Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

Rachel’s Story: Diagnosed on My Birthday and Just Want to Be “Myself” Again

I’m new to this. I’m here to learn and contribute. If I can get into remission, I am interested in being medication-free with focus, time, and effort. I just turned 31 and I was diagnosed with Ulcerative Colitis one week ago. As far as I knew, I was completely healthy 2 months ago with the exception of some minor things. My doctor reported that my case of UC is moderate to severe. Overwhelmed but trying to be positive.

Some more about Rachel:

An interesting question for me at this time. The last ten years have mostly been about work, health, travel, and having fun. I’m a happy person. I appreciate enjoying simple things (thinking that’s going to come in handy now). A couple months ago, I was just starting to finally navigate how to stick up for myself more at work and work/life balance. But outside work – I guess most of my interests went from being my favorite things to sources of future anxiety overnight with this diagnosis. Friends and family, restaurants, traveling, food and drinks, spin class, concerts, skiing, the beach, and just relaxing.

Symptoms:

I’ve been on Prednisone 40mg a day for 1 week. The same day as my colonoscopy, I started the SCD, and within that, I’m only eating foods that seem to be recommended during a flare up. I have time on my hands….doing so much research (though I still feel I just started). I wish there was a way to know how long it will take to get into my first remission.
– 1 week after my worst point (which I’ll describe in my story), these are my current symptoms:
– Bleeding and cramps for an hour in the morning (between 1-6 bathroom visits), bleeding 1-3 times later in the day. Liquid, red blood and things that look like red tissue pieces
– When I need the bathroom..I need to be in there within a matter of 5 seconds
– Recent labs (April) showed I have low vitamin D and elevated alkaline phosphatase before my diagnosis
– I get tired easily but feel like my energy is returning
– Little to no poop for the last 5 days – Which is feeling VERY abnormal for me, but I think I’m digesting most of what I’m eating? Tiny tiny poop. Trying not to stress and strain in the bathroom, as I assume it’s causing bleeding?

Rachel’s Story:

I’m new to this. I’m here to learn, contribute, try new things, work on myself, and hopefully help others at some point. I just turned 31 and I was diagnosed with UC one week ago, after my first flare up took over my life. I found this site 2-3 weeks ago. I was severe, I had escalated to using the bathroom 20+ times per day, bleeding, diarrhea, cramping, and around a 5 second warning to make it into the bathroom. It was bad. Scary. Disgusting. The daily bleeding started April 25. Before that, I had daily diarrhea for 5-6 weeks. My GI doctor reported I’m a moderate to severe case – A week ago my colonoscopy showed UC in my rectum, sigmoid, and descending colon. My doctor stopped my procedure at that point due to the inflammation. I’ll ask her for my pictures at my first office visit on May 25 – I’m interested to see I guess.

I have never (ever) been someone who talks about bathroom-related things. I’m pretty private in general, nevermind about the bathroom. I don’t post a lot online, I’ve never even reviewed a product. Now that I’m in my first treatment dealing with this, and at the moment I’m well enough to do things on my couch, I knew I wanted to be on this site.

My focus is getting my conditions to improve. I definitely don’t have my head wrapped around longer-term plans yet…other than that I REALLY want to try to be medication-free in remission. Is that truly possible?

QUESTION: What are helpful things to say to my doctor about trying to be medication-free? I see her May 25.
– I already know she’s going to rely on medication from talking to her. I really like her as a doctor, she’s smart and experienced, and she has been great from a medical standpoint. She told me nutrition and mental health are resources where I should work with other doctors. But her advice was “stay away from raw vegetables” ….that’s it!? What about zero grains, starches and added sugars by using the SCD. Supplements, pro biotics – so many questions.

