Just Diagnosed with Ulcerative Colitis and Terrified

Jackie diagnosed UC

Jackie with her family

My symptoms began with bleeding, I would have hard stools with blood and lots of gas. When I went to my doctor he said I had a hemorrhoid which was the cause of my symptoms. After abdominal pain, excessive gas and bloating, I knew something else was going on.

Jackie’s Ulcerative Colitis Story:

Hi all, it all started when I started experiencing symptoms such as bleeding and constipation when trying to use the restroom.

I made an appointment with my doctor, he performed an exam of just basically checking my colon and said I had a hemorrhoid. All he said was to change my diet and eat more fiber. My symptoms did not get any better, I began to have abdominal pain and excessive gas along with bleeding when trying to use the restroom.

I immediately requested a colonoscopy, I knew something else was wrong with me.

Sure enough right after my colonoscopy, the doctor walked into the recovery room and told me I had Ulcerative Colitis, prescribed me mesalamine and steroid suppositories. I asked how long I was to stay on the medication and he said “forever” I didn’t know what to think or feel. I was glad it wasn’t colon cancer but then after reading up on UC I became terrified. I began taking the medication and for some reason I started feeling worse. After more investigating and reading, I think I got uc from all the antibiotics I took from my ongoing UTI’s. For my last uti my doctor prescribed me a much stronger dosage, 3 months later I have uc. I don’t know what to think or do, I think I’m going to stop my medication and try to take probiotics, a type of juice plus supplement, glutamine and astaxanthin. Right now my symptoms are excessive gas, bloating, abdominal pain and exhaustion. I believe I’m constipated due to my hemorrhoid, the colonoscopy also showed small internal hemorrhoids along with a larger one externally along with UC.

I’m terrified of what the future holds, I cry most nights since my diagnosis and just hope that this disease doesn’t take over my life since my daughter relies on me 100 percent.

Any thoughts or suggestions are greatly appreciated. Wish you all the best

Medications:

Mesalamine 3 a day
Steroid suppositories

written by Jackie R

submitted in the colitis venting area

 

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49 Responses to Just Diagnosed with Ulcerative Colitis and Terrified

  1. Rose November 1, 2017 at 12:53 am #

    Unfortunately there is not one right fix to UC. My son has had it for about five years. What works best for him, might not work for you but this is what has helped him the most so far. He cut from his diet dairy, about 90% of the sugar and 50% gluten. He takes milk thistle pills, intestinew and VSL #3. He has had the start of two flares this year and when he did, he increased the VSL to four pills a day (up from two) and started a prednisone taper (starting with four pills and working down). This has kept him out of hospital longer than anything prescribed. He was on humira, Remicade and a variety of other pills that did not help for long. I don’t think this is a cure at all but seems to work best for him so far. Good luck and don’t get discouraged. You will find what works for you!

    • Juen Socer November 1, 2017 at 2:16 pm #

      I suggest you ask your Doctor about using Entyvio. It is an infusion you receive every eight weeks. The drug has put me into remission as I do not suffer any symptoms as my symptoms were similar to yours. I suggest this drug highly.

      • Jackie R
        Jackie November 1, 2017 at 4:23 pm #

        hi Juen, did you try any other medications before getting on Entyvio?

        • Rob November 3, 2017 at 3:25 pm #

          Jackie your doctor will guide u through the meds. U start on ASA and there are variations to try before moving to the more powerful drugs. U don’t state the type of UC or extent but from your treatment it sounds like mild to intermediate and proctitis/left sided. Read the medical journals regarding drug treatment plans and ur Doc will prescribe based on your severity and symptoms. Good news is there are many options to tame the beast and keep us in the game. Get educated on the options and ensure u have confidence in your medical team to correctly advise when to try a more powerful option?

          • Jackie R
            Jackie November 6, 2017 at 6:35 am #

            Thank you for your advice Rob, I hope to tame this beast soon!

