Worst Ulcerative Colitis Flare Up

Current flare up is unbearable, any advice would be appreciated.

My Story:

I was diagnosed with Ulcerative Colitis in October of 2009. My symptoms went from very mild (simple nausea spells that lasted a few seconds) to constant nausea, dehydration, diarrhea filled with blood in a matter of a week and a half. By the time that I got to the hospital, they thought they would need to remove my colon right there and then. They weren’t even sure if it was infectious or Ulcerative colitis at that point, so they pumped me full of antibiotics and steroids. I did get better and it took me until June of 2010 to get off the steroids and get into remission. My remission lasted a very short time until I had another bad flare in October of 2010. That one lasted until March of 2011. Luckily though, with all these flares, when treated with Prednisone I was able to keep them somewhat under control and live a semi-normal life.

This June I got another flare. This one is worse than all of them combined. I got on the Prednisone, I tried Rowasa enemas to see if I can stop it early (I was on ASACOL for maintenance these past 2 years). However, this time around, nothing helped. The steroids weren’t doing anything and my symptoms just got worse and worse. I increased the dosage and started 6MP but had an awful reaction to it and had to stop. Since end of June, I have already gone to the emergency room for dehydration and just a few days ago got out of a week long stay at the hospital where they had me on IV steroids and IV food for complete bowel rest. That didn’t help at all. I tried the SCD diet for a month and saw absolutely no improvement. My current symptoms are constant diarrhea (although there isn’t much blood, just lots of nausea and cramping) and worst of all, almost non-stop nausea throughout the day. Anti-nausea medication hasn’t been helping. I can also constantly feel my c olon, every time I move or switch positions in bed. I feel everything inside swoosh around and I get nauseous. I have resorted to sleeping only on my right side and not moving at all. However, that only mildly helps. I still get constant nausea spells at night and can’t sleep at all. I have constant fatigue, I feel like my legs have almost stopped working. I’ve lost 35lb’s in the last month and a half. I’m only 5’3 and now weight a mere 103 pounds.

Due to the constant nausea, I have no desire to eat and I try to force myself. Food doesn’t taste like anything to me anymore and it’s almost like punishment to eat it. I’ve been pretty much eating the same things for the last 2 months. Steamed and baked chicken, chicken soup with only mashed carrots, rice, and apple sauce and even such easy to process foods have not given my colon the rest that it needs. The doctors want me on either Remicade or doing the surgery. I’m afraid to take Remicade because I have very bad reactions to drugs (6MP was a perfect example) and I’m really trying to avoid surgery. However, living like this since end of June has become unbearable. I’ve completely stopped talking to people, I can’t even so much as distract myself with watching TV. Half the time I just sit there staring into the distance trying to control my nausea and thinking about my colon, since I can constantly feel it extremely unsettled. At this point, I’m willing to try anything just to get better and get out of this awful flare.

After almost 2 months, I’ve lost my energy and ability to fight this. The constant symptoms that don’t go away don’t let me forget that I have UC even for a second. I try to go to work, but it takes everything out of me. I’ve been out half the time over these past 2 months. I’m just worried that because this flare is so severe and steroids are not doing anything, any alternative options don’t really even have a chance to work. I just wish I could find the strength to keep fighting this disease but after this long, I feel like I’m starting to give up. Any suggestions on how to deal with this or even options for improving this flare would be greatly appreciated. I’ll try anything at this point.

My Ulcerative Colitis Medications:

Prednisone
Colazal
Probiotics
Ton of vitamins
Ranitidine

Submitted by “Anna” in the Colitis Venting Area

 

Other Colitis Stories Mentioning Fatigue and Nausea:

Stopping the Anemia and Fatigue due to Ulcerative Colitis

Ulcerative Colitis and Fatigue

Nausea with Colitis

I Want to Know What’s Wrong with Me

The 5 Stages of Ulcerative Colitis




Ulcerative Colitis Tips


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nausea

34 Responses to Worst Ulcerative Colitis Flare Up

  1. kevin August 19, 2011 at 8:35 am #

    Im on 50mg. tablets of imuran take 1 every 12 hrs. asacol 400mg. tablets I take 3 every 12 hrs. it changed my life forever. ive been in remission for 9yrs. talk to your doctor about these meds. hope this helps you!