  • If the Prednisone and diet have helped me for the first week, is there any way to estimate when this bleeding will stop?
  • The urgent need to get in a bathroom is a nightmare. I took a medical leave from work – until June 2. Will I be able to function in an office?
  • How do I get back to seeing my friends outside of my apartment? I haven’t had anyone over yet either, but I’m warming up to the idea soon-ish
  • Is it normal to be having the tiniest poop ever seen? Is it bad if material is sitting in my damaged colon?

– Should I go to a nutritionist?

I’m worried about my personal life. I’m worried about becoming depressed over this. I’m worried about my parents, who are older and who are going through this with me emotionally. My mom has been in my apartment for 2 weeks taking care of me – I’m doing ok at home, but she goes out doing all the errands and food shopping. I do not know what I would’ve done without her.

Medications / Treatment Thinking:

Final notes and questions:

  • I’m on Prednisone 40 mg per day for 3 weeks, then a 2-3 week taper
  • Using the SCD, and within that, limiting to legal foods that are recommended in flares. Eggs, plain chicken, broth, cooked vegetables, cooked fruit/peanut butter smoothies, applesauce, etc.
  • Freeda vitamins – D3, calcium citrate complete, and a multi-vitamin with iron (I don’t eat red meat, never have)
  • Is calcium citrate okay in a flare up?
  • Should I take a pro biotic? What’s most popular with UC?
  • Does everyone get moon face with Prednisone – Is it a matter of time for me?!

I could probably go on forever here….Thank you for reading and I hope to start connecting with people soon.

Written by Rachel G

submitted in the colitis venting area




22 Responses to Rachel’s Story: Diagnosed on My Birthday and Just Want to Be “Myself” Again

  1. Rachel May 24, 2016 at 8:40 am #

    Thank you for posting my story! Thought I’d share a few positive updates and 2 new questions:

    – On the SCD for 2.5 weeks. I’ve recently introduced the yogurt
    – Also considering the Low FODMAP diet, I met with a great nutritionist today who is encouraging it. But going to keep SCD for the time being and continue healing

    Symptom changes:
    – My flare up is under control. No liquid blood since 5/13. I need the bathroom once per day in the morning. I know 40mg a day of Prednisone was a big factor in this, but I HAVE to believe the SCD and lack of stress has helped (I’m on a short term medical leave from work for a few more days).

    About to start my taper down from Prednisone – Looking for any feedback from people on their Pred timeline who have had success tapering down very slowly and their symptoms did not return?

    Do you eat one little jar of the yogurt per day? Is that too much?

    Thank you!

    • Catherine E
      catherine June 26, 2016 at 1:42 pm #

      Hi Rachel,

      Thanks for sharing. I hope that you’re continuing to feel well, and that your return to work went alright. You have a lot going on, I’ve been there.

      A few things that have helped me: reducing stress, eating lacto-fermented foods, finding a “safe zone” of foods where I can retreat when symptoms flare up, finding the time to make those foods, and getting enough sleep. Time. It really does take time to heal.

      It’s hard to over-emphasize the importance of reducing stress. This feels impossible when you’re sick and just trying to get through the day. But I don’t mean changing your life – Rather, changing the way that you look at life. I work, have two little kids and older parents and in-laws. Often, carving out an hour for happy-time is impossible. So, I split it into four 15 minute segments. I sit in my garden and wiggle my toes in the grass at 6 am, before the kids are up. I go for a walk after lunch at work and hope that my boss doesn’t notice. I listen to bossa nova while making dinner. Hardest of all, I force myself to turn out my lights at 10 pm.

      Lacto-fermented foods – essentially, these are naturally pickled foods. Start very, very slowly with these. My favorites are carrot and ginger – even my toddler loves these! They are packed with pro-biotics and make the nutrients in foods even more bio-available. Nourishing traditions is a good resource
      http://www.thekitchn.com/recipe-lactofermented-mixed-pickles-recipes-from-the-kitchn-194011
      http://thenourishingcook.com/follow-the-whey-to-ginger-carrot-land/

      Safe zone of foods – It has taken me so long to find out what foods are good and what aren’t. I was lucky to find a good nutritionist who is encouraging and positive and informed. I have to remind myself that no matter how badly I want a certain food that I haven’t reintroduced, it will always be there for me. I’ve certainly given in, after a few weeks of feeling well, and had a few bites of something verboten. I can resist obviously problematic foods (bread! ice cream!) and am generally tempted by something which falls into the borderlands, like chocolate covered strawberries. It has taken ages for me to realize that I’ll never NOT slip up. But I have to get back on track, because otherwise it just isn’t worth the pain.

