Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Hope for Living and Overcoming Ulcerative Colitis

Introduction:

I have been an registered nurse(RN) for 25 years and the mother of four children, married for 24 years.

My brother who had Crohn’s disease starting as a teenager, died at age 43 with colon cancer in 1997. I had two colonoscopies at the advice of my doctor that were negative and then was diagnosed with ulcerative colitis in 2008 after a colonoscopy.

I have been on many different medication regimens that have given fair relief of symptoms at times. Over the past two years my symptoms have been virtually constant and difficult to manage and work through, and to do any activities with my kids and family, or plan activities and outings with friends. I’ve also had upper GI series, MRI’s, CAT Scans, blood tests and multiple MD visits. Because of my family history of cancer and continuing difficult to manage symptoms, I’ll be having colonoscopies about every three years.

Some more about me:

I love to write, exercise, and bake. I love all kinds of music. I enjoy entertaining, gardening, history and reenactments. I love to be at the ocean. I also like to volunteer at local shelters and have been involved in helping distribute food, clothing and other needs to people struggling with poverty and crisis pregnancies. I enjoy teaching health care sciences and other topics.

Symptoms:

Over the past two years, eating anything has become painful so I have limited my diet to primarily rice and yogurt, although lately even that has become painful. Symptoms that affect me every day are that I no longer have a desire to cook or eat (it hurts), abdominal cramping which is unpredictable during the day and night, rectal pain that is almost constant with bleeding, frequent stools and diarrhea, anal fissures three times in the past two years, nausea, fatigue and bone and joint pain.

Hope for Living and Overcoming Ulcerative Colitis

UC has changed my life in many ways.

My father had UC and was one of the first people in this area in the early 1970’s to have a colostomy. No one had ever heard of it, and I remember him being interviewed in the local paper and becoming the president of the Ostomy Association in the area. Growing up with a father with an ostomy was scary and different for me. Because it was one of the first ostomy surgeries performed here, he almost died immediately after surgery and that is a day I never forgot – the day my mother got the phone call to come back to the hospital, that my father did not look like he was going to make it. She had just come home from staying the night with him postop. That changed my outlook on life greatly. I was 8 years old at the time. However, his quality of life when he recovered from surgery was excellent and he became able to do and participate in anything and everything after that.

For myself, UC has developed and gradually worsened over the years.  I always had “bowel problems” growing up, I just didn’t know what it was. It became more and more limiting, or at least annoying, into my twenties. After my brother died and I was finally diagnosed the progression over the past four years has been steady. At this point, the last two years have been very challenging physically and emotionally, trying to enjoy things with my family around the logistics of this disease, and the lack of my employer’s understanding as well as my own embarrassment/inability to communicate the often disabling effects has been tough.

I have been on asacol at first and thought it was a “horse pill” but also developed a genuinely greater understanding of what some of the patients I see with chronic conditions actually go through every day. From asacol to mesalamine to lialda, prednisone and many other drugs and attempts at limiting my diet to help control symptoms. My GI MD has been extremely thorough and caring, sensitive to my needs and willing to spend time talking things out and trying alternatives. My husband of 24 years has been very supportive, listening and seeing me in bed, lying down from pain and exhaustion after bloody bouts or pain. He has never complained about my limitations over the past two years especially, and has tried to help as much as he can. My kids are used to seeing me lying down over the past two years which has been difficult and discouraging for me, especially when it limits time together or time doing anything remotely fun or active.

I have been most concerned as of late with getting through the day, and also with the potential for ostomy or surgery although my doctor has not brought that forward at this time. I know if the progression doesn’t stop, it will eventually be one of the choices on the table.

