Ulcerative Colitis Tips


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Just Diagnosed and Freaking Out

Introduction:

Tummy problems for last 20 years or so, mostly bloody constipation alternating with diarrhea. Just diagnosed at age 41. Married for ten years to a very supportive husband. Used to enjoy a fairly active lifestyle before this started. I’m already sick of thinking and worrying about UC all the time.

colitis kayaking

Me doing some kayaking not too long ago!

My Colitis Symptoms Right Now:

Clear mucus dumping, bloating, abdominal pain, weight loss, appetite loss. The mucus dumping is the worst. It’s driving me nuts and the Prednisone isn’t stopping it. I’m sick of wearing a pad across my backside all the time. My doctor told me to treat it like my period, but we all know it’s not the same thing. :)

My Story:

Hi. I was diagnosed with mild UC about a week ago. I started having diarrhea six weeks ago, and I thought it was food poisoning, so I was put on Cipro. The runs never went away, so I went to see my GI. One thing led to another until I got an endoscopy and colonoscopy. This all started just as I was about to start a new job.

The UC diagnosis wasn’t that surprising, since my GI spotted that I had colitis during a scoping eight years go. However, I am currently feeling devastated, even though my doc says my case is very mild. The flare is located in one spot in the right side of the colon.

My biggest symptom is mucus dumping. My doc started me on 40mg of Prednisone, and I’ve already started tapering. My first day on it, the mucus stopped completely and I was thrilled, but since then (the last five days) it has continued, although there’s much less of it than there was before the Pred.

My doc says I need to eat more solids to give the mucus something to bind to, but I’m having a really hard time building my appetite back up to where it was before the colonoscopy. I think this is largely because of anxiety and depression. I know Prednisone can induce these symptoms, and I’m already prone to them. I don’t sleep well anymore, and I often wake up in the middle of the night with a sense of dread.

I realize my case is very mild, but I’m so afraid that my life will be over now. I’m stuck on the BRAT diet until I can get this under control. I’m really afraid that I’ll never be able to eat out with my friends, or go kayaking or running again, or do any of the other things I love to do. I say this even though I’m not having nearly the same symptoms many of you have, and I feel bad about that. I’m also worried about the fact that my appetite hasn’t come back. Argh.

I also already have another autoimmune disease (Hashimoto’s thyroiditis, which is under control with Synthroid) and inflammation issues (allergies and asthma) that have probably made me prone to UC.

Anyway, just at a time I thought I would be starting a new life with a new job, I’m now going to bed way early and slathering stinky liniment on my legs like an old person to fight the calf cramps I’m afraid will wake me up in the middle of the night. :)

Anyway, I was wondering if anyone else has had problems with mucus dumping as their main symptom, and if it went away. This sounds so minor compared to what most of you are dealing with, but I’m having a really hard time coming to terms with it. Also, I would love some encouragement for the anxiety and appetite loss stuff.

Thanks for letting me vent. I have to admit, this illness has already led me to reevaluate my priorities in life, so I guess that’s one good thing to come out of this so far. Also, in case this helps anyone…I subscribe to a Buddhist magazine called the Shambala Sun, and this month’s (Sept. 2012) issue has a great feature on dealing with stress. This has helped give me some perspective on this illness.

Where I’d like to be in 1 year:

Flare-free and having been able to hang onto my job. Able to resume travel and activities as normal. Hopefully the SCD will work out for me.

Colitis medications:

Prednisone, 40mg for five days and tapering off. Jury’s still out on the results.

written by UCinNYC

submitted in the colitis venting area




23 Responses to Just Diagnosed and Freaking Out

  1. Polly
    Polly August 23, 2012 at 8:12 am #

    Hi UCinNYC,

    Sorry to hear about your diagnosis and current troubles!!! As you can see, you are not alone! Hang in there!

    Whenever I am on the meds, I have no appetite, but once I am off the meds, my appetite returns. Also, once I’m off the meds, those crazy-during-the-night-terrible-calf-cramps go away too… so don’t worry!!! You won’t have to deal with them forever!!!