      Making time to cook – This is tough. Without my slow cooker I would be lost! Often, I prep one night, put the food in the slow cooker in the morning before work and then have it for dinner. I always double recipes and stock my freezer. After a year of SCD, I finally bought a stand-up deep freezer – What a wonderful investment! It’s also critical to keep track of the contents. I am obsessive about menu planning, shopping and sticking to a cooking schedule. I do lots of cooking and prepping on the weekend, try to give myself a day off every week from cooking (and eat leftovers that night).

      Most of all, be kind to yourself. Try to do what you can, even the little things, that help you relax and feel happy. Celebrate the good days, you’ll be having even more of those soon!

      Best regards,
      Catherine

      • Rachel July 3, 2016 at 9:31 am #

        Hi Catherine,
        Thank you for your note – so many helpful thoughts, I really appreciate it. Work has been ok so far…I’ll take it! I do need to remind myself to slow down.

        You manage A TON in your life- It’s truly impressive, and I hope you’ll always carve out that time for yourself – with or without your boss noticing! You deserve it :) and need it.

        Do you have typical symptoms when you eat one of those borderland foods? Is it severe or mostly minor? I’m planning to stay away from gluten too, and grains. Do you eat rice or any other grains?

        I hope you are feeling well, and thank you again

    • Rachel September 15, 2016 at 6:32 am #

      Hi Rachel,
      First of all, I had to reply purely because we share the same name, but I also think our stories are quite similar. I was diagnosed after getting very poorly during a trip to Peru in May this year. It took a trip to A&E (/the ER), numerous trips to my GP and a trip to the London Hospital for Tropical Disease for everyone to confirm I was no longer carrying anything infectious or tropical and after a colonoscopy I was diagnosed with ‘diffuse moderately active chronic proctocolitis from transverse colon to rectum.’ Aka UC :)
      I have a friend with UC, who has also posted about FMT on this site, and she has been amazingly helpful.
      I was immediately put on prednisolone, also at 40mg and also tapering down by 5mg a week. I am now at the sixth and final week on one 5mg pill a day. My symptoms initially got a lot better, and then worse, and now I’m on an iron supplement as well, I feel like I have a little more energy and feel a little more like myself. I’m also taking mesalazine 1g four times a day and calcium tablets to go with the steroids. The thing I’m struggling with is the food – I have been trying to stick to eggs, chicken, white fish, sweet potato and things like courgetti or cauliflower rice to pretend I’m eating proper carbs, but I am a cereal and porridge monster and miss sweet food in the morning so badly! That’s my biggest struggle I think – well, that, and commuting 3.5 hours a day and working in an office with a manager based out of the US who doesn’t understand what’s wrong with me.
      I am trying to hard to do all my research but still feel quite overwhelmed. Everyone says I’m so positive and smiley all the time, but I think that putting on that brave face can be exhausting.
      It sounds like you’re doing amazingly though – I think I need to do some more research into this SCD diet. Do you find it’s working?
      Cutting caffeine and alcohol will stay a permanent fixture with me for a while, I think, but I don’t think I can live without milk in some form (lactose/dairy-free or otherwise) and like you, I find being social quite tricky. But as long as it’s not too spicy and I replace the carb option with ‘whatever well-cooked veg you have!’ it’s normally OK.
      Wishing you a fast recovery!
      Rachel