Medications:

I started with asacol, at the time it seemed like such an adjustment! I wasn’t even really taking tylenol regularly! That progressed to canasa, canasa suppositories, nexium, prednisone, flagyl and other antibiotics. I have tried probiotics but they haven’t seemed to help, or at least the types I tried haven’t or have been too expensive to continue on. Prednisone seemed like a wonder drug and worked for a short time, but ultimately caused further GI bleeding. I then was on a regimine of canasa suppositories a.m. and p.m., nexium, hydrocortisone suppositories in the p.m., hydrocortisone enemas when flare ups have been excessive, but again increased bleeding so I had to stop them.

I have been on amitryptilline to slow GI motility and treat the depression that comes with UC for some of us, but had side effects of vision blurring, ringing in my ears, feeling distant and no real change in either the depression or the GI symptoms so that was stopped. I have learned that 90% of serotonin receptors are in the gut, NOT in the brain. So it makes sense that when the mucosal lining of the GI tract is injured/ulcerated, people can develop a physiologic depression, hence the amitryptilline works for many people. I was taking multivitamins and also calcium because I developed severe osteoporosis probably because of lack of absorption. I was offered IV drug treatment at that time but opted out because of the potential side effects, and the hope I have that possibly diet changes and maybe some baseline medicines will help. I would like to be medicine free but I don’t know if that’s possible. Current drug regimine: canasa suppositories p.m. with canasa enema for evenings that are worse, nexium, bentyl up to three times a day for GI motility issues, lialda 1.2 GM two tabs in the a.m. and 2 in the p.m., Imodium as needed, TUMS.

written by “Hopeful RN”

submitted in the colitis venting area




46 Responses to Hope for Living and Overcoming Ulcerative Colitis

  1. Colleen July 2, 2013 at 8:19 am #

    Hey
    We have all been where you are so feel your pain. In terms of the probiotics ask your pharmacy for a probiotic that doesn’t break down in your stomach but stays intact until it gets to your large intestine. I take ProbiFlora but I am in South Africa so you probably don’t have the same medications on your side of the world. Don’t be so quick to dismiss the IV treatments. I also was one of those cases where none of the other medications worked so eventually my Dr motivated with my medical aid for me to get the Revellex / Infliximab (I think it is called Remicade in other parts of the world). I have been on it for 2 years now and it gave me my life back. Things will never be 100% perfect but then they never are for anyone even the “healthy” :) Just hang in there though. Everyone responds to the meds with this illness differently so keep trying until you find something that works. Good luck! :)

  2. Joan H
    Hope July 2, 2013 at 2:38 pm #

    Thank you for encouraging me on the probiotics and thinking about the IV treatment Colleen. I appreciate the support and advice. You’re right it is Remicade over here, and I’ve been reluctant to try anything that might have so many possible side effects. But I’ll keep what you said in mind. I’m glad it’s worked for you, and I hope you continue to do very well. Thanks again!

  3. bev July 2, 2013 at 3:38 pm #

    I’m on the probiotic bandwagon too…I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. I am in remission, for the first time in 14 years (for 14 months now!) on just that probiotic, and fermented-glutamine powder. I was on meds for 14 years straight and I am on NO meds any more…for the past 14 months.

    FYI…both must be taken on an empty stomach, and then no eating for at least half an hour.

    Like Colleen said up above, the probiotic that I take is also enteric coated, and does not dissolve until it reaches the colon. Very important…

    Bev

    • Joan H
      Hope July 2, 2013 at 7:24 pm #

      Thank you sooo much Bev! I didn’t have all that info. I will definitely look into it! I am so happy for you! Congratulations on your success! I’ll keep you posted-thanks for your help!

      • bev July 3, 2013 at 7:25 am #

        Anytime, Hope…we are all in this together.

        :)

  4. PeterNZ July 2, 2013 at 7:47 pm #

    You poor thing!
    It is a bastard of a disease innit?
    I’d advise that taking Immodium is hazardous.
    Keep your chin up; it will get better.
    Cheers,
    Peter

    • Joan H
      Hope July 3, 2013 at 2:32 am #

      Thanks for the advice Peter. Yes, it ‘s a tough disease. One day at a time sometimes.

