I’m New To This Game

Introduction:

I am almost 27 years old, and was just diagnosed the end of January 2012.
I am the full time mommy of a very active 20 month old little boy, while at the same time a student and a full time phlebotomist at a hospital in my area.

Colitis Symptoms:

Currently I have been experiencing alot of blood and mucous in my stool… yuck I cannot believe I am putting this online for all to read.

Colitis Story:

My son was born in February 2011 and all throughout my pregnancy I had blood in my stool, which actually started well before I got pregnant, but got worse with the pregnancy. I told my OBGYN about it and she said “Oh you are pregnant, you probably have a hemorrhoid” I tried to explain to her that this was not blood like with a hemorrhoid, but she didn’t seem to get it.

After I gave birth, I was pretty anemic, but when I was discharged from the hospital they didn’t really say anything about it. I had gone to a WIC appointment and they counseled me on how low my Hgb was, which was a high 9 at the time.

Throughout the next couple of months I had on and off blood in my stool, and began going to the bathroom more and more during the day. By Christmas 2011 I was in the bathroom more than I was out, and I was seeing more and more red, but it was the holidays, and I knew, if I went to the doctor I was going to be headed for a colonoscopy.. exactly what I did not want!

By the end of January, I could not take it anymore. I woke up one morning, so tired, it took everything to get myself out of bed… I went into work and had them run a behind the scenes CBC on me… it came back as pretty low, so I counseled my sister who is an RN and she said I needed a transfusion.

So I called my PCP and made an appointment for that afternoon, and yup, my sister guessed it… admitted for a transfusion of 2 units, plus a lovely drink for that evening to prepare for the dreaded colonoscopy waiting for me in the morning!
Since then, I have had small periods of remission, but alot of flaring.

My mother thinks this is a death sentence, but at the same time she thinks that it is somehow a misdiagnosis.

My one weakness is caffeine… I am tired all the time…

I start for at 4am one day, 530am the next, and then 2 days later 930am… I am bumped all around… so I have to have my caffeine. I try to alternate between 5hour energy, coffee, and red bull.

Is there anyone out there that can tolerate caffeine?

I don’t notice that the consumption of caffeine makes me see red, but it usually makes me end up in the bathroom, but not like diarrhea level bathroom-ing, just like once the morning that I drink it.
Does anyone have anything that helps give them more energy but doesn’t have the caffeine?

Where I’d like to be in 1 year:

Not in the red!
I’d like to be able to have a less stressful life, done with school, in a job where I am happy, and about to support myself and my son!

Colitis Medications:

When I was discharged from the hospital last January I was on a tapering dose of Prednisone, and 2) 800mg Asacol 3x a day. Plus some Iron supplements

I had a flare in April and we added 50mg 6MP to the mix and doubled my iron supplement.

I am currently flaring again and am on another tapering dose of Prednisone starting 40mg this week and tapering down 5mg a week for 8 weeks, and have bumped the 6MP up to 75mg… I am going to get a metabolite level drawn in 4 weeks to see if my body is metabolizing the 6MP too well, and determine if I need to bump up to 100mg. So far I have tolerated the 6MP well, not neutropenia… Oh and Im still on my Asacol dose too.

written by Amber

submitted in the colitis venting area




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11 Responses to I’m New To This Game

  1. Katie Zuko October 4, 2012 at 12:13 am #

    I do one cup of coffee a day well it’s an espresso machine but I let the water run to fill the up and make a smoothie every morning like a frappaccino with coconut milk, honey, peanut butter, a banana and I add in some energy boosting “super foods” a tablespoon of raw cacao nips, and maca my favorit super food supplement brand is SunFood. I had a flare thru my last pregnancy and had to be on pred to get it under control I’m med free don’t want to ever get on those other maintenance meds. I do gluten free/sugar free try to stay on the SCD but I cheat a little. Staying in remission that way. GOOD LUCK mama! Energy nutrient filled smoothies are where it’s at easy to digest and full of natural goodness.

  2. Andy October 4, 2012 at 12:40 am #

    You might want to get a second opinion on that Iron supplement and just eat an organic steak or liver a few times per week.

    Pathogenic bacteria like E. Coli thrive in the presence of easily available powdered iron in supplements and it might make your flares worse. Also heme Iron found in meat is more readily absorbed by the body, is not affected by tea/coffee consumption(all other forms of Iron are) and will raise your blood iron levels more quickly if that is what you are trying to do.

    As for caffeine, I too love coffee, and it definitely makes me run to the bathroom. I used to be like yourself, 1 cup in the morning, I would go to the bathroom a couple of times and then I would be done for the day. My flare got worse and I can’t really take coffee or I need to be close to a bathroom for 4-6 hours.

    I am not 100% sure it is the caffeine alone, I notice I can have 2-3 cups of strong(stewed for 10min) black tea and not suffer the same effects. It might be the high theobromine(another stimulant) levels in coffee irritating the gut.

    I would suggest avoiding coffee while flaring it seems to make things worse for quiet a few people on here.

