This flare is really getting me down… it’s worse for no reason!!!

The flare is getting worse! I am scheduled for a colonoscopy about a week and a half after Thanksgiving. Almost as soon as I scheduled it (last Monday) my flare that was manageable and not so bad (but was there) became increasingly worse. I don’t know why… it just did. I didn’t change anything I was eating.. medicines stayed the same, no additional stress… The B got worse, and then the D. Now the toilet water is pink off and on—this was not the case before. This weekend was the worst! I’ve been waking up multiple times to go to the bathroom in the middle of the night and in the morning. During “movements” my guts feel like they are being pulled and squeezed from the inside. An incredble ache overwhelms me and afterwards, I can feel my pulse throbbing in my lower abdomen. It hurts and feels like I’ve been punched repeatedly in the gut for some time afterwards. I just want to cry, but I don’t I stay as strong as I can. The fear of being hospitalized overwhelms me.

Forget if a friendly feline tries to walk on my belly, I must maneuver them away or block them from standing on my abdomen. It just hurts. I don’t understand it. I’ve followed the SCD religiously since April. Doing the intro diet several times. Actually, when this worse onset happened last week, I started it again. It’s just gotten worse. I don’t think it’s working for me. I called the doctor this weekend and explained to the doctor on call my situation and said I don’t want to get sicker before the colonoscopy in two weeks and end up in the hospital. (and of course this happens right before Thanksgiving!) So, he increased my prednisone from 40mg to 60mg. Today is my second day at 60mg. For sure I hope if settles it down a bit.

I am anxious to get this colonoscopy and hopefully they will put me back on the drug I was on before that worked for 5 years (mercaptopurine). I don’t want to try anything else like remicade of humira, not yet (when 6MP worked for so long before, I just wanted to try to come off of it… bad decision on my part) I am definitely welcoming it now. I want relief and I’m not getting it. I want my life back.

18 thoughts on “This flare is really getting me down… it’s worse for no reason!!!”

  1. Hey Sunworshipper,
    Have you noticed any response or let down of the symptoms from the increased prednisone yet? I sure hope so.
    i’m no doctor, but I was really severe like you are talking about exactly two years ago from Oct-February. Anyways, for some reason I noticed a super spike in my severe symptoms one time to what I would say ULTRA Severe. more like pinkish red in the toilet etc… and sometimes collapsing at the toilet from being so weak…
    Anyways, my genius GI doc ordered a c-difficile stool sample on me, and sure enough it came back that I had C-diff in addition to my colitis symptoms. Once I treated the C-diff(with antibiotics which I absolutely don’t love unless REALLY REALLY needed) symptoms came back a few notches to manageable…
    anyways, I had no idea why he ordered that particular stool sample, but on the day after thanksgiving he called me to tell me to run to the pharmacy for Vancomyicin antibiotics(which set me back about $200).
    So, just might be something to bring up with your doctor. In speaking/emailing/chatting with other UC’ers, it seems that c-diff when we are all flared out is not too uncommon.
    I really wish you the best, this current story is hard to read as far as emotionally getting through it knowing you are suffering(as we all have been or are currently), but I hope you know that we are all behind you no matter what decisions you and your family and doctor make. At the end of the day, only you will know when you are feeling better, and I really think you will have that feeling soon.

    1. Hey Adam,

      I haven’t noticed any response yet from the increase in prednisone, unfortunately. Last night, while having a BM, it hurt so bad in my gut, I felt like I was going to puke! And all I get anymore is D! I’ve never been in pain like that before… feeling so nautious from it. Afterwards, I just went to the couch and collapsed for the rest of the night. I haven’t collapsed at the toilet yet, but it sure felt like I might of last night! I hate feeling so weak. I have stuff I need to get done, and when I feel like that, nothing’s getting done. The chores will have to pile up…

      I was tested for C-diff a few months back, and the result was negative. Are you saying that you can get an onset of the bacteria at any time, especially while in a flare? So, should I get tested gain, maybe? I am ready to try anything now.