  2. Owen May 24, 2016 at 4:29 pm #

    Thanks for sharing your story.
    After my wife and I got hit by a stomach bug on our honeymoon, I was hospitalized, lost 35lbs, and was diagnosed with severe UC. I was in a really bad place.
    That was nearly 6 months ago. I started SCD, 40mg prednisone, refused Remacaid and humira, but started asacol. I successfully got off prednisone after 3 months, and have been fine since (although I know I still healing inside)
    I would not recommend taking iron supplements – tough on the stomach. Look at spinach for iron. I dice spinach and throw it in my eggs every morning.
    Highly recommend taking golden paste (turmeric) daily, SCD yogurt, and when you feel your system is ready, introduce fermented foods (sauerkraut).
    Get bone broth into your daily routine – heals the gut – it can be expensive, but I learned how to make it for a fraction of the cost – look at nom nom paleos site for making it in the pressure cooker.
    Also, simply boiling ginger for tea is amazing for the digestion.
    Social aspect is tough. But, at the end of the day, I only want to give my body things that are good, not bad – eat real food, that’s what we were built on.
    Finally, med free is entirely possible for some. I think it just depends on how we fuel out body, and go about our day to day living. I intend to be med free soon.
    Best of luck, and thanks again for sharing.

    • Rachel May 26, 2016 at 5:26 am #

      Owen, thank you for your feedback, I appreciate it a lot. We sound similar so far. It’s estimated I’ll be on Prednisone for 2+ months. And based on how I’m doing now, my doctor recommends a 5-ASA to start in the middle of the Pred taper (I’m waiting to hear which drug). I guess I’m coming around to just taking that. And my doctor said we can see how it’s going, and see if I’d be able to wean off it.

      Have you experimented with any non-SCD foods yet (such as low FODMAP foods that aren’t in the SCD) – Or you’re holding off on that and staying very strict? I’m fully in support of the strict rules, I’m just curious if you’ve tried anything.

      All of your advice looks really good (bone broth, etc.) – I’m on it!

      • Owen May 26, 2016 at 11:14 am #

        I found prednisone to be killer on my joints, but I believe the daily cup of bone broth, and (vital protein) collagen peptides really helped get by joints back in shape.

        As for your yogurt question, maybe start off with a quarter of a cup, and increase each week. At this point I usually have about a cup in the morning, and a cup after dinner.

        I haven’t strayed from SCD yet. I know I’m still healing inside, so I am going to stick with it for another couple of months for sure. If and when I do, I’ll probably move a little towards Paleo, and introduce sweet potato. But I don’t ever plan on going back to grains or gluten.

        SCD gets easier once you’re ready for leafy greens. I’m only now starting to get a little more salad into my diet, however, things like raw veggies I’m staying away from.
        Oh – another tip – after my symptoms cleared up, I started juicing. Red cabbage is supposed to be amazing for UC, and red beets reduce CRP (inflammatory marker). My typical morning juice: red cabbage, beet, carrot, ginger, celery, lemon (and sometimes mix in Golden Paste).

        • Rachel May 27, 2016 at 7:23 am #

          Thanks Owen – I really appreciate hearing your thoughts and I agree with doing all of it. You’re juicing with raw ingredients right? Also do you ever throw in turmeric powder directly, or you make the paste?
          I throw everything in a vitamix – but I’ve been cooking the berries first.

          I’ll probably stay on the diet for a long time as well – intimidated by restaurants and work dinners but I’ll figure it out.

          I feel the same way you do about grains/gluten – potentially never having them again or not for a VERY long time.
          Thank you again.