    • Joan H
      Hope July 3, 2013 at 3:03 am #

      If you get a chance, can you tell me what it is about the immodium that seems hazardous to you? I take it on the days or during the times that I can’t get out the door because of the GI rushing and pain. I also have bentyl, which I rarely ever take because it makes me feel “loopy” and out of it. The pain and cramping are unpredictable for now so even if I start my morning two hours ahead of schedule, I might have no problems getting out, and sometimes starting early I STILL can’t get out the door…or conversely, once I’m out and working or doing something, I take it if the cramping is forcing me to go back home and lay down or be stuck in a bathroom for hours. So any thoughts would be appreciated – Thanks

  5. shelly in maine July 3, 2013 at 4:09 am #

    Hope,
    Welcome to the best site ever! I won’t say whether or not to choose meds,but I will say do tons of research about the potential side effects so you know exactly what you are getting in to. These are serious meds with potentially serious consequences. You should read the info on here from those of us that have used them under reviews and search the Med. On the site and it will come up with the matching stories. It is important to know the side effects because the doctors do not like to blame the meds for anything! I myself have been through all the meds and am now allergic or intolerant so have been Med free for almost 2 years with 2 major flares during this time. I am a lifer UC, 45, symptoms all my life and on meds by 13 and diagnosed officially by 15. I also understand the whole familial thing as mine is riddled with ibd, and my Dad recently died from complications of a lifetime of Crohn’s.

    It is so important to focus forward and on yourself. I also would advise you to slow down and do less for others and focus on getting yourself healthy…if you don’t have your health, you have nothing and that is a gift that UC teaches us and to appreciate all the little things!

    Peter is right about the immodium…I believe it can cause things to stop up too much and potentially cause other problems.
    You should look at diet like SCD and paleo and go very slowly. There are some great sites and books including Adam’s E books, pecanbread-stages website, SCD lifestyle, Breaking the vicious Cycle.

    As Bev said…a good quality probiotic is a must. Read about gut flora/biome…even CCFA is getting on board…finally. it takes time…sometimes months….another gift of UC…patience and an extra medical and nutrition degree on top of your RN and life experiences! I also have an Rx for VSL 3 DS. I do switch it up with Bev’s probiotics. Different release forms. I also follow SCD about 95- 98 % now…the science makes sense..you have to read the book, Breaking the Vicious Cycle, to really get the full understanding.

    Stay positive, the meds you are taking may be more irritating or causing some of your issues…again read all potential side effects of all meds. Keep track of everything from food to M’s to meds and try and be as systematic as possible…
    And remember that UC is not a one size fits all disease so be patient and remember Hope…there is hope!! :-)
    Best, Shelly

    • shelly in maine July 3, 2013 at 4:15 am #

      damn auto correct…that was keep track of bm’s! And everything. I also have pretty much given up dairy. My diet is much different now and i am no longer able to tolerate foods that I used to. I make power Smoothies and reccomend a good quality blender! :-)

      • shelly in maine July 3, 2013 at 4:20 am #

        and it didn’t even correct recommend! Oh, sense of humor is very important! :-)

  6. Joan H
    Hope July 3, 2013 at 3:41 pm #

    Thank you Shelly! You made me laugh with your damn auto corrects! :) I need them too! And a sense of humor is important, and I’m finding that right here on the site – the first time in my life I ever smiled about anything to do with UC! I will take your advice – thanks for sharing it! I have multiple, multiple allergies to meds and food too – the food part has been tough because when I react to a food, I always go into a flare that can last for months :( And the things that may people substitute for protein, like nuts, peanuts, tofu, as well as most fruits with pits and a whole lng list of foods that other people can eat — I can’t! (I have an epi pen for that). I just got The Vicious Cycle Book and am starting to read…..thanks for your help!

