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Kaycie

HealingWell Forum
>
Member Profile
Display Name
Kaycie
Profile Created
1/30/2006 7:45 PM
Last Seen
10/7/2013 7:24 AM
Total Posts
449

Last 50 Posts

Imuran Side Effects?

Those of you on Imuran can you talk to me about the side effects? I've been on 200mg for about a week now. I started it with a small cold and cough and the cough is just nagging on. I just feel off....

9/27/2013 6:18 AM

Crohn's Disease
Shaking arms and hands. Really worried.

I shake while on prednisone as well. On it now. It's a horrible feeling. I also have Xanax now to take and it calms me down. Prednisone can cause anxiety too. Our systems go through so much. :(...

9/17/2013 6:30 AM

Crohn's Disease
Imuran

Thanks Skyla. Tysabri will remain as a last ditch effort for me. I hope it's working for you though. I'm just struggling for answers. This is my 3rd flare and it always seems to come back so...

9/17/2013 6:28 AM

Crohn's Disease
Imuran

This is helpful. At least more helpful than what I have found so far. My fear is if I decide to have another child because during my pregnancy I had twins, one of which who had cloaca, an extreme...

9/17/2013 5:22 AM

Crohn's Disease
Imuran

It does indicate that kidney transplant patients (which those people were whom the drug was originally indicated for) had a higher chance of non Hodgkin's lymphoma. But it did indicate that IBD...

9/16/2013 5:22 PM

Crohn's Disease
Imuran

Thanks. That was a tough decision 4 years ago when my daughter was only 1. But the best decision I ever made. I will admit I'm disheartened to live with an ileo for life because if I had to choose I...

9/16/2013 11:03 AM

Crohn's Disease
Imuran

And I should note some of the reasons surgery isn't such a big deal to me is because I don't mind an ostomy bag. And over half my remaining colon is diseased. I don't need it. Why hang onto it....

9/16/2013 10:17 AM

Crohn's Disease
Imuran

I have most likely built antibodies to Remicade based on my history. He's willing to do the test but given they doubled the dose and increased frequency and I still failed. It's pretty obvious it's...

9/16/2013 10:14 AM

Crohn's Disease
Imuran

And I am. Which is why I'm struggling badly with the concept. I'm obviously looking more long term now with my health as opposed to when I was originally diagnosed and it was more immediate....

9/16/2013 9:43 AM

Crohn's Disease
Imuran

I've already some the TMPT metabolic test. So it's a matter if I want to take it or not and he's giving me the option. But placing a known carcinogen into my body is frightening to me. And the fact...

9/16/2013 9:27 AM

Crohn's Disease
Imuran

I need some sound advice. It's been awhile since I've been on this board. History: Dx with Crohn's Colitis November 2005. I was placed on Rowasa Enemas and Entocort and later switched to Colazal and...

9/16/2013 8:43 AM

Crohn's Disease
Going from Colostomy to Temp Ileostomy/possible J-Tube?

I have a chronic Abscess (11+ months and counting) 1/4" from my current Colostomy site that won't heal. It can't heal. It's trapped under my wafer and my stoma nurses and surgeon are baffled. I've...

3/12/2013 7:18 AM

Ostomies
2-fold GI said I will either need take-down OR rectum removed, & Fibercon and ostomies?

2 questions. First, I met with a new GI (My old one moved, but I'm happy with this new one..he specializes in people like me). That said, he asked why my surgeon left the rectal stump in. There is...

11/15/2009 9:16 PM

Ostomies
How did you rate your after care when you had your ostomies done?

Call your surgeon if the ostomy nurse isn't helping with the skin breakdown! I did and they gave me a few tips, then I got tired of useless info from my ostomy nurse (she told me I couldn't irrigate...

11/15/2009 9:09 PM

Ostomies
Underwear? - Ladies

boy shorts or the hi-cut briefs work the best. And, sad to admit it, BUT..maternity underwear ain't too shabby either! It's all I could wear for a long time after the surgery because of the...

11/15/2009 9:02 PM

Ostomies
Has anyone had the swine flu/H1N1 vaccine yet?

Me & my daughter and my husband will not be getting the h1n1. For one, it's dispersment IS being mishandled. For two, I don't trust the research available at the moment. Yes, it's there, but in order...

11/14/2009 6:54 AM

Crohn's Disease
Not digesting Asacol?

HI there, It's been a while since I've been to this side. I've been dx for 4 years and in May had a partial colectomy to remove my sigmoid and most of my rectum. There is a small "chance" for a...

