My Body is Trying to Kill Me

Kelly K fullIntroduction:

My name is Kelly and I am a mother to 2 wonderful and high energy kids. I was diagnosed in Feb 2009, shortly after the birth of my first child. I work full-time and love my job, although it can be very stressful at times. I am desperate to find a way to begin living a normal life. I want to be able to enjoy my children and spend time with them while they are still young. I want to have the energy and love for life that I used to experience before this horrific disease took over my life!!!!

Some more about Kelly:

I love to travel and would do so more often if I had more energy and time. And if my kids were a bit older. My daughter is 5 years old and my son is 3 years old, so it isn’t easy getting time away right now.
I also love photography and am trying to learn more about the different ways to take more “creative” pictures.
I HATE cooking, although baking is okay. Our crock pot is my best friend most days since it requires little effort in the kitchen.

Kelly’s Symptoms:

My current symptoms are abdominal cramps and blood/mucus in my stool. I can have an extreme variance in my bowel movements from month to month. One month I may only poop once a week (severe constipation and bloating) and the next month I may go several times a day. I tend to have nausea during a flare and most foods sound terrible to me. I also experience extreme fatigue and joint aches. Currently my flare has caused me to run a mild fever for 10 days straight.

My Body is Trying to Kill Me

My story begins with noticing blood in my stool during my first pregnancy (around 5 months). I didn’t have any other symptoms outside of this. After I gave birth, I had a colonoscopy that showed what the culprit was-Ulcerative Colitis. My symptoms have progressively become worse as each year passes. 2013 has been absolutely the worst yet with 3 ER visits associated with the disease. Most recently I have noticed extreme fatigue that is making it hard to work- or do anything for that matter! My joints ache and the best way I can describe the feeling is that it feels like the aches that you get with the flu. I am looking to find others that are experiencing similar symptoms and how they are currently handling their normal day-to-day tasks.

Some questions I have about UC are:

  1. What have you done to ease flare ups with UC?
  2. What foods do you typically eat that seem to soothe your stomach during a flare?
  3. Has anyone experienced a fever or nausea with UC?
  4. What medications have you found useful?
  5. What medications have you found to have the worst side effects?
  6. How can you get some of your energy back and what do you do to help control joint pain associated with UC?
  7. ***How do you tell your boss when you are experiencing UC symptoms and are struggling to work?
  8. How do you tell people around you without giving out too much information?
  9. What are some ways that have helped you stay positive when you are feeling your worst?
  10. How do your kids/husband/family/friends feel about your disease? Do they express a feeling toward you of being a burdensome part of life now with UC?
  11. What foods tend to cause the most gas/bloating?
  12. Has anyone experience a different smell of their stool/gas after being diagnosed with UC?

Medications:

I have tried everything except the IV Meds. Most meds have not worked very well, if at all. Asacol, Sulfa, canasasuppositories, enemas, and prednisone. I will never take Prednisone again as I was borderline psychotic while taking this drug.

written by Kelly

submitted in the colitis venting area

 

UPDATE (January 29th, 2014):

Thank you ALL so much for the useful information you have sent to me over the past few weeks! It took me some time to get back with you as I have really been struggling with some recent news I have received from my GI doctor. I had been VERY sick for a large part of December/January with the worst abdominal cramps I have ever experienced. For 2 weeks straight, I had a fever of 99-101 and terrible joint pain. The only way I can describe the joint pain is that is felt similar to having the flu(body aches, pains, etc.). I ended up in the ER due to the pain, and after a scan of my abdominal area, they sent me home saying that it was just inflammation due to my UC and that they would send the results to my GI doctor. After receiving the ER results, she (my GI doc) scheduled me for a colonoscopy right away. This was my 3rd one in 5 years! Happy New Year to me, right?!! There was concern that my UC had spread to include my entire colon…and the y were right. My condition is no longer considered UC and I have since been diagnosed with Chrohn’s disease. My entire colon and part of my small intestine are now inflammed and the doctor said my disease has speread very quickly and aggressively. They also found a small ulcer that and are trying to treat it with oral meds. I have been in complete shock since my recent diagnosis of Chrohn’s and have been taking some time to try to “wrap my head around” all of this craziness. I have a wonderful and supportive husband that is always willing to help me out– and great family and friends that have been eager to help out in any way that they can.