  2. William August 20, 2011 at 10:46 pm #

    I had a very similar experience with respect to a flare that came out of nowhere very soon after diagnosis but was able to get the major bleeding under control in a few months but it took about a year to get fully under control. I am now in remission as long as I stick with a strict diet.

    I stayed on a 4.8 g dosage of Lialda because I have severe allergies to many medications and did not want to try anything else.

    What I did do is play around a lot with my diet because you can develop allergies to food that you were not previously allergic to so you may need to rotate out your food.

    If you are not using fish oil, you might want to look into this. It definitely helps me.

    Some foods that worked for me: a banana and black raspberry smoothie (either with water or rice milk if you can tolerate it), salmon, cooked squash, brown rice (not white rice), squash (i.e. like butternut).

    Best of luck.

    • ann June 21, 2012 at 1:39 pm #

      Hey William,

      I have seen a few posts from you and feel like our diet and condition are close. I want to ask you some specific diet questions but not sure if you want to communicate through email? You mentioned brown rice but not white rice, can I ask why? Does white rice cause you bad symptoms? How do you cook brown rice and how much do you eat for each meal? I am also curious how you stomach feel when you have salmon since it’s so fatty for me even before I had CD.

  3. Dove August 21, 2011 at 6:17 am #

    I feel for you! And know what you’re going through! I’m also eating the same diet as you but even these simple foods make me cry not long after I eat it due to horrible cramps. I found that not adding onion to the chicken soup (even though it’s drained) has made a huge difference and I get less cramping, do you add onions to yours? Also, I drink ALOT of coconut water (not coconut milk). It is fat and sugar free, 100% completely natural and also naturally contains a whole stack of electrolytes which is so important when you’re in the middle of a flair. It is quite expensive but I think it’s worth it, it’s so gentle on the stomach…you might want to get blood tests done on a regular basis so your doctor can assess if you are low in something causing the tiredness and weakness ie iron, b12, potassium etc…and have you been checked for C-Diff? It’s a nasty bacterial superbug that UCrs seem to get really easily and don’t even realize they’ve got it (I’ve just been diagnosed with it and the drugs they have given me for it a few days ago are starting to bring the flair under control)…good luck with everything and I hope your flare settles down soon for you! Davina

  4. michael August 21, 2011 at 6:56 am #

    A month trial of the SCD is not a fair shot at the diet. The SCD is the best thing out there. I would give it at least a 3 month attempt. A quality fish or krill oil, a quality probiotic, homemade sauerkraut are also very helpful. Be patient with the diet and incorporate some sort of meditation or stress release program.

  5. Peter NZ August 25, 2011 at 1:25 pm #

    Talk to your doctors about taking Cyclosporin.

  6. Sara October 21, 2011 at 12:01 pm #

    Try smoking don’t kill me for saying it but if you do no more than 5 a day try it there is even a well known doctor in Chicago who is directing patients to do this.

    • Michael Kerry January 7, 2015 at 12:29 pm #

      Understandable as less common in smokers, but unwise because of the perils of
      smoking!

      I wonder whether electronic cigarettes would be an answer as free from tar?

      My daughter is having a colectomy tomorrow, all medical treatment having failed

      Upsetting, even for me as a doctor but, if you do not have a colon you cannot get ulcerative colitis or colon cancer either

      • Mirna December 28, 2016 at 5:12 pm #

        I know this post is five years old but I wonder if your daughter had done the colectomy and how is she doing now.

  7. tuxedobird October 21, 2011 at 8:58 pm #

    Reading your story brought back a lot of bad memories. I am so sorry tbis has hit you so hard and so quickly. For me surgery was the answer. You don’t say how old you are. Meds vary from person to person and there are more available than back in tbe day. I will say that Prednisone was effective for me for a long time but i am paying the price now with osteoporosis. You have a support syatem here so use it. We’re here is you have questtions or want to vent. All the best.

