Working and Traveling During a Flare

Victoria looking at the sunset

Meet Victoria:

I’m a 42 year old female and I’ve had UC for 16 years, was diagnosed at 26. Once I got my diagnosis and was treated with a rectal steroid for 2 weeks everything cleared up and didn’t have a flare up again for 11 years and now I’ve had 3 in the past 4 years.
I don’t have any allergies or intolerances that I am aware of but I have tried the specific carbohydrate diet while flaring and I believe it helps. It’s just hard to stick to because I love food. A bone broth diet for 3 days does wonders for me but this time I had to succumb and use steroids.

Some More about her:

I’m from New Zealand but I work 8 months of the year as a tour guide in Europe. My flares so far haven’t stopped me doing my job because they have luckily always occurred during the off season and this is the first time I have been flaring whilst working.

Her Current Symptoms: Small amount of bleeding and urgency

Victoria’s Colitis Story:

I’ve just finished a dose of steroids, 50mg and tapered down to nothing. I’m now on my 4 g pentasa sachets each day. The problem is that my flare has definitely improved but it has not gone away completely. I still see some blood when I go to the bathroom and I still have to walk very quickly to the toilet. I am certainly nervous when I don’t know where a bathroom is and I’m a tour guide. My biggest fear is pooping myself whilst checking a group into a hotel or whilst out on a walking tour.
Since completing my dose of steroids my symptoms are definitely much better than before but it’s not business as usual like when I’m not flaring. Has anyone experienced this. I am hoping it will eventually sort itself out but I’m also stressing it’s going to get worse again. How long have people just put up with minor symptoms because they are fairly mild and not full blown flaring?

Before I got diagnosed I was always a very regular person and often had to find a bathroom quickly because when you’ve got to go you’ve got to go but this is just a little bit too next level for me and a little bit too close for comfort. Also seeing the blood still is making me nervous. I have read cases of people bleeding for months or years even but in the past my bleeding has stopped after a dose of steroids. I am not sure why it has not completely gone away this time. I hate steroids. They make me feel great when I’m on them as it clears up my asthma and all my aches and pains and I get lots of energy. I also don’t have any problems sleeping but tapering down to the lower doses is a nightmare. I get super sweaty and really bad heartburn and always paranoid about getting a hairy moonface.
It would be awesome to hear from someone who has the same experience as me.

Currently taking:
Probiotics
Turmeric pills
Ginger shots every day
4 g pentasa granules


I am fairly fit and healthy and my job is very active.
I am not an athlete but I walk a lot.
I have always struggled to keep thin because i love food.
I believe my body responds well to the specific carbohydrate diet whilst flaring and whilst not flaring I feel amazing when following a keto diet which is high in protein and very low in carbs. It is hard to stick to that diet whilst traveling as each country I guide in has different foods and once my flare goes away all the foods I love start to creep back into my diet.
I stay away from preservatives and pre-prepared food as much as possible.

written by Victoria M

submitted in the colitis venting area





Travel

38 Responses to Working and Traveling During a Flare

  1. Vishwas Jain July 16, 2019 at 11:28 pm #

    Have u tried gutrex d ( normaxin ) tablet

    It will help u in thinking less about washroom

    Also u can use homeopathic medicine
    Hydrastis mother tincture 10 drops in 10 ml water three times a day to stop blood
    It will take around 10 -15 days
    There are no side effects of homeopathic medicine

  2. Shannon M
    Shannon July 16, 2019 at 11:30 pm #

    Next time you have a chance to see a Dr, see if you can start using Sulfasalazine. My Stanford Dr started me on high steroids, small does of Sulfasalazine. Every week, went lower in steroids, higher in Sulfasalazine until I was just taking 6 500mg tablets of Sulfasalazine, no steroids. I have been in remission for over 6 years. No flairs. I also take 1 Folic Acid tablet along with the Sulfasalazine. I have also gone GF, drink no coffee or soft drinks. Drink beef bone broth every morning. I really hope this will work for you. There is nothing worse. Sending you all my positive thoughts.

    • Chris July 17, 2019 at 5:00 am #

      I haven’t tried some of the herbal remedies, but SCD is the only program I trust 100%. I am currently in the second week of a nasty flare, and after 4-5 on SCD my symptoms are notably better. I see my doctor Friday and expect he will put me on prednisone or possibly methotrexate, which helped once before and to me is a safer option than prednisone.

