Ruined by a COLD

Nicole Adelman

Here I am everyone - I'm Nicole

Introduction

Nicole from Chicago, now living in LA…Actor, Filmmaker and Radio Co-Host. Have been living with UC for almost 10 years. Wants to CURE it for good, ideally – without surgery.

Ruined By A Cold

I was diagnosed with UC back in 2002 or ’03 and though, for the most part, I’ve had a flare maybe once every two years. I used the drugs, they worked and I would l move on with my life, without too much worry. When I’m well, I can eat very healthfully, but whatever I want, and when I wasn’t, I did a low residue diet and it eventually passed. Then the drugs stopped working.

I’m on my 3rd flare of 2011. Ouch. I am, happily and gratefully, med free and I totally believe this can be CURED naturally, but I’m struggling mentally, emotionally, PHYSICALLY to get there for good. The last time I kicked this was back in April, when I started seeing an acupuncturist, taking herbs, seeing a natropath, taking vitamins and I started and completed the Elimination Diet.

I responded very well to the Elimination Diet and within weeks felt SO much better. I went back to eating my normal yet very healthy diet. All was well until I got a cold on December 11th, took cold medicine (Vitamin C, Sudafed, Day-Quil and Theraflu) and once the cold passed, I knew my stomach was FUCKED. And now here I am, scouring the blogs again and trying to find solace and permanence from this nightmare. With that, I won’t lie…I’m afraid to start the SCD diet…Mostly because rice (as a base of the Elimination Diet) felt like it saved my life…And thank god for the potato! I sure do love the potato.

Anyway, as par for course with the disease,

I feel out of control and I truly don’t know what to do next.

I want to heal this FOR GOOD.

Currently, I’m on a low residue rice based diet, a probiotic in the morning, my herbs (two kinds) throughout the day and B-12 sublingual lozenges…I usually take these at night, but currently, the gas pains at night are off the charts and I haven’t slept in two days. Not my best Christmas time for sure. Ha!

Medications:

Been on Asacol, Colazal, Prednisone, Rowasa enemas and Canasa supposities. No meds worked. Weened off of everything and am now, happily, med free. I’m on herbs and I do acupuncture and will soon be seeing an Naturopath, once again.

written by Nicole

submitted in the Colitis Venting Area

 




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15 Responses to Ruined by a COLD

  1. Milka January 1, 2012 at 11:01 am #

    Hi Nicole!
    Sorry you are going thru this… I am just ending a cold myself and am feeling bloated and have pains in the evening as well. We should not be ringing in the new year like this. Unfortunately we have no control of this. I am on remicade and asacol. I haven’t had a flare since my 1st one in 2009. So remicade is really keeping my UC under control. I too begin to lose it mentally when I get any sort of symptoms. I do hope you can get out of the flare quickly and hope the new year keeps you healthy!

  2. LA Nicole
    Nicole January 1, 2012 at 2:17 pm #

    Thank you Milka for your kind words, and thank you Adam for posting my vent.

    An update on my status:

    I’ve stopped all rice, grains, bread and potato products since diligently reading this site. Am awaiting my BTVC book and crock pot and am EXCITED to start this diet. I have had SOME relief the past two days. I saw my Naturopath and am on a shit ton of supplements to help my gall bladder out…Supposedly, the cold and cold medicine made my gall bladder sick, it stopped producing bile to help me digest food, and with that, the flare went into effect. Awesome!

    So, I’m on the supplements, on the herbs, and started eating only banana, hard boiled egg, organic chicken broth, broiled chicken with nothing on it except salt, pepper and a little olive oil, and super mushy carrots.

    I am still VERY sick, but my energy has been a little bit better the last two days and the brain fog has lifted a little bit. Praise be. My New Years Eve was SUPER mellow. Just my boyfriend and I hanging out with our neighbors at our fire pit. I ate my chicken soup with my supplements and drank chamomile tea. I’ve already gone 6 times today and it’s still SOOOO painful and unpleasant, but I feel a little bit more relief (again, energetically) when I’m not in the bathroom than I have the past three weeks. I’m hopeful.