  8. nymom February 17, 2012 at 11:58 am #

    Hi Anna, I just saw your post today. I hope that you are doing better and have had some relief. Your story took me back to when I was diagnosed 6 1/2 yrs ago. I was on steroids for 6 1/2 months with no improvement. I was in more pain than when I gave birth (naturally) to two kids. I tried the SCD diet for 3 months, it made me sicker. After a year of eliminating just about everything from my diet, I found that dairy, any type milk, yogurt, ice cream, whey, non-fat milk powder, casein etc. were all triggers. I got better, got off the prednisone, and have been taking asacol daily since.
    As crazy as it sounds, exercise has helped me a lot. I recently had a flare (brought on by stress) and felt like I couldn’t leave the house. My stomach was turning, my other end had spasms, but when I did some gentle exercises it took my mind off my stomach and the unsettled feeling in my colon. If you decide to try it start with a gentle yoga. As well, breathing exercising by Dr. Andrew Weil have also helped to relax the tummy. I’ve started seeing a health and nutrition coach who introduced me to the Gut Brain connection. All our emotions, stress and feelings affect our “gut brain” that’s why people get “butterflies” in their stomach when nervous. It’s very interesting – try looking it up online.
    I know UC is mentally, physically and emotionally crippling sometimes, but there is support and a huge community of people that suffer with you – you are not alone.
    I sincerely hope you’ve had some improvement in the past 4 months.

    Best wishes,

  9. Wendy
    Wendy February 17, 2012 at 1:19 pm #

    I am at the tail end of a flare up that was exactly as you are describing it. I am still not recovered and I was hospitalized at the beginning of November. I am trying natural supplements like spirunella and astaxaxanthine (spelling is probably wrong). They work really really well. meds did nothing. I hope you are better soon. I totally understand how horrible it is.

  10. Scott February 28, 2012 at 7:59 am #

    I am 35 years old and was diagnosed with UC about 2 years ago. I hospitalized in May of 2011 after a horrible flare up where I was making 30+ trips to the restroom each day. I was admitted and treated for my UC symptoms as well as dehydration and anemia. I had lost 25 lbs. With IV fluids and steriods, iron supplement and a higher dose of Asacal I was able to recover in a few ays and was released from the hospital. I wasn’t 100% symptom free but my restroom trips had decreased to 4-5 daily and I was generally feeling better. I had begun to add some weight as well.

    I had to begin tapering off the steroids as this is a temporary solution due to a high risk of side effects with prolonged usage. The doctor put me on Remicade (regular infusions every 8 weeks) and 50mg of 6MP daily. I also began the SCD diet in July 2011. My symptoms were COMPLTELY gone. I was 100% back to normal. I gained back the 25 lbs. The color in skin returned and I looked and felt healthy again. I almost forgot I had UC except for the meds that I take each day (Apriso which has Mesalamine-same as Asacol), iron supplement and 6MP as well as the Remicade infusions every few weeks.

    Everything was excellent until January 2012. I slowly started to have another flare up. It was just before one of my Remicade treatments so I figured it would go away once I had the treatment. It did not. I went on 60 mg Prednisone(steroid) and it stopped it from getting worse. However, there was still blood and diarrhea and increased frequency- 6-7 times daily. After a few weeks with no immprovement I was admitted to the hospital again for 4 days and received IV steroids. This seemed to decrease the frequency but there was still blood present. The doctor felt I was improving and I was realeased.

    I have been on oral Prednisone 60mg (just tapered to 40mg daily), my Remicade treatments have been accelerated to every 6 weeks instead of 8 weeks. They have doubled the dosage of Remicade. I am still on 6MP, Apriso (mesalamine), iron supplements and the SCD diet. My symptoms have remained about the same 4-6 trips per day and still bloody. So I am still currently in this flare up.

    I have a very stressful job in a highly competitive sales position in the financial services industry. This recent flare up seemed to kinda coincide with an extremely stressful week. I am thinking I that I am doing everything that I probably should be doing with regard to diet and medication. I am also a very athletic person. I excercise and hour a day for 5-6 times a week.

    I suppose I am curious if anyone else has had a similar experience and if they have found any successful stress relief options.

    Thanks
    Scott

  11. Jess
    jessica April 1, 2012 at 12:20 pm #

    I just want to tell you that my heart breaks for you. This disease can be one of the meanest most consuming ones around. I too am in the middle of a horrible flare which began when I suffered a miscarriage recently. I am in so much pain. My stomach hurts from even the slightest touch. I have horrible gas pains that have me hurrled over in pain and are causing terrible back/body aches all over. All the while, I am experincing the diarreah, bloody stools, urgency and mucus. I am miserable and all i want to do is curl up in my bed with no food and my heating pad. Thankfully, i have two precious little boys who need their mommy so i have no choice but to get out and try my hardest to just be. Not one second am i not thinking of how much pain im in. I just started the Prednisone two days ago and am taking it in addition to lialda and canasa as well as vitamins, probiotics, honey and apple cider vinegar on the side. No relief yet, but i am praying and hopeful. Im thinking and praying for you too. Hang in there and dont give up. I know surgery is scary but maybe it’s exactly what you need?? Thinking about you.