    • Adam
      Adam November 1, 2017 at 3:01 pm #

      Jackie,

      Thank you for sharing your story, and as much as you don’t want to be welcomed into something like UC, on behalf of the hundreds of thousands of others on our planet, we completely understand(down to the last piece of toilet paper on the last roll in the bathroom before you run out and have to somehow start using tissue paper or whatever else you can find) how you feel, and it is a mental battle as much as physical. But don’t feel alone. We feel it too.

      The good news is that there are as Rose alluded to, many different ways to get yourself feeling better and back on track. The first weeks and sometimes months or years are the hardest, but you will certainly find your way. You will need help from time to time, and I can assure you people will be there for you.

      If you are interested in checking out a video I put together on getting out of a colitis flare, you can hit this one up when you like. Perhaps you can use some of the diet related ideas to test out as well.

      https://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

      Please keep us posted on how things go in the coming weeks, and thank you again for sharing.

      Best to you and your fam!!

      Adam

      • Jackie R
        Jackie November 1, 2017 at 4:49 pm #

        Hi Adam, thank you so much for creating this site where we can all share and talk to one another. It really has made a difference and has given me some kind of hope. Just a quick update: I had a doctors appt with a different doc 10-30, I broke down and told him I had stopped taking my meds and trying to live a healthier lifestyle while taking natural supplements. He advised that I keep taking my Mesalamine. I explained that i felt slightly better while off the medication… and that’s when he told me about a patient he had whom stopped taking her meds completely, and like me , she tried other natural medicines and felt much better and felt as if she was in remission for a whole year. Once her annual colonoscopy came up again he said her colon was so inflamed he could not insert the camera to actually perform the procedure. Eventually she had to get her colon removed. I’m not sure how common this is but i was extremely taken back by this story and decided to follow his orders. I’m currently taking Mesalamine and he also prescribed Uceris. On my own I’m also taking a probiotic (100b) and 1 serving of organic juiced green powder(garden of life) along with Collagen supplements. My concern now is that this disease will spread, only time will tell. I hope and wish everybody the best of luck.

        • Yvette H
          Yvette November 7, 2017 at 1:14 pm #

          Hi Jackie,
          Your response made me sad and I feel for you and your reactions to this diagnosis. What I can share with you is this; learn to be as proactive with your health as you are with your daughter’s. As Moms, we are often willing to go to extraordinary lengths to find what works for our kids, you have to make sure that you put that same amount of effort into your UC journey.

          I’m not going to lie. UC sucks, but it is manageable and you will find ways to feel like your life is yours again. Trust me, this comes from a mom of three who has shit herself in public. I always thought that would be the worst thing that could happen. It’s not. The worst thing would be to give up. Don’t give up and don’t lose hope. Ask slot of questions, get multiple opinions from several types of healthcare professionals, take a nutrition class. Be your own advocate.

          Also, at all times, maintain a sense of humor. We all struggle and face our own battles, but know that you are not alone and that it can and will get better. I stayed in bed for 3 days after I was diagnosed and then my son asked me if we could finally go to the park. Life changing that day.

          Hang in there. You’ll find a regimen that works for you and until then, we are all here to support you.

          FYI, my diagnosis 08/15 – Remicade infusions, once every 8 weeks. So far, life is good again.

          I’m pulling for you!

          Yvette

          • Jackie R
            Jackie November 16, 2017 at 6:11 pm #

            Hi Yvette,
            Thank you so much for your comment and support. You made me laugh, and gave me such uplifting advice. I have tried to not let this disease take over my life, and like you said as moms we do anything for our kids but i realized i need to do the same for myself if I want to be there for my daughter in the long run. I hope current medication keeps you feeling well. Again, thank you for your support it means a lot.
            -Jackie

    • Jackie R
      Jackie November 1, 2017 at 4:50 pm #

      thank you so much for your response Rose… I’m currently also taking a probiotic 100 billion, I wasn’t aware of the VSL#3, I will look into it further.