Moving forward, my doctor is recommending biologic meds to control my symptoms and if I agree, I will begin to receive these treatments at the beginning of February. I am currently considering Remicade as this has been around longer than the alternative biologic options, but wanted to reach out to anyone that has had experience with this.

Thank you for all of your supportive and helpful comments over the past few weeks. I feel fortunate to have found such a great group of people to help me in this journey!

Sincerely,

Kelly K.

20 Responses to “My Body is Trying to Kill Me”

  1. BradJanuary 4, 2014 at 7:16 am #

    Julie, I’ll try to answer these questions but don’t forget that what may work for one, May not work for others.
    My name is Brad and I was diagnosed with UC back in 1998 during college. I am a father of two and a second grade teacher.
    1. My worst flare up came this past spring and put me in the hospital for nearly three weeks. Before that I’ve been on Asacol and when I had flare ups, I would take a steroid to clear things up. That didn’t work this time so now I do a Remicade infusion every 8 weeks which has dramatically helped. I just did my fifth infusion two days ago.
    2. Sports drinks tend to help. I’ve also gotten in the habit of getting won ton soup without onions com our local Chinese Restaurant when I’m in a flare up which seems to digest easily. Scrambeled eggs is also a nice soothing food for me.
    3. Yes, both.
    4. I know you said prednisone was bad for you, but for many years,not was the one thing that cleared my flare ups. I get very testy and emotional when I take it but I have a very supportive wife. Now that I have to take Remicade, I can say that for me, it works very well. Although I’ve heard of some people having to do both the Remicade and steroid to get good results.
    5. The only side effect from Remicade is it seems to wear off about a week before my next infusion. No blood but some cramping, very loose stool, and I get very emotional and irritated very easily during that final week.
    6. I walk my dog like crazy which helps me gain my energy back quickly, as well as sports drinks (low calorie: G2, Powerade Zero)
    7 and 8. As a teacher, I have the luxury of many sick days accumulated over my 13 years of teaching. Plus I have been open and up front with my principals and fellow teachers who have all been very supportive and understanding.
    9. Writing has helped me stay positive. Writing my feelings down, both positive and negative has been a great form of therapy. Also connecting with other UC sufferers through places like this site and on Twiiter has been very helpful.
    10. My family is very supportive. My wife understands when I get upset at my UC. All she asks of me is to be honest with how I’m feeling and knows sometimes I’m not looking for advice, just someone to vent to since UC is very stressful.
    11. Soda and chocolate seem to cause the most gas and bloating for me so I try to stay away from them. But sometimes it’s just too damn hard to dray away from a can of Mt. Dew and some M&M’s. :)
    12. Yes, I’ve had a different smell once in way while. Once the smell was so bad, that they tested me for CDiff which I ended up having. That’s something a lot of UC patients can easily get, but thankfully a strong antibiotic usually clears it up.
    Hope this helps a bit. Any other questions, just ask. It always helps to ask when it comes to UC.

    • AdamJanuary 4, 2014 at 7:25 am #

      Great point Brad about the bad smell/C-diff testing!!!

      I missed that, but you are right on with a tell tale sign of possible c-diffy. thx for getting that!!

  2. AdamJanuary 4, 2014 at 7:23 am #

    Hi Kelly,

    GREAT QUESTIONS and thanks so much for posting your story.

    Here are some answers from my perspective:

    1. Ease flare ups…followed a pretty strick food regimen: details from my video here: http://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

    2. Read the work survey (176 UC’ers completed it a few months back and lots of stuff about handling this at work. you’ll see for sure that you’re not alone with your concerns) http://www.ihaveuc.com/176-patient-colitis-work-survey/

    3. Fever…Nausea… I just went down to the search box at the bottom right hand side of any page (this one included and types in “nausea”…lots and lots of stories come back… here’s one you should read: http://www.ihaveuc.com/its-back-stomach-cramps-nausea-vomiting-and-diarrhea/

    4. Medications…well, I don’t use them anymore as they didn’t seem to help me long term and caused side effects I wasn’t willing to put up with. BUT…many people do use them, read the medication reviews from others, lots and lots of PERSONALIZED details you won’t find in a doctor’s office. both good and bad. here’s the link to them: http://www.ihaveuc.com/category/medication-reviews/

    5. Worst side effects for me was Humira. was awful. skin falling off hands and feet, joints all jacked up..yadayada… (again, that was just me, rare for sure, but I’m also not the only one who was jerked around by that med)

