My Tongue VS Surgery: Round One

by on Wednesday, April 1, 2009 20:21
This entry is filed under: Support Systems

Time flies. Back on February 6th, I posted on this site about how long the wait was to see the GI at UCSF, and then, in a desperate attempt at optimism, threw out some possible perks to having UC. In your face, optimism! Turns out all I needed was a billion distractions and BAM! I saw the GI at UCSF last week and she referred me to Surgery. My Pre-Op consultation is this Friday the 3rd! I’ll hopefully have a huge update then.
In some sick, medical twist on Hansel and Gretel, the GI at UCSF is starting to fatten me up. I’m gunning for a 2,500 to 3,000 calorie diet, with an emphasis on carbs and protein. This sort of works in my favor, since I’m secretly training for the World’s Strongest Man competition anyway and am planning on lifting a small European car (with all Options included) to impress my boss. Not really, but I tell myself that as I’m taking protein supplements to help with my diet.

My biggest concern right now is my mouth. I’ve been going to the UCSF Oral Medicine department to have it checked out, and the most common thing I hear is “we’ve never seen this”. While I doubt I’m some medical anomaly, I want to check in with the UC and J-Pouch community to see if anybody has experienced or heard about this:
I have massive cracks (called fissures) on my tongue. They are deep canyons that look horribly painful, but I actually can’t feel. What I can feel are little ulcers on my tongue. Yeah. My tongue then becomes inflamed, swells up, and I have trouble eating (which sucks when you are trying to gain weight). The folk over at UCSF have never seen my specific condition, but they think it’s a strong chance that it’s related to the immune suppressants. There are also signs of a fungus infection and my gums are very sensitive. They are not sure how to treat it though. I had a total of four experts huddle around my mouth, taking dozens and dozens of awkwardly close pictures. And then the students came in and took even more pictures. I expect plenty of gift baskets if these students get As on their term papers.

My tongue looks really bad and they think there might be permanent scarring. I was going to post a picture on this site so you can see, but my conscience won’t let me.

The last person who saw my tongue

The last person who saw my tongue

The Oral Medicine department is now working closely with the GI department to make sure that my mouth’s treatment doesn’t counteract any surgery developments.
Has anyone heard of this, or experienced it first-hand?

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18 Responses to “My Tongue VS Surgery: Round One”

  1. avatar

    Lizz says:

    April 1st, 2009 at 10:51 pm

    I have never heard of this specifically, but people w/ IBD have crazy things going on all the time with their mouths (among other areas). Very likely could be related to medicines. What are you taking and what does the GI say about your mouth?

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  2. avatar

    Brevin says:

    April 2nd, 2009 at 9:05 am

    I’m currently not taking anything until they check in with the GI on my dosages, but I was on Fluconazole and Dexametha-something-something mouthwash. It worked, but it didn’t get rid of everything like they thought it would so they want to up the dosage and slap me on a quick Prednisode dosage.
    When I showed the GI my tongue she started screaming in weird, ancient languages and these portals to netherworlds opened up in her office and … oh no wait, that’s what I doodled later on a napkin. She just said she hasn’t seen anything quite like that before, but is sure the surgery will have an impact on it and she’s gad I’m seeing the specialists at UCSF.

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  3. avatar

    Megan says:

    April 2nd, 2009 at 2:32 pm

    Hey Brevin, Nice to hear from you – we were wondering what stage you were at with doctors visits and all. I didn’t do research on this before writing this comment, but I do know from past research and such that UC/Crohn’s often have types of mouth ulcers. I know on Mark’s drs. visit they’d ask if he had sores in his mouth, etc…As for why yours are not like ulcers and the doctors seem stumped I don’t know. But you should do some research on mouth ulcers and IBD. Also, you may want to post over at http://www.jpouch.org and see if Jan Dollar or someone with medical experience has any insight for you.

    Did you see that Jamie is going to be bloggin on jpouch.net too. And another new blogger soon to join us Ricardo, also had has surgery on March 17 at UCSF. Aren’t we just one big happy UCSF family ?!

    [Reply]

  4. avatar

    Brevin says:

    April 2nd, 2009 at 7:54 pm

    Hi Megan,
    My pre-op consultation with Dr. Varma at UCSF is tomorrow, so I’ll post an update over the weekend that will hopefully include a surgery date. I was talking to Jamie about how weird and exciting it is to finally meet the surgery team, like a Blind Date. I would be nervous but I’m not buying flowers on the way in.
    One of the Oral Med specialists at UCSF (an older gentleman that looked like a wise owl) said he was part of a study where they tried to link mouth ulcers to ulcerative colitis, but they never found a distinct connection. Mouth ulcers is one thing, but coupling it with all the other mouth symptoms I have (fissures, hyper sensitive lips and gums, signs of a fungus infection of some kind) make me an unique case apparently. They check the mouth on all GI patients since, as the wise old owl put it, it’s just the other end of the same tube that needs fixin’.
    And yes, we should start a UCSF posse and go rumble against the Cleveland Clinic gang!

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  5. avatar

    Christine Chavez says:

    April 2nd, 2009 at 9:32 pm

    Hello Brevin just got to note, my husband Ricardo is a patient of Dr. Varma-Love her she did a terrific job taking care of my hubby while in surgery and after our consultation we were very confident in having her perform the surgery. Very nice Doctor with good experience and knowledge. There was another Dr. who was part of her surgery team, a young man, who also came and checked on my husband daily at the hospital very informative and nice his name is Dr. Vali. I wish you well and I hope you are just as pleased with the doctors as we were. All the best to you.

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  6. avatar

    Lizz says:

    April 2nd, 2009 at 10:46 pm

    Hmmm, maybe it is just a fungal infection then. Are they putting you on any oral anti-fungals?

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  7. avatar

    Lizz says:

    April 2nd, 2009 at 10:53 pm

    Also, have you had your blood levels checked? Sometimes deficiencies in B vitamins can cause mouth issues. Intestinal inflammation can prevent proper absorption of these, so I’d have that checked.

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  8. avatar

    Brevin says:

    April 3rd, 2009 at 12:34 pm

    The Oral Dept is checking with the GI Dept before any more meds are being prescribed. The blood levels have definitely made their rounds, so they are taking these into account.
    SUPER LAME UPDATE:
    My appoint with Dr. Varma was today at 12:30pm, not 2:30 like I had written down.
    Excuse my language but %$#@*!!!!! All that preparation and anticipation thrown out the window. On the positive end: it’s now scheduled for 8:30am this Wednesday, so there is a fast turn-around.
    It just sorta sucks to be mentally stoked for something and it doesn’t pan out.

    [Reply]

  9. avatar

    Lizz says:

    April 10th, 2009 at 3:06 pm

    So how’d it go?

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  10. avatar

    Brevin says:

    April 11th, 2009 at 12:16 pm

    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!

    [Reply]

  11. avatar

    Lizz says:

    April 12th, 2009 at 8:40 pm

    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!

    [Reply]

  12. avatar

    Brevin says:

    April 16th, 2009 at 3:38 pm

    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.

    [Reply]

  13. avatar

    Sherry says:

    July 3rd, 2009 at 11:21 pm

    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

    [Reply]

    avatar

    Brevin Reply:

    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!!!

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  14. avatar

    Kimberly says:

    September 25th, 2009 at 11:27 am

    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…

    [Reply]

    avatar

    Brevin Reply:

    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?

    [Reply]

  15. avatar

    Tabatha Ruhland says:

    November 25th, 2009 at 5:13 am

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    [Reply]

  16. avatar

    Moncler jackets says:

    November 12th, 2010 at 4:22 am

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