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In The Midst of Flare-Up Fun Times

Heidi colitis flareBio:

Hi there fellow UC’rs and hi Adam. My name is Heidi and I was diagnosed with UC about 8 months ago. I am currently in the midst of a horrible, gut-wrenching flare that I can’t seem to get a handle on, despite my best efforts. I just spent all yesterday in the hospital hooked up to an IV to combat dehydration and then handed a prescription for prednisone. I am taking asacol and a goood probiotic daily and have been super strict on what I am eating: no coffee, no chocolate, no alcohol, no wheat, no dairy. I’m pretty much down to eggs, a little fruit, veggies and chicken but if anything my flare seems to be getting worse by the day. I am going on two months now of pain and agony and all I can say is that it is a war-zone “down there.” I have tons of bleeding and am going to the bathroom 15-20 times a day. Thanks for listening. I really want to be positive, but yesterday for the first time I just broke down and sobbed as I am so exhausted and worn out. Not sure what to do…

Colitis Symptoms:

Aching back, cramping, diarrhea, bleeding, and severe exhaustion.

My Colitis Story:

I am currently in the midst of a horrible, gut-wrenching flare that I can’t seem to get a handle on, despite my best efforts. I just spent all yesterday in the hospital hooked up to an IV to combat dehydration and then handed a prescription for prednisone. I am taking asacol and a goood probiotic daily and have been super strict on what I am eating: no coffee, no chocolate, no alcohol, no wheat, no dairy. I’m pretty much down to eggs, a little fruit, veggies and chicken but if anything my flare seems to be getting worse by the day. I am going on two months now of pain and agony and all I can say is that it is a war-zone “down there.” I have tons of bleeding and am going to the bathroom 15-20 times a day. UC has really drastically altered my life. I have two active toddlers, and it is so difficult to function, much less be the super-fun and cool mom that I want to be to them when my life for the past few months has been dictated by running to the nearest bathroom or lying exhausted and crampy on my couch in my bathrobe. I do not care for my GI doctor as she has a horrible bedside manner and is very closed-minded. When she diagnosed me she told me little about the disease but said in no uncertain terms that diet had absolutely no effect on it (which I don’t buy), handed me a prescription for Asacol and said that I would have to take it every day for the rest of my life, or have surgery, which she claimed would be very risky. I was given no other options or hope. I think I am going to try to find another doc. I guess I am terrified of not being able to get a handle on this. I am scared it will always be this bad. I am used to just attacking and powering through any obstacles or challenges I encounter in life, but mama cita! This one has brought me to my knees in humility! Thanks for listening. I really want to be positive, but yesterday for the first time I just broke down and sobbed as I am so exhausted and worn out. Not sure what to do…

Where I’d like to be in 1 year:

Completely symptom and medication free!

Colitis Medications:

On Asacol 2400 mg. Doesn’t seem to be doing much. Scared to go on the Prednisone.

written by Heidi

submitted in the colitis venting area




13 Responses to In The Midst of Flare-Up Fun Times

  1. Tom
    Tom July 19, 2012 at 6:44 am #

    Hi Heidi

    Sorry to hear you are not very well at the moment. It does get better!

    I was in a very bad flare and for me, all it took was three days of 40mg prednisone a day to reduce my symptoms and my discomfort. I didn’t notice any side effects during that short burst either. Stopped taking it the first day (third day of taking it) i felt better. Ended up back on it a month later but that’s another matter.

    So all I can say is, try it for a short period as it certainly worked for me to get a flare under control.

    Good luck!