      Travel is tough with UC, so I wish you luck!

  3. Sylvie July 16, 2019 at 11:48 pm #

    I’d try upping the Pentasa. You can double that dose to 8g that should help. My consultant recommended doing this for short bursts at beginning or end of flare. Works well for me. All the best.

  4. Bob July 17, 2019 at 12:29 am #

    Hi Victoria,

    Here are a few ideas from a fellow UC’er:

    1. Pentasa is a very weak drug. You might want to consider something different. Talk to your doctor. There are several brands of 5ASA prescription drugs that are a small step up from Pentasa and might do a better job keeping your flares at bay. I’ve taken Salofalk and Mezavant with very good success and zero side effects.
    2. LDN (Low Dose Naltrexone) has worked wonders for me. It pulled me out of a nasty 10-month flare.
    3. I tend to eat less when I’m flaring. That reduces the symptoms.
    4. CBD oil helps me sleep which can be a good thing when you’re flaring.
    5. Staying strict with SCD will certainly help. When I travel I typically eat at higher end restaurants and order things like steak or baked salmon with steamed veggies. I ask for the veggies to be “mushy”. The higher end restaurants can usually accommodate. But the chain restaurants usually don’t have the capacity for this.

    Best of luck to you.

    -Bob
    UC 11 years
    SCD 10 years

  5. lynn July 17, 2019 at 1:43 am #

    i would highly recommend the amino acid glutamine taken in sufficient amounts during a flare (for me that’s between 5-10 g a day). also staying strictly away from sugar and sweet things, just eating the savoury things, as indulging sends me straight back into trouble.

  6. Dallas Killough July 17, 2019 at 3:18 am #

    Hello Victoria. When I was first diagnosed in 2011, I had symptoms much like yours. Unfortunately, I stayed in a low grade flare for a year and a half. They started me on Lialda and rectal enemas. They helped, but the trouble never went away completely. Also, I had to deal with terrible side effects from the drugs. Eventually, I was switched to Apriso, and I started taking Vitamin D/Calcium supplements. The doctor also advised me to wear a low dose nicotine patch. I haven’t experienced a real flare since. I do have to pay attention to refined sugar, as that can shake things up if I’m not careful. UC is different for everyone, but hang in there. It’s all about finding what works. These are the things that have helped me. The good news is you’re not alone.

    • Raymond Roberts July 17, 2019 at 10:13 am #

      Hi, I have had very aggressive UC. I went from steroids, to Humair. I’m now on Entyvio which is a infusion e ery 8 weeks. It has kept my UC at bay for 2 years now. My doctor has me on other meds., Mesalamine, Amlodipine Besylate, Allopurinol.
      I have lived a normal life for last 2 years.

      • Gerald Garst August 29, 2019 at 11:46 pm #

        Been on Humira 18 months. I also take Donatol and anti acid tablets. But my concern is that my doctor does not keep blood work done. Prior doctor had it done every two weeks. Was getting my meds from Canadian pharmacy. I am mostly in remission but have to keep as stress free as possible.

  7. Deidre July 17, 2019 at 3:56 am #

    I am so sorry you have UC. I was diagnosed two and a half years ago, and this disease certainly takes a toll on one’s psyche. My suggestions are:

    1. Take a couple of spoons of Manuka honey. It jas helped me a lot.
    2. My internist found a probiotic called VSL#3. It has worked wonders for me (along with my mesalamine). All probiotics are not equal, and this particular variety has been shown to have clinical effoca.
    3. Go hard-core SCD. I have done it while traveling internationally, and it is doable. When traveling, I simplify it a lot: meats (no sauces), fish, shellfish, and veggies (no potatoes or even rice). Dessert could be fruits you tolerate well, drizzled with honey (I have been lucky with fruit so far, like berries and pineapple). When in Italy, I ask for a green veggie like broccolini or wilted spinach as a substitute for pasta. You may get a bit of sugar in your sauce (I do red sauce or pesto but never cream alfredo), but hopefully it won’t be enough to cause trouble. That may sound like a drag, but I believe it helps. I kove food, but not as much as being flare-free.

    Good luck. I would love to hear how you are doing.