    I can’t wait for the book and to get the diet going for good. I chose to eat the soup and such above based on what Jordan and Steve wrote about what the Intro Diet basically looks like, and also what I know Adam has used to get out of flares, without meds. I am definitely committed to staying med free, but I hope the diet really, really, really and truly (ha!) works for me. I’m going to follow it to a “T”.

    Thank you again for any and all responses. I’m desperately hoping to be in the best health of my life in 2012. I wish that for us all.

    All my best,

    Nicole

    • garry January 1, 2012 at 6:06 pm #

      nicole,
      sorry to hear about the recent flare. since stopping the meds in aug 09, i have had good success controlling flares by eliminating sugars and starchy carbs, as well as irritants like caffeine and alcohol. also, i see an applied kinesiologist and take a protocol of supplements that she recommends. (the components change from visit to visit, but liquid B-12 is almost always included; it sounds similar to what your get from your nd.) i find that lots of rest and extra sleep also are essential to controlling a flare.
      more recently, a scope taken during a flare showed involvement of active chronic uc in my entire colon. my UC used to be localized in the descending colon and rectum. to appease my father (a retired surgeon), i reluctantly went back on asacol. this was over two years since i gave up on meds altogether.
      i don’t know whether it was the asacol or getting hard core on a low carb diet, but two weeks later i was feeling much better. the cramping, bloating, painful gut passed. chronic diarrhea ended. and blood free normal stools returned.
      i know that what works for one doesn’t necessarily work for others, with this confounding disease. i think of my GI tract as a chemistry lab and my challenge is to figure out the right mix of foods to keep my gut happy and eliminate dis-ease.
      folks with UC have a much lower threshold than the general population when it comes to grains, sugars and the other impurities in our food, as well as the effects of harmful stress. so, finding the right balance of the right foods that work is key. but since i am doing well right now with asacol in the mix, i am going to stay with it for now. you might want to consider it as well.
      all the best for the new year
      garry

  3. Jay January 1, 2012 at 8:50 pm #

    I feel your pain with having a cold or illness lead to a flare…happens to me every time. But, as a general suggestion, why not try getting back on meds? I would love to be med-free and have a real cure one day as well, but if I didn’t take my meds I would probably die. I’ve had 3 flares this year while on meds and have had to get on prednisone to stop them each time. I also usually flare a few times a year. If you’re only flaring once every couple years without meds, doesn’t seem like your situation is too bad. I mean, some people are in the bathroom 40-50 times a day when they flare and that happens to them several times a year. In the grand scheme of UC, sounds like your case is more mild than a lot of them.

    When I’m feeling well, some things that work for me are aloe juice, Bio-K probiotic and a low-sugar, low-starchy carb diet like Garry suggests. I also agree with you that rice has helped me A LOT (as well as bananas). I tried the SCD diet once and it was a nightmare…was in the bathroom 20+ times a day for a week and had to stop.

    Good luck,
    Jay

  4. Sabina January 1, 2012 at 10:49 pm #

    Hi Nicole,
    I am using smoking paches for the last five days,bleeding and diarrhea gone after second day.I am sending you website, http://www.crohns.org.uk/Docs/4/UC/Smoking%20and%20Ulcerative%20Colitis.html
    You may consider this.Good luck.

  5. Trish January 2, 2012 at 1:25 am #

    Hi Nicole. Sorry to hear you’re in a flare – it’s very common after a cold, it can take a few weeks to get back on track. Good luck with the SCD, which I myself have found is the best way of staying healthy (I’ve had UC for about 30 years). However, if you find it too hard to stick to, you could try the FODMAP diet (just Google it). This permits rice, though it does cut out other things that the SCD permits, such as fruit. My sister is following this for her severe IBS and is finding it very helpful. Take care and feel better soon. :) Trish

  6. Bev January 2, 2012 at 9:47 am #

    Wow. All of these stories. You know, if we UC people all have ulcers in our colons…why the hell can’t a cure be found? How difficult can this be? When somebody has a peptic or other typoe of stomach ulcer, the end result isn’t REMOVAL of the stomach…sheesh