    6. Get energy back…rest, rest, and getting the UC under control. Super hard to have full energy when in a flare if food is not getting digested properly. Even with high amounts of prednisone, you eventually become exhausted if the digestion just isn’t there. There’s no quick fix to getting energy back if you’ve had a long drawn out flare other than finding remission or near remission and slowly taking the long road to recovery. Sucks, but it is a true way to get back to good health. (Took me several months back in 2009 to be able to lift a bag of grocceries again…I used to bench press 245 pounds…i swear..:)

    7. Tell your boss…read the work survey link above.(or have them call me if they don’t understand)

    8. Telling people around you…I ask them straight up, how much of my colitis details would you like to hear. Seriously, you’ll be suprised who wants to know EVERYTHING… (come on…you’re a girl, you know how much you like to gossip…this isn’t the same, but not too different)

    9. I stay positive by realizing that our bodies are great works of art. And they are NOT trying to kill us, but rather, they are sending an immune response out to something. ( I don’t think its an “auto-immune” we don’t know why its attacking itself deal like some western med docs think) But in the end, our bodies are super incredible and come back to dropping hard regular poops after days/mnths/ and even years of rippin out nothing but nasty bloody mucousy yack. It’s for sure possible.

    10. Worst food enemy of mine….beer and breads. lots more too

    best to you Kelly K, you’re gonna get through this too I know it:)

    hang in there,

    -Adam

    • Kelly K
      Kelly KyleJanuary 21, 2014 at 7:30 am #

      Thank you ALL so much for the useful information you have sent to me over the past few weeks! It took me some time to get back with you as I have really been struggling with some recent news I have received from my GI doctor. I had been VERY sick for a large part of December/January with the worst abdominal cramps I have ever experienced. For 2 weeks straight, I had a fever of 99-101 and terrible joint pain. The only way I can describe the joint pain is that is felt similar to having the flu(body aches, pains, etc.). I ended up in the ER due to the pain, and after a scan of my abdominal area, they sent me home saying that it was just inflammation due to my UC and that they would send the results to my GI doctor. After receiving the ER results, she (my GI doc) scheduled me for a colonoscopy right away. This was my 3rd one in 5 years! Happy New Year to me, right?!! There was concern that my UC had spread to include my entire colon…and they were right. My condition is no longer considered UC and I have since been diagnosed with Chrohn’s disease. My entire colon and part of my small intestine are now inflammed and the doctor said my disease has speread very quickly and aggressively. They also found a small ulcer that and are trying to treat it with oral meds. I have been in complete shock since my recent diagnosis of Chrohn’s and have been taking some time to try to “wrap my head around” all of this craziness. I have a wonderful and supportive husband that is always willing to help me out– and great family and friends that have been eager to help out in any way that they can.

      Moving forward, my doctor is recommending biologic meds to control my symptoms and if I agree, I will begin to receive these treatments at the beginning of February. I am currently considering Remicade as this has been around longer than the alternative biologic options, but wanted to reach out to anyone that has had experience with this.

      Thank you for all of your supportive and helpful comments over the past few weeks. I feel fortunate to have found such a great group of people to help me in this journey!

      Sincerely,

      Kelly

  3. McKenzieJanuary 4, 2014 at 7:57 am #

    Hi Kelly! My name is McKenzie and our stories are very similar. I also am experiencing a lot of what you are mentioning. My UC has gotten almost unbearable in the past 6 months. I am also a mom to two young children (3 and 16 months). If you’d like to chat here is my email: mickey_blue_eyes_85@yahoo.com. I am also on Facebook!! Hope to hear from you.

  4. Anne H
    Anne HoldenJanuary 4, 2014 at 4:46 pm #

    Hi Kelly

    I thought I may be able to help with your questions relating to your employer. I’m not sure where you’re from, but I live in Australia and I’ve had to reduce my hours from full to part time due to the fatigue that the UC causes., not to mention all the other stuff! You’re definitely not alone in feeling worried about talking to your employer. The Crohn’s and Colitis Australia or has produced 2 very informative handbooks on IBM. One is for employers and the other for employees. I downloaded them and after giving the employer booklet to my Manager, there has definitely been an improvement in the way they have managed to work with me regarding my UC. I’m more than happy to share them with you because I believe the information contained in them is very useful whether you live in Australia or not.
    Visit http://www.chronsandcolitis.com.au/ibd-in-the-workplace.php

    I hope this will be helpful :-)

    Cheers from Down Under!
    Anne

  5. Anne H
    Anne HoldenJanuary 4, 2014 at 4:47 pm #

    Stupid auto correct! Lol:-)
    I meant Crohn’s and colitis org and IBD!