    • Missclairol January 18, 2013 at 6:40 pm #

      Of all the comments I have read ,my symtons resemble yours exactly. I have had Uzc for 17 years since giving birth. But I am in the worst flareup I have ever had. Sounds just like yours. The gas pains are debilitating. Am on pred for the first time and it certainly is not working any miracles. I was wondering what you do for your gas pains?

      Thanks
      Kathy

  12. sherry May 19, 2012 at 10:55 am #

    I was diagnosed with UC Jan2012. I am 27; I was damn health until I was 25 never visited a doctor for a decade. I contracted herpes HSV1 genital in 2010(due to stupidity), I took a dosage of Acyclovir then only had one big break out initially in Jan2010 and minor sores once a year after that.
    I had diarrhea on May 2010, Dec 2010, May2011 and Dec2011. The doctors could not diagnose this as UC until Jan2012. I always wondered how many people who had UC had some kind of Herpes. Is it a trigger?? Most of my symptoms are similar to Anna. I told about herpes to my GI and he got a biopsy tested and said my UC has nothing to do with herpes. But I can’t believe the results. Is it important to get herpes under control to reduce my UC? I’m so freaking sick that I’m almost at the verge of quitting my job. God knows what is happening with my body. Can someone tell if UC has anything to do with herpes virus.

    • Stevie October 5, 2014 at 2:55 pm #

      I was diagnosed with UC at the same time that i seemed to have gotten type 1 herpes. (They think thats it). They say it isnt connected and the oy connection i could find was extreme stress.
      However I have found that the things that can eradicate herpes also help with UC
      (Olive Leaf Extract- dosage must be appropriate for fighting viral infection, [less, if just for health maintenance] and Bee Propolis/Raw Honey- a mix of pollen, propolis and honey).

  13. Andrea October 24, 2012 at 8:03 pm #

    Im 29 i have had UC since I was 18. I have been on “all” the medications that are approved for colitis. It has been bad in the past leaving me hospitalized but it was always able to be controlled by steriods. i am a single mom and since ive had my little boy a little over a year ago my UC hasn’t been bad at all.Then about 3 months ago i kept getting constant blood and a lot of mucus and that was it no stool. My dr tried Cansa, and put me on Predisione (which i am still currently taking 40 mg daily). Then this last week i cant even drink water without having to run to the bathroom…i think i have went over 50 X each day, every day this week. leaving everything sore.and it hard to move or hold my son So today the end of my rope, having to run to the bathroom with my one year old in the store. i called my dr to see if he had anymore ideas, he told me it sounds like my body is no longer responding to steroids and that he is going to do a flex sid on Tuesday…im just worried the only medication i haven’t been on is Humira. At this point im not even sure that will help…ive been on Remicaide in the past it worked for 9 months then just stopped. i know Humira is suppose to be stronger. i guess im just hesitant because it is so new to treat UC. If anyone can give me any ideas as to things that have worked for them when steroids no longer work that would be fantastic and greatly appreciated…

  14. Kat November 14, 2012 at 9:51 pm #

    Omg. I just read all your posts and Feel for you. I have had UC for 15 yeas. I have never had a complete remission but salafolk (spelling) suppositories made it liveable till recently. My gastrointestinal doc did a colonoscopy and showed me it is spreading. He put me on mezavant orally and it makes me feel horrible. It makes my UC worse. The worst cramping I have had since Labour and every joint in my body is in pain. Has anyone here or ever heard of that med making it worse. I am losing lots of blood and mucus. I see my dr. Next week and am thinking of asking for 7 days of prednisone. I feel worse now than ever and I am sure it is the message. Thanks for any help. I feel terrible for the posters that had to go on IV. Scary how bad it can get. They tried nitroglycerin. Suppositories on me too and I got Splitting migraines from it. Thanks for any help and sharing your stories. KAT