    Dee in SC

  8. Eddy S
    Eddy July 17, 2019 at 4:03 am #

    Hi,

    I’ve said this before, but you can certainly reduce the bowl movements with Metamucil ot some other type of psyllium husk out there in the market. It might not heal it completely, but It will eventually take you out of this flare pretty quickly and you can take it up to three times a day until you feel better.

  9. Patricio Andrade July 17, 2019 at 4:22 am #

    The only advice I can give you is the one that worked for me. I bled daily or 4 years with nothing halting it… Absolutely nothing. I started the carnivore diet, and within 3 weeks all symptoms were gone. After 3 months into it, I stopped all meds. 8 months into it, and I feel better than ever. The plants/fruits were not letting my colon heal despite the diets, supplements and meds. And yes, I do have daily (normal) bowel movements. Do your research before you start, because there is an adaptation period. There’s a lot of information online. Hope this helps.

  10. pAtRi July 17, 2019 at 4:43 am #

    Dear Victoria,

    I have recently been through something similar.
    Most of the time I have a very mild proctitis. But it’s resistent and the inflammation hasn’t gone completeley away since diagnosis 2 and a half years ago. My treatment consists on Sulfasalazine supositories and 2g oral.
    Last spring I had a flare up and had to take prednisone for a while. As you described, I was feeling awesome (better than for the previous 2 years) and no blood for the first time. But as soon I started tappering the symptoms came back gradually and, after complete prednisone withdrawal there was more blood than (previous) usual. Also, I had to go more frequently to the toilet (no urgency) and the depositions were soft.
    This was 3 months ago. My GI suggested to go on to azathioprine but I was too scared about it and decided to wait a while to see if the symptoms got worse. Since then, I’ve continued with my usual Sulfasalazine treatment and I am sunbathing for at least 10minutes a day. Slowly, I have gone back to my previous situation, which is not perfect but with which I can perfectly live happily.
    So, with this maybe too long explanation, I would like to give you some encouragement; I know this disease of ours is random but I think that what you are experiencing is just a bit of backlash from the prednisone and that in a few weeks it will all be back to normal. Also, I recommend rectal treatment, it is really effective (well proven in medical literature) and may help you go back to remission. I does not need to be rectal steroids, it’s not proven that these work better than rectal Sulfasalazine and may have a bit more negative effects.
    Hope you can soon feel safe again about the colitis. I send you a big hug and wish you all the best!

  11. Elinor Thompson July 17, 2019 at 4:59 am #

    I have to agree with everything written above specifically:
    1. Sulphasalazine, the original drug for UC for over 80 years has minimal if any side effects. I take a large dose of 8 500mg pills a day for many years with no side effects. Over the counter : folic acid (1,000mg daily) and 50,000 units of Vitamin D once a week are recommended by gastroenterologists for people with UC. I take both along with Turmeric twice a day as well as omega 3 reduce inflammation.
    2. SCD diet, strict and then modify as your symptoms improve. I’ve been on it for 9 years, and came out of a huge flare after 3 months and have improved to the point where I hardly feel I have UC. If you must drink: Wine ( I think it’s the sulfites in them ) bothers me but I can drink whisky and vodka which are actually ok on SCD. I find that eating lots of protein and as little grains and sugar are the key.
    3. Cortisone rectal enemas will stop the bleeding and I’ve never had any side effects from them like the moon face you get from prednisone! If you see red blood, it’s usually at the end if the colon so the cortisone enemas treat that.
    4. A very good daily probiotic VSL, like recommended by others above ( rather expensive and needs refrigeration) or Florastor which I get on line.
    5. Active lifestyle which it sounds like you’re already doing. I even started training for triathlons while in a big flare and it helped but I walk at least 10,000 steps a day and feel great.
    6. Drink a lot of water to keep hydrated.
    7. Get enough sleep. Know your body and don’t overdo.
    6. Acupuncture regularly. I tried it more intensively at first then as I got better, I still get it regularly.

    Hope this helps. I’ve had UC 40 years!! Ugh. I have moderate and sometimes severe UC at times and been hospitalized. I’ve taken biologics and failed both Remacaide and Entyvio but actually am not bleeding and live a normal active life following the protocol I’ve described above. For me, following this lifestyle change has worked for me. Hope it dies fir you. Good luck.

