ONE Year In – I Want OUT

Hello, I am a 22 year old gorgeous single woman trapped in the body of a married 43 old mom of 2.

I was diagnosed with UP(ulcerative proctitis) a year ago. I had a colonoscopy in May 2010 when I was first diagnosed and a year later I am advancing this disease nicely to UC which was diagnosed via Flex Sig just last week. My goal? Rectal transplant but they haven’t come up with that yet.

My treatment began with Liada (x4/day), Canasa suppositories which worked great at night but not so good during the day. I just couldn’t keep them in. Currently I have advanced to prednisone (1 month course). I use Cortifoam suppository in the AM and Anucort suppository in the PM. I don’t have excessive bleeding or diahreah. My symptoms are urgency and tenesmus (which is the devil trying to get out of my asshole for those who don’t have tenesmus). Tenesmus would be a great name for a punk rock band. It’s just that fun. I know how the Hulk feels when he gets mad. He has Tenesmus and he turns green.

After hearing all the nightmare stories about prednisone I was hesitant to try but I just can’t get into remission. I have to say that prednisone has allowed me to leave the house without wearing one of my daughter’s diapers. I also have to say that it gives me a false sense of security as well, having recently crapped my pants in the car wash. I have gained 10 lbs in a week but I love that I can actually eat.

Sometimes I should keep a diaper in the car….. just in case.

My early symptoms were awful, I have literally buried underpants all over Las Vegas. I was and still am in serious denial. This can’t be happening to me. I can’t go shopping with the kids unless I am wearing a diaper, otherwise I could have an emergency situation (and I have) and I just can’t leave my kids in the car, unattended, in a shopping cart near the bathroom, alone – PERIOD! As soon as I left the house I would return to use the bathroom, whether I had to or not. I’m taking Xanax for that now, but I’m not still 100% confident. I’ve changed my diet, I’ve lost weight, I’ve taken probiotics, I’m drinking mint tea and green tea and I’m still sick. Sometimes I have good days and sometimes I have great days. What is upsetting to me is that good or great, I still have symptoms. I’m like a Ninja in the office. I will be in mid sentence, deep conversation and then POOF! I’m out! I often wonder if my co-workers or clients discuss what just happened because they can’t miss that I’ve just completely ran out of the office. I also can’t believe in this modern day and age that I can’t find something to make this go away.I’m a good patient. I’ll do whatever you want me to do doc, just make this go away! You want me to grind up fire ants and mix them with baby turds and smoke it? I’ll do it if you think it will work! I’m desperate.

Ask me how funny “Bridesmaid’s” the movie was? I couldn’t tell ya because I was in the bathroom!!! I even took lomitil so I could enjoy the movie but NO. I’m discouraged but I haven’t lost my sense of humor. I often look for people like me around town. After a while I think I would notice if I was racing some other person to the nearest bathroom and I would have back up plans and short cuts from Wal Mart to Costco to Starbucks. I know every available easy access bathroom from Southern Highlands to Centennial Hills. The worst is when I have the kids with me because they’re hard to get out of the car and I don’t have the time to negotiate car seats. Sacrificing my dignity for peace of mind outweighs any kind of torture I might experience saving my underpants if I left my kids alone. Once I parked at Del Taco and quickly ditched my underpants in their trash enclosure while keeping my eye on the kids in the car. I think my most embarrassing moment. I happened to be driving a loaner car that day and the windows weren’t tinted, otherwise I would have ditched my pants in the car. There aren’t too many good bushy areas around and besides I don’t want to get arrested, for that!

This disease is really taking a toll on my lifestyle. I’m just not that carefree spontaneous person I know that I am. What are you doing? How do you deal with it? How long before you found the magic remission mix? Is dairy really the harbinger of all evil? I give that shit to my kids! Do I go on the Anti Inflammatory diet? What is next? My last visit the doctor said if this dose of prednisone doesn’t work he want’s me to go on Imuran. Hold the phone doc? Have you Googled Imuran? Is anyone else losing their hair? I can weave a Turkish rug everyday.

