabs and that great big beautiful smile of hers......



Loads a love,
Dusty. xxxxxxxx
04-05-2011, 11:26 AM   #51
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T - Thinking of you all. I'm sure you are keeping an eagle eye on Gabs. I'm with you and home care nurse on calling in if things don't improve.

Don't second guess! You have done the right thing for her and she is going to coming through this. I will tell you from a big surgery I had (with complications) that the shaking and sweating is not exclusive to GI surgery. I have no doubt that the food plays a role. If she is still taking pain medication (which I'm thinking she would be yes?), that will make you do that as well.

Love you all and know that you remain in our prayers. Please keep us posted as you can!!

J.
04-08-2011, 11:58 PM   #52
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Just thinking out loud here a bit....

I received a call from Gab's pediatric GI doc yesterday, (well her nurse). I didn't get a chance to answer so I listened to the voice mail later. She said DR just wanted her to give us a call and see how Gab is doing, and whats been happening lately, etc. WE haven't been to this doc since mid January when I began taking Gab to the Mayo clinic instead. This ped GI has been in charge of Gab's Crohn's health since she was 9 years old. She was the first one to suspect she had it, but would not "label" her just yet. She treated her then with Asacol and prevacid and Flagyl (if I remember correctly) at 9 for "just in case" due to her upper GI and colonoscopy showing granulomas throughout her mouth, esophogas, stomach, duedoem (sp?) and illeum. She stated then that this is typical of Crohn's but not specific enough.
Anyhow, after almost a year of these treatments Gab became symptom free and all meds were stopped. Then in Dec of 2008 Gab was hospitalized for severe Mono and viral hepatitis. She was literally as yellow as these cuties...
At the time I informed the docs that Gab started in July of that year with severe mouth sores, extreme fatigue and muscle aches. Her GI said well this could be Crohn's rearing its ugly head after all. She ran a few blood tests and then said..nope...not Crohn's .. lucky her!
that is when our downward spiral began for the next two years. I took her to specialist after specialist because the "mono" never went away. All her blood markers kept showing active EBV and CMV both together ! All docs found this very strange that she had BOTH viruses at once that cause MONO.... and were not lessening even 8 months later. I KNEW It was NOT mono anymore but no one would listen. Eventually we ended up at a pediatric Oncologist in fear from another doctor that she had leukemia and needed a bone biopsy asap. Thank goodness this guy was so smart and said NO Leukemia and quickly consulted with the other GI docs at Arnold Palmer Childrens where he was working; then sent us back to her original ped GI. Within 2 weeks of returning to her original doc she was officially diagnosed with Crohns.
We completely trusted this doctor, as like I said, she has been treating Gab since she was 9 (and now 17 by this point), and went along with whatever she said.
She started her on low dose prednisone, omneprazole to see how that did. IT didn't. then she suggested trying 6mp to begin and then begin tapering off the prednisone. Meanwhile while we were experimenting with these meds Gab continued to get worse. She was never able to even lower the dose of prednisone, even after being on 6mp for 6 months, and having the dosage raised several times.
Then in december of 2010 Gab was hospitalized again for 8 days. That was when they first believed she had a stricture, abscess and partial blockage. Because of her being close to turning 18, no surgeon wanted to touch her...not even insert a drain for the abscess. They quickly loaded her with very high dose IV steroids, antibiotics and pain meds.... then released her and said eventually she would have to have 'elective" surgery. ( in my mind that meant....wait till she's 18!)
Obviously,I did not wait and got her into the Mayo clinic and .. well we know the outcome of that now.

WEll....my point of this ??
I have yet to respond to the request of her pediatric GI's phone call to check on her yet. Even though she is one of the nicest and most caring physicians I have ever met....I can't help but blame her and be angry with her. I, and Gab too, have discussed this and we are both somewhat angry (to say the least). We just can't help but wonder if she actually took Gabs case serious enough...or....she just isn't educated enough on Crohn's disease and should have admitted it much, much sooner and let us move on...or even suggested we did.