  6. Anne H
    Anne HoldenJanuary 4, 2014 at 4:55 pm #

    Oh dear the link isn’t working because my phone keeps automatically correcting badly!
    Try http://www.crohnsandcolitis.com.au/ibd-in-the-workplace.php

    :-D

  7. SteveJanuary 4, 2014 at 10:07 pm #

    Try Remicade infusions supplemented with saccharomyces boulardii. I am on both and my life has changed completely. There are days when I forget that I have UC.

    Keep fighting and don’t give up!

  8. Fred S
    Fred SJanuary 5, 2014 at 6:10 am #

    Kelly,

    My 2 cents. The best way to feel better is to change your diet. Avoiding gluten and dairy products made a HUGE difference for me. Pro-biotics also help. During a bad flare, organic beef broth always made me feel better.

    Foods I avoid: anything with gluten (bread, pasta), dairy (especially cream), milk chocolate, baked beans, tomatoes, spinach, alcohol (especially beer & wine) anything with corn syrup, all artificial sweeteners, too much sugar, too much salt. Also Pork and fatty hamburger.

    FYI: Mountain Dew is a nasty product full of corn syrup and a carcinogenic food dye – a sure fire way to get both diabetes and cancer. I cringe at the thought of why such a product is still sold here in the US when Europeans and other countries ban those ingredients. A perfect example of a healthy soda is a brand called Zevia. Same goes for wheat products – wheat in the US is over-processed and then enriched to make it appear healthy, which produces an excessive amount of gluten. (Get rid of the gluten and diabetes, psoriasis, IBS type conditions and blood pressure all become easier to manage.)

    Foods I am fine with: Potatoes, rice (including rice pasta), corn (including corn pasta), most vegetables (see above), dark chocolate in small amounts (as long as it is not processed with alkali), stevia, almond milk, soy cream cheese. Small amounts of caffeine are ok – I find tea with almond milk and some sugar/stevia mixed in is best. Chicken and fish are the best meats to eat.

    The trick is to eat the most natural diet possible. Pick organic non-GMO foods first. Avoid processed foods full of chemical ingredients. I read all food labels carefully. You will go through some trial and error to learn what works best for you.

    Best of luck,
    Fred

    • AdamJanuary 7, 2014 at 9:03 am #

      Awesome info/advice Fred!

      (I totally agree with you about Mountain Dew and other soft drinks for that matter)

  9. HEATHEN HOLIDAYJanuary 5, 2014 at 8:24 am #

    What have you done to ease flare ups with UC?

    I get on a strict diet of only vegetables, fruit and sometimes meat (chicken or turkey) diet. If it’s REALLY bad, I get organic vegetable broth and try to drink all liquids for as long as I can to give me colon a break and clean it out. I also might up my dose of prednisone and do a quick taper which the Dr. hates. (I know you hate it, but if you take a small dose of lorazepam with it, it gets rid of the psycho side effects and jitters from the dreaded pred).

    What foods do you typically eat that seem to soothe your stomach during a flare?
    Bananas, pineapple, steamed carrots, steamed brown rice, mushy foods….coconut water. The vegetable steamer and crock pot are my best friends. I don’t cook or bake anything because it takes the moisture out of the food.

    Has anyone experienced a fever or nausea with UC?
    YES. I get low grade fevers. I take half a percocet and it knocks it right out, along with the joint pain. Dr’s are sketchy about giving out narcotics, but we are not supposed to be taking Ibuprofen and they are in existence for a reason. Not too many problems with nausea…. that could be a drug side effect.

    What medications have you found useful?
    Asacol, prednisone, percocet as needed… lorazepam as needed…

    What medications have you found to have the worst side effects?
    REMICADE almost killed me. I can’t say enough about how much I hate it, there is not enough room here to tell you the hell I went through with Remicade. 6MP made me feel like I was going to die, too.