  7. shelly in maine July 3, 2013 at 4:40 pm #

    You’re welcome! This is a great forum. Adam is awesome and his books are great, too. You can check out those other sites later…the pecanbread-stages one really helped me. I had to go sooooooo slow. Plus I am very finicky/picky, but you have lots of allergies to work around. The good thing is you like to cook, which you must do for all the allergies. I think you will do very well with it. The probiotics is truly key. There is a code for the Dr. To get the prescription strength. Let me know and I’ll find it if that is the one that is still good.

    It is so much to take in, but since you already have a background and the family stuff you’ll be fine. It is so much trial and error. I also took herbs from my chiro. Oh yeah, omegs 3’s, vit d. I took a different form of nexium and found it was causing more problems than helping.

    Oh for more laughs go check out some of Adam’s videos…just click on he video thing under categories…you’ll be glad you did!
    :-) Shelly

  8. Sharon July 4, 2013 at 4:45 am #

    Hope. Well your name says it all :) There is definitely hope for us all. I also have 4 kids, have had UC for over 20 years, and have been married 19. I totally get the whole ‘not wanting to cook’. When I am in a flare, trying to make dinner for my family literally makes me sick. Even the smell of food grosses me out. I know you have been in this flare FOREVER and can’t really see the light at the end but it is there.

    As for the meds, I eventually ended up on Humira which I took for a year. I took one shot every other week. Combined with VSL#3 DS probiotic and steroids, I eventually kicked a heck of a flare. I have only been off of Humira for a couple of weeks (last shot a month ago). I am taking probiotics, iron, Astaxanthin (supplement), and have a supply of L-glutemide in case I see one drop of blood. Sometimes, the heavy hitter drugs are needed. Obviously, if you can control your flare naturally, go for it. If you can’t and you need to take shots or infusions, don’t feel guilty or panicked. My kids and my husband are all glad I did what I needed to do to rejoin life. I hope to stay off the Humira using supplements and probiotics. I am, however, grateful that Humira gave me back my quality of life.

    BTW, based on your bio, we have a lot in common. If you lived in S Florida, we would probably hang out. I noticed you work with the people in poverty. I quit going to the homeless shelter when I started Humira for fear that I would be exposed to hepatitis and TB with no immunity to fight it. I mentioned that to my doctor on one of my appointments. He said that I was more immunocompromised in my severe flare on prednisone than in remission on Humira.

    Sharon

    • Joan H
      Hope July 4, 2013 at 5:11 am #

      Hi Sharon,
      Thank you so much for your advice and thoughts. What an insight I’d never thought about – when I have a flare I really do feel too sick to go help at the crisis pregnancy center because the way it works is that the young women and men, usually under 22 or so and single, have the opportunitites to get high school diploma, computer training, literacy classes, parenting, nutrition, infant CPR – you name it – and collect “points” for their classes that they can then spend in the adjoining room – The Stork Room – where they can buy things needed for the baby on its way, or the one who’s already arrived – like furniture, diapers, clothing…the list is endless but the classes are taught by local RNs and MSW’s and firefighters/EMT’s. It all helps the young parents in their parenting, supports them with long term relationships with us and helps people in a very impoverished community become more stable and independent. I could talk about it a lot, so I better stop for now! I had never been involved in a program like this before, and for so many of these young parents its making a difference. My husband and I rebuilt The Stork Room because it was in need of repair, and I haven’t been able to get back there for almost 2 years with all these flares, etc…so it’s been hard in that way. I will definitely take in and think about what you’re saying for when a flare gets that bad again.
      Right now, I’ms settling some since I cut my food down to rice and bits of chicken. Rice first then added some chicken. I’m tolerating that so far. I started prednisone again about a week ago, too, so it’s a combination thing I think.
      Today is July 4th and the kids are looking forward to a trip to a nearby lake for the first time in almost 2 years together – yeah, it’s been that long with all this. I’ve encouraged them and my husband to go ahead on so many occasions over that time, but it’s gotten discouraging. The past two days have been fairly good, so I’m hoping today will go well but I’m having the old abdominal/rectal pain and cramping — this can be so unpredictable. I’m still going to try tho, and say a prayer.
      I really appreciate your insight, Sharon. As I write I can see how long it’s been sinc I’ve been able to plan ANYTHING that other people would consider a simple thing to do…It would be great to meet you – you do sound a lot like me! I wish you the best, Sharon, and thank you so much! I didn’t know about L Glutamine for bleeding. I’ll look into it. :)