  12. Ruthe
    Ruthe McDonough July 17, 2019 at 5:02 am #

    I’m in the same traveling for work situation. I’ve found that intermittent fasting really helps me. I eat breakfast at 0600 and lunch at 12:30 (whatever I want, I just try to make it healthy) and then I’m done for the day. My GI told me that she’s seen some success with her patients trying IF, which is why I started. I also lost 11 pounds without trying. The doc said there’s anecdotal evidence that “giving your gut a break from the digestive process “ can really be helpful. It’s helped me stay in remission for over a year and I’ve also been off all my meds since October.
    I also try to eat a good probiotic yogurt when I’m traveling and can’t have my fermented.
    I think it really helps
    Good luck!

  13. Mike Ciluffo July 17, 2019 at 5:49 am #

    Talk to your doctor about Entocort enema.
    Contains mesalamine, which is the active component in Pentasa enema + budesonide, a topically active steroid. I’ve been using it for years. I also take Lialda , extended release mesalamine, by mouth with a generic Florastor, a probiotic found in Italian studies to be useful in combination with Lailda.

    • VictoriaM
      Victoria July 19, 2019 at 12:19 am #

      Hello everybody thank you for all your suggestions. I will certainly be trying some of these ideas. Obviously I have tried a lot of different things myself and done a lot of research. I wanted to point out again that these symptoms are minor compared to what I have had before.
      I am only going to the bathroom once or twice a day and not at all during the night. It’s just that when I have to go I have to hurry and I mean hurry. The blood is also intermittent so it’s like the end of a flare, I’ve finished my steroids and it just won’t quite budge and let me be back to normal. I’m just nervous it will get worse again rather than get better.
      Anyway will try some of your suggestions and let you know how I go. I think the best thing for me is just to hear from this wildly diverse group of people from all over the world and to know that there are other people out there that understand what it’s like to live with this bitch of a disease so a massive thank you to Adam for setting it up. I’ve followed the site for a few years now but never posted until now and it’s definitely made me feel better even if it’s only in the head and not in the bowel. Thanks everyone

  14. Chet July 17, 2019 at 6:11 am #

    Try Entyvio, work d for me.

  15. Ruta July 17, 2019 at 6:44 am #

    I feel for you. When it has as got that bad and you are living with the stress of worrying about having an accident, probably having to get up several times a night, with some bleeding – it may time time to consider an ileostomy. I am so glad that I had mine eight years ago. No more medication, no more thinking about where the nearest toilet is!

  16. Daniela July 17, 2019 at 6:59 am #

    Your symptoms sound so much like mine when in a flare – the only dose of prednisone that stops the bleeding for me is 60mg. Stay on it until bleeding stops and then taper. I know it’s not ideal but if you are traveling you really want to take care of your symptoms. life is too short to be in misery for so long, the diet is great if you can do it but sounds like it’s too hard while you’re away. Good luck!

  17. Veronica D
    Veronica July 17, 2019 at 7:15 am #

    Thank you for sharing your story Victoria and thank you Adam for starting this resource as well as to everyone who contributes. I don’t visit the site often but doing so really takes the terror out of a flare for me. Knowing that I am not alone and that there are solutions is such a great comfort.
    Remission for 5 years off all prescription meds (once again thought I was cured ha) then a seemingly innocent viral diarrheal illness set off a flare with bright red blood. I’ve never experienced the bleeding in the past and this literally scared the shit out of me . I was certain I had stage 4 rectal CA and started preparing my eulogy. Calmer now. Back on the Llialda and rowasa for a week and symptoms are improved but not entirely gone. Looking forward to another colonoscopy hopefully followed by a very long remission.

  18. Paul July 17, 2019 at 7:26 am #

    I can relate to this story. However, I got UC late in life in my late 40’s. I was also traveling a lot for work and liked to eat as well. I tried for a couple of years to manage my UC with non biologics and using conventional UC medicines like Lialda and Uceris and others and my doctors were always trying to try other non biologics. However, I still got occasional flares and the drugs were not managing the symptoms effectively. So I changed doctors, got another colonoscopy, explained to him my job requirements and told him how I wanted to live my life. I was then put on Humira. I know this is not a popular answer for you. I wish I was not on it at all. But it does manage my UC symptoms better than the alternative drugs I was taken and I feel I got my life back, sort of. I believe the key to success with Humira is getting your blood work regularly and testing for signs that Humira may or may not cause. That is when people get in trouble with Humira. They take it but don’t test to see if its causing issues. And if it does cause ill effects your doctor can tell you what to take to help. For example I was not getting enough vitamin D after taking humira after test results. So I started taking vitamin D regularly. Again, I wish I was not on Humira and if you chose not too I totally understand you taking that route. But I can honestly say since I have been on it for the last 3 years I have had no blood, and no flares. However, its not bullet proof and I still have urgency at times, and even though I take Humira I still feel I have to manage things, which is frustrating but that is course of action I have chosen. I like you guys that read this only hope they can find a cure for UC one day.