11/13/2009 10:39 PM

Crohn's Disease
Traveling via airplane with ostomy supplies?

Sami's mom - How embarassing for them to do that! Oh well, I don't care if they make me show them the bag. I'm not too worried.. I just want to make sure I can keep it in my carryon. I took twice as...

10/19/2009 10:22 AM

Ostomies
Traveling via airplane with ostomy supplies?

Is there anything special I need to know? I also have several prescript ion bottles but I simply put those in a plastic baggie. Do I need to remove the prescript ion bottles and not let them go...

10/19/2009 7:34 AM

Ostomies
Need Support

I picked up on what you are talking about. I don't know the reasoning why...but having had to make incredibly difficult decisions while in that condition is very overwhelming and difficult. Rest...

10/11/2009 12:11 PM

Crohn's Disease
Inflammation of the Small Bowel & Mesentery?

I sure hope so! I do have to get scoped, but this reassures me this may of just been an "incident" I'm now on Asacol as a preventative too, so maybe I just needed a little extra since all I was on...

10/11/2009 12:05 PM

Crohn's Disease
Inflammation of the Small Bowel & Mesentery?

The surgeon swears it's not though because all my blood work is normal? Can your bloodwork be normal and you are still flaring? I'm just at a complete loss. And, what I meant by Remicade causing...

10/9/2009 6:45 AM

Crohn's Disease
Humira never seemed to work

Humira & Cimzia are similar to Remicade. So, it's highly possible it won't work, but you certainly have to try. I was actually told 30 days for Humira to show SOME improvement (obviously not all). I...

10/8/2009 7:15 PM

Crohn's Disease
Inflammation of the Small Bowel & Mesentery?

Ok, here's the scenario.. Dx with CD 4 years ago. Failed all the lovely drugs (I think in my siggy), including Remicade, Aisle 12, Humira, and refused Tsyabri (No Cimzia because of reaction to...

10/8/2009 7:01 PM

Crohn's Disease
What to do about trapped gas?

I took 2 gas-x and have a heating pad on. This gas pain is nearly crippling. I have either flared back up with my Crohn's or I may have just had a stomach bug, but ended up in the ER on Sunday early...

7/21/2009 6:20 AM

Ostomies
GAH! Still no bowel movement! 48 hours later..

Yup, it's moldable, and I now remember the Convatec lady telling me it would turtleneck. My stoma (since Sunday) seems to be varying in size all of a sudden though...hmm... I'm sure this new wafer...

7/15/2009 11:44 AM

Ostomies
Which doctor does followup for j-pouchers?

I knwo it's different, but I have a colostomy bag. I get regular check-ups with both. I will eventually move to 6 month check-ups with the surgeon and either 6 month or 1 year with the GI. For now...

7/14/2009 8:55 PM

Ostomies
GAH! Still no bowel movement! 48 hours later..

I posted a post a little ways down.. still no bowel movement... It's been 48 hours.. no pain, I'm drinking miralax again, I'm STARTING to pass little hard nuggets...about 5 or 6. I hope that the...

7/14/2009 8:08 PM

Ostomies
No stool after 36 hours after partial blockage?

I have been like clockwork for a few weeks - every evening after dinner it would fill up. I'd usually change it in the morning, or in the evening if it was more than 1/2 full (I use disposable bags)....

7/14/2009 8:22 AM

Ostomies
Sudden cramping followed by loose stool?

THANK YOU Cecilia! I was thinking the same.. And, based on what I saw in the opening of the bag, it looked a little orange. (I ate carrots again today, so lets hope I don't have trouble tomorrow :(...

7/12/2009 6:18 PM

Ostomies
Sudden cramping followed by loose stool?

My bag filled rather fast all of a sudden (end of my descending colon colostomy - i still have much of my colon - just lost the last 18 inch), before that I had what I *thought* was some really bad...

7/12/2009 5:48 PM

Ostomies
Question if you keep emergency supplies in your car....

I kind of have it everywhere. My daughter is 23 months, so I keep some in her diaper bag. I also have a convatec bag that I will throw in the car if I'm going out for most the day. I have yet to...

7/11/2009 8:22 PM

Ostomies
low carb lifestyle--anyone?

No, though I considered it because I have polycystic ovaries and low-carb or diabetic is the way to go. Because the increase in fibe ris what has worked for me (I was struggling with firm stools...

7/11/2009 8:11 PM

Ostomies
Question for my lovely Ostomates....