    I have had UC for 13 years. In 1998, I took the awful drug ACCUTANE, for acne, in my mid and late 20s,(I am CONVINCED that is how my UC came to be). I was first diagnosed with proctitis in 1999 and was told it probably would not go any further. A suppository a day, and 6 asacol per day, and it was in remission!! Of course, after my second flare a few years later, and second colonoscopy, it had progressed to 54 cm of full blown UC. Pentasa enemas, steroid enemas, and 8 asacol per day, and once again, in remission!! This past year (2011) after a particularly nasty flare, and after my third colonoscopy, I now have pancolitis, and we all know what that means…my whole colon is involved. Well, 12 asacol per day, enemas every day, and it will not go into remission this time. I’ve been working at it for five months now. The constant pain is awful. My quality of life sucks. It’s hard to have a good time, or smile, or enjoy a meal, or enjoy life. The GI is recommending oral steroids, imuran, and remicade. I have an AVERSION, let’s just say, to DEATH DRUGS. I mean, look what the ACCUTANE did to me…The GI , as well as my GP, think me a ‘difficult’ patient, who won’t do as she’s told! Well. Screw them. I just know, that if I take any of those TERRIBLE drugs that they are ‘recommending’, that there could be worse health issues for me, down the long and lonely road, like liver damage, and cancer!! Are they crazy?? I know they are just doctors, who have a ‘job’ to do, but I cannot, in my heart and soul, agree to take these drugs. I just can’t. Anyone else feel this way???

    I now feel that I am at that ‘crossroads’, which I’m sure all of us UCers go through. The BIG DECISION may be upon me…but it’s awfully drastic…no? I mean, COLON REMOVAL?? It sounds almost too harsh to be tue, doesn’t it? Why does it have to come to this? Why is this the ONLY CURE FOR ULCERATIVE COLITIS? Like I asked before, why don’t stomach ulcer sufferers have to have their stomachs removed? BECA– USE IT’S F***ING LUDICROUS, THAT’S WHY!!! I cannot believe that these are my choices…DEATH DRUGS(that may not even work, by the way)…OR COLON REMOVAL. Boy, what a choice!! What would these specialists choose for themselves, if they had these choices? Would they out their own childen or other family members on these drugs? I wonder. Why can’t stem cells be injected into our colons? So that they could regenerate into healthy colons once again? How difficult would that be to do?? All natural, with no deathly side effects.

    Sorry, everyone…I digress. Nicole…I want so badly for getting off all meds to work for you, and for me, and for all of us who suffer with this every f***ing day of our lives. Nobody wants that more than me. I really am against drugs, as therapy, or a cure. I wish you all of the luck in the world. ALL THE LUCK IN THE WORLD!!! I sometimes fantasize about just dropping all my meds…just to see what will happen, but I always get terrified. Man, UC sucks. It’s all about quality of life, isn’t it? I don’t know what to do…

    Good health to all…because that’s all we really have…

    Bev

  7. ordinaryWorldWhereRu January 2, 2012 at 3:21 pm #

    Hi Nicole,

    sorry to hear that you are suffering at this time of year.I hope you you get well soon.

    I was diagnosed with U/C in November 2008 with severe U/C all the way to the small intestine.I did not see my gastro until Jan 09 and was put on Asacol, Steroids and Adcal D3.In April that year i saw a new gastro who added Azathioprine 200mg and Allopurinol 100mg to my meds. I had my gastro`s mobile phone number and email address which i needed in August that year as i had a bad turn and was admitted to hospital for a week and he added more meds Cyclosporin and Pentasa.

    My meds changed to suit how the blood test results changed and now i am only taking Thioguanine of which i am only one of twenty in his care. I was told that if i had seen another gastro he would have removed my colon, but since i have been on this Thioguanine my life has changed so much that i am nearly back to normal but for the lack of strength which i am working on.This drug does not suit everyone who has U/C.

    I have tried to keep this short as i go off on tangents when i speak to other sufferers via forums so i sorry if i have as those close to me don`t understand this disease.

    steve

  8. George in Napa January 3, 2012 at 1:38 am #

    I am currently taking mesalamine and prednisone to try and get me into remission. I don’t like taking drugs and want to get off of both…. especially the prednisone. I am currently down to 5 mg per day of the pred.
    I am on the SCD diet. I started out by following it 100% for the first 3 months. I am now doing the diet about 90%….. I have added a few thing that don’t seem to bother me (trial and error). I feel that SCD has helped me some, as my flare ups are now less severe.
    I plan on being off the damn prednisone in a week. I hope that my flares don’t start kicking up again when I’m off the pred.
    The last time that happened, my doc wanted me to start taking 6MP. I told him no, I wanted to try some alternative stuff.
    I take a bunch of different herbs every day as well as following 90% of the SCD.