      • Sharon July 5, 2013 at 6:17 am #

        I have heard of that program for pregnancy crisis. I think my mom’s church in north Florida does it, or maybe it’s my sister-in-laws church in Virginia. Either way, its a great program for giving practical help and guidance. Since you mentioned prayer, I am assuming you are a christian. One of the concepts that helps me most when I am sick is that God has a season for all things. Of course, he doesn’t want us to suffer but when we are sick, we can know that he will work all things together for good. When I look back on my worst flares, I can see that I prayed and read the Bible a lot more, my family all pitched in to help and I have learned a new perspective on hardships when dealing with other people who have a variety of struggles.

        As for my kids, they quickly forget how many times I have missed a family outing, even a vacation at the last minute. They seem to appreciate our family time even more when we are all together. Even my 15 year old son, loves family outings (although he brings his girlfriend along these days). Kids are resilient, they will really only remember the best in you. Whether or not I had the energy to scrub floors and showers will not even cross their minds when i am healthy again. As for food, they will survive without homemade meals for a time. They eat a lot of tacos and spaghetti since thats what my husband knows how to cook. My 7 and 9 year olds think its quite a treat when they have had cereal when dad’s working late. Now that I am well, we eat much better and more often all sit together at the table. Now I need a break from too much “mothering” :)

  9. Joan H
    Hope July 4, 2013 at 5:14 am #

    P.S.-I also know when the flares are worsening when I look at my fridge! It is bare most of the time – like you, cooking and eating or even planning a meal when I’m in a flare makes me feel sick…My kids have learned, especially the older ones, to cook for themselves, but I feel so out of it in that way and not “motherly” at all. But I’m trying. One step at a time :) Thanks for listening and understanding.

    • Elizabeth March 26, 2015 at 2:06 am #

      Hi Hope. Like you I have been struggling with my stomach for years and have been to so many doctors and used all different meds without success
      About 6 months ago I came across a website on SCD ( Simple Carbohydrate Diet) and it has changed my life. The writer is Elaine Gottschaik ( spelling could be wrong ) and I highly recommend it. Besides my stomach being normal ( no more constipation and/or diarrhoea I have also lost about 10 kgs. You will NEVER be sorry if you follow her eating plan. Please Google her and her book. Amazing! !

      • Joan H
        Joan H March 27, 2015 at 5:04 pm #

        Hi Elizabeth! Thank you – I will google that book – I appreciate you suggesting it! How did you find it worked for you? Were you able to progress your diet and still be symptom free? I think I tried it once, but at the time I couldn’t tolerate the broths. Is it broths that you start with and then progress? Thanks!

  10. Amanda T July 4, 2013 at 5:45 pm #

    Hi Hopeful,
    I am also an RN and volunteer with homeless every week as well as volunteered at a free clinic for a couple years and at food and clothing pantries in the past. I am struggling right now with depression over my problems, so probably not a great source of uplifting emotional support right now, but wanted to say hey. I know how it is to feel like you are not there for your children as much as they need or you want to be. You’re in my thoughts.
    Amanda