Hmm..have you used the Eakin seal? Is that what you are referring to as the barrier? I use both the stomapaste and eakin seal and it builds a nice firm wall around the stoma...I also put stomapowder...

7/9/2009 1:03 PM

Ostomies
Partial Blockages?

Sue - my surgeon advised me to eat lots of fiber and drink water. Now, don't go and get 30g of fiber on an 1800cal diet, but I'm on a 1500cal diet with about 16-20g. Also SLOWLY build up... like 5...

7/9/2009 12:16 PM

Ostomies
Blockage or Flu?

I have no idea, except maybe call the doc and get a CT scan if you are that worried. Could you try some miralax? You may just have gas that is built up and needs to move.. I get like that sometimes.....

7/9/2009 10:38 AM

Ostomies
Partial Blockages?

Thanks Cecilia! Yes, Eakin seals ROCK! It acts like a turtleneck around the stoma...no more skin irritation! I use paste and a small bit of the seal and wow! My stoma is only about 1" so it's not...

7/9/2009 10:37 AM

Ostomies
Partial Blockages?

SO supposedly, I've had this before and I was crippled over in pain. What I'm wondering is yesterday I felt some discomfort, not really pain, and so I drank 2 things of miralax (colon surgeon said I...

7/9/2009 9:35 AM

Ostomies
Does stomahesive BURN?

Ok, that is good to know! Makes sense. I'm waiting on a few more products so hence why I'm trying to deal with it. I did take a little pain medicine because it got bad... its much more controlled...

6/29/2009 6:30 PM

Ostomies
Does stomahesive BURN?

I have some skin irritation I've been battling. I have decided to try the Eakin seals, but still waking on them (durable medical equip place has them back-ordered and my samples arent here yet). Ok,...

6/29/2009 4:56 PM

Ostomies
HELP

I don't understand what you mean separating...is the skin breaking down around the outside of the stoma? Are the stitches coming out prematurely?...

6/26/2009 7:04 PM

Ostomies
Calmoseptine...desperate attempt! Plus, hernia question.

Cecilia - the burning is GONE today....I'm thinking about leaving this wafer on until morning and then changing it again, that'll be about 36 hours. I know with irritation you need to change more...

6/26/2009 6:49 PM

Ostomies
Help - Going into emergency surgery for charkot disease - but how do I empty in bed?

Can you move to a disposable system during that time? If insurance causes issues, get your doc who has done the surgery to contact them about it. My insurance covers disposables and I don't know how...

6/26/2009 8:23 AM

Ostomies
Ladies - your cycle and your ostomy?

Liza - piggyback away! :) I ended up going through 4 bags yesterday and 3 today. I'm certain it has to be similar. Your GI track is affected by your cycle. I guess I should mention that they also...

6/25/2009 6:14 PM

Ostomies
Calmoseptine...desperate attempt! Plus, hernia question.

Well, I'm dealing with bad skin irritation, so wondering more about the Eakin seal, I called Convatec since I already use most their products. I figured they manufacture this stuff, so maybe I'm...

6/25/2009 6:02 PM

Ostomies
Ladies - your cycle and your ostomy?

Before the colostomy, whenever I'd get ready to start my period, I would back up and be constipated for about 3-4 days before and then once I started my period, the flood-gates would open, so to...

6/24/2009 7:25 AM

Ostomies
Skin irritation..again... stomapowder versus milk of magnesia... versus eakin seal?

Sue - Mine doesn't get wet as I have the wafer and then a protective sticky white part around it, so I know it's not that....as I still shower with the bag. I have used q-tips to get the milk of...

6/23/2009 8:56 AM

Ostomies
Skin irritation..again... stomapowder versus milk of magnesia... versus eakin seal?

I could use some help here. I'm starting to change my moldable 2 piece system every other day. My skin continues to break down. I realize that the stoma heals pretty darn fast. My stitches came out...

6/23/2009 7:33 AM

Ostomies
Quick Question - Getting off of pain meds?

I'm sorry to barge over here. You guys helped me a few months back when I was on lots of pain medicine. I just had a colostomy (because I have Crohn's) and I'm doing VERY well.. I have zero pain at...

6/8/2009 7:56 AM

Chronic Pain
Colostomy ?

Never thought of that! I'll check with my surgeon tomorrow. He doesn't like colace long-term, but maybe until I get regulated it'll be ok. I pulled up the list of foods that help to thicken, loosen,...

5/28/2009 5:16 PM

Ostomies
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