  15. jen December 10, 2012 at 6:33 pm #

    i have read your post and i to have UC when i was first diagnosed i had 78% of my colon that was all of the UC and when i had my second colonoscopy it went down to only being 15% all because of Asacol HD i had another flare up and was asked to get a colonoscopy i thought the disease went up and to my knowledge the doctor said my UC went down more to 12%. i was amazed how much my disease went down from when i first got it all because of being on asacol HD 800 mg this medicine is like a miracle in a bottle. i recently got very sick with the stomach flu and my ulcerative colitis and been having blood and constant nausea for a little over a month now im going to the doctor tomorrow probabally going to be put on another nedicine. i can tell you though i discoved doing pilates and it makes me feel great i push through it even when i get stomach pain and it helps my body relax i highly reccomend it

  16. Marie January 23, 2013 at 7:08 pm #

    I am so sorry, I can really feel the pain you are going through I been Diagnosed with UC in 2006. I have flare up, all the time, No one can tell me anything about UC, I feel like i am alone I have not had a soilid bowel mevement since 2006, and i am scared each time i have more BAd flare up with bleeding, I can’t get any help or information, I stay in bed and affraid to move.. or it causees more pain in my stomach, I have tried striods, IV’s and even tried Kemo theropy, it tore my colon up more,I don’t understand what is happening to me, I am Clean and sober Now for 20o years, I don’t smoke or do drugs, I feel so alone,the Docors can’t seem to help, and I feel like A lab rat doing all kinds of tests.. The Clinic I go to , The Doctors do not stay long enough to know you and the testing starts all over,.. in the mean time i suffer.. i do my best to find out all i can about Ulceractive colitis. and keep a record on each medication i take with dates and times.. I wish i knew whatg else i can do.. not knowing is the worst..

  17. Roger February 6, 2013 at 6:59 am #

    So sorry about your flare up, I have had UC for 40 years now. Prednisone never worked for me when I was originally diagnosed and I spent many weeks at a time in the hospital. You know the usual symptoms , the have all been described. I am 5’11’ and at one time was down to 115 #s. I would usually get better after a couple of months and would go into remission but of course it would come back. My doctor and I sat down and tried to figure out what the difference was between home treatment and hospital treatment. We came up with the way the steroid was being administered. I stared taking an injectable steroid at home during flare-ups. It is a real pain because you have to either get a pick line put in or have a nurse visit about every 3 days to change an IV site but they teach you to put the steroid solution in your self. For me this type of treatment made all the difference, don’t ask me why. We are all so different as you have read from all of the answers you have received. What works for one person is of absolutely no use to someone else. I think this is
    worth a try if you are in a serious flare up. I would also recommend being sure you are completely confident in your Dr. Just like treatment types, there are lots of different ones and you want one that is open to trying new things and willing to try anything that makes sense to help you out. I will tell you that in my case, the older I have gotten, the less severe my colitis has become. This has been true for me after about 10 years with the disease and has continued into my 50s. My Dr., the head of gastroenterology at a major hospital in Denver, Co. , thinks that it has something to do with our immune system getting weaker as we get older. Most of my flare ups can me contained with just a steroid enema these days. I wish you all the best and want to encourage you to not give up, keep searching for what will work for you.

    God Bless

  18. Char February 21, 2013 at 9:12 pm #

    Hello
    I here all of you, I have a lot of the same symptoms. I got diagnosed with UC about a year ago;(
    I have had bad flare ups since then, having another right now. My last one was 5 weeks ago, I feel like I just get better and then bam again. I also have celiac disease, so I got a double whammy. I have had that for over 3 years now and follow a GF diet. I haven’t figured out if any foods help my UC flare ups. I have feel that I am still banging my head against the wall. I take amino-salicylic acid every day, and when I have a flare up I take prednisone. I am thinking it is not working, I need a change before I go crazy. I have 2 little girls and I don’t have time to be sick all the time;(
    I am going to look into the fish oil that a few of you talked about, any other natural suggestions out there?
    Is anyone else have UC and Celiac?
    It would be nice to chat and get some advice
    Thanks for listening Char
    .

  19. jack jones March 9, 2013 at 5:41 pm #

    Got to tell you, nicotine helps 90% in reducing symptoms for me. I don’t smoke, I take gum or those little nicotine minties. Amazing improvement in twenty four hours! Still got some mild symptoms, but with soluble roughage, hardly notice them.