    I agree with y’all…….. these drugs are poison. I hate them. I take them only when nothing else seems to help.
    My goal is to get off them permanently.

    George in Napa

  9. Erica January 3, 2012 at 1:39 pm #

    I hear ALL of you loud and clear! This dis-ease SUCKS! Its so damn frustrating that a cure can not be found. My story goes like this:: I have had UC almost a year and half (diagnosed in Cali) I have NEVER taken the drugs, EVER! I got into my car that gloomy,sad,scared out of my mind day and ripped the prescription up in my car went home to find a better way. I have to be honest, when I am symptom free life is WONDERFUL but as soon as i see symptoms again, I freak out and find another path. I think I’d rather die than to use toxic crap. I won’t say never but as long as I have a breath in me I will fight it. Doing really great. Have pulled myself out of a few flares and really listening to my body and what it wants has worked wonders for me. I can’t pinpoint foods either that make me flare either so that can be a frustrating,too. Hang in there everyone! We are in this together

    • George in Napa January 4, 2012 at 7:44 pm #

      Hi Erica – Like you I am a person who had NEVER taken drugs (the one exception was about 15 years ago when I got diverticulitis and was on meds for a week). My friends used to kiddingly call me “Mr. No Pill” because I was the only one they knew who was not taking some sort of prescription drug. When I was diagnosed with UC my doc handed me a prescription for mesalamine and told me that my 65 years of being drug free were over and I needed to take 4 of these pills EVERY DAY!
      I threw a fit and handed him the prescription back and told him that I would find another way. I made some diet changes and tried some herbs, which worked at first, but 3 months later my UC got so bad that I almost wound up in the hospital. I was in such bad shape that I then needed prednisone as well as mesalamine. Since then I have learned a lot more about diet and herbs. I am working hard to ditch these lousy drugs and if all goes well I hope to stop using them altogether in 4 weeks. Damn I hate these friggin drugs.

  10. Erica January 3, 2012 at 1:50 pm #

    Did the scd for 8 months than it stopped working for me. I was sad/happy cause it was too stressful for my type personality to keep food prepared etc. It wasn’t easy to travel on scd…at least for me. Others have NO problem. Currently, I’m on the David Klein protocol which is fruits and veg..juicing and green smoothies. I lost a ton of weight which is normal part to detox body to prepare it for healing. I have been on a fruit and veg juice detox for 20 days now. Just wanted to throw that out there for anyone interested.

    • Rebeka
      Rebeka January 5, 2012 at 11:46 am #

      This reminds me: Have you guys seen the documentary Fat, Sick & Nearly Dead? It’s still on Netflix. It’s about this guy who had tremenduous success in healing himself (and others) with juicing. It’s really inspiring and just shows how there is true healing that could never be achieved with medication.

  11. LA Nicole
    Nicole January 7, 2012 at 4:33 pm #

    Hi, Guys.

    Thank you, all, for responding to my post.

    I’m writing now to give you an update on my status and to respond to some of what has been written:

    Currently, I’m on Day 2 of the SCD Intro Diet. I am still VERY sick with pooping up to 15 times a day…painful, cramping, mucous-y diarrhea, etc. HOWEVER, even before the book arrived, I looked into what the Intro Diet entailed, and I started to make the adjustments. So, over the course of the past week, I’ve been totally wheat and grain free.

    My New Years was a good one. My energy has improved over the course of the week and even though I still get VERY tired, I think the diet and the supplements I’ve been on have been working for me. Incremental steps towards health! Praise be!! My GUTS tell me this diet is going to work for me. I’m excited. But the progress is slow and the diarrhea is still so painful and I can’t wait for that all to recede. I have been keeping track of how many times I’ve been going and it is DEFINITELY decreasing. I’ve only gone 5 times so far today, and last night I was able to sleep through the entire night! Only getting up once, to only pee!!