Thanks for reading.

submitted by: “Princess Poopy Pants”

Current Related Medications:

Prednisone, 1 week into 1 month course
Cortifoam (daytime)
Anucort (night time)
Lialda x4 day
Iron


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proctitis, tenesmus

26 Responses to ONE Year In – I Want OUT

  1. Paul June 29, 2011 at 8:14 am #

    Ah yes, starting the day by trying to make sure everything is clean ‘n clear, to find yourself with that familiar sensation ten kilometers from your home (yes I’m Canadian) and wondering if you’ll make it to the coffee shop in time or should you turn around and your wondering if when you get there will there be anyone in the stall or will you have a horrendous explosion walking by the group of teenagers sitting at the table by the bathroom door and you start to sweat and your hands are beginning to warp the steering wheel and was that bush you drove by big enough to conceal you squatting and your getting farther from home and the kids are beginning to argue and it’s starting to get painful and your trying to control your temper and finally you turn around because you know once you get to where you’re going you’ll have a big bloody stool in your pants and you’d offer your right arm to have a toilet right now. I feel your pain, literally.

    Although I’m just going off imuran I was on it for about nine months with little side effect. Well I shouldn’t say that, firstly I have no hair to loose and the reason I’m trying life without it is because of great fatigue and we were wondering if that was the cause. But we’re taking a risk that I may fall into a flare in response. I’ve been on Remicade for about a year and in pretty good remission. Small diet changes for me, but everyone is different which doesn’t help at all.

    Love your story, it’s always comforting to know there’s others out there who are going through the same thing, although I wish this disease on no one.

    • PrincessPP June 29, 2011 at 3:44 pm #

      Thanks Paul for you words of encouragement and sharing your fearful moments of which I can totally relate. Whoever heard of this disease before they were diagnosed? I surely hadn’t and no other member of my family hit the lotto. Aside from the fatigue on the Imuran did it hold your symptoms in check? When you say “pretty good remission” is it really remission. When I hear remission I think “no symptoms” like I never had the disease. Am I wrong? How is Remicade different from Imuran and does one follow the other. Which should come first in terms of treatment.

  2. LucyLJ86 June 29, 2011 at 8:30 am #

    I know exactly how you feel! Its aweful to think that you have to change who you are because UC holds you back from doing and being everything that makes up you!!! I had a horrible year last year where I had about 4 surgerys and 3 medical procedures :(

    My suggestions to you and let me know if these help or not!!!

    1) I know everyone says to go on the SCD diet…i tried that and it just made things worse. What I did was eat only foods I know that my body could digest easy and well. Then I slowly introduced items back into it to see how I felt. I know for a fact that with me the following foods are the WORST in my body: all types of diary, salads, onions, spices, any raw foods such as sushi and veggies, and the only fruits that make me feel gross are everything except for bananas, peaches, and all berries. Try getting yourself down to the basics…and then work your way up withe others foods and keep a diary!!

    2) Google “Vitamin E Enema” This has been the one and only thing that has basicly removed all my symptoms away from me. I am too on lialda and i feel it does nothing. I’m never going on steriods because the last time i did, on a low dosage, i blew up like a balloon and went to the hospital because i literaly gained 15 pounds in one day and had no neck!!! it affect my breathing and both myself and my doctor said steriods are going to be the very last resort. But yes…google the vitamin E enema…it really has changed my UC!

    3) Walk at least 30 minutes a day. This too has helped kept my digestive problems at ease.

    Let me know if any of this helps!!! crossing my fingers for both you and your underpants!

    • PrincessPP June 29, 2011 at 3:55 pm #

      OMG Surgery? I don’t even want to remotely go there, but I do enjoy a propofal nap once or twice a year. Too bad I can’t get one for a pap smear eh? I know I said I was the best patient, but really I am the worst. You are right about a food diary. I should keep one but you know how hard it is to be writing everything down in addition to all of my Queenly duties in Denial. But I understand how it makes sense. I try to eat the same things every day that I’m feeling good. I hate yogurt, I hate probiotic powder, I hate metumucil, I hate poached chicken and steamed rice and green beens – you understand. I want a freakin’ burrito! I will look into the Vitamin E Enema, since so much has been going out I might as well try stuffing myself from that side with something that might work. I have been drinking aloe juice and haven’t noticed any significant changes. I also try these wacky witch remedies while on my regular doses of drugs so who knows what’s working? I can’t deal with this anymore. Why don’t people talk about this disease? How is it under the radar? Thank you for your suggestions. My doctor is so indifferent. He treats my symptoms, tells me there is no significant dietary changes I can make and well, if I notice something doesn’t sit well, avoid it. Really doc? What, 15 years of med school and that’s all you got?