    Tom

  2. Midwest Dave
    Dave July 19, 2012 at 7:27 am #

    Okay, first off: hello & welcome to the boards! I’m Dave & I’ve been suffering on & off for almost 15 years. I was diagnosed 10 years ago with Uc throughout my entire colon. Right now I’m in California, hospitalized with a severe flare. I just moved here from Wisconsin in Februrary and its been nothing short of a nightmare. Culminating in this hospital stay. I’m going on my fifth day. I wrote because of what you said about your doctor. You tell her directly from me…she can fuck right off. Fuck. Right. Off. Any doctor that tells a patient diet plays no part in their disease is someone to get as far away from as possible. Find another doctor & get another opinion. Now. When I was first wheeled into the ER, 8 years ago, the GI specialist asked me what family member I got ulcerative colitis from. “No one”, I said. (Mind you, she & I never laid eyes on each other before…ever.) “Oh no. Someone is your family has this!” she said. “No. Divorce, alcoholism, & adultery run in my family. Ulcerative colitis does not. She shut up. But still didn’t believe me. I stabilized on that first visit otherwise there was talk of performing surgery. But it was my first really severe flare & I took to the treatment. Before I got out, they said the same thing “Eat whatever you want to! Doesn’t matter because if it’s going to flareup, it will flareup!”. So I got out & ate whatever I wanted. And I wound up in the hospital again 8 months later. This time they had to start me on Remicade infusions. I also started following the SCD diet religiously. I got my life back. Hadn’t felt that good in years. My point being: when encountering doctors who don’t listen or accept your ideas or thoughts, get another one. It’s good to say “No, thank you” and move on from them. In this day & age, with all the information that’s available now, for any licensed doctor to think diet plays no part in your health and your disease…they’re an asshole. I don’t care how many years they went to school. If there were more funding for the NHI so they can do more research, we’d be getting faster results. Whatever you can do, look into turmeric, boswelia, fish oil, l-Glutamine, Vitamin d3 supplements, Lucy’s Kitchen Shop which has the best supplements specially geared towards those suffering with UC, buy Breaking the Vicious Cycle book, look into yoga (Bikram, Hatha, Ashtanga,) or tai chi. Fight this son of a bitch. The flare I’m in now was caused by out-of-control stress, that I have no doubt. I took myself off the infusions 6 months ago so I don’t know where I’ll be with that. Anybody’s guess. Never be afraid to question or doubt. It’s your body and your life. Find a new doctor. But tell her I said to fuck off first. Feel better, sweetie.

    • Bev July 23, 2012 at 9:41 am #

      Right on Dave!

      I have not found ONE good doctor yet!! None of them are open minded…and even when I tell them I have the UC in remission from probiotics, L-glutamine and astaxanthin, they say that it is just a coincidence! Or, a placebo effect!!

      I think doctors relly hate it when you help yourself, without medication. I really do. What other reason would there be, other that $$, that they would tell you you are a liar?

      F**k right off doc!!! I love it!!! If only I could get the nerve up to say that to a doctor…lol!!

      Bev:)

      • Avital August 30, 2014 at 6:39 am #

        Hello Bev,
        I have UC for years, 17 to be exact. Bounced off prednisone, asacol, more prednisone and so on..developed adrenal insufficiency from being on budesonide for too long…sad..
        your story of supplements sounds terrific, could you give me the doses to stat with for the supplements you take please. I ned to help myself fast or get rid of the colon, its been too long and I’m suffering, life is short.
        Thank you!

  3. Debby July 19, 2012 at 1:59 pm #

    Heidi,

    I,too,have been in the active phase of UC and had small children that I wanted to enjoy. Please try the prednisone. If it works for you, it will work quickly and you will gain strength and energy you need to function. Yes, there are side effects,but you do not take predinsone forever. The side effects go away after you taper off prednisone. For me it was the only drug that worked-as asacol and all the other drugs in that classification made me very ill.

  4. Bev July 19, 2012 at 2:05 pm #

    Hi Heidi,

    Sheesh! I really hate to hear what you are going through.

    I have a terrible GI doctor too…also a female…don’t know why I mentioned that. I guess I just think females should be more understanding, perhaps? She gives me almost no hope and always leaves mw feeling worse, and with more questions than answers.

    My UC is about as bad as it gets. Pancolitis, total colon involvement. Believe it or not…I am in total remission! No bleeding, no pain or cramping, firm stools, once a day. I was taking up to 12 asacol pills per day, and was also told that I would need to remain on the for life. I’ve been on this whole UC merry go round for 13 years, now, so I am skeptical. I don’t buy the fact that there is no cure. I have healed my colon, which I think, is the only answer. I may have UC lurking somewhere in there, for lifem, but I plan on not letting it rear it’s ugly haed ever again!