  19. Martin July 17, 2019 at 7:36 am #

    I’ve been with a flare over 3 years. I’m obviously taking mezalazine, and my doctor suggested I take some corticoids so I did.
    Then injections in the hospital with immunosuppressant and that did not help me either.
    What did help me after a left those drugs was quitting ALL products containing MILK (from cow) there goes butter, cream cheese, and so on. After less than a month I was in remission! Hope it works for you too.

  20. Skip Bushee July 17, 2019 at 8:20 am #

    Don’t take VSL. It is loaded with cornstarch which is a no-no on the SCD diet. I took it for a couple of years while on the SCD diet and still had flares. Since I stopped I haven’t had a flare (4 years now). The best probiotic is plain yogurt, like Fage. I make my own which is easy to do but order plain yogurt when I travel. I have also found Vedolizumab (Entyvio) works for me.

  21. Vincent D July 17, 2019 at 8:21 am #

    Has your doctor had you do a stool test lately?
    Specifically for C-Diff?

    Symptoms for C-Diff and a Colatis flair are very similar.

    I went over 30 days thinking we were managing a flair up only to find that I had C-Diff.

    With proper meds, the C-Diff was gone in less than 2 weeks.

    I think the doctor often misses this as symptoms of a flair up and C-Diff are very similar.

  22. Bob July 17, 2019 at 8:22 am #

    A few follow-up comments here:

    1. VSL#3 – I’m surprise to see a couple of people recommend this. It put me into a significant flare when I tried it. I have read similar stories from quite a few people on list serves who have flared because of VSL#3. Be vary cautious with this product. I wouldn’t touch it with a 10′ pole! I get all of my probiotics from SCD-legal sources.
    2. Manuka honey – This did nothing for me. It is very expensive and I think the health claims are over exaggerated. Besides, you should be reducing or eliminating sugars during a flare, not consuming more. A sugar-free version of SCD has helped me get out of flares. That means eliminating things like all fruits, all juices, onions, carrots and other high-sugar foods.
    3. Acupuncture – YES!
    4. L-glutamine – YES!
    5. Have you tried the probiotic Sachromyces buolardii? It worked wonders for me. It helps firm things up. Just don’t take it for more than a couple of months or it could over-populate your gut. But in brief doses it can really help.

  23. Cara July 17, 2019 at 8:40 am #

    Hi Victoria,
    My daughter has UC, and had similar symptoms to you.
    All of the suggestions listed above make sense, but as every UC’er knows what works for one person doesn’t necessarily mean it will work for them.
    One thing I want to mention is stress. I think stress makes the disease state worse.
    Perhaps you can unwind, relax or mediate to reduce the stress.
    The other suggestion is to take a Pepcid (antiacid) one hour before breakfast and dinner to calm down the reflux (heartburn) you are experiencing while on steroids.
    Check in with your doctor first.
    Hang in there and I wish you only the best !

  24. Richard Porterfield July 17, 2019 at 8:44 am #

    UC is difficult to live with. After many years of near continuous Flair’s and Prednisone dependency I started on Mercaptopurine (6MP) about 7 years ago. A tablet and a half every morning along with a very high fiber diet and yogurt daily and I have been in complete and total remission since about month after starting the 6MP. It has allowed me to travel the world, trek in Nepal, do week long bicycle events and not have to always be within 50 feet of a toilet. The possible downsides have been a few serious infections but that is hard to avoid with any therapy that controls our overactive immune systems. I wish you similar success..