  3. Amber June 29, 2011 at 10:10 am #

    OMG! I am in love with you! You are so funny and upbeat while going through probably the hardest situation you will ever have to face….I too have left underwear all over – in the high school bathroom garbage, in the rest room at random gas stations, in friends garbage, at my place of employment…you name I probably have left them there. I started carrying around a spare pair in my purse (which, let me tell you, cut down on the stress and let me forget about worrying for a minute so that the obsessive anxiety that most UCers have when leaving the house didn’t cause me to have an accident). I live in Illinois and I used to live for the corn season so that if I did have to stop on the side of the road I had somewhere I could dash to! I wish you the best of luck and hopefully you will have this awful disease under control sometime soon.

    • PrincessPP June 29, 2011 at 4:16 pm #

      I love you too! Let’s buy stock in “Fruit of the Loom” and run away together. I can’t imagine having this disease as a teenager. Assuming your a teenager and not a high school bathroom lurker. Once I had an accident in my cubicle and I was wearing a skirt! I was mortified but so ever grateful that my cubemate left for lunch. I clocked out early that day. Let’s knock wood that never happens again. I carry in my diaper bag err purse a Size 6 Huggies (cuz they don’t make 7s) and baby wipes. I really don’t want to have this disease. My first few months I was super anal (ha) about taking all my meds and the same time the same way, I was going to lick this! Now that I’m worse off I’m thinking of the “ignore it/go way” but really I know that’s not going to work. I just want to be normal. I wish I lived in Illinois, the desert is no place to hide. Thanks for your kind words. Did you watch American Idol last season? I heard that bearfaced kid with the beard had UC and I was obsessed with him. Like the whole time I was watching I was like “is he shitting his pants?” cuz I am – HIT PA– USE!

      • LexieLoo August 3, 2012 at 8:06 pm #

        Totally love your sense of humor. Pampers makes size 7. I have used my kid’s diaper before in a poddy emergency. My three year old doesn’t like to share, he tells me to get my own. Too bad they don’t make adult diapers that are as nice as Pampers, I would totally feel better about leaving the house.

    • PrincessPP June 29, 2011 at 4:32 pm #

      Damnit IMHO I just left the funniest reply to your comment but I don’t see it. What the french toast? Mmmm french toast… Whatever, I said I loved you too and that we should buy stock in Fruit of the Loom and run away together. I don’t remember the rest. Oh yeah, some funny shit about that bearfaced kid from American Idol having UC. I only watched that show because of him while I wondered at which moment on stage he squeezed a steamer. Then I would get all worked up and have to pause the show while I ran to the bathroom for the 100th time. I also wondered if you were still in high school. Oh yeah, I wish I had cornfields at my disposal, or rather for my dispoal.

  4. OrdinaryWorldWhereRU June 29, 2011 at 4:06 pm #

    I carry a spare undie bag with me everywhere. I have no issues with lactose free milk. I keep hoping I will gain weight drinking it but no luck. I have eaten BBQ potato chips without issue but baked chips seem to bother me (which makes me wonder what in the heck?). I have also eaten small amounts of extra sharp cheddar with no issues. I have tested other things and find iceberg lettuce is ok, yogurt is not. I went on prednisone for 3 months and struggled to gain weight. I was eating 6 times a day trying to regain weight. I have been off of it for 3 weeks and cut back on the eating frequency and am losing a bit here and there, which is the opposite of what I need to happen. So, my experience has been very different from most on the prednisone. I did have leg, ankle, and feet swelling. Also, I kept losing my hair and had breathing problems. He won’t go back to prednisone because it isn’t a good long term choice for obvious reasons. I hope that I won’t be unique in my response with the remicade, which I started yesterday. Also take asacol, 3×3. Best of luck!!!

    • PrincessPP June 29, 2011 at 5:33 pm #

      Get out of town! I lose gobs of hair but I thought it was from Lialda because I haven’t been on the prednisone that long. I’m sure I’ll be going all Jerry Lewis on steroids here soon and my appetite is that of a healthy 280 lb. truck driver. So now I have all these frizzy little baby hairs sticking out of my head. I’m definitely going to start keeping a food diary.

      Dear Diary, today I wanted a big fat cheeseburger with french fried onions and mega lard fries, but I had poached chicken breast with green beans instead. Also that new lady in AP is mean!