    I just learned that the supplements I’ve been on, many of them have starch, sugar and/or whey in them, which is a No-No for the SCD diet. I still get a little overwhelmed about how much of a life change this all is…How debilitating this disease has been for us all, and how it sucks that it’s so hard to heal. Months of my life. What a setback, when I was so stoked to end 2011 and begin 2012 with a bang. Instead, I’ve been trying to rest as much as humanly possible. I take a lot of hot baths, especially at night, with Ginger Bath Salts. Hoo-Wee! That helps tremendously.

    Garry – I am committing to remain med free (in part because I don’t have anyone such as my Dad begging me to go back on the drugs…He clearly loves you! If my Dad was a surgeon and begging me, I’d probably go back on them to appease him, too. :>), but because I know, for me, that the Asacol worked for a while, but eventually stopped working. The side effects of the drug can be diarrhea, and since I already have that, I don’t want to cover it up with something else and not know what beast I’m trying to defeat. My last flare was from weaning off of Asacol. I found that the flare-up is much more profound when the beast has been sleeping. I hope the Asacol continues to work for you, for sure. Please keep me posted on how you are doing.

    Jay – As I just wrote to Garry, for me I’d rather be med-free. Again, they only cover up and mask the symptoms, and then it’s harder to really see what you’re dealing with. Even though my UC may be “milder” than most, I still wouldn’t wish it on my worst enemy. Thankfully, I’m seeing the diet working for me already and I can only hope it will continue to do so. I wish, in many ways, we weren’t all so individualized so that one treatment could work for all. I hope you’re feeling better these days, too.

    Sabina – I am TOTALLY interested in learning more about Nicotine options. However, my Naturopath said there were a lot of metals in the patch that can be harmful, and mentioned a Nicotine B vitamin…Has anyone else heard of such a thing? If so, please share!

    Trish – Thank you for pointing me in the direction of the FODMAP diet. I am certainly interested in checking that one out as well, especially if it turns out that I don’t respond well to the SCD diet.

    Bev – I TOTALLY and COMPLETELY hear you!!!! I find this whole process so f’ing frustrating! What about even a colon transplant, instead of total and complete removal! My Lord…There is no easy path with this disease. There is truly a potential gnarly side effect to everything. And it’s all about Quality Of Life! Have you tried the SCD diet? What has been your experience with drastic diet change? I’m already feeling better, even with diarrhea, than I have in a month…It’s worth a shot! And I feel ya, girl! I already told my GI that I will NEVER do Remicade! Honestly, I am WAY happier being drug free (and in a flare-up!) knowing that I am extremely willing to do many things including diet (Again, I’m totally med free and I’m already seeing results on the diet, and it’s only been a week), potential stem cell research, fecal transplants, etc. But if I’m still having HORRIBLE flare-ups that take months to heal and negotiate my life with, than I’m going to opt for the surgery as a choice. Not drugs with their known abysmal side effects, but surgery. So that I can just HEAL. I’m doing the SCD diet because I absolutely believe I will heal fully from the inside out, without surgery, but that’s my current plan. Take it for what you will, but I say this now knowing quality of life is EVERYTHING! Much love and peace to you, Bev on your journey. Although we are all alone with this disease, you can always write to me and know I will write back. I’m dealing with it, too…As we all are. Thank GOD for Adam and this site! :>

    Again, thank you, all of you, for sharing your experiences. I am so grateful for finding this website. May we all continue to heal, and may science progress, and may this SCD diet work for me!

    I’ll keep you posted on my progress.

    Much love and HEALTH to you all.

    XO,

    Nicole

  12. Steve October 3, 2015 at 11:57 am #

    Hi Nicole.

    I was diagnosed with uc in 2008 after losing 2.5 stone 35 lbs in one month.
    have been in hospital many times until being put on Thioguanine in 2012/2013.
    I have been on various medication which i will list at the end of this post.
    feeling ok at the moment and was told by consultant that after 5 years on thioguanine he will take me off meds and see if my body has managed to cope with out anymore meds in 2017-2018
    Meds to date. asocol, azathioprine and allopurinol, cyclosporine,prednesolone and thioguanine.
    thanks
    Steve

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