      • Rob November 3, 2017 at 3:04 pm #

        Hi, i’m two yrs into mild UC, it’s a pain in the arse yep but doesn’t have to take over your life. You’re flaring so work with your medical team to find the right treatment for you. Take the meds’ as they do work. Understand the severity of your disease and adjust your diet to ensure you’re feeding the body without aggravating your UC. I eat everything and anything – sometimes I suffer but most times i’m normal. 1 in 4 have surgery bless them, so when you read the horror stories on the web don’t think that is a guaranteed course of your disease. If u have proctitis u have a 20% approx chance of the disease progressing so that’s 80% chance it won’t! Not trying to belittle this disease as we r better without it, just helping with context and mindset.

        Check out shenzo abe – he runs the country of Japan and has had UC for 20+yrs he travels, speaks publically and has a high pressured job! So life is totally doable, it’s just you have to find your new normal. Getting right can be a marathon and not a sprint. I still take my meds’ have tried to reduce the dose but the symptoms came back so ramed up again and normal service resumed. I’ve ridden 100 miles on a bike stay fit and healthy, got married, travelled, look after my kids and keep going. So long as a loo is nearby (just in case) everything is normal. You can do it…try looking at Lewis moody (English rugby captain) he has UC, won the world cup with it and is still highly productive today. Sir Steve Redgrave (8 time Olympic champion rower) he’s also diabetic but still won gold and has completed three London marathons with his UC and is still active! Siobhan O’connor (Olympic silver medalist swimmer) Cory Greenberg (Pro cyclist), Brett Morse (model and Olympic discuss thrower), JFK – all achieved great things despite their UC and continue to do so. I hope these people inspire u as they did me and show u there is a light at the end of your first flare! Remember those with UC under control living a normal life don’t post online so don’t just think your destined for the operating table. If you do get there then have faith that many get through the surgery and have a decent quality of life afterwards. Hope this helps you? I still worry for sure but try not to waste hours worrying about something that isn’t happening today!?! In a way everyone could drive themselves potty as even if they r well today they won’t be in future and will die one day (extreme I know) but take the principle of u can get UC under control and have a happy productive and fulfilling life so try not to waste your hours today worrying about the what if in future?!? I take ASA 800mg tablets per day and two suppositories. Imodium does help stop everything for a day or two but I take that only when I have major events ahead and certainly not daily. As i’m feeling well currently i’m trying to reduce the suppositories down and take the oral meds only to see how I get on? I’ve never had a day off work and never missed any of the kids activities etc. Wishing u well and hope u r writing this for a newly diagnosed person two yrs from now! mostly u will be in remission so get out and love ur life to the fullest.

        This article really helps me when i’m feeling down (last paragraph)

        http://www.nytimes.com/ref/health/healthguide/esn-ulcerativecolitis-expert.html

        • Jackie R
          Jackie November 6, 2017 at 6:39 am #

          Thank you Rob, I really was not aware of all those people that also suffer from UC, it does give me hope that I can possibly soon start to feel normal again, or at least as closest to normal as I can get. Reading your comment honestly made me feel calmer and has given me more hope. Thanks again Rob!

      • Grant November 16, 2017 at 8:58 am #

        Hi Jackie!!

        Your story sounds like mine! I tried all meds and they all failed but im now in remission after STRICTLY!!following the Specific Carbohydrate Diet (SCD) It’s tough but worth it. Every one has to tailor their diet as some things work for me that don’t for others and vice versa. I also use Naltrexone 3mg every day. It’s a cheap drug that helps boost the immune system. I also do yoga, take a bunch of supplements and cut out alcohol. I know where you are right now, it’s not a nice place but I can honestly say that thanks to websites like this and the book Breaking the Vicious Cycle I wouldn’t have reached the place I am now. Take it easy with the probiotics at first as too much of the bifidum strain can over populate in the colon and cause more harm than good. (You’ll find all this info in the Breaking the Vicious Cycle book by Elaine Gottschall).
        Good luck and all the best!

  2. Jennifer November 1, 2017 at 4:28 am #

    Jackie, our stories are extremely similar. I was treated for hemorrhoids for 4 months before things worsened and I requested a colonoscopy. Doctor came in and said I was correct, that I had UC. It was mild proctitis. Prescribed me mesalamine suppositories. I immediately asked about diet and he said it did not matter. He also said many people stop the meds and are fine. This was January of this year. My then dietitian put me on the low fiber diet, but having a nutrition background myself I knew that the diet was very unhealthy.

