My Strange Doctors’ Visits

Introduction:

After trying to fight what I thought was a severe stomach virus actually turned into being Ulcerative Colitis. I’m coming up to my 1 year anniversary of my diagnosis in June.

Symptoms:

My normal: 1 to 3 times per day (all solid!)

My weight is finally back into my normal range for my height.

I also get my Remicade infusions every 8 weeks. I’ve noticed that there’s just 1 day out of that time period that I’ll have to go to the bathroom 5-6+ times in one day. Then the following day I go back to my normal & I’m keep that pace for the rest of the time.

Strange Visit:

I went to my GP for my 6 month check-up on Monday morning. While in the back, I told her about my symptoms & she didn’t know what to make of that one random day I have where I’ve got to be near a toliet. Other than that, she was pretty pleased with my overall results. She noticed that my thyroid was a little big (according to my mom, it’s always been big) & so she was going to check it. She asked me to wait while she went to get my lab orders & so that’s what I did.

So I’m sitting in the exam room & all of a sudden I hear, “MOTHER?! MOTHER?! SOMEONE DIAL 911!” Then I heard people rushing down the hallway. So, I waited for about 10 minutes & then one of the nurses came in. She apologized for my wait & gave me my lab orders. I made my 6 month appointment & proceeded into the waiting room so I could leave. Except, there was an older lady lying down on the floor near the exit. My doctor, a nurse, & 2 paramedics were hovering over her. I noticed the ambulance was blocking my car, so I sat down to wait. From what I gather, I think the lady had a seizure. The way her daughter was talking, she had never had one before. She was taken across the street to the hospital & I was able to leave about 30 minutes later.

Fast forward to Friday

On Friday morning, I went to see my GI doctor. I picked up one of the Digestion & Diet magazines in the waiting room. In it they had a website where you could go to get a medical card which gives you emergency access to bathrooms (even in places where customers aren’t normally allowed to use them). So I thought I’d pass along the website: http://www.myibd.org/RestroomMedAlert/index.php

I also read in that magazine that ginger is supposed to help dampen inflammation in the digestive tract. So, I went out after my appointment & bought some ginger tea. I’m going to try to drink 1 cup per day & hopefully that will help. Even if it doesn’t, it still tastes good. :)

My doctor came in & said that we needed to talk about my bowels again. Fun! I told him all of my symptoms, especially about the one day episode & asked him if I was supposed to be doing that. Ready for his response?

He said, “That’s not usual. In fact, I’ve never heard of anyone having that type of response. I don’t know what to make of it. My guess is that that’s how your body is responding to it.”

He then went on to tell me that he’d like to see me in 3 months & then we would schedule my one year colonoscopy. So now I’ve got something to look forward to around my birthday. Yay! :/

I then went to schedule my next appointment & the staff are really sweet. It’s like they make an effort to get to know you. Cheryl, the MA, told me she was so glad that I was doing much better. She went on to say that she was pretty concerned at how sick I was a few months ago. Very sweet! That really made me feel like they care, or that I was one of the sickest patients & so now I’m easy to remember. LOL :)

Where I’d Like to be in 1 Year:

I’d love to be able to eat foods with garlic in it without causing me to run to the bathroom an obnoxious amount. And I’d love to be off at least one of my medications.
My Colitis Medications:
Remicade
Apriso
Nexium

written by Lara 

submitted in the Colitis Venting Area




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11 Responses to My Strange Doctors’ Visits

  1. Blake April 18, 2012 at 9:23 pm #

    I’ve heard a lot of people (even on this site) talk about about Remicade and that the 8 weeks between infusions is too long for them. Some people have a certain time period (like a week or two) that their symptoms get worse while waiting for their next infusion. I’d say you’re lucky with just the one bad day. I think that is perfectly normal, atleast from what I’ve heard so I wouldn’t worry about it too much. Hope things stay solid for ya.

  2. Pam April 19, 2012 at 1:47 pm #

    My son has remicade every 8 wks, the very last week before his appt. he starts to feel tired. He is having peeling skin from the remicade, it has almost been 1 year now. He really wants to go off the remicade but is scared to. Since he was diagnosed 2 years ago he has been hospitalized each year for a 1 week period. Has anyone stopped remicade and gone back to it? Thanks worried mom

    • shelly in maine April 20, 2012 at 3:36 am #

      Pam,
      It is NOT recommended to stop and restart remicade or the other drugs in that class…it is more likely that the body will reject the meds. An d build more antobodies. You should read up on recent warnings for teens you so you are aware and can look for any signs of reactions,etc. It was recently posted on the CCFA site under headlines and immunosuppressors…best of luck.

