Comments on: My Tongue VS Surgery: Round One http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/ Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Thu, 09 Feb 2012 01:41:43 +0000 hourly 1 http://wordpress.org/?v=3.3 By: Moncler jackets http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-12574 Moncler jackets Fri, 12 Nov 2010 11:22:11 +0000 http://www.jpouch.net/?p=1591#comment-12574 <strong>...</strong> Cheers for your facts. Greatly appreciated.... …

Cheers for your facts. Greatly appreciated….

]]> By: Tabatha Ruhland http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-5880 Tabatha Ruhland Wed, 25 Nov 2009 12:13:57 +0000 http://www.jpouch.net/?p=1591#comment-5880 Hi there, I have just stumbled upon your site browsing on Google as I am researching some information on yeast infections. Looks like a cool site so I have bookmarked your site and intend to come back tomorrow to give it a more indepth read when i have more time. Thank you. Hi there, I have just stumbled upon your site browsing on Google as I am researching some information on yeast infections. Looks like a cool site so I have bookmarked your site and intend to come back tomorrow to give it a more indepth read when i have more time. Thank you.

]]> By: Brevin http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-5435 Brevin Fri, 25 Sep 2009 22:20:50 +0000 http://www.jpouch.net/?p=1591#comment-5435 Hi Kimberly! The docs at UCSF were pretty convinced that even if I got the j-pouch surgery and my immune was back on track, I would have those huge cracks (fissures) forever. Well, they were wrong : ) My tongue looks normals again. It's weird to think what it used to look like, and how I couldn't even eat a sandwich. But everything is back to normal! Do you have any immune suppressant meds? What's your situation? Hi Kimberly!
The docs at UCSF were pretty convinced that even if I got the j-pouch surgery and my immune was back on track, I would have those huge cracks (fissures) forever.
Well, they were wrong : )
My tongue looks normals again. It’s weird to think what it used to look like, and how I couldn’t even eat a sandwich. But everything is back to normal!
Do you have any immune suppressant meds? What’s your situation?

]]> By: Kimberly http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-5432 Kimberly Fri, 25 Sep 2009 18:27:35 +0000 http://www.jpouch.net/?p=1591#comment-5432 I HAD THE EXACT SAME THING HAPPEN TO MY TONGE! I AS A MATTER OF FACT AM GOOGLING "WHY DID MY TONGUE GET HUGE CRACKS" Really! It started with sores on either side of my tongue... then never looking at myself in the mirrow.... I the following week had to look because it was all over the middle. In the shape of a cap. letter I t or like the little t.... it was like the GRAND CANYON OF TONGUES.... MY KIDS LOOKED ONLY FROM ACROSS OUR BED NO CLOSER IT WAS SO FREAKY. FUNNY THING IS I JUST THOUGH I HAD ULCERS NOW ON MY TONGE... BUT I HAD NEVER EVER EVER HAD THEM IN THE MIDDLE OF MY TONGUE.... I THOUGHT ONE DAY SO I WALKED IN AND TOOK A LOOK ABOUT THE SECOND DAY IN THE EVENING AS IT WAS KILLING ME.IT LOOKED LIKE A FRESH EXACTO KNIFE GASH.. MINUS THE BLOOD....I WAS PRETTY SHOCKED THAT IS NOT WHAT I EXPECTED.. AMBASOL HELPS AND ALLOWS YOU TO AT LEAST EAT AND DRINK.... PUT IT ON ABOUT FIVE MINUTES BEFORE YOU EAT...YES IT STINGS, TASTE HORRIBLE. tears always!!! from the burning.. but know it is an anti fungal, and anti septic, anti bacteria!!! I would love to hear what it is.... because it did go away and did leave a huge very visable scar on my pretty smooth normal tongue! email me and I will send you a picture to give to the doctors as well;-) The canca sores come with every time I take vitamin c... every time... or folic acid... I HAD THE EXACT SAME THING HAPPEN TO MY TONGE! I AS A MATTER OF FACT AM GOOGLING “WHY DID MY TONGUE GET HUGE CRACKS”
Really! It started with sores on either side of my tongue… then never looking at myself in the mirrow…. I the following week had to look because it was all over the middle. In the shape of a cap. letter I t or like the little t…. it was like the GRAND CANYON OF TONGUES…. MY KIDS LOOKED ONLY FROM ACROSS OUR BED NO CLOSER IT WAS SO FREAKY. FUNNY THING IS I JUST THOUGH I HAD ULCERS NOW ON MY TONGE… BUT I HAD NEVER EVER EVER HAD THEM IN THE MIDDLE OF MY TONGUE…. I THOUGHT ONE DAY SO I WALKED IN AND TOOK A LOOK ABOUT THE SECOND DAY IN THE EVENING AS IT WAS KILLING ME.IT LOOKED LIKE A FRESH EXACTO KNIFE GASH.. MINUS THE BLOOD….I WAS PRETTY SHOCKED THAT IS NOT WHAT I EXPECTED.. AMBASOL HELPS AND ALLOWS YOU TO AT LEAST EAT AND DRINK…. PUT IT ON ABOUT FIVE MINUTES BEFORE YOU EAT…YES IT STINGS, TASTE HORRIBLE. tears always!!! from the burning.. but know it is an anti fungal, and anti septic, anti bacteria!!! I would love to hear what it is…. because it did go away and did leave a huge very visable scar on my pretty smooth normal tongue! email me and I will send you a picture to give to the doctors as well;-)
The canca sores come with every time I take vitamin c… every time… or folic acid…

]]> By: Brevin http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-4607 Brevin Sat, 04 Jul 2009 18:43:27 +0000 http://www.jpouch.net/?p=1591#comment-4607 Thanks, you're like a medical McGyver! I'm very to happy to say that since I had the ol' intestine removed and now have a J-Pouch (takedown in a week), I haven't had any mouth issues. I'm going to come back to this post when it flares up again, and I'm really glad that someone can relate. I remember not being able to eat an innocent, harmless Togo's sandwich. A silly samwich!!! Thanks, you’re like a medical McGyver!
I’m very to happy to say that since I had the ol’ intestine removed and now have a J-Pouch (takedown in a week), I haven’t had any mouth issues. I’m going to come back to this post when it flares up again, and I’m really glad that someone can relate. I remember not being able to eat an innocent, harmless Togo’s sandwich. A silly samwich!!!