      I ordered the VSL#3 probiotic off of Amazon on Sunday. I hope it gets here soon! My doctor told me about it back in May, but I brushed it off because I had just started the SCD and it seemed to be working for me at the time… plus the people on the SCD had said that sometimes it makes you worse. Well, like I said, I’m ready to try anything now. I read more about it and many people have actually benefitted from it… so I’m hoping that I will too. My first flare way back when started after a round of antibiotics… so I’m hoping this dose of super probiotics will help!

      Thanks for the kind words… I’m keeping my fingers crossed that the increase in prednisone helps, and the probiotic gets here soon! I don’t want to spend Thanksgiving in the hospital, that’s for sure.

      1. Hey Sunworshipper,
        I’m sorry to hear that yesterday wasn’t showing relief with the increase prednisone.

        As for the c-diff, I remember reading up about it quite a bit when I tested positive for it. There were reports that stated it can come up more often with IBD patients when they are in flares or the system is out of wack. I wish I bookmarked these studies, but I didn’t. As for my case, that seems to be how I came up with C-diff. I had not taken any antibiotics prior, and other than getting my colonoscopy, I had not spent any time in doctors offices or hospitals which are common places to come down with c-diff apparently.
        Its a shot in the dark as to why your symptoms have gotten so nasty so quickly, but maybe something to talk with your doctor about.

      2. Hi there – it sounds as though you have moved up a notch to pan-colitis. Either way if the 60mg of prednisone isn’t working you probably need to go in to hospital for a 5 day course of IV steroids. I wouldn’t delay this as things can get very tricky if you hold off. In the meantime drink plenty of diarolyte, lucozade sport and ensure plus to keep your nutrition and salts up. Dont stop eating or anything like that – many people think that by stopping food intake there symptoms will be less – however unfortunately you will get the D no matter what.

    1. Hi Reid,

      Everything is SCD legal and my supplements haven’t changed in months. I take a b-complex, vitamins D and C, and I drink a tsp of cod liver oil before dinner that you recommended. All I’ve been eating is lean meats with only sea salt on them (chicken breast, steak, broiled beef patty, various broiled fish) I was eating the chicken carrot soup, but stopped that. The only other thing I eat is Avocado, pear sauce, home-made yogurt and scrambled eggs on the weekends. an occasional overripe banana. That’s it.

      The day before the severe symptoms, I was out for the day and overstayed somewhere I didn’t think I would be very long. I was kind of stuck there all day and the only thing I could eat was an orange, some cashew butter I had packed as a snack, and some cracker barrel cheddar cheese singles that were at the house I was at. So I was thinking it was the orange, cashew butter or cheese, but I’ve eaten all these things before without increase in symptoms… and usually the worse symptoms subside after a few days. It’s been over a week now, and getting worse.

      1. Something is irritating your gut. It doesn’t sound like you are eating the cheese, but I don’t trust Kraft cheeses, especially in a singles package. Probably has an anti-caking agent on it that’s not listed as an ingredient.

        Steak and beef can be hard to digest. Not sure about Avocado because I don’t eat that. Sometimes when my symptoms are bad, I just stop eating and the D goes away. Nothing in, nothing out. But that can be dangerous for other people to do.

        If you have the energy, you might try simplifying things. Stop the extra supplements, only eat banana and chicken if you are absolutely sure you tolerate those normally.

        Peoples bodies change constantly and you might not be tolerating a food you used to be able to. It takes experimentation to find out which.

  2. Wow, you poor thing. I feel so bad for you but I don’t think you are eating properly. You should never eat packaged food-ever! Like the other person mentioned there are always unlisted ingredients. Think of packaged and processed food as poison!

    If I were you I would immediately go on a fast of only consuming Chicken broth-the SCD chicken soup with all the fibrous veggies removed like the book suggests.
    I cannot tolerate banana and pears. This could be the problem. I also cannot take most supplements. Most supplements are bound together with starches-very bad for us.

    Take a rest from all supplements and see what happens. You need to rest your guts big time. Of course I’m not a doctor but I have experience with my own guts and I read a lot about natural remedies. Your colon is having severe spasms. The chicken broth will feel good and help your guts rest. Just like the above person mentioned “nothing in nothing out” but the chicken broth will keep your nutrition up. Make sure you make it yourself. Don’t buy chicken broth.