      By the way…the “I can’t wait” is from CCFA…that Trish mentioned.
      Good health all :-) shelly

      • pam April 20, 2012 at 10:34 am #

        Thanks Shelly, my son is 24 was diagnosed 2 yrs ago. Thanks for your reply he needs to hear it several times as his Dr. is also not recommending it

  3. Princess PP April 19, 2012 at 2:35 pm #

    What the what? A crap card? A license to poo! I too am on Remicade infusions every 8 weeks and I’m on Imuran. My symptoms are still there, just not as devastating. I was just on Remicade and I was still flaring enough to be hospitalized. When they maxed my dose and added Imuran I’ve been gaining weight and having near normal movements. By normal I mean formed – daily it’s not a lot. I have one day every two weeks that I call my “dump day” – its random but prior to that day I feel bloated and have a lot of left side cramping. I will have to have restroom access all day and I swear it feels like I am losing half my body weight in waste.

    I also drink ginger tea from Fresh & Easy, it helps when I have discomfort (tummy ache, bloating). I have been treated for Anemia and get an iron infusion every Friday. I’m not sure if infusion has any effect on my bathroom habits but it sure took care of my anemia related fatigue.

    Good luck to you!

  4. Trish April 20, 2012 at 1:00 am #

    Sure, in the UK there’s a ‘Can’t Wait’ card – I got one for my sister (we think we’ve got problems? Try having severe IBS AND rectocele to go with it…). ‘Can’t Wait’ gets you into shops to use the staff toilets, etc.

    Lara, I’m glad to hear that you’re so well. 1-3 times a day is totally normal (there is a school of thought that says you have a bm for every time you eat). Fuss not about the garlic and onions – you may be allergic. My ex’s sister used to get haemorrhoids from alliums, but could tolerate all other foods.

    Stay well. :) Trish

  5. Lara
    Lara April 20, 2012 at 8:31 am #

    Princess PP: It’s a card that allows you emergency access to bathrooms. So, I guess you could say that it’s kind of like a crap card. I’m drinking ginger tea by Yogi. I take mine with honey & lemon. (Honey is supposed to help get rid of ulcers)

    Trish: I was able to eat foods with garlic in it before I was diagnosed with no problems. This just started after I had my first flare. It’s pretty rough because garlic is a staple in just about every restaurant in the city.

    Pam: I’d love to be able to be medication free, especially from Remicade. I’ve been fortunate to have no adverse effects (other than being really tired the week before & the week after my infusion). I’ll leave that up to my GI doctor as to when to take me off of it.

  6. california karen April 21, 2012 at 8:27 am #

    wow, i was diagnosed in jan 2012 and its been off and on! recently went to GI doc im not on meds but now i also have diverticuloses !but about the garlic i cant eat a lot of garlic wich i luv.. I had a feeling that caused my diarea a few times but wasnt sure! nice to know im not crazy!

  7. Lara
    Lara April 22, 2012 at 3:26 pm #

    California Karen: You’re definitely NOT crazy!! Everything tastes different without garlic. However, I’d rather that than run to the bathroom all day & all night. Good luck with everything. Hopefully you’ll get things straightened out soon!

  8. Suzy April 23, 2012 at 7:29 am #

    Hi Lara, glad you are doing so much better. I have UC, proctitis right now and I think I’m going into remission, thank GOD!!! I have those days as well. I can go 4-5 days feeling fine and the next day I must stay close to the bathroom as I will go 5-6 times (all solid). I take a probiotic every day and I thought maybe it was from that. I really don’t know and my Doctor just looks at me like I’m crazy when I describe it. I guess maybe our colon just gets full & must empty out. I wonder if anyone else has this??? I am on Imuran, Apriso,. Keep up good work!!

    Suzyoc

  9. Lara
    Lara April 26, 2012 at 8:25 am #

    Suzy: You might be on to something. Maybe our colons can only handle so much before it needs to have everything removed. Who knows?? We definitely need more research done on UC. So, am I reading this right — you can only go roughly a week before you’ve got your day where you need to be near a bathroom? If so, that sucks.

    And I’m so glad to hear that you’re going into remission!! That’s always such a wonderful thing. :) It literally makes you feel like you’re having an awesome day.

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