      I also notice that I have joint pain for no reason in my left shoulder, elbow, hand and sometimes my effn reading glasses don’t work. I attribute everything that goes wrong with me to this disease. I’m looking into some suggestions I got here today. I too fear prednisone but on the other hand it has really helped me with day to day living. Of course, I can’t rely on it day to day. I’m in my second week of a month long dose. Now that I’m on 30 whatever gs a day I do notice a slight difference in my symptoms, as in “i have them” so if I can’t shake this the doctor has recommended Imuran. That’s a whole other fear factor for me. Anyway I hope that remicade works for you and I’m sending happy vibes your way. Somebody has to feel better soon! I say we march on Washington.

  5. Suzy June 29, 2011 at 7:13 pm #

    Oh my God you are so funny. I have it too and I want out!!! The only thing that is making my life bearable right now is a suppository that I get at a compounding pharmacy that is part ASA and part Budesonide. This gave me some control (not ditching underwear at all) but not remission yet. I’ve been on for about 4.5 months. I was also taking Lialda & smoking 3-5 cigarettes a day, this all came from the head Gastro doc at the University of Chicago. I recently went to a new Gastro doc, couldn’t afford the other guy, and he switched me from Lialda to Apriso and added a Canasa suppository in the AM. I have been able to keep that on in and I’m really feeling better. I had the blood poop like every 5 minutes, with just a squirt, I couldn’t leave the house. I was on all the usual drugs & pred, which did nothing but make me FAT. I hope this helps, maybe you can ask your Doctor about this compounded suppository. I hope you get relief soon, oh yeah I quit the smoking, it did nothing but make me smell bad, lol. This is my 14th year and & longest flare. Good luck and may the Devil get out of your ass & stay out!!!!

    • PrincessPP June 30, 2011 at 5:04 pm #

      Dude, I just hit “Jerry Lewis” today. I took my picture with an outgoing official today and I was like, “who’s that zeppelin?” Oh shit, it’s me! I’ll have to ask about Apriso, I feel Lialda does nothing at all. I’ll ask my priest about a exorcism. I know we have a compounding pharmacy here but honestly my Doc is just so “relaxed” obviously he has no demons in his ass. I wonder if there is a doc with Colitis I could see. I wish they’d put existing medical conditions on their resumes. Thanks for the comment! I hope you too are free from the Devil and soon. I’ll ask the church about a two for one!

  6. Allyson June 29, 2011 at 8:38 pm #

    I love your post! I always tell myself that I have to laugh so I don’t cry and I think that finding humor in this is the only way I got through what I did. So thanks for making me chuckle while reading this. So your doctor is thinking about Imuran? I never tried this because my UC was very severe and my first and only medication was Remicade and Prednisone. However, I have heard success stories from people with Imuran. Every one is completely different and unique with this disease and how they react to medications. I have heard that people lose their hair and that they cannot take Imuran while pregnant. My guess would be that your doctor would start you on that and if you didn’t see improvement, he would try Remicade next, then your last option would be surgery – which I had and it was a God send surgery. Literally gave me my life back and I couldn’t be any happier with the results. Your Prednisone is a month course? I formed a love/hate relationship with that drug, mostly hate. While it stopped my bleeding, once I got below 35 mg, I would start again so I played a game with it for about 5.5 months, going up and down with the dosages. Result = I lost most of my beautiful hair, my once flawless face is now scarred with acne scars from prednisone, and well, that’s really the only things left that it damaged, but it sucks! I have heard that having UC in general can cause hair loss – since your body doesn’t absorb the nutrients the same or completely, you lose a lot, which can result in nutritional deficiencies and loss of hair. I wish you the best of luck with everything! Are you currently working or are you off on disability or anything?

  7. Megan June 30, 2011 at 9:19 am #

    Wow – I feel your pain – literally and figuratively! Im so sorry you are not getting the proper attention from your doctor on this. Maybe it is time for a second GI opinion! I have been on Remicade since February. It has taken away my urgency issues almost 100%. I can pretty much make it through anything – especially if I only eat small portions. It also took away all the blood issue too! I am also on Lialda – just once a day to help maintain. Now I will tell you for me remission isn’t no symptoms. I experience extreme nausea at least once a day. In the final 2-4 weeks before my next remicade infusion I have extreme fatigue too! I have helped to ease some of that with acupuncture. If you are willing, look up a good acupuncturist trained in China that has experience with auto immune disorders. Only issue wit that is most insurance doesn’t cover it. I needed it 2 times a week for 4 weeks at $70 per time! YICKES! But – it did give me more quality time with my kids so it was worth the sacrifice to me!