  25. Renee July 17, 2019 at 9:18 am #

    Dear UC sister Victoria,
    I have been diagnosed since 2015. I’m on Lialda and phillips colon health probiotic daily, as well as uceris pill and foam during flares.
    Obviously everyone is different, but here are things that help me:
    When in a flare (or loose stool/blood but not full blown flare) I try to eat a low residue diet. (I was told to do this by a hospital nutritionist). You can google low residue diet but for me it is low fiber – i eat all the white bad things they tell you not to eat, ie white bread, especially sourdough, white flour tortillas, saltines, white pasta. Only cooked veggies, no salads, no hard to digest stuff like nuts, popcorn. I notice when I eat the white stuff, my stools are firmer the next day. I read somewhere that eating low fiber during a flare let’s the colon rest a little by not having to work so hard and not having “scrapey” foods. (I don’t eat this way during remission because it’s not good for blood sugar issues). I go low fat and I have cut out red meat, hot dogs, and pretty much have lowered my consumption of other meats like chicken. I notice going more plant based has helped with inflammation ( my last colonoscopy after going more plant based, less meat and dairy) was better, but who knows?). If I’m in a flare, and I have to be at work, I try to eat less, maybe just a few saltines to get by, because I’d rather feel hungry than have an accident at work which has happened in the past (oh the horror :). Then I eat a meal when I get home and near a toilet I realize that’s not feasible for everyone. Another thing that I have noticed, which surprised me because I was obsessed with Greek yogurt for the probiotics, is that when I went off of the Greek yogurt (when I tried plant based) things seemed better. Lots of water and green tea are always a good idea.
    Again, these are things that I have noticed helped me, but may not be helpful to others since everyone is so different. I wish you the best, Victoria!
    Sincerely
    Renee in California

  26. Joanie July 17, 2019 at 9:26 am #

    Hello Victoria,
    You got several good tips, so I’ll not give you more, but I want to say thank you for sharing your story. It really looks like mine. I had two pregnancies that seem to have exacerbated my symptoms. They never disappear completely. I take, like you, Pentasa, and also suppositories. I’m going to try Cortiment, I have it but I haven’t started yet. Good luck with your symptoms, thank you for sharing your story, I feel less alone!

  27. Coralie Eichler July 17, 2019 at 2:02 pm #

    Wow, Victoria. People have left some really good suggestions for you to try. So good to see so many turning to natural therapies as well as taking prescribed meds that work for them. I have had an ileostomy and I wouldn’t recommend it unless you are at death’s door. I hate the bag with a vengeance.
    You have the job of my dreams. Lucky you. I was on the SCD for four years and was completely symptom free until the local hospital insisted I take Pentasa with the threat that I would get colorectal cancer. I now know that I had no more risk than anyone else because my colon was in great shape. Pentasa can mimic a colitis flare but like none other you have ever experienced. It changed my bowel motions overnight and I never recovered my health so had emergency surgery to remove my colon, to save my life.
    The SCD worked like magic for me before this happened. You could ask for spirallised zucchini to replace pasta and take your own homemade crackers and almond bread with you when eating out. I always found cafes and restaurants very accommodating if I was out with friends. They didn’t mind me eating my own food because of my dietary needs and they even heated my own homemade pizza for me. I know it’s not much fun especially when you love food as I do, but isn’t it worth the sacrifice just to have the safe feeling that you are not going to have huge stinky accidents in front of a tour group?
    Once I was at a big celebration meal out and I asked for a piece of fresh fish just fried in butter. It came back crumbed. So I sent it back and stressed that I couldn’t have anything on the fish, just on its own, please. If you eat at the same places as you travel, they will get to know you and will become your best friends, especially if you bring tour groups to their business. I wish you all the best, Victoria. You have a wonderful job. Do what you must to keep your sanity. Slippery Elm is very good and the mediterranean diet is also said to be very beneficial. I will be interested to hear how you go. Me and my four sisters are planning a trip next year for my 60th. Maybe our paths will cross if we book a tour. Would be good to meet you.
    Kind regards
    Coralie

  28. Rob July 17, 2019 at 2:51 pm #

    Start at thepaleomom.com. I’ve had Crohn’s for twenty years. The AIP protocol will change your life if your willing to commit. I also take Thrive probiotic once a day first thing in the morning on an empty stomach and wait to eat for a least one hour. Intermittent fasting has seemed to help me as well.