  20. jared lyons July 19, 2013 at 11:52 am #

    I know the feeling…. I am in the midst of another flare… 4th in 7 months. I am on imuran 150 mg and folic acit and sulfasalazine. I also have a anti cramp medicine that works wonders. Switch to a straight liquid diet. Its worked for me… smoking helps and drink tons of water. Hope that helps

  21. paul August 4, 2013 at 6:31 am #

    I’m suffering symptoms of UC. I’ve been through all the exams but they were inconclusive even though the colonoscopy shows signs of UC. The biopsy did not turn out with a any useful diagnosis. The doctor has put me on mesalasine which relieves the symptoms. However, the stuff is really expensive and I may not be able to afford it. I find eating only bread and water helps with the symptoms. However, I’ve been cramping and bleeding loads for around a month and a half. I suffer other side symptoms; boils all over my scalp and muscle pains in my legs and head aches. I’m at the point where I really no longer care what this thing does to me. Lets get it over with.

  22. Erin haley August 9, 2013 at 5:47 am #

    I was in a very bad state with my first flare up, it took the doctors 4 months to find out what was wrong and when I finally went to a third doctor he knew right away after during my colonoscopy he couldn’t even get the scope in without me screaming, I was Also under anesthesia. They tried everything and finally when I almost died from blood loss they put me on remicade. It literally saved my life! I’m pretty sensitive to medications sometimes too and this worked great! I am having another flare up now to what I think is being caused by stress, and I haven’t seen much blood in my stool but its still all scary. I would try the treatment at a low dosage and see, they were trying to take me off it slowly and that could also be why I’m having another flare up. Good luck to you, it can only get better!

  23. Todd August 10, 2013 at 12:52 pm #

    Try Turmeric!

    I was diagnosed with UC 11 years ago. I have had stomach pain my entire life without the blood until that point. I used to have 3 or 4 flareups a year lasting 3-6 weeks. accompanied with blood, mucous, fever, chills, and screaming pain occasionally. I would also be awakened by rectal pain approximately 5-10 times a month. I am taking 2.4g Lialda daily. My doctor wants me on a higher dosage, but I am afraid of the side effects. I have been taking anti inflammatory foods and supplements that help tremendously. Including:

    – Turmeric (mixed with black pepper that) needed for absorption. 2-3 tsps/day
    – Flax seed oil,
    – krill/fish oil, and
    – vitamin D (6,000 IUs/3 drops daily).

    I had a three week period of blood and mucous a few months ago and started the Turmeric. Within a few days the blood and mucous completely cleared up. It kept me in complete remission with very little discomfort for several weeks. The night rectal pain has only occurred once since I started the Turmeric. A study done at the University of Maryland found that Curcumin, the active ingredient in Turmeric reduced fare ups:

    Ulcerative colitis

    Turmeric may help people with ulcerative colitis stay in remission. Ulcerative colitis is a chronic disease of the digestive tract where symptoms tend to come and go. In one double-blind, placebo-controlled study, people whose ulcerative colitis was in remission took either curcumin or placebo, along with conventional medical treatment, for 6 months. Those who took curcumin had a relapse rate much lower than those who took placebo.

    Source: Turmeric | University of Maryland Medical Center http://umm.edu/health/medical/altmed/herb/turmeric#ixzz2bb17O2yI
    University of Maryland Medical Center
    Follow us: @UMMC on Twitter | MedCenter on Facebook

    http://umm.edu/health/medical/altmed/herb/turmeric

    I also recently started taking Black Seed Oil (also known as Nigella sativa or Black Cumin Seed) not related to the Cumin spice. I read good things about it and it seems to be helping my energy level. I hope this information can help some people as much as it has helped me.

  24. Tena
    Tina August 16, 2013 at 8:52 am #

    I know smoking is horrible. But when I started smoking, I had flare-ups in 10 years, not to bad, not even severe enough flare ups for hospital stays, just some prednisone, cipro and flagyl for a couple weeks. I recently quit smoking for a new job, been nicotine free for 28 days now, and feeling it. Going to ask MD if the patch or gum will help with UC.