    Hang in there though – and I believe you need a new doctor who is willing to fight as much as you are! Keep up the humor too – cause it definitely helps!

  8. OrdinaryWorldWhereRU June 30, 2011 at 5:02 pm #

    I keep a running list of all the foods I want to eat again. Is that self-destructive or just delusional? I was losing my hair on Lialda too. It didn’t work well for me so I wasn’t on it for long. The odd thing is that after the prednisone was done, my skin got worse. But, immediately after the Remicade my skin cleared right up. I don’t understand that effect.

  9. Dawn July 1, 2011 at 10:19 am #

    I can so relate to everything you are saying. Oh how I remember that dreadful dance of trying to get kids out of car seats, into a store, and strapped down to something so I could get to a toilet before I lost control of things. I’ve also ducked out of meetings, conference calls, and business presentations. For me, prednisone was amazing but over time the length of remission got shorter and shorter when I would come off of it. First I would be good for six weeks, then just four, then two, and finally just a few days. My last course symptoms started coming back before I ever got through the taper. It was awful. I hugely feared both Imuran and Remicade. I honestly felt like I’d try them, they probably wouldn’t work, or something awful would happen side effect wise (as in, well you don’t poop your pants anymore, but now you have cancer! Yay! No thanks…) I figured even if they did work, it would likely only be for a short time and then I’d end up in the operating room anyway. I decided to face things on my own terms and in March I had my colon removed. Having an ostomy isn’t the easiest thing I’ve ever done, but it sure beats what I was living with when I had UC. I’m still navigating through my journey as I have two more surgeries to go and then I’ll have a j-pouch.

    I guess I just wanted you to know you definitely aren’t alone in all of this!

  10. Kelli July 4, 2011 at 5:11 am #

    Hey,
    Just wanted to give a piece of advice on the hair loss thing, should you decide to try Imuran – try taking an MSM (Methylsulphonylmethane) supplement.
    It is a naturally occurring source of sulphur, which the hair is mainly composed of. It is commonly used as a treatment for joint problems as this sulphur is one of the main building blocks for a key structural component of cartilage, but I have had good success with it since it was suggested to me for strengthening & promoting healthy hair & it’s growth.

    I have been taking Imuran for roughly 4 months now (albeit on a low dose – my GI wants to slowly build up my dose to try to avoid any possible liver or pancreas problems) & noticed hair loss almost straight away. The condition of my hair has been apalling since having this disease anyway, but since being on the Imuran it’s been so much worse.
    This supplement has really helped, though. My hair was already thicker within a week of taking it.
    Bear it in mind :)

  11. Stephie July 8, 2011 at 9:21 am #

    Princess PP? Do you have a facebook? Please look me up. I used to live in LV too. But now SLC, Ut. I also have a demon in my ass, for 20 years now. Love to be friends with you on FB. Stephie Pappas if you find me message me and let me know it’s you ok? Thanks and good luck! Stock up at undies sales!

  12. JenJ July 9, 2011 at 3:55 am #

    Hey Princess, I too can relate to your story! I tried keeping a food diary and in the ned I just kept forgetting or I didn’t have a pen to hand. Then I got a new mobile phone and found the GI App, if you have a phone that can take apps I’d suggest downloading it. You can log all your meds, pain, stress, bowel movements and the food you eat. Lets face it, who doesn’t constantly have a phone with them these days? Hope this helps!

  13. Mary July 13, 2011 at 4:48 am #

    I am lucky to have a doc here in Charleston, South Carolina who is also a sufferer of UC. He grew up in Sarajevo without treatment. He is very understanding of the condition , as well as, my under compliance – I’m a registered nurse. I am lucky to have mild to moderate UC. As painful as it can be I can only imagine what those of you with severe UC are going with. I have been hospitalized only once because I was not compliant. Never want to do that again. I have been on Prednisone once and was truly considering killing my husband – He is a foot and a half taller than me and has 180 lbs on me. But, he was very afraid. Now I know my triggers – fried foods, over processed foods. I can eat steak, veggies and fruit. Don’t eat fast food and keep my fats to whipped cream, milk, cream puffs when I want a treat. When I have a flare I try to stick to boiled chicken (yuck) and have been known to live on chicken broth for 6 weeks before seeking further treatment. I take Lialda, folic acid and Krill Oil for my UC. No polyps on my last 2 colonoscopies, yeah. Due for another in a few months.