          • Owen May 27, 2016 at 8:38 am #

            Yup, juice all raw veggies. By juicing, you’re getting rid of all the fiber, so only left with the micronutrients. So no need to cook them beforehand.
            I only use golden paste, no raw powder, or suplplements. Reason being, the active anti-inflammatory ingredient in turmeric, curcumin, does not get absorbed by the body very well. So, because it’s fat absorbable, you need to eat it with fat, and pepper also aids for better digestion of the ingredient. So the paste is only three ingredients – turmeric powder, virgin coconut oil, and pepper. Check out http://www.turmericlife.com.au. I make a big batch, and freeze it in ice cubes. Lasts for months!
            Fun fact – turmeric also contains tumerone. Proven to repair damaged neurons in mice, thus making them smarter. There are now studies on the effects on Alzheimer’s patients. Turmeric is amazing :)

            Restaurants and work dinners can be difficult. Luckily I haven’t yet had work dinners, I’ll cross that bridge when I get there. As for going out with the family or wife, I just order plain fish or burger, and get more veggies in replacement of the standard grain side. On occasion I do get intimidated and anxious, but I try not let it get the best of me.

            Since being diagnosed, I’ve learned how bad grains are – they’re inflammatory in many people, we feed animals grains in order to fatten them up (studies linked to obesity in humans), they have a higher glycemic index than sugar, and cause a decline in dental health. No beuno.
            Hope I’m not rambling, and hope this helps you :)

        • Rachel May 28, 2016 at 1:53 pm #

          First, I hope you’ll be planning a follow-up trip sometime soon to continue your honeymoon. You guys certainly deserve it!, I’m sorry for what you’ve been going through and hope you’ll continue to feel better.

          No you are not rambling – everything is so helpful. Thank you. So far our situations still sound similar, and I really, really hope I’ll be doing as well as you are after I start reducing Prednisone late this week. I also go back to work Thurs..super!.. :)

          Sounds like we do a lot of similar research too – I like reading about everything (haven’t exactly processed the long-term situation I’m in, but it’ll come with time), buying quality animal products, etc

          I see with the golden paste articles now, and the absorption info, thanks. Love the ice cubes idea! I think this one will be trickier for me to eat frequently, but very willing to try.

          My new daily additions are starting l-glutamine, and apple cider vinegar. Mmm.. :-)

          Hope you’re feeling well and enjoying your weekend!

  3. Erika May 24, 2016 at 9:56 pm #

    Hey Rachel!
    Sorry to hear you’re going through this. Ulcerative colitis is common to see around your age. I am 25 years old I was diagnosed when I was 15. I have learned So much since then through personal experience. I promise you there is nothing to be depressed about. When someone hears they have a chronic disease for the first time it is frightening, but you will be okay! I think a huge problem is people around us aren’t knowledgable about the disease, so we can feel very alone. The best thing to do is embrace it and realize this is a much better diagnosis than a lot of other things. Prednisone ( I hate that drug due to side effects) but it always got me back in remission and as fast as the pain came, it also goes. After you feel better for awhile you can really get yourself going again. i firmly believe my flare ups happen due to stress because everytime I start a new job or school or have something big coming up I flare. So if your are stressing and having anxiety try to treat that first! I do believe there can be underlying factors to this disease. If that doesn’t work along with good diet, medication may hAve to be necessary for your health. You never want to go too long in a flare without help due to further damage/possible infections/surgery. This disease has a lot of trial and error to see what works best for you. Nobody is the same and every flair can be different. Best of luck!

    • Rachel May 26, 2016 at 5:39 am #

      Hi Erika,
      Thank you for your thoughtful note. You’ve been through a lot, and you sound so strong. This has shaped how you became an adult, and you deserve health and happiness. Thinking positive thoughts for you!

      I’ve frequently been saying “well this could be a lot worse”, I’m glad you say it too. Absolutely true.

      Have you ever been on Prednisone for a short period of time, and that was enough to get back to “normal”? Or is it always multi-week/months of it?

      Have you taken things from this 5-ASA drug family?

      You make really great points (preventing damage, etc.). Thank you so much for your thoughts, and I hope you are doing well!

  4. Andy May 24, 2016 at 11:30 pm #

    Low fodmap diet has now been studied and proven effective, not as a cure but to help alleviate symptoms of ibs/ibd. I discovered it a while after I noticed that eating certain veggies would give me gas and skitter immediately.