    • Joan H
      Hope July 5, 2013 at 5:14 am #

      Thanks Amanda. You’ll also be in my thoughts and prayers. I think we have a lot in common, sounds like. Sharon, who’s written to me too, also seems to have some common interests and lifestyle – like the shelters and wanting to help out. Sometimes this can be so limiting – that’s an understatement, right? Hang in there, one step ata time. I feel that depression too, but also after having my GI doc tell me that 90% of your seritonin receptors (the chemicals that help regulate mood and depression) are not in your brain – the latest research shows they are 90% in your gut! – it makes sense that if your gut or intestinal wall has damage from UC, the normal chemical flow that your body would normally produce is altered too. So that, on top of already dealing with a chronic illness, makes sense we struggle with depression too. She did recommend amitryptilline, low dose 5 – 10 mg, once a day. It slows GI motility AND is used by psychiatrists to treat depression – it all goes hand in hand, doesn’t it? I tried it – it slowed my intestine (she was hoping to give it a rest to promote healing)- but also gave me other side effects that I couldn’t manage right now, so I stopped for now. Just started a very simple diet with only one food (rice) and was somewhat better. Now rice with bits of plain chicken for protein this week. Every one or two weeks, depening how its going, I” introduce another food and stick with that for the week to see how I do. We’ll keep in touch. I know how it is. And thanks for writing and for the support. It’s GOOD to know you’re out there!

    • Joan H
      Hope July 9, 2013 at 3:18 pm #

      Hey Amanda – How are you doing? I’m just thinking of you and re read your post from July 4th. I hope you’re doing okay. I appreciated you writing and knowing how when you volunteer places and that’s part of your life, and then you get a UC flare..it is hard and it is depressing. I can be climbing a mountain one day over just being able to do what any other “normal person” does without thinking – like ride a bike with my kids – (because for me, that is a victory. It’s a victory to take a walk around the block some days)and find myself the next day with symptoms starting again and be in despair over it. We have to hang on and push through and if fighting UC for me today means I have to rest more and eat a certain way, then I maybe have to accept that as a victory in my favor too. Anyway, I hope you are hanging in there.
      All the best to you – Hope

  11. Joan H
    Hope July 9, 2013 at 2:38 am #

    Question everyone :) I don’t know if this is the place to write this but: I have been pretty symptom free for almost a week and a half now as far as bleeding, pressure, rushing to the bathroom. Not incapacitated with pain, lying down all the time. In fact, spent some time in the garden this past weekend weeding and also got on the elliptical the other night for the first time for 25 minutes! Big victories for me! I have started to increase plain chicken and decrease rice so I can get my protein up a little. On 20 billion probiotic, vitamin b complex, calcium with d, multivitamin and 2 lialda in the morning, 2 in the evening as well as nexium. I know that sounds like a lot but it’s actually a decrease. I also stopped taking the prednisone after tapering just yesterday.
    I have so many food allergies-can’t tolerate bananas or most fruits (actually have anaphylaxis and need an epi pen for apples, cantalope, honeydew,nuts, peanuts, almonds…) — any suggestions on how to proceed next with diet? I’m also intolerant to milk and wheat. I agree with Adam’s advice about taking it slow in the SCD area – because he is so right – going too fast forward and having a set back is harder work than going slowly into new food – any ideas would be appreciated – Thanks Hope

  12. shelly in maine July 9, 2013 at 3:25 am #

    Hope..Congrats on your progress and feeling better! :-) remember that any improvement is amazing. I did read that you were out gardening…awesome!

    Don’t forget to check out the “pecanbread stages” website. That really helped me a ton. I did a lot of soups and Smoothies…whatever you can tolerate and very bland…no spices for now! Carrots and squash (winter and acorn) were pretty safe for me. I don’t really like spinach, but added it in to soup( frozen spinach). I found using frozen veggies was easier and more convenient and cooked down better for easier digestion. Are you going to make your own yogurt? That may be very helpful. You also should add in omega 3’s-fish oil. Are you allergic to fish? That would be awesome add. Just keep everything bland for you and you can add flavor and spice for the family! Fish? I don’t like fish,but I’m hoping to love it and running in my next life, although I don’t want to be a marathoner…don’t understand that mindset of running to sickness!? Anyway, use caution with eggs..scrambled on occasion seemed OK with me. Just keep track.
    You may just have to go to the grocery store and load your cart with “safe”foods that you can tolerate and are not allergic to…as natural as possible, of course!
    There are so many options available now in the grocery store or if you’re lucky enough to have a trader Joe’s near you…which I don’t, but lots of variety, organic, etc. Talk to people in health food stores for recommendations, too. I also used coconut milk and coconut flour(“breaded” chicken with it for variety) since I don’t really care for almond milk/flour( which was/is also rough on my system). Check out the site “comfybelly” (comfy tummy is a different one and “against all grain.”
    Hope this helps…so much info, so little time.
    Best, Shelly