I guess I am just wondering this.....would any of you even bother to give a "courtesy" call back to the office and fill them in ? On one hand I want to talk to her and let her know just how bad this disease really is and how horribly it has taken over my girls life. I want to educate her. But, I feel like if I do that I am letting her "lack of education" off the hook, just to make her feel better! And...I don't want to end up being rude on the phone.

Like I said, this dr. is very caring, she really is....but the bottom line is ...she is a pediatric specialist who treats Crohn's disease and NEEDS to understand that she needs more education or she needs to not treat children with this disease. She should humble herself enough and care enough about the patient to point them in a better direction.

What would you all do ? Would you call back ? Or would you just let it go so that you don't take the chance of "going off" on her ?

I'm perplexed .... LOL

Sorry so long and I rambled a bit !

I would appreciate any input though as this has been weighing on my mind all day!
04-09-2011, 12:51 AM   #53
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I would ring her and let her know exactly what happened to my daughter and that this didn't happen overnight.

I know emotions can be difficult to control under these circumstances and if you have trouble controlling them on the phone then I say......so be it. Gabs and yourself have been to hell and personally I don't think your back yet. Let the emotions flow, I know and you know you can't change the outcome now but why shouldn't you speak your mind.

Doctors need to understand that complacency and pride affect peoples lives outside of the surgery. I understand and hear you about the her being nice and caring and I don't want to sound harsh but it didn't get Gabs anywhere. Perhaps if you speak with her and explain to her the time line of events and where you now find yourselves maybe, just maybe she will be more vigilant in the future and not allow this to happen again. I'm sorry, if she is a paediatric GI then lack of education doesn't even come into the equation. There should be no excuse when Crohns has been thrown around in the past.

As to the admission in December, well they should all be thoroughly ashamed of themselves. I'm a bit of a letter writer when the mood takes me so they would receive one from me!

Okay so Sarah had a different lead up to her diagnosis and I can see where Crohns, well until the last month or so, wouldn't have entered into their thoughts. None the less I did let the doctors know my "thoughts" about the whole thing. I do believe that Matt being diagnosed so quickly was because his sister has Crohns BUT I also believe a big factor in them racing around like blue arsed flies was because I let them know exactly what I thought at the time of Sarah's diagnosis and how their inaction had impacted on her.

In case after all my rambling you didn't get the message T......ring her and give her an answer to her enquiry......"Hi doctor, just returning your call about how Gabs is doing"......

Much love and many hugs,
Dusty. xxxxxxxx
04-09-2011, 06:13 AM   #54
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Hey T, you could call after hours and leave a message as well. That way you could say what exactly you feel w/o emotions taking over. I'm not as level headed as Dusty so I know if I spoke directly to the doc and things began to get heated (which they probably would in your case), I would lose my ahem rationale and fail to make the points she most needs to hear. I do agree though with Dusty, the doc needs to hear you. It may help someone down the road.
04-09-2011, 09:50 AM   #55
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Hi T,
I am in kind of the same boat. I ran out of Pentasa and thought I had refills so called the pharmacy. I didn't so they called the old doctor and he told the pharmacy that he would have to see Lucas for prescription refill next time. We have not seen or heard from him since early Jan. when his office was setting up an ultrasound for Lucas...we are still waiting for this appointment. What I really want to do is call the office and rip their heads off, but have been controlling myself.lol Like you, I fear i will get too emotional and not get my point across. Honestly, with my doctor, I don't think it would matter. He is a bit arrogant and does not like to be questioned or challenged, so why upset myself? If you think a talk would make a difference how she approaches other patients, by all means call and emotions be damned. Its tough because you have had a relationship with this doctor and trusted her to do her best for Gab and she didn't. Good luck with this decision and let us know how it goes.
04-10-2011, 12:59 AM   #56
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Thanks you guys for your thoughts and opinions! I figure I have the rest of the weekend to sort out my feelings. I am considering requesting a copy of her medical records from the surgery, making copies, and then possibly mailing them out to her previous doctor with a personal letter. Then...I can get my point across without "loosing my cool". LOL