  25. hodan January 26, 2014 at 11:21 pm #

    o sorry about your flare up, I have had UC fo 4month now. Prednisone never worked for me when I was originally diagnosed and I spent many weeks at a time in the hospital. You know the usual symptoms , the have all been described. I am 5’11′ and at one time was down to 115 #s. I would usually get better after a couple of weeks and would go into remission but of course it would come back. My doctor and I sat down and tried to figure out what the difference was between home treatment and hospital treatment. We came up with the way the steroid was being administered. I stared taking an injectable steroid at home during flare-ups. It is a real pain because you have to either get a pick line put in or have a nurse visit about every 3 days to change an IV site but they teach you to put the steroid solution in your self. For me this type of treatment made all the difference, don’t ask me why. We are all so different as you have read from all of the answers you have received. What works for one person is of absolutely no use to someone else. I think this is
    worth a try if you are in a serious flare up. I would also recommend being sure you are completely confident in your Dr. Just like treatment types, there are lots of different ones and you want one that is open to trying new things and willing to try anything that makes sense to help you out. I will tell you that in my case, the weaker i get the less severe my colitis has become. This has been true for me after about 6 month with the disease and has continued into my17yrs . My Dr., the head of gastroenterology at a major hospital in Arizona , thinks that it has something to do with our immune system getting weaker. Most of my flare ups can me contained with just a steroid enema these days. I wish you all the best and want to encourage you to not give up, keep searching for what will work for you.

  26. Stevie October 5, 2014 at 3:00 pm #

    My question also is, does anyone feel nauseated just looking at food? I want to eat but every bite i gag on. It’s like my body is rejecting it cos it knows food is making me sick. I don’t eat red meat, gluten or dairy. And I’m allergic to coconut.
    Im a healthy person, studied naturpathic health and was raised that way. Now I can’t even look at food. Except apples and apple sauce. They seem to be okay for an odd reason.

  27. Salsaflamenca January 16, 2016 at 5:37 pm #

    I am so sorry to read everyone’s story.
    UC is so painful ans scary. In December i spent lots of time in hospital with C-difícil and severe inflammation. They wanted to do a colectomy but IV steroids and remicade helped me avoid surgery. Now I am stuck with that. I am tapering prednisone, hopefully I will stay the same because I feel much better, gained back my weight. I honestly felt I was going to die for two months. I thought about death and suicide and I felt like life was going to end. I was lonely, living on the other side of the planet from my family. On my couch, not eating, losing so much weight so fast, 20× day with blood, gas, mucus. I have never been this way after 10 years of UC. I think it was also the C-difficile. But I’ll never know as they diagnosed it a month and half after the flare started again.

    Even though I feel better I still have that slight constant pain in tummy. Go to washroom few times when my colon decide to get rid of he waste. But at least I am not straining like crazy and suffering so much like I did. It was horrible. I still see traces of blood and mucus.

    Now I am going to do the ALCAT food test allergy and try to find the foods that won’t inflame this nice lovely colon of mine. We gotta love him and make him cooperate with our body so we have to help and put the right things in our mouth. It is hard because we live in a world where everyone eats sugar, gluten, processed food, crap.

    I am on so many different kinds of supplement besides the heavy med such as L glutamine, b12, d, áloe verá, fish oil, probiotic, turmeric, forgetting for sure which ones.

    Todd,

    You say that you take turmeric with pepper. How do you do? My parents take it as well. They mix it with tomato sauce but is there a way to not mix it with tomato sauce?

  28. joanne March 24, 2016 at 3:14 pm #

    Hi i have had Uc for twenty five years now i have had only mild flare ups in the last 10 years so have been lucky off meds for the last 5 years was on m6. But am now experiencing the worst flare up have had severe abdominal pain and diahorrea for 23 days. But because i have moved towns need to organise seeing a different specialist i have made an appoinment but think i cant wait any longer and need to go uo to emergency. Jojo

  29. Meghann October 5, 2016 at 9:40 am #

    I was diagnosed with UC in 2008 & had a horrible first flare…hospitalized, lost 40lbs in a month, quit working. I couldn’t go 20 minutes without running to the bathroom to vomit or have diarrhea. It was horrible. I finally went on prednisone & asecol (sp?) to nip the immediate symptoms. I also started taking VSL#3, a heavy-duty probiotic specifically for UC and I did the SCD for 6 months. Since then, I have avoided all gluten-containing foods and limit corn, dairy, sugar & other grains.

    I have had very mild flare-ups here & there since 2012, but didn’t have any for 4 years after this major one. I have also primarily been off of medication since 2008…I’ve taken it here & there when it seems that a flare-up is impending.

    I swear by the SCD or the AIP diet and adaptogenic herbs and load of probiotics & fish oils and hormonal supports. We are sensitive beings, us UC people & so managing stress & diet is a HUGE part of maintaining health…it can sometimes suck, but, in my opinion, it is worth it.

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