    • shelly in maine July 9, 2013 at 3:39 am #

      Hope…have you had your vit d levels checked? There is some newer research that says we need much higher levels than the general population. The omega 3’s are super anti inflammatory, etc, my regular Dr. And I researched and I actually take 3-4g. You can’t get enough through diet. Remember, a good blender could really help! I find I could have some things sooner since they are already “chewed” for you! OJ with calcium? Super power wild blueberries…especially Maine ones with scientific proof! For real! :-)

  13. shelly in maine July 9, 2013 at 5:01 am #

    okay, so I always think of a million more things…lots of talk about saurkraut(you can type it in above to find the stories I don’t eat it, but supposed to be helpful, good bacteria and fermented food…also helpful…Bev’s l-glutamine is the easy version. Kefir, cook with pumpkin, I don’t love meat, but because of anemia I would add burger, low fat or ground sirloin, again, easier to digest for me…already “chewed”! Check out allowable non allowable foods, SCD websites, and yes to exercise,no matter how little…my treadmill has saved me…close to bathroom and can do as little or as much and multitask chores…no matter how fatigued just go easy on your elliptical to burn less calories for now. :-)

    • Joan H
      Hope July 9, 2013 at 3:23 pm #

      Shelly – Thank you for all your advice on the food and the web sites. I’m looking now. I am allergic to so many things it’s been hard, but I see it’s all part of having an autoimmune disease. I need to learn how to work with it.
      Today started as a good day – the first string of better days and then good because I was able to get into my garden (which really is a tiny one, but still I love it) and also to do some elliptical. But today the proctitis symptoms are back, and I’m not sure if I should try any other type food or just go with where I’m at. That was disheartening today. Got a little better in the afternoon after having to take two immodium at work, and now still the lower belly cramping and pain…I did take two probiotic tablets last night at the same time, on an empty stomach (20 billion total count)so I don’t know if I should have spaced them out. Trial and error, and keep trying huh? Thanks for all your help and advice . I’ll look into it…never even thought about saur kraut…interesting – Hope

  14. Joan H
    Hope July 18, 2013 at 5:28 pm #

    Well, I added blueberries to my diet – antioxidants, you know :) Less than a quarter cup a day, maybe even just an eighth of a cup just to see. I was just eating rice plain with salt for flavor, bits of chicken, drinking 48+ ounces mostly water/no caffiene. Just started another flare! Happened in just three days – I didn’t expect this! I think I will try to get the L Glutamine going – never have tried it. I started increasing the probiotics to 15 billion today – I had to take that slow because of the bloating/cramping when I started.Does anyone know where the L Glutamine is derived from – i.e. plant or animal sources? I was going to go through Adam’s site to help support the site – and use Renew Life. I have so many food allergies tho — I’m not sure what the base of the glutamine is, and I don’t want to make tis flare worse. Maybe I shouldn’t start it while in a flare? Any ideas? (I do know I won’t be having blueberries again real soon!) Thanks -Hope

    • bev July 18, 2013 at 5:37 pm #

      Hi Hope,

      The North Coast fermented L-glutamine that I swear by is derived from beets, so it is ‘vegan’ (or plant based).

      The Renewlife Critical Care probiotic is also vegan.