    I researched night and day until I decided to try the specific carbohydrate diet and I saw immediate results. However, I messed up in April and got really drunk on wine. The same doctor put me on mesalamine tablets and within a month I stopped responding to meds. I intuitively knew that this wine incident is what spiraled me into needing hospitalizing in May. During the hospital stay, we discovered that my UC was now severe extensive and had spread to half my colon.

    As of 10.5 of this year I am in clinical remission. A mediator release test/program unveiled that I was highly reactive to.many things including a chemical in wine, chocolate, and aged cheeses. My intuition was confirmed.

    Doing nowleap.com (LEAP diet) alongside my specific carbohydrate diet and staying on the mesalamine pills and suppositories has worked for me. I believe LEAP was my key. I do have a blog should you be interested in learning more. I keep links to research articles and many other sources there because I know how terrifying this diagnosis was for me.

    It is more common to heal and maintain remission with IBD than it is to spiral out of control. It is possible to recover, but patience and learning to love yourself and being gentle with yourself are key. Do not scare yourself more – stress is a trigger.

    Good luck to you.

    • Jackie R
      Jackie November 1, 2017 at 4:30 pm #

      hi Jennifer, our stories do relate. I have a couple questions… Were you also taking mesalamine while you were on the SCD? And what happened to you that caused your hospitalization? Lastly, did the doctors have any idea as to why the UC had spread so quickly? Thank you for your advice, you are right stressing over it does not help me at all, in fact it makes me feel worse. Thank you so much for your time, wishing you the best.

      • Jennifer November 2, 2017 at 3:52 pm #

        Yes, I am and was taking mesalamine while on SCD. What I believe caused my hospitalization is an inflammatory response to a chemical in wine which I now know I’m highly reactive to. By that I mean it causes inflammation in my body which may have localized in the colon where there was already inflammation. The chemical is in aged cheeses and chocolate and I already know that chocolate is a big no for me with the IBD.

        The doctors just say it’s what happens or it’s the nature of the disease. I disagreed. They wanted me on remicade and I asked them to let me try it my way first. Well, my way has me in remission at least for the time being (you never know…).

        I also take vitamin D with k2 which you can research how important vitamin d is for us with IBD. Helped immediately.

        On my site, under the about section, you can see my full regimen if you’re interested. Good luck! It’s tough at first, but I believe this has made me much stronger.

        • Jackie R
          Jackie November 6, 2017 at 6:43 am #

          Hi Jennifer, I wasn’t aware that the Vitamin D is very important for us that suffer from UC. As I read more and do my research I see that most people with UC also take additional supplements on the side along with medication. I will def look more into vitamin D. I also hope this makes me stronger, I try my hardest everyday to not let this disease take over my days, but some days are definitely harder than others.

          • Sher November 18, 2017 at 9:42 am #

            Jackie,

            Ask your general practitioner to do blood panel to check your vitamin levels. My doctor found my Vitamin D dangerously low as well. Currently on 2000 mg a day. I get a panel about once a year. Also, I started out gluten free 6 years ago and it helped to stop the bleeding. Psyllium Seed Husk Powder stopped all of my other symptoms. I started slow though, only a teaspoon an evening. Everyone is different though. I have been in remission for over a year now with no traditional meds. Good luck, I hope you feel better soon!

  3. Susannah November 1, 2017 at 6:35 am #

    Hi Jackie! I know how scary a UC diagnosis can be. But you can go on with life. It may look a little different, but you can find a new normal. My best advice is take one day at a time, give yourself lots of grace, and find little things every day to be thankful for. I wouldn’t stop medication at this point, give it some time to work. Probiotics and glutamine are a good idea tho! Best of luck!

    • Jackie R
      Jackie November 1, 2017 at 4:32 pm #

      Thank you! Your words of encouragement really did put a smile on my face. After speaking to another doctor I have decided to stay on my medication after all and make other dietary changes. Good luck to you too!