    How can you get some of your energy back and what do you do to help control joint pain associated with UC?
    I have been experimenting lately with total nutrition meal replacement shakes, all organic and NON-GMO. I don’t want to be a sales person here, so I won’t say the name of the company, but so far, I am loving it. I drink two shakes a day and a small meal, and I have more energy than usual. Refer back to percocet for the joint pain and fevers.

    ***How do you tell your boss when you are experiencing UC symptoms and are struggling to work?
    You flat out tell your boss that you have the most unglamorous and treacherous disease a female could ever get and that if you have to run to the bathroom, you have to run. At the end of the day, they don’t have any sympathy for you at all because people are selfish and they just want you to do your job, so don’t think you’re going to get any, but at least tell them what’s up so they at least KNOW that you have health issues when you can’t get something done. Also.. the Crohns/Colitis foundation will send you a free plastic card that says something like Medical Emergency bathroom use. I use that card sometimes if need be to use a bathroom without people giving me a hassle.

    How do you tell people around you without giving out too much information?
    I tell everyone I have colitis. I don’t care. I have lost all my shame and had so many embarrassing situations, I don’t care anymore. It’s survival at this point. These bodies are so weak, I can’t wait to turn into a robot and never have to eat or go to the bathroom anymore, LOL.

    What are some ways that have helped you stay positive when you are feeling your worst?
    Getting on the Internet and reading, reading….researching… hearing something new that someone has tried and trying that. It gives you hope that something JUST MIGHT WORK. I have learned so much the past 3 years especially about food and diet, and am still always experimenting. New information and my son are what keep me fighting. We are in a constant war, there is always a battle, and we have to win. We have to beat it or it will beat us.

    How do your kids/husband/family/friends feel about your disease?
    My son is my bathroom team mate when we are out in public. He is my official purse and key holder and he knows the drill that we might have to get up quickly to run to the bathroom. I am sure when he gets older he is going to be embarrassed by it, but right now, he lives with it and doesn’t ever complain.

    Do they express a feeling toward you of being a burdensome part of life now with UC?
    Not yet… but it is a hassle, no doubt about it. Dealing with a sick family member is no fun, period. I just make it up to him in other ways when I am feeling good.

    What foods tend to cause the most gas/bloating?
    This is a difficult question, because sometimes I can eat something and have no reaction and other times, I bloat out. It’s not consistent, so it’s hard to technically weed things out. It’s not a black and white issue. Just other day, I believe I ate too much garlic, which now I think caused me to bleed, but if I didn’t eat the entire bulb, I might have been ok.

    Has anyone experience a different smell of their stool/gas after being diagnosed with UC?
    YES. It’s all random, it’s all different… you never know what your colon is going to give you. It has been toxic at times, to nothing at all.

  10. Sarah A
    SarahJanuary 5, 2014 at 8:58 am #

    Hi Kelly,
    My name is Sarah and I’ve been dealing with this for about 5 months, so kudos to you for managing your symptoms for so long and STILL trying to find ways to stay active and positive. I hope that you begin to find relief and feel better soon. Like you, Prednisone had horrible side-effects for me. I’ll never touch that stuff again either. Nothing has worked for my flare except Remicade, which I understand many categorize as “poison” but for me, at least for now, it’s been a miracle drug. I don’t intend to stay on it forever, but I was bleeding out of control, anemic, etc. and something needed to be done ASAP in the short-term. As for telling my employer, I held off saying anything for months until she began noticing me not looking well, not acting myself. I waited for her to bring it up (she simply asked me if I felt okay) and so I said, “Do you mind if we talk for a minute?” We went into her office and closed the door, and I prefaced the big reveal by saying, “I apologize if this is too much detail, however it’s been going on for about twelve weeks now, I can’t hide it anymore and it is what it is.” I then gave her the abridged version, mentioning blood when I went to the bathroom, fatigue, the side effects of the meds, etc. I tried to leave out phrases like “poop” and “stool” so as not to offend her. Turns out she wasn’t disgusted at all, she understood, was very sympathetic and ultimately told me she wished I’d come to her sooner. The same with colleagues – I didn’t tell everyone explicit details, just the handful that I work with frequently, and to varying degrees. Everyone has been incredibly supportive. Also by “coming out” at work I discovered a couple of my peers have Crohn’s and Colitis, and they were more than happy to share their horror and success stories. Honesty is always the best policy I suppose! :) And last, as for diet, I was told to go low-gluten and it REALLY helped with my symptoms. Everything else has been a process of elimination – through trial and error I’ve figured out what will make me bloat or what will send me running, and I avoid them (too many fresh veggies, onions cooked or otherwise, anything fried, red meat and/or sausage, anything with cream, anything with too much sodium, etc.) But really, eliminating gluten from the majority of my diet really calmed things down, so I urge you to give that a try if you haven’t already. Keep truckin’ and I hope you feel better soon!