  3. Shona
    Shona October 4, 2012 at 3:07 am #

    Hi Amber
    I can’t even imagine how you are able to cope with UC along with looking after a 20 month old baby. I work 4 days a week and still have days where I’m so tired that I fall asleep on the train and miss my station. I follow the SCD but modified as also avoid dairy, gluten and nightshades (Potatoes, chillies, tomatoes, eggplant)Like you I need that coffee. I have one everyday made in just soy milk and doesn’t seem to affect me. I do take probiotics, vitamin supplements as well as iron tablets as my iron levels are low which could be the reason for your tiredness too. Iron is best absorbed when taken with vitamin C. Also avoid tea or caffeine an hour either side of taking iron supplements as it interferes with iron absorbtion.
    I hope you feel better soon :)

  4. Allison-3
    Allison October 4, 2012 at 6:52 am #

    Oh the coffee was the hardest to give up!! I feel your pain. But honestly, it was the smartest thing I ever did. The caffeine in coffee is quite high (even decaf) and processing the many compounds in coffee is a huge drain on the adrenals- so in the end you are just going to feel more tired.
    I know for sure the five-hour energy and Red Bull is real baaaaaad. Artificial sweeteners and the scray stuff in there is terrible for everyone and especially those of us with UC.
    I drink strong green tea with a little honey or unsweetened iced tea with a lot of lemon when I want caffeine. Tea at least has a lot of great benefits and tastes good. To be honest breaking the everyday caffeine addiction has felt really good- I have a lot more energy (no drag in the afternoon).
    But I still miss my coffee!! I ;like to think that someday in the future I can have a delicious coffee every Sunday morning- so it’s a future goal.
    I treat myself to almond milk based homemade hot chocolate on Sundays and that is a nice treat.
    The anemia took a LONG time for me to get over- I also had 2 units of blood transfusions. It takes the body at least 3 months to recover iron levels so give it time. I did not take supplements because I had such “leaky gut” that I felt I was not absorbing a lot anyway. I did it by eating tons of veggies and animal protein. Iron supplements can really aggravate UC, too.
    Hang in there!
    Allison

    • tammy October 8, 2012 at 6:17 pm #

      Allison–when you drink your unsweetened iced tea with lots of lemon, is it just regular black tea? Or green tea?

  5. Katie Zuko October 4, 2012 at 9:34 am #

    On the Iron front. I go to a Naturopath (only see the UC specialist when I have emergency). so we really strive to heal UC together. If you have one of those in your area I think it’s a must for us with UC to have a doctor that focuses on nutrition and healing remedies. So when I was pregnant 5 months ago towards the end my Iron was down to 9 and we did iron injections every week. She also gave me a topical iron to rub on my skin. Never see anyone mention those options really when people talk about iron.
    Katie

  6. Angela October 4, 2012 at 4:35 pm #

    I also had to give up coffee…as much as I loved it, it truly was not worth being sick or the pain it caused me. I recently went through a time where I was completely drained, exhausted. I now take a folic acid (vitamin B) everyday and 2 capsules of VSL#3 (prescription probiotic) and I’m not as tired as I was. I can’t exactly say back to normal because I don’t know what normal feels like anymore. Hope you figure something out soon…Good luck!

  7. Sharon October 4, 2012 at 9:17 pm #

    I treat myself to coffee once a week, since too much caffeine gives me the shakes. I can’t seem to reach a happy medium with what foods I can and can’t tolerate. My diet sucks. I’m afraid to introduce anything new b/c I don’t want to go into another flare. The only thing I know for sure is I can’t take too much dairy. Geez, I’d really love to have nice salad! Thankfully, It sounds like you have a full plate, Amber. No wonder you are tired all the time. If you can manage it, you should take some “you” time. Do something that you like…reading, meditation, yoga…or my personal favorite…Shopping!!!! Hope you feel better soon :)

  8. KimberlyHI
    Kimberly October 5, 2012 at 12:43 am #

    Amber, I got luck, my pregnancy seems to be the only time I haven’t flared! Maybe I should just keep having babies? But just a few months after I had my 9 month old I got a flare and I was a little devistated when I had to spend 4 days at the hospital away from her! And trying to take care of her and run to the bathroom 20 times a day was pretty rough!
    The caffeine, I did give up sodas just recently with this last flare and during the bad part of the flare I skipped the coffee but now after feeling better I have just one cup in the morning and it seems ok for me. For me I think it’s hard to tell what foods aggrivate things! I know often times dairy has been fine for me and yet other times I have gotten reeally sick drinking a glass of milk. It seems to be really random.
    Hope that you feel better soon!

  9. Kate October 8, 2012 at 5:39 pm #

    Amber-

    I too need my coffee, red bulls and 5 hour enegerys just to make it through the day. I know all my blood counts are low (coming out of a 5 month flare) and I am finally down to 10 mgs of prednisone since starting at 40mgs in May. I also just had my 2nd Remicade invusion, so honestly I have no idea if my fatique is from the UC or the decrease in prednisone or the remicade. I get the caffine is bad speech all the time but without my multiple cups of coffee and red bulls everyday I have no idea how I would function. I just started Vitamin B Complex today and it actually helped with my engery level. I am going to add that to my daily vitamins that I am already taking, so you if you haven’t tried it I would highly recommend it!! Good Luck and Hang in there!!

  10. tammy October 8, 2012 at 6:26 pm #

    Amber–My symptoms, like yours, began when I was 6 months pregnant with my son. I, too, was assured by my ob-gyn that it was a hemorrhoid, but I knew it was different. One year after he was born, my worsening symptoms (mainly bloody stool) sent me to the GI doc for a colonoscopy. I do notice myself in the bathroom after coffee, but I seem to tolerate a daily iced tea and occasional Diet Coke ok. I am also gluten free, casein free, yeast free. Keep researching. You have to be your biggest advocate because all cases are SO different and the docs are just following a protocol. I do love my GI doc, but I also regularly confer with a chiropractic internist. Good luck!

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