  14. PrincessPP July 13, 2011 at 10:54 am #

    Hey thanks everyone for your support. I am awaiting my SCD Diet book about Vicious Cycles to come via Amazon. In the meantime I’m weaning down my prednisone and noticing my symptoms creeping back. I want to be on prednisone all the time but my doc thinks that’s redick! I understand. I got my lab order for the Promethius bs test for Imuran. I will get the lab work done but I’ll have to think about the Imuran more before I try it. I’m trying to figure out how bad I really feel and how much I can live with. I do know I have never been in remission and some days are better than others but as I read around this site I realize that I’m lucky – if one can be lucky with UC. I’m on FB “Chi Chi Larue” for those interested. Also I promise to start that food diary and check out the GI App on Itunes. I do have the iPoop App and its freaking hilarious! Loves!

  15. Karen July 25, 2011 at 9:56 pm #

    You are a hoot! Thanks for the good laugh. I also have ulcerative proctitis, although it started (20 yrs ago) as left-sided UC. So in some ways it got better over time but in other ways worse, such as response to treatments. The first 15 or so yes I could effectively treat flares with all the “fun stuff” (mesalamine suppositories and enemas, CortiFoam, etc.). Once in a great while a more stubborn flare that required oral pred, yet it would calm it quickly and I was able to taper off pretty quickly. A few years ago the flares just got really stubborn, to the point where I couldn’t come off the pred or would flare instantly and bad – bleeding and stuff. THEN the pred wasn’t even working much any more. So first I was steroid dependent, then became steroid refractory. Docs weren’t comfortable treating it aggressively because it was “just proctitis”. Well that proctitis was worse than any of my full left-sided UC flares. Doc put me on Imuran. Holy hell. Anyone want to know what death feels like? Imuran is way worse than UC. It does wipe out a lot of your blood cells and those things which can be scary, but working in oncology and in pharmaceuticals I understood all that and didn’t freak out. But the way it makes you feel – those side effects were intolerable. Headaches, body aches, nausea, night sweats, and DISABLING fatigue. It was like having the worst flu ever for 3 months! It did help with the colitis and allowed me to get off the pred (50 lbs later, mind you) but to me it was worse than the UC. I asked my doc for Remicade but he was hesitant (since “just proctitis). I considered surgery. My husband’s doc waited too long to start him on Remicade and he lost his colon. Finally my doc agreed to give the Remicade a try and the last 2.5 years I have barely thought about UC! It has saved my life (and my underwear). I have had maybe 2-3 flares during this time and they have been relatively mild; treatable with topical stuff only (ie things that go in the butt). No pred for me! And almost no side effects from the Remicade; just headaches during treatment (kind nurses now give me Demerol w/my infusion) and tired day of and after infusion. I have had FEWER colds, flus and infections on the Remicade than prior, so obviously no major immunosuppression. Personally, I would push your doc to consider Remicade before Imuran. I think Imuran causes way more immunosuppression than Remicade, and having kids you’re exposed to so many germs. My doc went to a GI conference this year where the experts encouraged docs to start Remicade sooner. There is hope! I was in such a bad place a few years ago and now consider myself a success story. Between my 20 yrs of UC and my husband’s UC, plus subsequent 5 surgeries (j-pouch the switched to k-pouch) I’ve pretty much seen it all. Good luck and thanks again for your funny story!

    • PrincessPP July 27, 2011 at 4:14 pm #

      Holy Jeebus Karen! Being able to read has been a Godsend! I spent the better part of my evening with my kid at the ER last night. He has some kind of virus but the whole time I was trying not to breathe because I’m on prednisone. I couldn’t imagine how I would have fared had I been on Imuran. My GI doc said he has a pregnant patient on it. He says its safe and not that bad. I don’t know what he’s been smoking. I’ve read about it, it doesn’t read like a bedtime story.

      To get off topic the kid’s nurses in the pediatric ER were all unbelievably young and cute (and male). I like to think I still got it going on but I checked my calendar and tomorrow I’ll be 43, and I’m full of crap.