    I’m doing a lot better now after FMT, you should check it out. One year, not perfect guts but no flares and I eat what I want.

    • Rachel May 25, 2016 at 6:59 am #

      Andy – thank you, and that’s so great to hear how well you’re doing. Excited for you! You’re definitely right – seeing support for the low fodmap diet is very strong. Added that into my plan as of yesterday.

      So do you eat any grains like rice or any particular breads without issues?

      Thanks!

  5. Kayla June 3, 2016 at 5:24 pm #

    Hey Rachel!
    You sound like you’re on a good path as far as figuring out what diet will best aid you in your recovery – through trial and error, I think you’ll definitely be able to get to a more stable place! As for your concerns about how UC is going to effect your life outside the comfort of your home: I’ve had moderate to severe pancolitis since I was 14 (10 years now), and even in flares that have me running to the bathroom 10 times a day, I’ve still pushed through to travel for months at a time (burning through all my savings in the process, but that’s a whole other story…) and live a relatively normal life.

    I’ve had plenty of close calls (and some missed calls) during flares regarding the urgency factor, one of which occurred at a train station in France – but if and when those things happen, you really just need to find the humor, brush yourself off (literally and figuratively), and keep going with a smile on your face. Believe it or not, that part of that memory isn’t the first thing that comes to mind when I think of that portion of my trip – because your state of mind really does SO much for your quality of life with a chronic illness.

    Last thing, regarding working while in a flare: I was still able to work, even when doing really badly (though I had an office job – can’t speak for things in retail/customer service). The one thing I’d recommend is just speaking to your supervisor/boss – I went with the vague but effective “I have an intestinal condition that makes me feel extremely nauseous throughout the day, so I may need to abruptly get up and leave”.

    Good luck to you!

    • Rachel June 9, 2016 at 7:07 pm #

      Hi Kayla, thanks so much for your note, I really appreciate it. I love how you’ve traveled a lot! It’s one of my favorites (totally agree with your spending on it!) You’ve been through so much, I hope you are doing well?

      Your thoughts on being positive are great, and I’m focusing on that for sure..while hoping I’ll be okay after prednisone..!

      Do you follow a certain diet or avoid a list of things?

      Thank you again!

  6. Graham from England
    Graham June 5, 2016 at 8:41 am #

    Hi Rachel,

    Welcome to the club and congratulations for finding your way here. I agree with Erika on stress, we need to truly open our eyes to when and what then how to at least limit parts of it. We UC’ers are and likely always were a bit stressy with a little OCD. Be selfish with “me time”, you owe that to yourself now.

    Having UC has given me more empathy but occasionally feeling the need to lash out a bit (probably good for stress).

    Don’t be surprised or disheartened if your Doc is dismissive of diet and natural therapies, it’s only what they are taught. The overwhelming evidence is that it can and does help to varying degrees of success. It takes a long time, years even so don’t panic. One thing at a time as they say and even if something doesn’t work once it may need a couple of goes before it goes in the bin and on to something else.

    Natural anti inflammatories such as turmeric, ginger and Extra virgin olive oil are pretty safe options. Healthy while calming the flames inside. A healthy lifestyle including good consistent sleeping pattern.

    Probiotics always blocked me but work fantastic for some. Exercise is good but overdoing it is worse than no regime at all. Your off to a great start, take time (years) to go through the learning process as too much too soon is stressful.

    • Rachel June 9, 2016 at 7:17 pm #

      Hi Graham,
      Thank you for your message – I’ve seen your name and posts on this site, and it’s great to hear from you! How long have you had UC?

      I’ve been working on reducing stress…will be an ongoing focus. I’m starting Lialda on Monday, though I still want to try to go without medication at some point. But I’m just going to take that for now, if it doesn’t cause any problems out of the gate. Do you take anything?