      • Rob November 3, 2017 at 3:40 pm #

        Good choice Jackie, it’s hard I know been there so hoping i’m helping u here? I was a half iron man when my first flare hit me. The thought of taking meds daily and for the rest of my life just didn’t compute with me. Still doesn’t at times but I take them and track my doses with Medisafe app. I sware by the meds and with them I could do my iron man again if I could be bothered LOL quite like the chilled out life to be honest.

        Trial and error but get back to ur normal or as near to as possible then work out your maintenance dose to keep the next flare away.

        2 yrs and I’ve not yet flared anywhere near as bad as my first time. Japan’s prime minister also take ASA.

  4. Jackie R
    Jackie November 1, 2017 at 4:22 pm #

    thank you so much for your response Rose… I’m currently also taking a probiotic 100 billion, I wasn’t aware of the VSL#3, I will look into it further.

  5. Jo Ann November 1, 2017 at 4:50 pm #

    Hi Jackie..I also was diagnosed with Ulcerative Colitis soon after the birth of
    my son. He is 33 yrs old now. I have been living with UC for over 33 years..I have had my ups and downs..I was in remission for a few years but in July of this year I had a flare up and was put on supositories and enemas. When I have a flare up I have bleeding and diarrhea..and gas..but I never get stomach cramps. I got my flare up under control after about a month..but now I am having a flare up again..trying to get it under control myself before I call my GI doctor. I take Apriso..4 capsules a day and VSL#3 which is a probiotic..I usually take 1 or 2 a day..but when I have a flare up I take up to 6 a day..but they are not covered by insurance. I have also cut out coffee..which I love..and I eat mostly gluten free. Good luck to you!

    • Jackie R
      Jackie November 16, 2017 at 5:45 pm #

      Hi Jo Ann,
      I seem to have the same symptoms as you, I stopped bleeding and there is no more of that mucus either, but i still do have diarrhea. I keep hearing about VSL#3 I’m going to give that a try once i finish my other probiotics. thanks for your comment :)

  6. Carolyn November 1, 2017 at 11:40 pm #

    Most of my inflammation is distal, more isolated to rectal/Sigmoid area. I take Lialda (Mesalamine) 3.6g daily, vitamin D, and a probiotic. In my last flare, prednisone taper didn’t work as much as it had before, but the Mesalamine enema helped a lot. I get constipated during my flares because of the inflammation. I guess my body doesn’t want stool passing through the inflamed colon.
    I have been in remission for 9 months now with the meds listed above along with the enema twice weekly. Please don’t stop taking your meds. Get your flare under control first. Avoid high fiber foods while in a flare- aim for a soft diet until you obtain remission.
    Wishing you the best!

    • Jackie R
      Jackie November 6, 2017 at 6:48 am #

      Hi Carolyn, thank you for your comment. I have decided to take my meds as prescribed by the doctor, I do feel better and the more I’ve read the more i realized that it was my safest option.

  7. Gentle J November 2, 2017 at 1:31 am #

    Hi Jackie,

    I can feel you as myself was diagnosed with mild Ulcerative proctitis. I don’t know If you have inflammation other than the rectum area of Colon. I was devastated by the diagnosis. And went for several other treatments for the diease including conservative drugs.
    The way which may work to me may not work you completely. But I believe it’s worth to give a try. Right now I am in 100% plant based diet( no diary too), not completely gluten free. I meditate yoga (kapalbhati pranaym) at least for 15 minutes every morning. And drink one tea spoon organic turmeric powder (no pill’s or supplement turmeric) with very little black pepper powder in empty stomach with mild warm water in nmorning and during before going to bed. After following this miracle happen to me. For the very first time, my bleeding stopped and i am drug free after that.
    Many scientific study had shown the turmeric (curcumin) have very strong anti-inflammatory properties even effective than mesalazine and other anti-inflammatory drugs. And I noticed the anxiety and stress is also other factors that need to be checked for effective result. For me yoga works the best. Diet also plays the very important role. Go full plant based diet not just vegan ( There is a difference).
    I believe that every disease including mental illness occurs if one of the following things goes wrong : Diet, life style and sanitation. I hope it may help you.

