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cupcakespinkgal

HealingWell Forum
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Member Profile
Display Name
cupcakespinkgal
Profile Created
6/14/2010 6:23 PM
Last Seen
11/8/2018 4:37 PM
Total Posts
1566

Last 50 Posts

Colectomy and NO MORE MEDICINE

I have Crohns disease. I had a total proctocolectomy and I am not on any medication. It will be 3 years in March and so far I've done great med free and no signs of disease have returned. My disease...

11/8/2018 4:36 PM

Ostomies
Wearing pants

I guess I'm the odd ball, I like to wear my bag outside my pants. Where most of my pants hit the waist fits right under my wafer. I like to wear pretty fitted pants and this is the most comfortable...

4/29/2018 3:29 PM

Ostomies
Scared to reverse ileostomy

I have Crohns and regret being reversed instead of making my ileostomy permanent. I think a lot depends on your disease, like location and periods of remission. My Crohns was always bad near my...

4/28/2018 12:28 PM

Ostomies
Who here has an ileostomy for life?

Mine is for life. Had the surgery at 38, just had my 2 year anniversary and life is good. Going permanent was the right decision for me....

3/25/2018 9:53 AM

Ostomies
Back end issues since rectum removed

I had a similar situation. My surgeon thought I was all healed down there and then about 3 months from surgery I had a little discomfort and it started draining fluid. I went back to see my surgeon....

3/4/2018 1:54 PM

Ostomies
medical supply stores??

I keep saying I'm going to switch but don't want to deal with getting it all setup. One company I am thinking about trying is Prism Medical Products. Small company. They only do phone orders. I like...

3/2/2018 5:37 PM

Ostomies
medical supply stores??

I use Edgepark too and have had the same experience. I like their website, my items come fast and as long as I don't have to call them everything is great. I had a billing issue end of last year...

2/28/2018 10:29 AM

Ostomies
Parastomal Hernia

No input on a hernia, but I'm going skiing this weekend. First time since surgery. I'm interested to see how I do since my core strength has never gotten back to presurgery strength....

2/21/2018 9:24 PM

Ostomies
Had total colectomy doctor said crohns was not in my small but will it return there

I have Crohns Colitis, diagnosis at one time UC, confirmed Crohns from pathology after my resection. I never had disease in my small bowel in the 18 years prior to surgery. Because of that my GI has...

2/12/2018 8:37 PM

Crohn's Disease
Humira + Methotrexate, has anyone experienced this?

I have been on Humira alone, double dose Humira alone, and double dose Hunira plus MTX. In my case any side effects I had were from the MTX, the only issue I had when on Humira was fatigue sometimes...

2/2/2018 8:04 AM

Ulcerative Colitis
Head cold and high output, what's going on?

Thanks Christine. I hope you are feeling better. I'm glad you dodged the hospital. Have you tried Drip Drop? I just learned about if from a fellow Ostomate. On a daily basis I still just use...

2/2/2018 7:44 AM

Ostomies
Head cold and high output, what's going on?

Thanks NSSG! UCWhat, that makes sense. Like any germs my body is attacking and trying to get rid of waste. Ironically the incessant emptying and full bag was worse than the cold :smilewinkgrin:...

2/1/2018 6:37 PM

Ostomies
Head cold and high output, what's going on?

Hey all, I came down with a cold yesterday and today I am having high liquid output. It's been almost 2 years since my surgery and this is very out of character. My stoma has a pretty regular...

1/31/2018 10:14 PM

Ostomies
potential additional diagnosis and questions about MTX

Short version is I was already too sick and adding MTX was a last effort to prevent or delay surgery. It helped enough for a little bit, it healed an ulcer in my rectum and I got to cancel my first...

1/22/2018 6:33 PM

Crohn's Disease
potential additional diagnosis and questions about MTX

I was on MTX injections for about 9 months, first with humira and second with Simponi. I did pretty well with the injection, I couldn't tolerate the pills. It slightly helped after a couple months....

1/19/2018 8:38 PM

Crohn's Disease
Sudden leakage issues with ostomy

We use the same products (coloplast protective seal rings and 2/piece Mio) I started having some leaks under the barrier a few weeks back. Two things helped. I found the protective seal ring wasn't...