      Appreciate your note to be patient when working on natural results like diet. I don’t mind using a limited food list, and I’m staying (very) hopeful that’s going to help!
      Thanks so much

      • Graham from England
        Graham Lee June 10, 2016 at 12:53 am #

        Hi Rachel,

        Sounds like a good plan.

        I’ve had various forms/diagnosis of inflamation of the large intestine (including proctitis-indeterminate colitis-UC) so use UC as more of a general reference. I’ve had it over 15 years and controlled with smoking for most of it, then EVOO for the last few years. I only used a few drugs and for very short periods.

        I thought recently that I may not have UC as a heavy worm infestation has been hiding in my small intestine all these years (found November). Was doing really well without cigarettes for 4 months and now slight symptoms so either the worms are back (likely) or I still have IBD.

  7. Robert M. June 9, 2016 at 1:44 pm #

    Hi Rachel. As you can read we are all here to give/share lots of info and mental support about our journey with UC. I was going to say , our journey with kicking ass on UC… But had to rethink it and hope to make you laugh at my comment, so there you have it. Anywho.. I agree with Grahams post and others as to time/meds/emotions/ and moving forward. I’m 51, my birthday was May 17. I have ulcerative colitis for 5yrs now and my on set was very bad, and to let you know you will get to that place where you want to be, remission. Everyone responds differently to any treatment they do. Hopefully and prayers to you that you have speedy success. I love Adams website and all that are here. I have and will try things that others have done, suggested and tried. Remember, stay positive and keep moving forward. To wrap up my rambling I want to share what I am currently doing/taking. {prescriptions: 2 500mg. Sulfasalazine 2xs day; 1 50mg. Mercaptopurine(a.k.a 6mp) 2xs a day} Other things, (mixed comments about but works for me) I drink 3 Yakult 2.7oz a day which contains 8billion exclusive probiotic strain Lactobacillus casei per bottle. And I chop up Ginger root into 3mm by 3mm pieces, 2 or 3 xs a day. Ginger Root is listed in another post by another UCer. I have tried other things like organic green cabbage ran through a juicer. 8oz 2xs a day which worked for a bit, but I decided for time constraints and results/relief, it was not for me. Anyway that’s my short story about me and my UC travels. Again, I feel for you and hope and pray for strength, remission and relief to you and all us UCers. Thanks for reading. :-)

    • Rachel June 9, 2016 at 7:22 pm #

      Hi Robert,
      Thank you! Your comment is so thoughtful, and I hope you are feeling well. Are you currently in remission?

      Hopefully you are feeling healthy/happy, but I was curious if you have any medication side effects, or if there’s nothing serious from that for you?

      Thank you again, I appreciate it a lot :-), and I’m glad to be using a site like this.

      • Robert M. June 9, 2016 at 9:14 pm #

        I believe I am in 95% remission, MEANING, I am not sure what normal/remission is to be for my system since dealing with the mental aspect for 5years, I feel like I can make it to places (dinner/friends/grocery shopping etc… in Short, limited travels) without panicking. But yes, no feeling of urgency and I feel if I get that feeling of having to go to the restroom I have time to make it. As far as side effects from current meds, No. However, like most I did have side effects while prescribed PREDNISONE. Achiness in muscles, night sweats, mood swings and headaches on and off. I told my GI specialist I need off that med. So that’s when he said okay, lets try combination approach, hence Sulfasalazine and Mercaptopurine. No side effects. For the past year I have been reading alot about natural approaches to help with UC and me feeling good and leveled out sorta speak, i try those options and will try to see if I can cut back on current doses of prescription meds. I know I should keep my doc in the loop BUT I will have to trust my body speaking to me. I will be careful and always have doc ready and available as he says, let him know if I have any change or flare ups with my UC. As my doctor visits just started last year to be once a year, vs once a month. Hope tho info helps. Thanks for your reply. Let me know if you have any questions or to just communicate. :-) P.S: I’m in California, Orange County.

Leave a Reply