      My doctor is stalking me. He wants to know if I completed my Promethius testing to see how I would dose on Imuran. I told him I needed preauthorization since I just had an insurance change. Unfortunately for me I don’t need preauth. Doh! I guess I’ll do the blood test but when I see him I’ll definately ask about Remicade. I just don’t understand why I can’t take Lialda and a butt plug here and there and go into remission! I’m thinking about Karma. I must have been a bad person in a past life. Not as bad as Hitler but definately not just a petty thief. The predinsone is awesome but now that I’m almost finished I know that my symptoms will come back full force. I find when I’m on 40 mgs I can eat whatever, poop regular and life seems normal, I don’t need backup underpants. On 1/2 a pill I’m definately having issues. I’m taking Celexa for my ass anxiety. I’m sure it’s helping but I thought I was hilariously funny on Xanax. At least I was laughing all the time.

  16. Anieskassell July 28, 2011 at 12:34 pm #

    Dear Princess PP:

    You are so funny and I thank you so much for bringing laughter into my life while I’m dealing with UC myself. I did get the chance to see the whole Bridesmaids movie (my symptoms were mild at the time and I made sure I ate almost nothing that day) Today, on the other hand, I got the taste of going to the washroom once, and then going back four minutes later. I guess I should have stayed sitting there for the whole hour. But at 5:30 am, I really wanted to go back to sleep.

    A couple of days ago I got started on the corticosteroids (Prednisone). The smallest dosage (10 mg per day) I had a good day yesterday, but this morning, not so much. Is this like two steps forward and then one step backwards? I hope not. There is so much I want to do!

    Anyway, I’m starting to hear the bubbling of my colon so I know what’s coming in a few minutes; might as well grab the hemorrhoid medication to make the trip more bearable.

    Please, keep us posted. We love to read your updates!!

    Waving goodbye with a clean pair of panties, just in case.

    :)

    P.s. I will definitely ask for Xanax!, any other side effect besides the laughter?

    • Karen July 28, 2011 at 9:59 pm #

      Princess PP: I hope your child is feeling better and that you didn’t inhale too many germs. I know others feel OK about the Imuran and some do fine on it, but I just think the Remicade is the best way to go. The Imuran is so toxic that frequent blood tests are required (I think weekly then monthly then every 3 months or so, but it’s been a while). Can’t remember what I first did on the Remicade but now I only get bloodwork once or twice/ year. And I do believe Imuran is pregnancy category D whereas
      I “think” Remicade is pregnancy category D. A former colleague of mine was a nephrologist MD who specialized in transplants, so had TONS of experience with Imuran and told me she would NOT recommend getting pregnant on it. I would continue to research all options then have an honest and open talk with your doc, letting him know your thoughts and concerns. See if he is open to other options. If not, you may want to consult with another doc. Bottom line is that YOU have to be comfortable with the decision, because it’s your body and only you can decide what is OK for you. As for the pred… I know what you mean. 40 mg was my magic dose too; always felt so good on that and dreaded the taper as I knew I’d feel so rotten again. BUT I didn’t love the 50 lbs gained nor the osteopenia. I was so glad I decided to go with the Remicade because I feel just as good now without all the bad stuff. Do let me know how it goes with your doc and what you decide on.

      Anieskassell: Have you ever been on pred for UC before? 10 mg is a very small dose and if you are flaring to the point of needing steroids, it will most likely require a higher initial dose than that. It has been a few hrs for me, but my memory is a starting dose around 40 mg (and even a lot higher for some, depending on the severity, etc.) then once under control start TP taper down, and that part varies a great deal. If you’re still having symptoms after a few days I would ask your doc about a higher dose. Yes, you always want to be on the lowest dose possible and for the shortest amount of time, but being on a small ineffective dose is not good either.

      All: Keep up the good spirits. Laughter does help. There is hope and you can/ will feel better some day. It’s a struggle I know, but stay positive, keep current on research and treatments, and be your own advocate with your healthcare.

      Karen

  17. PrincessPP August 10, 2011 at 1:52 pm #

    Update! I still haven’t gotten my Promethius testing for the Imuran. I am currently in a major flare. Woe is me. I guess I should get the ball rolling but I’m busy, do you know how much laundry I have? I have read the SCD all ways to Sunday and I’m lacking the motivation to get started. I think my problem is working 10 hour days and wondering how I’m going to cook something other than eggs in the microwave. Also, the work microwave is an organism of it’s own.

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