    To make yourself more comfortable… I would suggest drinking a glass of coconut water every day (I drink the VitaCoco brand). I also take lots and lots of supplements everyday… I would recommend GABA for the anxiety/depression. I would recommend VITAMIN D, fish oil, and turmeric (great anti-inflammatories) for your whole system. I would also suggest a good probiotic (such as “Primal Defense” by Garden of Life). Also, I would recommend CLA. My Doc just showed me a new study about CLA and Crohn’s/UC. I’ve been on it for about a month, and I am doing so so so so so so so so much better. Here’s a link to the article: http://www.sciencenewsline.com/articles/2012031917050047.html
    Here’s a link to the CLA I bought: http://www.swansonvitamins.com/MRC018/ItemDetail
    (I buy all my supplements on swansonvitamins.com… it’s way cheaper than buying in the store!!!)

    Lots of Hugs,
    Polly

  2. Steve August 23, 2012 at 11:48 am #

    Hi UCinNYC…I’d usually have lots to add but Polly shared some great information. Sadly my mind goes and goes so I hope you don’t mind me adding a few things.

    You mentioned the BRAT diet. This is the first I have heard of such a thing so I had to look it up but who put you on it? Yourself or your doctor? You said he informed you to try more solid foods to help with the mucus dumping so that is why I ask. Because in truth, the low fiber diet you are eating could be causing the mucus dumping. High fiber foods are difficult to digest, but if the idea is to slow mucus dumping…more fiber could be a good thing…or at least the nutrients from high fiber foods may be what you need. If you have a juicer and want to get those nutrients, I can give you info. Just ask. It may help calm things down. Bananas are great though as is homemade applesauce…hopefully you are drinking water? Other drinks can cause the same mucus dumping and cause inflammation…the very thing you want to avoid.

    Also, have you been tested for low potassium levels? The sense of dread and cramps in the middle of the night are a clear sign of this. Sure, it might just be stress but low levels of potassium can make you feel anxious and truly out of your mind as well…you said repeatedly your case is mild yet your feelings reflect as if it is way more serious. I’m not making fun or anything…I’ve had low potassium levels before. I felt as if the world was coming to an end, I didn’t want to eat, my food tasted funny if I tried to force feed myself, etc. I was very irrational with my fears and had a heck of a time sleeping even though I was so tired. Come to think of it, I was using the bathroom a lot even though I was barely eating…possibly mucus dumping? If nothing else, run it by your doctor if it continues and get a blood work up to know where you stand. It could be as simple as getting the right nutrients in your body. If your levels are good, find ways to lower stress around you. Stress plays a huge role in UC as I think you have already discovered(I’ll be checking out that magazine so thank you for that!)

    As far as eating out, your friends, and activities you love to do…you will be able to. You just gotta find a treatment that works for you. I don’t know if you have tried any diets(it sounds as if you are starting SCD—me too) but they can do wonders—I’ve had success with the raw diet as well. They are similar in that they allow healing without use of medications with like principles but the science behind each is very different. Polly mentioned probiotics and supplements…there are more she didn’t mention but take it one step at a time. Magnets, some find smoking to help(though I’d never recommend anyone try that for treatment—just showing you there are weird options no one would ever think of), Chinese medicine, nutrition, etc. There are all kinds of methods to approach UC so you can continue to live as you wish. It all depends on what you want to do and what you find works.

    Anyway, I said plenty yet again when all I wanted to do was make a few points. I hope no one minds. O:) As I sit here, I hope you talk with your doctor as soon as you can and get some blood work set up to check your potassium levels at least…a full work up wouldn’t hurt though. It sounds like you are going through exactly what I did…cramps, inability to sleep, loss of appetite even though you should be hungry(not just because you are eating so little but because you are on Prednisone which notoriously makes people hungry), fear/anxiety, etc. It really sounds exactly like it. Hope you keep us updated and thank you for sharing your story. Steve

  3. Bev August 23, 2012 at 1:50 pm #

    Hi UCinNYC,

    I don’t have mucous ‘dumping’ (nicely put, by the way!), but I can tell you that your life is most surely NOT over. Not by a long shot. I promise you that.