    Someone else on this site said, “It’s better to spend more hours in the kitchen than the bathroom” What a great motto!

    Good luck to you! I wish you a speedy recovery.

    1. Well… I never really eat packaged food. I figured the cheese was okay… since it was cheddar and aged a long time. It didn’t say it had any anti-caking agents in it… but who knows? But I will stay away from it in the future, for sure!

      I’ve tried taking a rest from the supplements… it didn’t do anything… I’m losing so much weight eating the way I do along with the D, I don’t know if just drinking the liquid is a good decision… especially since I’m due for a scope in a week (I have to do a 3-day liquid diet on top of a little prep since I throw up any of that crap they make you drink. I once went through everything I needed to do for the colonoscopy, only to throw it all up, then I couldn’t make my date because I didn’t have enough time to do anything else. So now, just to be safe, I start only drinking clear liquids 3 days prior, then do a fleet prep kit thing… yay) So… I’m a little worried about the “nothing in, nothing out” scenario. I’m afraid I will get too weak and lose too much weight.

      I do spend lots of hours in the kitchen, but here lately, I’ve been spending all hours of the night in the bathroom. It totally sucks!

  3. Hey Sunworshipper,

    Im sorry to hear of your flare.. I hurt for you.. I just came out of a 18 month flare that I battled so hard with. have you tried Mesaline enemas? I do have 13 weeks supply Id like to donate to someone for the shipping cost.. expiration is 7/2011.. this helps with inflamation and makes contact with inflamation in the lower colon.. I hate to throw them away as they are very expensive, when someone could use them.

    1. Do you still have that supply of meslamine enemas? My son could certainly use them. He has a few, but wants to “save” them, but really needs to use them.

  4. Dear Sunworshipper, I have Crohn’s, but am following your troubles with this persistant flare with concern. It does suck to be sick over the holidays! You have gotten such good advice, but might be time for IV as suggested above, cause it sounds like you have lost much-needed nutrients through the D for sure! I remember lying next to the toilet many times and it seems the the bleakest moment of your life, but try not to despair and know you have all our support. If you go to the ER, at least they can check your vitals and give you electrlytes, or your GI’s office.

    Don’t wait too long if you are so weak and tired! Glad you ordered the probiotics, and don’t be discouraged to hear that it takes time to build up the balance of good-bad bacteria in you gut. The C-diff should be tested again and all your bloodwork. Also, take to the GI nurses about the colo-pre-prep. Reid is right–a prior prep was causing problems. I just had a colo and the gave me “NuLightly”–but I only had to drink half the Amy, so it was easier. I only threw up after the test. In the car on the way home–not so fun at the time! I wrote an article about having colos on my blog if you want me to send you the link!

    Good luck and hang in there! Sometimes these flares come out of nowhere. Take it easy, like Reid (I think) said, have chicken broth (organic) with cooked, soft, veggies and pieces if chicken in it for protein. Chew your food really slowly and well, try to relax and a bit if walking and/or gentle yoga and breathing exercises will help calm things down. Best of luck!

    1. yes… it is aweful to be sick right now. All I want to do is sleep…. unfortunately I still have to go to work. meh. At least I have a sedentary job, ya know?

      Anyway, I started the VSL#3 on Thursday. Yesterday it looked like things were looking up. I had less pain while going to the bathroom, and hardly any blood. I was amazed as it had only been 3 days. I didn’t want to jinx myself… but this morning… oh… it was painful and the B came back even worse. I don’t understand it. I have not gone to the hospital yet… I’m still confident that I am okay enough that I can wait for my colonoscopy on Monday. I’m not stupid, and know that if things get much worse, yes, I will go to the hospital, but as for right now. I think I’m okay.

      I would love it if you could direct me to your prep instructions on your blog. I usually take the fleet prep kit 3 (after doing a 3-day clear liquid diet), but they don’t sell that kit anymore. They only sell the pills and enemas by themselves without the phosphosoda. So I’m attempting to make my own kit using the pills, enema and a saline laxative along with the 3-dy clear liquids… but if you have a better idea… I’m all ears!

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