    • Anndra November 9, 2017 at 11:27 am #

      I have also started the turmeric but I do capsules..just one a day. Also, Mesalamine (one pill a day). I was just diagnosed on Oct 20th and my colon was so irritated that the ulcers were brown. I was in the ER after my colonoscopy and in bed for over a week. I am down about 20 lb’s and trying my best to overcome this as I am the only parent to a 5 yr old. I am also taking aloe twice a day, drinking kefir, taking a probiotic and slippery elm before bed. I haven’t had any bleeding or severe cramping in a week.

      • Jackie R
        Jackie November 16, 2017 at 6:17 pm #

        Hi Anndra,
        How is the tumeric working for you? I know how hard it can be. Like you, I’m a single parent and sometimes wonder why this disease happened to me. But then I look at my daughter and i tell myself that I cannot let this disease get the best of me. I was in bed for days, missed work and was just a mess. It was until i changed my perspective on life and made the decision that I was going to control this disease and not let it control me. Best of luck to you.

        • Anndra November 23, 2017 at 8:01 pm #

          Hi. I’ve cried a lot after my daughter goes to bed and sometimes at work. The turmeric capsules ate working great. I think the aloe is as well. I take 4 tb twice a day. Probiotic too. I jyst switched dr’s. I still haven’t had a conversation with the Dr that did my colonoscopy. I don’t really have specifics on my biopsies. Just had all my records sent to new Dr. I remain hopeful :)

    • Jackie R
      Jackie November 16, 2017 at 5:49 pm #

      Hi Gentle J, I commend you for changing your diet, I have tried making some changes but it is so hard with my busy work/mom life. Have you gone to get a check up now that you have stopped taking your meds? My bleeding stopped also, thank goodness. The only symptom that i have now is diarrhea. Good luck to you!

      • Gentle J November 17, 2017 at 4:31 am #

        Hi, Jackie

        I have been to doctor after changing my diet and lifestyle. Guess what, now there is no any sign of inflammation. My calpro level is normal and inflammation indicator b- la is also ib normal range.

        I hope you are doing well.

      • Gentle J November 17, 2017 at 4:33 am #

        Hi, Jackie

        I have been to doctor after changing my diet and lifestyle. Guess what, now there is no any sign of inflammation. My calpro level is normal and inflammation indicator b- la is also in normal range.

        I hope you are doing well.

  8. Liz L November 2, 2017 at 8:27 pm #

    Know that there is a light at the end of the tunnel. I was told after multiple hospitalizations my inflammation was so bad that I’d be on Humira for years. Well, two years ago I went into remission and have been flare free since. No longer on Humira I’m no longer taking any medication prescribed by my GI at all. Annual colonoscopies have shown very very mild inflammation and. Is I completely manage my UC on diet alone. I’ve found the worst thing for me is alcohol, so I just stay away. Good luck to you but know that it will be ok!!

    • Jackie R
      Jackie November 6, 2017 at 6:50 am #

      Hi Liz, thank you for your comment. Is there a particular diet that you follow? How did you know you were on remission? For some reason since taking my medications, the bleeding and mucus has stopped, but I still get d and go up to 4 times a day.

      • Sher November 18, 2017 at 9:47 am #

        Jackie, Have they prescribed Lomotil for your d? It completely goes away when I had that. Just a suggestion.. it’s like Immodum but works waaaay better.

  9. Michelle November 2, 2017 at 11:42 pm #

    I was just diagnosed. I have had to go to the hospital every month for the past two years for low sodium, hyponatremia. Because I told them at hospital that I drank beer, they immediately blamed it on the beer. I finally went to a different hospital, my sodium was low again but I was so dehydrated I could barely walk. I had a UTI the month prior and was septic for the second time. They did a cat scan of my abdomen and finally diagnosed me with Colitis. My father had it and so did my grandfather. I am constantly exhausted and wait until I am actually passing out before going to ER. I feel like a hypochondriac. I get admitted every time. It takes about 3 days to get my sodium back to a normal level. You can die from low sodium. Anyway I was wondering if anyone else with Colitis gets low sodium also

    • Jackie R
      Jackie November 16, 2017 at 5:52 pm #

      Hi Michelle, wow so sorry to hear about your constant hospitalizations. I don’t have those symptoms and luckily have not had to go to the hospital because of my UC. Have you tried a different diet? I take a green superfood shake every morning and that helps me with energy and makes me feel good through out the day.