    So, I was on 12 asacol per day, because of a horrific flare I was in, after having pneumonia, and taking a strong antibiotic to get rid of that pneumonia. The asacol was doing nothing at all. I refused the prednisone, remicade, or imuran that the specialist was recommending that I take. I decided to try a strong probiotic, and in two months (it took that long to see marked improvement), I was feeling so good, that I started to decrease my asacol by a pill every other day. It was actually making me bleed MORE and have looser stools! So much for helping me! Anyway, after I stopped the asacol altogether, I still had a bit of bleeding, so I went to the vitamin store and asked what elas I could take to ‘heal’. They recommended L- glutamine for repair of my colon (only one scoop a day in juice), and astaxanthin, for inflammation. Well, one week later and I am totally symtom free!

    Have you given your probiotic time to work? It takes some time…up to a couple of months. Does it ahve at least 50 billion bacteria in it? You only need one capsule per day if it does. That. along with the L-glutamine, and that astaxanthin has saved my life! My doctor told me not to waste my money on natural stuff…well, the probiotic is $40 per month, the L- glutanmine is $20 for two months, and the astaxanthin is $20 for three months. I was spending $400 a month on asacol!!! WTF, I say! The asacol was WAY more expensive and it didn’t even work! It just made things worse. And, honestly, I can eat WHATEVER I want to now. Even raw broccoli, which would have killed my guts only 6 months ago!

    I know we are not all the same, but why has this worked for me? I still have stress in my life. The flare did NOT just go away on it’s own. Perhaps it seems like the probiotic is not working for you because the asacol is making your flare worse. It happens in alot of people. The asacol can actually make UC worse. The probiotics seem to take some weeks to work, but the other two things took less than a week! I don’t have to rush out of bed in the morning to make it to the bathroom anymore! I am so happy! I feel normal again!!

    I have read about taking a million different natural things on this website, and on the internet, but I am only taking three things and they have worked!! Give them a try…a good 50 billion bacteria probiotic, L-glutamine, and astaxanthin. Please try them! You have nothing to lose. They aren’t dangerous. If the asacol is not working, why take it?

    (I also drink some kefir everyday. That’s a runny organic yogurt that also has alot of good
    bacteria in it. You don’t have to, but I am, don’t know if it’s doing anything extra for my UC, but I thought I’d tell you about it too).

    Cheers, and if this works for you…spread the word, like I am trying to do!

    Bev:)

  5. Bev July 19, 2012 at 2:08 pm #

    Oh, by the way…I have been in ‘remission’ from cramps, urgency, etc for almost six months now! There was still some bleeding though. Now, I am in total remission, without any blood at all, for two weeks, since adding the L-glutamine and the astaxanthin.

    No joke, no kidding!!

    Bev:)

    • Heidi
      Heidi July 20, 2012 at 12:47 pm #

      Hi Bev,

      Thanks for the tip. I will definately add those supplements to my regimin. So encouraging to hear that you are doing so well. :)

      • Bev July 23, 2012 at 9:33 am #

        I know!! I really can’t believe it myself. I thought I was never going to improve during that last flare. I was even considering surgery!

        I really really believe we have to HEAL our colon, not medicate it. Maybe that is the only way to have a ‘cure’.

        Cheers, and PLEASE let us all know what happens. Give it time…like a month or even two. I think we may just be on to something, and can cure this ourselves, instead of relying on the medical or the science community to do it for us. That could take forever….

        Cheers:)

  6. Magnus July 19, 2012 at 9:45 pm #

    Hi Heidi,

    Your situation is definately not a good one. But I just want to say that prednisone really can help you. That was what got me out of my first couple of flare ups, and also helped combat the ones after that. So don’t be scared to try it! I know the side-effects can be bad, but can they really beat 20 times a day of bloody stools and cramping? Don’t think so.

    Consider it! Prednisone has helped me, and it might just work for you too:)

    Feel better! Your situation sucks, I know, but staying positive is key!