On another note...
the home nurse came out for another visit today. The sole purpose for having them is ostomy care only ( and they check her vitals once a week...whoopie). So they pretty much stood there while Gab attempted to change her wafer on her own. Keep in mind..my Gab is very shy with strangers....she was trying to tell them that she thought it needed to be cut to a smaller size the last time, and again this time. They proceeded to tell her no it doesn't. So when she took it off today there was visible irritation and a small amount of blood. I told them this is and was my biggest fear. I/we had no idea what to do if this were to happen, and now it has, so what do we do ?? His response...."this bothers me seeing that much redness around the stoma so I want you to call her doctor on Monday and get in to see them" What ??? thats it ??
Soo...they leave and within an hour the wafer is leaking all over Gabs clothes and she is crying and back to anxiety issues and stating how horrible and disgusting this all is and ...well....just very emotional. I talked her into taking a shower without anything on it to clean it well ( she didn't want to at all but did it for me) It looked much better after the shower tho.
Then...we go to put on a new appliance and realize the size of the hole was way too big! We told them this...uggghh. So then we spent the next half hour trying to re cut a new one, and realizing it needs more of an oval shape than round, so there's another challenge. By the time we figure this out...3 wasted wafers and sticky rings later....we (think) we accomplished it!
I knew there was going to be a lot of trial and error, and mistakes made...but those were supposed to be happening AFTER we no longer had home health care to "teach" us.
I guess I am just venting and so frustrated at the lack of competent nurses we have been assigned.

But, at the same time....We definitely learned a lot today! (unfortunately at the expense of very costly supplies !, and making the stoma site much more sore than it was before) She hasn't had a pain pill in almost 3 days until after they left her today...now she's had 2 already this evening !
Uggghhh....this roller coaster ride is getting harder!
I know we'll get through it stronger than ever tho!
Just venting I guess LOL.

I know most of the parents on here don't have kids w/ stoma's but hey....if you do someday you know who to turn to for some advice while you're learning ! I should change my screen name to bad-ass-ostomy-momma !! LOL

Have a great evening everyone !!
Thanks for being here for us ! I appreciate it soo much ! There really is NO ONE else in my life that understands.

On a positive note tho....one of Gabs best friends was here for our "learning process" and watched the entire thing, and asked appropriate questions, and comforted Gab in such a special way. She needs that and I am in awe of her friend for being so mature!

and @ Dusty....I am so flipping happy that you can NOT compare notes with me on this !! You just don't even know how that makes my heart sing !!
04-10-2011, 02:03 AM   #57
Keona
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ROFLOL..

ostomy-mama ...haha
wow... I just read this entire post. I have to apologize about skipping over the SBS for selfish reasons... Im just not ready to learn about that yet.
You mentioned T in your post that you think you all should have honorary medical degrees by now...and I wholeheartedly agree with you.


You have a very strong young woman T. I think how she is reacting is absolutely normal and I think anyone would react in the same way. It really made me smile when you spoke about her back to her sarcastic ways
Im not really sure what to say. I don't know what Gab was like before the posts began...what her symptoms were, etc... but I am amazed at how some people can have absolutely no physical pain/symptoms but blood values are out of whack and vice versa... what an insane disease...
I hope you get different health care aides... it would be difficult for an 18 year old to begin with .. but to not be listened to and then have it leak everywhere?? I would be horrified as well!!
I am glad Gab trusts and loves you enough to do things for you... eating, showering and whatnot.

Anyhow... I am still trying to orient myself to what is going on with Gab...
I hope you keep everyone posted with what is going on with Gab and also YOU!!
How are YOU doing? I know that people who are caretakers to others ..it is exceptionally stressful... I studied it a great deal in school and the importance it is that you do self-care as well.. please, please take time out to do some.. weather it is to treat yourself to go to a spa or what have you... I know it is hard for me to suggest since I am not in the same position but you wont be any good to anyone if you get sick.
Anyhow... I am done my blurb now I do wish you and Gab better days...
I am also sending all my positive thoughts your way...
I am so amazed at the resilience and strength of some people...

you both will get through this
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Dx Gastritis & hiatal hernia Feb 2010
Dx non-definitive Crohn's June 2010
Dx Endometriosis April 2011

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Last edited by Keona; 04-10-2011 at 02:08 AM.
04-10-2011, 03:38 AM   #58
DustyKat
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Vent away T!!!