  10. Jackie November 3, 2017 at 11:04 pm #

    Hi Jackie, my heart goes out to you. 2 yrs. ago I ended up in hospital with same terrible pain as you. I tried to avoid flares naturally and it worked for 3 months. I’m convinced every body is different for recovery. I haven’t had a flare for 1 1/2 yrs. here is what worked for my body.
    Naturally:
    Probiotics daily Florejen 3 is awesome, needs refrigeration
    Eliminated sugar 90%
    No chocolate
    Became totally conscious on how to alleviate stress by breathing and the mantra one day (or minute) at a time
    No whole wheat
    No raw vegetables
    Sometimes I can eat cooked onions, sometimes not.
    Chemically:
    Prednisone after 9 day hospital visit (worked wonders for me) was on for 2 months
    Asacol was and is the medicine for me (2 (800mg) a day). I think in the US it is called something different.
    I also use Tucks hemmoroid cream occasionally when there is irritation depending on what I ate, works wonders to take irritation away. Witch hazel is great.

    Good luck experimenting on what works best for you.Another Jackie

    • Jackie R
      Jackie November 6, 2017 at 6:57 am #

      Hi Jackie, thank you for your comment. I do notice that stress does not help at all with this disease, when i was diagnosed i stressed so much and i could hardly sleep. It emotionally and physically took over my body. I will look into stress relieving techniques as well and hope that helps me. If you don’t mind me asking… How did you know you were on remission? Some of my symptoms such as bleeding and mucus have stopped completely but i still have D up to 4x’s a day. Thanks again Jackie!

      • Jackie November 16, 2017 at 9:11 am #

        Sorry for the late answer. Good sign the blood and mucous went away for you. Sounds like your body is beginning to heal. Everyday should feel a little better. If you still have D, I suggest adjusting your diet to safe foods. For me it is applesauce, chicken breast, chicken soup, white toast. I listen to my bowel movements about what foods to eat. I really baby myself around food until I feel normal. My y symptoms that I check off is No abdominal pain, less tired, nausea went away, bowel movements normalized.

        • Jackie R
          Jackie November 16, 2017 at 5:56 pm #

          Hi Jackie,
          Yeah I’m thinking my diet should maybe be altered because the D just wont go away. Do you sometimes wonder if the medicine(s) makes you tired? I take a green superfood shake every morning to give me energy sometimes if needed i take another in the afternoon. it has really helped me out. I’m glad your symptoms are going away :)

          • Jackie November 17, 2017 at 9:19 am #

            Hi again, I think if you are still feeling tired you have not recovered from your flare totally, makes sense if you still have D. I’ve learned to listen to my stomach daily about what I choose to eat. Take care.

  11. Joanie. B November 5, 2017 at 5:42 pm #

    Hi Jackie, it’s great to read your story, it touches me, that’s why I’m writing to you. I’m 35 years old and I have UC for over 20 years. I have been without symptoms for a long time and without taking any medicine. The last years have been different; I had several symptoms, among others more serious after giving birth to my baby. At times, I stopped my medications, had a good life style, stopped drinking alcohol and coffee, eaten organic, drink green and cabbage juice, and so on. But I realized one thing, in period of flare, stress or change in my life, the best is to take the medication. UC does not settle without the medication unfortunately. A good lifestyle improves it but does not cure it. Currently I’m fine so I do not take medication but I know that one day I will have to take it again, and the slightest symptom or if I feel bad I take them. So I never stop completely anymore. I want to be in good shape for my baby, and for myself anyway! I am taking vitamin D, probiotics (50 billion Renew Life), a good quality multivitamin and I feel good! In the last years my GI changed my treatment, I am currently taking Pentasa and Salofalk suppositories. I really recommend you to take your medicine at least until you get really good, and then stop if you want (me too my GI recommended not to stop but in reality it’s hard to take a medicine every day, I understand you!). Good luck xx