  11. SherJanuary 5, 2014 at 3:24 pm #

    Hello, your story sounds familiar to well, most all of us on this site. I had/have all of the same questions you asked, some of which I now know the answer to and others (after having this for 12 years!) I still have no idea! I’m going to give it a go at answering…

    I’ll give you a brief summary- I am also currently in a flare with some good days and some horrible, it began in August after being symptom free and med free for over a year.

    1. To ease a flare I have to begin w/ letting go/avoiding stressful situations as much as possible… switching from coffee to green tea and going back on a strict diet
    2. Foods that soothe, plain foods, not processed, no sugar, to bread… Usually a banana for breakfast, plain rice for lunch, fruit, kefir.
    3. I have experienced fever/ nausea for sure at times.. I think it’s your body’s response to fighting the inflammation
    4. Useful meds- I also have been on pred and refuse to ever go back on, psychosis and very bad headaches are only a few, I had side effects months after stopping as well. My doctor prescribed me proctofoam, which is a steroid administered at the other end this time and it did get rid of the blood… I was only on for 2 weeks and did not have to taper off, didn’t get any of the side effects, I gained a few pounds back, but that was only because I was feeling better to eat again. I also take lomotil during a flare because it decreases my trips to the bathroom. I hope I can be completely med free soon.
    5. See #4 (pred). Also imuran did nothing for me, I had to go in all the time for blood tests, just am added pain in the butt… I’ve tried all meds and I honestly think they all stop working after a while, at least they did with me.
    6. Energy is a hard one, one day when you start to feel better slowly your energy is just there! I encourage myself to work out on the elliptical for 20 mins a few times/week, it also helps with the joints, my knees have been killing me lately!
    7. The dreaded BOSS! Now this one I find hard, I hear others say, ” I just told my boss and I tell everyone and it’s all fine and dandy”… That is not me, I find it hard to talk to my boss about, I also don’t want to seem incapable of what others can do or put myself in a different category, I also know how others judge and may think she always has an “excuse”… I do tell them I have a weak stomach or not feeling too hot, they do know I have IBD, but I do keep people in the dark sometimes when I’m going through a rough patch, maybe it’s the introvert in me, but I find myself struggling to be open about it.
    8. As for family/friends it is really hard to try and do everything they sometimes want to do when you feel no energy, body hurts, stomach cramping…I’ve had to just say “no” a lot of times, have a “me” day, instead of put myself in a situation I know I cannot thoroughly enjoy, I have a hard time in the evening, when I know whatever I eat will make me sick, but my spouse is still hungry… I don’t feel like making anything, it’s hard!
    9. Staying positive! I just remember I don’t have to be everything to everybody, I do what I can when I and if I can, I didn’t ask for this disease, it was given to me, I’m gonna make the best of it, I’m gonna take a few mins each day to myself (hot bath, cup of tea, book) whatever it may be, and when in a flare treat it like a broken limb… take things slow, be gentle with your body, don’t overdo things!
    11. Food that cause bloat gas, this will be different for everyone, sugar, pop, cheese for me, and some days anything I put in my mouth!
    12. smell of stool… Um yes it’s awful the looser stools the worst for me. That is the embarrassing part of having to share a work bathroom with my entire office, I try to hold it all day, I know that can’t be good either!

    I know this is detailed, but I hope it helps, or at least you know others can relate! …. Sher

  12. SteveJanuary 8, 2014 at 5:06 pm #

    It’s amazing how many different approaches there are to specific diets among UC patients. When I have a flare, I can’t even look at vegetables or salad without running for the bathroom! White bread, white pasta, white rice, potatoes, scrambled eggs always helped me feel so much better. Makes you wonder why so many people with the same disease react so differently to food and medications.