    We all have to find out what is going to work for us as far as getting the UC into remission. Unfortunately, there is no clear cut answer, because this damn disease seems to be so very individual. I used to be so hard on the doctors, but now I just think that they don’t know what the heck to treat us with either! They try all of the usual suspects (drugs) that they have for UC. It’s like homework for you now, trying to find that thing, or things, that will do the trick for YOU. Naturally, if you can.

    I am in remission at present, and have been for over six months now! I’m thrilled beyond belief. I took a really good probiotic for about two months, and started feeling so good, I went off of the asacol I had been taking for 13 years!! I will take probiotics forever now. They ‘cured’ me…but that does not seem to be the case for everyone. You have to try stuff and see what works for you.

    Cheers, and welcome home…this a great site!!

    Bev:)

  4. Bev August 23, 2012 at 1:51 pm #

    Oh, and what Steve said about the pred…I took it once, and I was so anxious, I felt like I was having panic attacks!

    Cheers:)

  5. Active UC'er August 23, 2012 at 4:37 pm #

    Hi – don’t think that your disease is “minor.” You may not have the physical extent of disease that others have, but your disease is affecting your life!! So don’t feel like you need to apologize. I’m also intrigued that there’s one spot on the right side of your colon? Do you have ulcerative colitis or some other form of colitis? Generally UC is characterized by continuous inflammation from the rectum to wherever it stops.

  6. UCinNYC
    UCinNYC August 23, 2012 at 4:42 pm #

    Hi everyone! Thanks so much for the responses! I actually wrote my story about a month ago, so I have an update. Unfortunately, I haven’t gotten much better because I think my first doctor under-treated me, but I’ve gone to get a second opinion, and the new doctor wants to re-scope me. So I’m having another colonoscopy and endoscopy this Saturday, yay!

    Re. the appetite, I got an SCD cookbook and my husband has been cooking for me out of that. I’ve mainly been living on yogurt, chicken, lentils, rice and potato for the last few weeks, but the food tastes good to me, so it’s been ok.

    Polly, thanks for all the great input! I, too, am a fan of coconut water! I always have some in my fridge and I drink it daily. I’m also on the probiotic VSL#3, and I’ve been taking D, calcium and iron supplements for some time.

    Steve: Yes, my doctor put me on the BRAT diet. She was adamant that I eat a low-residue diet, yet she also wanted me to eat more in order to absorb the mucus. I ended up deciding she didn’t know what she was doing, which is why I’m seeking a second opinion now. :)

    BTW, Steve, you were so right about the potassium levels. I recently realized that the calf cramps were probably from a potassium deficiency, and I also read that Pred can deplete your levels, so I started eating bananas a few days ago and doing that has calmed my calves down quite a bit. Thanks for the advice! You mentioned Chinese medicine. I’m a huge fan of acupuncture, as it’s the only thing that was able to get my allergies under control. I’m going to see if my acupuncturist can help me with UC.

    Bev, you’re so right about the Pred and panic attacks. When I was at the 40mg, I had the worst depression! It was a relief to come off that highest dose. It’s so great to hear that probiotics put you into remission! I’ve been a fan of probiotics for a long time (I sometimes brew my own kombucha) but I guess it wasn’t enough to keep me from flaring up. :)

    Anyway, thanks again for the encouragement! I truly appreciate it. I’ll keep you guys posted when my new doc gets back to me with my test results.

  7. UCinNYC
    UCinNYC August 23, 2012 at 5:17 pm #

    Oh, I forgot to mention, Steve, the BRAT diet is what I used to do when I got the runs before I got diagnosed. It was a pretty reliable way to reset my system so I could start eating normal food. Sushi rice was my best friend. :) Not sure if that’ll be true going forward, though.