  29. Steven S
    Dr Steven Sommer July 18, 2019 at 12:46 am #

    Hi Victoria,

    My name is Steven Sommer,

    I posted my story a couple of years ago. What I can add to the advice already given here for your consideration Mastic gum 500mg capsules – available on iherb.com – under the supervision of your specialist (see my post). I continue to hear of positive responses to this.
    For example, a good friend of my wife and I who also has predominantly rectal UC that had been diagnosed 17 years ago which was flaring despite sulphasalazine treatment, found that adding just one mastic gum capsule (500mg) each morning to just 1 sulphasalazine capsule (half of the dose she had been taking) put her colitis into complete remission within 3 weeks.

    Still we are all unique, so my suggestion is use your intuition to guide your choices,

    Good luck with it.
    Steven

  30. Deb Johnson July 18, 2019 at 3:53 pm #

    Already lots of advice. I travel and this last trip wore an adult diaper to make me feel confident that I will not have an accident. (I had a colonoscopy 2 weeks before I left-not a good idea to travel soon after.) I read there is one company that will work with you and send some various diapers to you that you can try out for your bowel or bladder issues to see which one you like best. You don’t buy them in the store but order them online. I’m sorry I don’t know the name of the company.
    I also don’t eat or drink in the morning if I’m not near a bathroom and flaring. (On the plane I skip that early breakfast they give you just before you land.) It can cause urgency for me. Afternoons are usually fine. I hate that but would hate more if I flared. I also take a Lomotil or 2 that works fairly quickly to help me manage my symptoms. I take Mesalamine and my doctor gave me a prescription for Prednisone that I have available if I should flare in the middle of traveling.There is a bathroom app but I don’t know if bathrooms in Europe are on it? I drink no caffeine during a flare because I definitely notice a difference if I do. I do follow scd but I’m not as strict now that my symptoms have lessened over time. I do take turmeric and use the turmeric essential oil. Started making water kefir recently and make ace yogurt off and on. I also travel with Rx Bars, Larabars (both scd) and nitrite-free jerky off Amazon.
    Happy traveling!:)

  31. Debbie July 18, 2019 at 7:39 pm #

    I know someone suggested Metamucil, I found that Fibercon was life altering for me. The other made me sick to my stomach. I also support the SCD you said it has helped so was varying stray? Especially if you are working and worried about accidents. I am 56 and was diagnosed at 24 so I have absolutely seen my share of wow Lowe’s! Best of luck to you!

  32. Victoria August 10, 2019 at 12:28 pm #

    Hi everyone. I just wanted to update you all and thank you for your awesome suggestions.
    I’ve tried them all, well almost. Anyway I have been through a period of despair as I thought I would have to leave my trip as it seemed to be getting worse but then I got to Russia. In St Petersburg you can get many medications without prescription so I went in and asked for Salofalk. She gave me enemas with 4 grams / 60 ML liquid. One week of taking one up the backside every night and the bleeding had stopped. I’m only going to the bathroom once or twice a day and even though it’s still quite urgent my body is giving me more warning and more time to get to the porcelain throne.
    I’m now in Turkey which is another good one for over the counter and they don’t have Salofalk here but they do have Asacol 4 grams /100ml and my specialist in NZ says it’s important to keep taking them even if the flare has gone.
    Fingers crossed but I feel like finally after 3 months of bleeding and near misses and almost pooping on my own handbag I am healed.
    Thanks for the support.

  33. Fitsum
    fitsum August 13, 2019 at 6:01 am #

    Please check for hemorrhoids, i have similar symptoms like yours and what i have found, with my doctor, is that hemorrhoids are also involved.

  34. Mike August 27, 2019 at 4:36 pm #

    My Grandson is now 13 years old and was diagnosed with ulcerative colitis at the age of 5. We have tried everything imaginable to help him. He is currently giving himself Humira injections once weekly. He sees the pediatric gastro. at the best hospital here, but does not seem to help him all that much. He has finally gained some weight, but struggles with the diarrhea issue the most. No more bloody stools, but constant running to the bathroom. He is coming back off prednisone now, and the diarrhea is getting worse. School just began here, and this was such a bad time to come off the prednisone, because he sometimes can’t make it to the bathroom at school. There have been times when he ran to the bathroom, and all the stalls were occupied. He has an emergency kit at school for those times when he can’t make it. So embarrassing for a young person. Just wish the diarrhea could stop, and he could hold it longer, till he can get to the bathroom. We’ve tried natural treatments, LDN, and now he’s back on traditional medical intervention, but nothing seems to stop the diarrhea. I hope one day something works for him.

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