    • Jackie R
      Jackie November 6, 2017 at 7:04 am #

      Hi Joanie, thank you so much for taking the time to write your comment. Congrats on your baby! I’m 30 years old and I hope to have another baby soon within the next year, after my diagnosis I thought that maybe that wouldn’t be the best idea after all and I should focus more on getting this disease under control. Did the UC affect your pregnancy at all? Also, have you had a Colonoscopy to see what status or change your UC has gone through if any? Thank you in advance!

      • Joanie. B November 7, 2017 at 5:12 pm #

        Hello Jackie, I’m really happy to answer you on this site. One year before getting pregnant, I was in complete remission, I had a colonoscopy showing that I had no trace of UC anymore, my GI recommended me to take the lowest dose of Pentasa in prevention but I personally decided to not take it, I was feeling so good. Around 6 months of pregnancy, I started to have blood, I thought that might be hemorrhoids so I tried drugs for that without success. My GI could not do a colonoscopy because I was pregnant but he recommended me to take my meds for UC, which I did with a lot of sadness, even if he says that it does not hurt the fetus… but nothing worked, I really had a lot of blood and I was so worried. The delivery went well and my baby was in excellent health. Subsequently, the symptoms were worse. My GI was not available, so I paid for a private colonoscopy, a great investment! I had a severe proctitis, the UC was back. I finally had the right treatment and now it’s going great. The hardest part for me was taking meds while breastfeeding or being pregnant at the same time. We want the best for our baby! My boyfriend and I are already trying for a second baby and at the slightest sign of UC I will take my medication because I do not want to lose control again. UC does not stop me from wanting another baby, I do not let the disease controlled my life, but it’s a challenge! I think it takes a good doctor and a good treatment to not be alone with the symptoms. When my symptoms were worse after childbirth, I got up at night to breastfeed and I had to drop my baby in a hurry and run to the bathroom, it was so difficult, but the joy of having a child made me go through the symptoms I guess. Btw, my GI told me 1/3 of the pregnant women had no symptoms, 1/3 remained as it was and 1/3 had worse symptoms … I’m here for you if you have more questions…

        • Jackie R
          Jackie November 16, 2017 at 6:00 pm #

          Hi Joanie,
          Thank you so much for responding and sorry for the late reply. I’m so happy your baby was born healthy. I guess that is my fear, for my baby to be affected in any way by this disease. What meds did your doctor put you on the second time around?

  12. George Honeyman
    George November 16, 2017 at 3:02 pm #

    Hi Jackie

    Thanks for your story and how you feel about UC. I got diagnosed on the 30th 2017 and it is a shock, I am fit and healthy. When I say to people they looked more shocked at me. I had been bleeding for 6 weeks, I thought it was hemorids. But when I went to the doctors on the 6th week he said no your fine. Took blood and a stool sample. Within 5 days I was up at A&E with the abdominal pain, it was terrible. I got sent up immediately to Oban hospital, straight on Morphen for pain relief. I got a colonoscopy the next day and spent 3 days in hospital in pain. I started my meds’ I am hoping things get better soon, had a flare up last night. Pain was insane.

    For me it has got me down a little, emotional to say the least. I am a very positive person but this has taken a bit out of me. Reading your sympotoms and how you feel along with the other comments made by others gives the future a positive one. georgehoneyman@icloud.com if ever want a chat.

    This is a fabulous website. To express oneself and to find encouragement for one another. I hope you start to feel well and the meds start to take effect.

  13. Brian stevens November 18, 2017 at 10:07 pm #

    Ive had uc over 10yrs and recently had a bad flare an couldnt stop bleeding I started primal defense probiotic, juicing cabbage,carrots,and cilantro and drink 8oz three times a day. Also, take 4 slippery elm caps with warm water before every meal. Thank God bleeding stopped and Ive stopped taking meds.

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