]]> By: Sherry http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-4603 Sherry Sat, 04 Jul 2009 06:21:38 +0000 http://www.jpouch.net/?p=1591#comment-4603 I am 15 + years out from a total colectomy w/ J pouch formation due to UC. The whole time that I had active disease or when in "remission", some of the worst problems for me were w/ my mouth being sore. Swollen red tongue, canker sores, fissures---you name it. I couldn't eat, because of my mouth, not because of the colon issues. I lost tons of weight because all I could eat was plain white rice for a while. Luckily, I'm a nurse and my friend is a family doc so we started experimenting w/ different versions (of our own making) of the magic mouthwash. Here is the recipe. YOU NEED TO REVIEW THIS WITH YOUR PHYSICIAN to determine if this is a SAFE option for you and if so, an Rx would be required. Make a suspension of; 90 mls. of Benadryl Elixir, #4 (four) 500 mg tetracyline tabs, crushed, 20 mg of predinisone tabs, crushed and 30 mls. of Nystatin powder. Shake very well, swish and swallow (hold in mouth at least 2 min.) 1-2 tsp. every 4-6 hrs. until mouth improved. I know what your going through, and if you haven't already had something like this, talk w/ you docs. It was a miracle for me, and I got to where I only had to use it once a week. I did need for a while after the colectomy, but in time I didn't need it at all. Best of luck to you. S I am 15 + years out from a total colectomy w/ J pouch formation due to UC. The whole time that I had active disease or when in “remission”, some of the worst problems for me were w/ my mouth being sore. Swollen red tongue, canker sores, fissures—you name it. I couldn’t eat, because of my mouth, not because of the colon issues. I lost tons of weight because all I could eat was plain white rice for a while. Luckily, I’m a nurse and my friend is a family doc so we started experimenting w/ different versions (of our own making) of the magic mouthwash. Here is the recipe. YOU NEED TO REVIEW THIS WITH YOUR PHYSICIAN to determine if this is a SAFE option for you and if so, an Rx would be required. Make a suspension of; 90 mls. of Benadryl Elixir, #4 (four) 500 mg tetracyline tabs, crushed, 20 mg of predinisone tabs, crushed and 30 mls. of Nystatin powder. Shake very well, swish and swallow (hold in mouth at least 2 min.) 1-2 tsp. every 4-6 hrs. until mouth improved. I know what your going through, and if you haven’t already had something like this, talk w/ you docs. It was a miracle for me, and I got to where I only had to use it once a week. I did need for a while after the colectomy, but in time I didn’t need it at all. Best of luck to you. S

]]> By: Brevin http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-2767 Brevin Thu, 16 Apr 2009 22:38:00 +0000 http://www.jpouch.net/?p=1591#comment-2767 Here's an interesting link my sister found: http://doublecheckmd.com/EffectsDetail.do?dname=Remicade&sid=11846&eid=2508 This helps explains a LOT of my mouth issues. I stopped using Remicade 4 months ago when my tongue started kicking me in the face, and I'm glad I stopped then. I'm no doctor, but Remicade works for some people, just unfortunately not for me: all these side-effects actually helped make the decision to get the surgery. Here’s an interesting link my sister found:

http://doublecheckmd.com/EffectsDetail.do?dname=Remicade&sid=11846&eid=2508

This helps explains a LOT of my mouth issues. I stopped using Remicade 4 months ago when my tongue started kicking me in the face, and I’m glad I stopped then. I’m no doctor, but Remicade works for some people, just unfortunately not for me: all these side-effects actually helped make the decision to get the surgery.

]]> By: Lizz http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-2723 Lizz Mon, 13 Apr 2009 03:40:20 +0000 http://www.jpouch.net/?p=1591#comment-2723 Yay, partial nudey! Haha. It's a tough road, but I think you'll be glad you did it ;) My life is so much better now, after the surgeries. Still not perfect, but I can live it now! Yay, partial nudey! Haha. It’s a tough road, but I think you’ll be glad you did it ;) My life is so much better now, after the surgeries. Still not perfect, but I can live it now!

]]> By: Brevin http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-2717 Brevin Sat, 11 Apr 2009 19:16:07 +0000 http://www.jpouch.net/?p=1591#comment-2717 G'day Lizz! I'm hoping to do a little update post soon here on the site :) It's all a tad overwhelming, so I'm waiting for my mind to settle down. I now have surgery dates and details, and although I'm still horrified, I dare say I'm turning optimistic about all this. I hope to update the site soon, chock full of partial nudity pictures! G’day Lizz! I’m hoping to do a little update post soon here on the site :)
It’s all a tad overwhelming, so I’m waiting for my mind to settle down. I now have surgery dates and details, and although I’m still horrified, I dare say I’m turning optimistic about all this.
I hope to update the site soon, chock full of partial nudity pictures!

]]> By: Lizz http://www.jpouch.net/2009/04/01/my-tongue-vs-surgery-round-one/#comment-2713 Lizz Fri, 10 Apr 2009 22:06:07 +0000 http://www.jpouch.net/?p=1591#comment-2713 So how'd it go? So how’d it go?

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