    Good luck!:)

    – Magnus

  7. Blake July 22, 2012 at 9:53 pm #

    Hey Heidi, I really hate reading stories like yours cause my situation was basically the same and I know (we all know) what you’re going through. I found out I had UC early 2011 (I was 30), like you I was going about 15-20 times a day always with blood. I tried the diets, all the drugs, kept a journal on everything and nothing seemed to work. I was angry with my doctor also when he wasn’t open minded and claimed UC is not linked to any types of food. I found this hard to believe considering I demanded that I be tested for Celiac’s at the time my UC was really bad (I have a sister that has been Celiac her whole life) and the test came back positive. I often wonder how long I have been Celiac and if that is the reason I got UC from all those years of eating food I didn’t know was doing damage. Anyway, fast forward, I had my colon removed in December 2011. I am on my way to a J Pouch. I just got my 2nd surgery done in June, final surgery in August. I couldn’t fight UC anymore, shitting 15-20 times a day for almost a straight year beat the shit out of me. I have worked out my whole life and was a solid 200lbs and after the year with UC I was down to 165lbs. My last hope was Remicade and about a week after I took that first dose I got a crazy drug rash all over my body. I threw in the towel and with the urging of my doctor I agreed to get surgery. My doctor said I could get surgery now or be wheeled in later for an emergency surgery because my colon was basically rotten and it wasn’t going to get any better, and I truly believe it wouldn’t have gotten any better and I’m glad I made that decision while I was still healthy enough. I urge you to get a different doctor, yours sounds like a biatch. I didn’t find a GI I liked till the 3rd one. A lot of people I read on here have great success with pills and diets. A lot of people on here think going 3-5 times a day is bad also. I say 3-5 times a day would be fantastic. Your situation sounds harsh, once you get up in the 15-20 range, it’s hard to live with, especially with toddlers. Get a new doctor, if you live near a big city, chances are they have a good hospital there with good GI’s. I didn’t realize how many people had this disease until I found my final doctor and all she dealt with was UC and Chron’s patients and had seen it all and knew her shit… literally. I wish you the best, but wanna let you know that if it does come down to surgery, don’t be afraid of that either. It’s the only cure out there that I know of for now. I’m freaking cured and I feel really good now. Yeah, I have been wearing a poop bag for 7 months now, but I would never trade it back for that crummy colon and it’s only temporary because I am getting the J Pouch. I hope you find releif soon whether it be remission, some kind of drug, diet or whatever you decide.

    Blake

  8. Steve August 1, 2012 at 4:28 pm #

    Hi Heidi…I am sorry you are going through so much. I have to agree with a few posters here to find a new doctor. Anyone that tells you diet has zero effect is not someone you should be trusting with your life. I mean, who lives every second with the disease? You or her?

    I also was put on Asacol and had a bad reaction to it. I was more sick on it than without it so if you can attempt it, find a doctor and think about going off Asacol. As soon as I started seeing the blood, I went off it and never went back. Try SCD or check out the raw vegan diet. Both can do amazing things with UC sufferers, in different ways. Myself? I was raw but I am trying SCD because I can’t travel 50 miles one way to get my food a few times a week anymore. If I can, I will likely go back to but I also want to see if I can make it on SCD…so people stop looking at me so weird when I avoid most foods under the sun…except those that come out of the Earth. lol.

    No matter what, trust what you are doing first. Do not let a doctor dictate what is best for you if they cannot afford to listen to you. I made that mistake once and I ended up unable to see the doctor when he finally called an office visit…I felt guilty because he made me feel as though I was stupid and he knew everything because he had gone to medical school. Again, he does not live with the disease. I am. Best of luck and let us know how you are doing? Steve

  9. John August 2, 2012 at 7:24 am #

    Hi Heidi,
    Like many others, I too know your pain. A UC episode changes the way your live your life. After about three months of not knowing what was going on and seeing a half a dozen doctors I finally found a doctor who would look at everything. I initially was on 40 mg of Prednisone and it stopped the symptoms within a couple of days. After a couple months I tapered off the steroids. At the same time I began taking Asacol. When I finally tapered off the Asacol I had a relapse. Once again back on the steroids and Asacol and thgen began Remicade infusions. When the Remicade infusions were finished I was put on Azathioprene. The combination of Azathioprene and Asacol combined with a smart diet (no drinking and limited sweets and breads) has kept things in check for about 3 years now. I do always live in fear that the next relapse is right around thew corner though.
    In terms of Prednisone, it helps. It has some side effects: muscle cramps, poor sleep patterns, edginess. But it does help and it is not forever. I know that when I was in the throws of my attack I would have given anything to make it stop. The steroids were a doorway out but not the answer. Listen to your body and the doctors. Find one you trust and who listens to you. Do not take yourself off medications or change dosages without talking to your doctor. There is a fine balance to controlling the disease and having a relapse.

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