1/6/2018 9:23 AM

Ostomies
Pooping Constantly after Reversal

I do not have any ideas or an explanation either. I experienced something similar after my temp ostomy for my resection. I even had 2/3 of my colon still and was going 20-30 times a day urgently,...

12/28/2017 8:00 PM

Ostomies
Cheers for NCOT!

Hey NCOT, I'm not on here as frequently anymore but sad to come on here today and see all that you have been dealing with. I hope you have some better days ahead and you have settled in....

12/18/2017 9:08 PM

Crohn's Disease
Stelara is working!!!

Research the strain bacillus coagulans, its the best probiotic for yeast. Diflucan is just treating /killing the yeast but not fixing the problem in your gut. I had horrible yeast infections after my...

12/10/2017 4:35 PM

Crohn's Disease
Ileo Rectal anastomosis questions

Sorry you are dealing with doctors and decisions again. I do not have an IRA. I had a colon resection with temp ostomy, then after takedown back to an ostomy. But from 2 decades of Crohns and what I...

12/3/2017 8:31 AM

Ostomies
Ileostomy question

Just answered your other post first. To edit that if they are removing your jpouch and anus to make the ileostomy permanent your recovery will probably be a little more like that of a...

11/18/2017 9:49 AM

Crohn's Disease
Ileostomy recovery

For just a colectomy/leave the rectum or proctocolectomy/rectum and anus out at the same time? Those who have just a coletomy are usually up and about and resuming normal activity quicker. My colon...

11/18/2017 9:39 AM

Crohn's Disease
Butt burn

I can't recommend this from personal experience since I never had a jpouch but I saw a lot of reviews for this product from jpouchers with butt burn when I was researching barriers for my ostomy. Ive...

11/18/2017 7:48 AM

Ostomies
Feeling hopeless right now!

I'll keep you in my thoughts. The decision and anticipation are the worst part I think. The best thing about my first surgery was I didn't have a choice. I was in the ER with a perforation and it was...

11/18/2017 6:51 AM

Ostomies
Feeling hopeless right now!

I was in the hospital 10 days. Longer than they anticipated but I was very sick and they did the colectomy, fistula repair, and rectum /anus removal all in one surgery. It took 2 surgeons. They...

11/17/2017 8:20 PM

Ostomies
Prestomal pain, one ulcer on the stoma itself

Awesome! So glad it was just a blip!...

11/17/2017 4:42 PM

Ostomies
Feeling hopeless right now!

The rectum and anus removal is one thing I think the internet makes worse. I knew I wanted my ostomy permanent and was not scared of the colectomy but I was so scared about the rectum removal. For...

11/17/2017 4:39 PM

Ostomies
Feeling hopeless right now!

It is not an easy decision and online can be good and bad. It's great for education and seeing others experiences, however remember with an ostomy and a jpouch usually the people that had...

11/16/2017 7:50 PM

Ostomies
Ok, now I’m feeling down

Not sure where you are but can you get some sunshine? The sun on my face really helped when I was recovering. At the time of my last recovery it was only about 50 degrees but my mom made me bundle in...

11/9/2017 7:58 AM

Ostomies
Prestomal pain, one ulcer on the stoma itself

It's nice to see a post from you post pouch removal. I'm glad you finally feel healthy. Hopefully that is just a pressure ulcer or minor injury. But I totally get your concern about the possibility...

11/6/2017 8:03 PM

Ostomies
Son needs ostomy due to perianal fistulae

Wow that is a lot to handle. But it sounds like this surgeon has a good plan. My crohns was always sigmoid colon and rectum. I think an ileostomy is the way to go. The surgeon is right, why risk...

10/29/2017 8:49 AM

Ostomies
Failing Stelara, Opting for Ileostomy

Wow for just one week post op it sounds like you are doing great. It is Normal to be emotional or overwhelmed, it is so early. Even knowing you feel so much better it is a big change to your body and...

10/24/2017 3:49 PM

Crohn's Disease
Convatec vs other brands

I prefer Coloplast. I use the Sensura Mio 2 piece with adhesive coupling. I like the moldable feature of Convatex but like you the wafer isn't the best for me and I also have issues near my belly...

10/24/2017 3:38 PM

Ostomies
Thick output with new ileostomy

I find leaving a little air in the bag helps with pancaking. When I empty I trap just a tiny amount of air in the bag, leaves room to help things drop. If you are using a pouch with a filter I cover...