    • Steve August 23, 2012 at 6:02 pm #

      Well, while high fiber is hard for someone with a weakened gut to digest, little to no fiber is bad too. It can send your body in a state of shock of sorts because many foods that have natural fiber—fruits are vegetables—are avoided and should not be because they have essential nutrients our bodies need. The proof is in people who eat junk food versus people who eat healthy. Healthy eaters eat less because their bodies get the nutrients they need. Junk food eaters can eat far more calories because their bodies are continually searching for those healthy nutrients. Sorry for my mini rant but it amazes me that doctors are so blind when it comes to food and UC. I was given soda and coffee in the hospital but I can’t have an apple without the skin? Bull honkers. The nutrients in fruits and vegetables are essential to us functioning…without them, like your low potassium levels, our bodies cease to function properly. Think of them like the nails to a house. Without the nails, will the house stay standing? With all my studying of UC and I’ve done plenty…the biggest thing I have learned is our bodies just want to get rid of toxic crap we are putting inside of us—sometimes years prior with medicines, food, toxins in the air, etc. Once we end that cycle, our bodies can remove the toxins and we stop experiencing symptoms. It sounds simple and too good to be true, but it is true with almost every story here. Anyway…

      Glad to hear you are getting a second opinion too. I respect doctors but if only we could refuse to pay doctors for piss poor service. What if they worked for tips????? Keep us updated and feel free to ask me any questions. Steve

      • Steve August 23, 2012 at 6:07 pm #

        That should read “fruits and vegetables”. Not “fruits are vegetables”. haha. Fun fact? Some things we call vegetables—like cucumbers, green sweet peppers—are actually botanically really fruits.

        • Bev August 24, 2012 at 2:03 pm #

          Now THAT’S funny!! LOL!

          Fruits can be vegetables, but I digress….lol

  8. UCinNYC
    UCinNYC August 23, 2012 at 5:38 pm #

    Active UC’er: Your comments mirror what other people elsewhere online told me, so I went to get a second opinion last week. :) The new doctor, whom I researched thoroughly this time, told me he couldn’t make heads or tails of my old doctor’s notes, and he said they didn’t jibe with the test results, so he wanted to take his own look inside.

  9. Deanna August 23, 2012 at 7:15 pm #

    I’m so sorry you are going through this. My 5 year old just diagnosed with very severe UC so II don’t have many suggestions since I’m new to this as well. For a laugh, though, I do think you should go back to the dr that told you to treat the mucus like a period and tell him it isn’t working. It’s hard to get the tampons in and very challenging when you have to poop. Lol

    Hope you feel better soon

    • UCinNYC
      UCinNYC August 26, 2012 at 1:13 pm #

      Deanna, I’m so sorry to hear that your child is going through this! I would love to go back to my old doctor and tell her that, LOL!

  10. KNYC August 23, 2012 at 7:48 pm #

    I am also in NYC and recently diaganosed. I am 35 and have a 4 year old and a six month old. Every month since June I have what I describe as episodes sudden onset of nausea 2 out of the 3 times accompanied by a severe splitting head ache. I felt so horrible I was unable to take care of my kids. Luckily my husband was home each time but I am scared about being home alone leading me to hire a nanny (interviewing this week). The doctor’s don’t know why I have such episodes ( my abdominal pain is high up). I may need a endoscopy. I was told about NY Presbyetrrian/Cornell Weill’s IBD center (70 and York) and that is where I turned. I had my first visit last week so I am unsure of the outcome as of yet. Perhaps you will want to go there for another opinion? Supposedly they are the experts in NYC.

    Like you I am depressed and scared. I have so much I want to do and two little ones no need me and I am afraid I won’t be the mother I should be due to this disease. I wish you luck. You are not alone in your feeling and concerns.

    • UCinNYC
      UCinNYC August 26, 2012 at 12:40 pm #

      KNYC, I’m so sorry you are going through this. Have you looked into whether you might be having a migraine? I know that people who get migraines often have nausea along with it.