  13. Sara W
    SaraJanuary 8, 2014 at 8:46 pm #

    Your story sounds so similar to mine! :/ I am currently in the worst flare of my life and I’ve been diagnosed for 4 years. I’ve done/gone through most drugs and currently on Remicade which last treatment was 12/5/13 and I have one scheduled 01/13/14… if I can make it that long. I am also on prednisone… have been for this flare since 10/2013 and an ER trip in 11/2013 and hopsitalized for blood transfusion a week ago. I seriously think my body is killing me. I’ve been told that if this monday’s remicade doesn’t work for me that I’ll be hospitalized for iv steroids for a few days. I seriously at the end of my rope with this stuff. I can not afford to be this sick. I am on my second week off work and only work part time. Am a single mother of a wonderful 7yr old daughter and a great family that helps with her and letting me rest up a little but I can not live through a flare that last a solid three months and I loose over 2 units of blood and loose thirty pounds over. Not that I cant stand to loose the weight but not like this. There is so much swelling in my body that my muscles and joints kill me my whole midsections aches even with hydrocodone and tylenol. Would love to know what other options I have to get out of this flare and never return to a flare again.

    • HEATHEN HOLIDAYJanuary 9, 2014 at 8:22 am #

      I would cancel that next Remicade infusion and just get on the steroids. I had 2 Remicade infusions and it made me WORSE. It did nothing for me at all but drain every once of energy out of me, bloody noses, puking, extreme joint pain. I cried every day for over 6 weeks that it stays in your system. I seriously just wanted to die. They had to put me on the prednisone to get me out of the flare.. that is what worked, CHEAP PREDNISONE, not SUPER EXPENSIVE REMICADE and eating super duper uber healthy… DIET is EVERYTHING.

      You will feel MUCH better when that Remicade gets out of your system, unfortunately, it last a little over 6 weeks from your last infusion. Funny how they prescribe prednisone WHILE you are on Remicade. That’s what their whole reason was for putting me on the Remicade, to get me off the prednisone. LMAO. The pred works… it’s just cheap and they can’t make any money off of it. And yes, prednisone does have side effects, but take a small dose of lorzepam with it and it will get rid of the psycho side effects and jitters.

      • Sara W
        SaraJanuary 9, 2014 at 3:26 pm #

        Remicade has been working for me over the past year and a half. This current flare does feel like its going to kill me though and with the length of this flare (3 months) and this last month landing me a hospital stay with a blood transfusion and IV steroids… I am left wondering if I should shoot for another hospital stay with IV steroids or squeeze in an early remicade treatment. I am torn because neither is cheap nor are they healthy. I’ve been on prednisone scrips for months too.

        • SteveJanuary 9, 2014 at 6:45 pm #

          Stay away from Prednisone. It is doing irreparable damage to your body. If Remicade has been well-tolerated, stay with it. Try saccharomyces boulardii in conjunction with the Remicade.

  14. MeganJanuary 12, 2014 at 6:14 pm #

    Hi Kelly,
    I hope you are doing well and some of the tips others have given you in the past could weeks have help you. I have two very energetic small kids myself.
    For me – to ease flare ups I take probiotics. I have definitely experienced nausea but if I stick pretty close to the SCD diet or gluten free I can keep those flares and nausea away. If I do have nausea, chicken soup, and really any soup made SCD legal works wonders. I am currently on sulfasalazine and it is the only med that has not given me side effects.
    My energy comes with eating SCD and exercising at least 4 days a week. I take glutamine, fish oil, glucosamine chondroitin. The days I forget the glucosamine, my joints ache. I am very open about my UC with my boss and coworkers, but I work in a hospital, so my coworkers here what ails people all day long. To people I don’t want to share my issues with but who are curious why I can’t eat certain foods, I tell them I have a tummy issue or a disease in my intestines. The way I stay positive is going to this site and knowing I am not alone and reading what others are doing to keep themselves healthy. My husband and kids are fine with it. We all have adjusted and some days I have to nap and they got to deal with it. They all have their favorite SCD foods or gluten free ones. Since I have altered my diet, the running to the bathroom or not being able to go camping or go to the beach and enjoy family time without running to the toilet, is no longer an issue.
    I have ridiculous amounts of bloating from UC, on top of that I also have diastasis recti from being pregnant so there are no abdominals holding it all in, so at the end of some days, I look 3 months pregnant but the probiotics really help a lot with the gas and bloating. even though it is super expensive, I order the VSL #3. hope you find some tips and help that work for you.

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