Letter writing is very effective and therapeutic at the same time, so win/win!!! Crack those knuckles and get writing T!!!


Oh man T that sucks about the nurses, it's just not good enough. They are there to support Gabs not tell her something they know shit about, you both live this 24/7 not them! If they don't have the balls to admit that she is right then they need a kick up the backside......

Can you ring their office and tell them that you aren't getting the support you were lead to believe you would receive??

Don't worry about the pain pills hun, it's not a setback and if they help her get over this crappy episode then more power to the pills!

Oh wow, what an incredible friend she has! Gabs is an absolute gem T and she is certainly surrounded my many jewels and you are the biggest of them all!

and @ Dusty....I am so flipping happy that you can NOT compare notes with me on this !! You just don't even know how that makes my heart sing !!
Thanks mate, I know you are over the moon for us as I would be for you if our roles were reversed.

Haha, are you lovin' the emoticons!

Take care my friend,
Dusty. xxxxxxxx

Last edited by DustyKat; 04-11-2011 at 07:36 PM.
04-11-2011, 06:07 PM   #59
troydanielbecker
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Location: Houston, Texas
About calling or following up with a doctor who sort of failed you in the past, I agree with what others have said. Did you do anything yet? I want to add that you sort of have a chance to do what happens far too seldom in the medicine field, which is to bridge gaps and help a doctor learn based on real cases that usually get moved to a specialist or otherwise someone else. When that happens, general doctors can lose out on learning from their experiences. So even though the doctor failed you, you have a good chance to explain what happened and maybe help improve the doctor's real-life education for future patients. Don't get me wrong--I don't mean to belittle your experience or turn everything into "the betterment of future healthcare", but it seems like a good sign to get a call from a doctor seeking follow-up information. And you have tons of follow-up information that can really help people like me who are in similar situations but so far further back on the path. And I would appreciate that if at all possible. Of course it's too bad that it's like that, but it is, and any way we can spread the word and improve IBD awareness, even if it is with our own doctors, I say we do it.

On the other hand, don't let me hijack the thread. Thanks for sharing and please keep up with the updates.
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04-11-2011, 11:45 PM   #60
Crohn's Mom
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Here we go again....

Gab woke up today and I immediately noticed she just didn't "look" well. She claims that she feels "ok".
By this evening tho she is having pain in her stomach, and she is very bloated. Her "prednisone face" that was nearly gone...is much bigger this evening; (she is only on 10 mg. right now and due to drop to 5mg tomorrow...so I know it's not the prednisone)
Also, she weighed, as she always does first thing and she had put on 5lbs over night. This concerned me but she says...oh mom its cause I drank too much water and just ate ...
Well, I just had her get on the scale again because she looks "swollen" to me and she has gained 10 lbs today !! today!! WOW!!
I put a call into her docs this afternoon about the stoma site possibly being irritated/infected, but the nurse didn't call back before end of day. I KNOW I need to call the doc asap in the morning...don't worry...Im not trying to have you all diagnose for me I just want some opinions ??
She says she is urinating more today than usual, so I am so confused. My first thought was that her kidney is not healing itself after all; but now....arrgggghh....What else could be causing the bloating and pain ?? Any suggestions ?? Please ??

@Troy....I appreciate your post; and believe it or not...I completely agree with you. I haven't responded to her previous doctor yet, but I have decided that i will...and I will do it with grace. It's not going to do anyone any good now to blow up at her...it's not going to replace my daughters missing parts. I want to tell her everything that has happened and been done, along with the Drs. opinions and advice at the Mayo clinic now. Thank you for posting to me
And if there is anything, anything at all that I can help you with concerning your child's journey through Crohn's, please do not hesitate to ask!! Bless you and your baby

Oops...just realized it's UC still, my offer stands

Last edited by Crohn's Mom; 04-11-2011 at 11:49 PM.
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