      I actually tried to get in to see someone at Cornell Weill first, but Dr. Jacob is starting maternity leave and they told me the other guy there wasn’t seeing new patients until October, so I went with a guy from Mt. Sinai, who is turning out to be great. He’s actually on this site in the doctor directory; it’s Dr. Kenneth Miller.

      • Krystyna August 28, 2012 at 9:40 pm #

        UCinNYC,
        Congrats on the fab news. Glad you found a good doctor. Yes, the other doc u referred to is booked up
        But I managed to schedule an appointment sooner via a connection.

        I hope you go out there and enjoy your life to the fullest now that u have
        such great news! Oh and thanks for the migraine suggestion. I never had them but I will definitely look into this.

        Best,
        K

  11. Braj
    Brajabasi August 24, 2012 at 2:14 am #

    Hi Guys,
    I’m about to complete 1 Year with UC. Do not read much..just try one by one. This one helped me lot..
    http://www.ehow.com/way_5201536_remedies-ulcerative-colitis.html
    http://voices.yahoo.com/my-homemade-colitis-remedies-flare-ups-813213.html?cat=68

    Try to do meditation as much as possible. A 30 minute good meditation will equivalent to 3 Hour sleep which is important in UC. My Ayurveda doctor given one medicine which i use to take with buttermilk whihc is benificial. Wait and watch you will be happy best wishes..

    • Bev August 24, 2012 at 2:05 pm #

      Love this!!

    • UCinNYC
      UCinNYC August 26, 2012 at 1:11 pm #

      Thanks, Brajabasi! I’ve been wanting to get back to my meditation practice, but it’s hard to want to sit when I’m so aware of my rear end, LOL! But I have been doing a lot of my gratefulness practice, and that has helped a lot.

      For those who don’t know, you can practice gratefulness simply by thinking of five things you’re grateful for today. No matter how bad your day is, you should always be able to think of five things to be grateful for. Doing this can really put your problems in perspective. This has been a huge help to me while I’ve been sick this summer.

      Another thing that has helped me is simply taking things day by day and even minute by minute. I have a tendency to catastrophize, and I think coping with this illness this has forced me to improve my ability to be mindful of each moment.

  12. UCinNYC
    UCinNYC August 26, 2012 at 1:01 pm #

    Guys, this is kind of embarrassing, but I went for my e-scope and c-scope with the new doctor yesterday, and he says I don’t have UC. He says the mucus dumping is actually weeping hemorrhoids, and he gave me two weeks of suppositories for that. My other big issue is acid reflux, so I’m meds for that now. He also cut out and biopsied a bunch of polyps.

    I was pretty out of it after the procedure, so I’m going to ask him for clarification the next time I see him, but he said he didn’t find any inflammation or ulcers at all in the colon. He said I have neither UC nor Crohn’s. I do want to ask him if he biopsied any other tissue to confirm that.

    So for now, I’m left with the conclusion that my original GI doc was a complete quack. I can’t believe I could have saved myself six weeks of angst if I’d just gone to a better doctor in the first place. I won’t feel completely relieved until all my new meds start working and I follow up with my doctor, but for now it looks like I will be ok.

    • Bev August 28, 2012 at 2:15 pm #

      Don’t be embarassed!! This is great news!! No UC?? Fabulous!!

      I am so so so pleased and happy for you. I cannot believe a doctor would make such a huge mistake…wait a minute…yes, I can!

      Cheers, and happiness always,
      Bev:):):)

      • UCinNYC
        UCinNYC August 28, 2012 at 8:04 pm #

        Thanks so much, Bev! Yeah, I had no idea hemmies could weep, or that mine were so bad, LOL!

        I wish you all the best and health and happiness as well!

        Take care of yourself,

        UCinNYC

  13. Bev August 28, 2012 at 2:16 pm #

    Oh, BTW…weeping hemmies? What have they got to cry about, right? How about the people who have to put up with them…lol!! I wasn’t even aware that there were such things.

    All the best again,
    Bev:)

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