10/24/2017 3:33 PM

Ostomies
Name of your stoma?

Bubbles is a cute name! Mine is named Bert, like a weird little brother. I love him but sometimes he is gross and annoying :turn:...

10/23/2017 5:59 PM

Ostomies
Failing Stelara, Opting for Ileostomy

Awesome! I'm so glad it went well and sounds like you are in good spirits! Isn't it amazing how much better you can feel even while recovering from major surgery. I do not like one pieces. I prefer...

10/23/2017 3:35 PM

Crohn's Disease
Son needs ostomy due to perianal fistulae

HAS your son so Crohns ever been in his small intestines? Is the crohns disease ever in his colon in other places besides the rectum? Did his doctor recommend one over the other?...

10/23/2017 3:25 PM

Ostomies
Question about reversal?

Did you have a resection of your colon or small intestines? That is a little different than waiting for jpouch takedown. I had a colon resection with temp ostomy and at one point when a spot of...

10/9/2017 4:01 PM

Ostomies
Failing Stelara, Opting for Ileostomy

Plucky I am so sorry!! Hopefully your colon doing a little better helps out during this time. I'll pray your husband has a smooth recovery. Also thankful this didn't happen while you were already in...

10/6/2017 4:59 PM

Crohn's Disease
Failing Stelara, Opting for Ileostomy

Ha I know exactly what clo means about not suppose to swish! Some use a squirt bottle to squirt water in the bag and clean it out better. My ostomy nurse gave me a squirt bottle in the hospital but...

10/4/2017 4:17 PM

Crohn's Disease
Blood transfusions during surgery and immunosuppressants.

I wasn't on medication during my surgery when I got blood. However I have received blood when hospitalized for a bad flare and one of the times I was on Hunira and the other time I was on Simponi. I...

10/4/2017 4:04 PM

Ostomies
Failing Stelara, Opting for Ileostomy

That's exciting, sounds like you are ready! I wear the Coloplast Mio. It s by far my favorite of all the appliances I tried! Good luck with surgery and recovery!...

10/3/2017 7:00 PM

Crohn's Disease
Scar tissue or hernia pain?

Thanks clo!! Reading your post sounds like exactly what I have going on. It was bothering me like a month ago, disappeared and now it's back. I have been exercising more so maybe I strained...

10/3/2017 6:35 AM

Ostomies
Scar tissue or hernia pain?

I recently started having an irritated feeling in my lower right abdomen, almost groin area. At first I was concerned about a hernia but I don't see anything and the feeling comes and goes. Anyone...

10/2/2017 12:26 PM

Ostomies
Acupuncture and/or chiropractic treatments

I have not tried either one, but I do use some specific yoga moves and breathing that really help me with stress and reaching a more calm place. The one that works best for me is Legs Up a Wall and...

9/30/2017 7:29 PM

Ostomies
Failing Stelara, Opting for Ileostomy

Our stories sound similar. I was UC scheduled for jpouch surgery, surgery canceled and officially Crohns Colitis. My disease was always in the colon and rectum, only figured out Crohns because of...

9/28/2017 4:06 PM

Crohn's Disease
Back in the Hospital

Clo - it was specific to ileostomies, I think because colostomies are more common and sometimes ER staff treat all ostomies the same. There are things like irrigation and laxatives that are ok for...

9/21/2017 3:50 PM

Ostomies
Back in the Hospital

Oh geez, a radiologist has never seen a jpouch. I remember my ostomy nurse giving me a list/instructions of things not to let ER staff or doctors do if I end up in an ER that isn't used to...

9/20/2017 6:46 PM

Ostomies
Pain doc taking meds away said no more for gi patients

Barbz - I think we may have had our surgeries at the same hospital, if I'm remembering correctly maybe I'm wrong. Were you at Barnes? Is this doctor there? I haven't been at the hospital since my...

9/20/2017 6:34 PM

Crohn's Disease
Irritated around stoma- call the ostomy nurse?

Did you have a leak at all or was that area dry? Just red and irritated? Even if it seems minor the ostomy nurses usually have good tips to help heal skin. Do you have any stoma powder or barrier...

9/19/2017 4:11 PM

Ostomies
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