      Cheers,
      Bev

      • Joan H
        Hope July 18, 2013 at 7:22 pm #

        Thank you Bev!!! I really appreciate that! I am NOT allergic to beets! :) You don’t know how happy that makes me – it’s hard to have the UC, and then so many food allergies on top of that, so to find something I can have is priceless. I have allergies to all nuts, peanuts, tree nuts, apples, carrots, celery, peaches, pears, watermelon…lots. I have to carry an epi injector for them. So trying to navigate through this has been hard because there are so many additives in so many foods. And I looked at the pecanbread site but it has so much with almonds and things. Not sure if I can even have the coconut flour and milk. Anyway, your advice is priceless, and thank you so much Bev – Hope :)

    • shelly in maine July 19, 2013 at 4:55 am #

      Hope…so sorry about your setback..hopefully only a minor one.

      I only use frozen blueberries and either cook them and/or blend. Something helps them break down when frozen-same with other fruits and veges. I pretty much cooked everything down when I was in my flare and being cautious.

      Check into all those fermented foods if you can’t use the supplement. There is a whole list of fermented foods.
      There are also all kinds of other flours for you to try like rice, oatmeal, etc if you are too nervous about the coconut flour.

      Hang in there…baby steps. Don’t forget the anti inflammatories and omega 3’s.

      Best, Shelly

      • Joan H
        Hope July 19, 2013 at 3:47 pm #

        Shelly, thanks for suggesting the frozen and cooked bueberries and other fruits and vegetables. I’ll be thankful when I can have that kind of food again – never thought I’d be saying I get jealous when other people have a carrot or an apple :) But I have to admit, sometimes I DO feel that way. Or I look over during work and my co-workers are eating away everything and anything hey want to without thinking. Yeah. That makes me mad sometimes….Then I think in the long run, my diet will make me healthy and I have nothing to complain about! With the apples, I had been told by my doctor that cooking them down changes the chemical make up/structural compounds so that people who are allergic to raw apples and fruits can often tolerate them when they’re cooked or frozen! I should have thought of that with blueberries too. But, in any cae at this point I can’t tolerate cooked apples at all, or cooked anything but still the plain rice and some chicken bits. But I will keep that in mind again for the next flare when this one is done – Thanks Shelly!

        • shelly in maine July 19, 2013 at 6:07 pm #

          i know what you mean about watching others eat…It gets frustrating at times, but most of the time I make people tell what they ate when they eat out or have had a good meal and I tell them I live vicariously through them! :-) And yes, we are healthier for the many things we don’t eat.
          So in the meantime, do what is safe and works! :-)

  15. bev July 18, 2013 at 9:50 pm #

    No problem! I only hope that there is nothing else in the darn stuff that I don’t know about…

    You do have a lot of allergies, Hope. What a pain for you. Sheesh! You always gotta be on the ‘aware’ for sure…

    :)

    • Joan H
      Hope July 19, 2013 at 3:20 am #

      Thanks Bev! I did look up the North Coast fermented L glutamine and they do have disclaimer because their product is made on a line and in a factory that also uses tree nuts, peanuts, soy, milk and other allergens – Just in case someone else is thinking about that who also has lots of food allergies. I’m looking into Renew Life now, and they’re supposed to get back to me. I’ll let you know. But thank you anyway because it helped me rule it out for me (my allergies are extensive – all part of the UC package for me, I think, never had them before I was 36 or so) but possibly Renew Life doesn’t have these potential ingredients. Thanks again Bev!

      • bev July 19, 2013 at 7:31 am #

        Anytime, Hope. That’s too bad about the North Coast.

        Hopefully Sharon’s brand will be alright for you to take.

  16. Sharon July 19, 2013 at 4:59 am #

    Hope, I just pulled out my container of L-glut. It is not fermented but since I couldn’t get that in my area, I bought Rapid Drive Glutamine 5000 powder from GNC. I do not see anywhere on this container that it may have trace amounts of nuts or anything else. The only listed ingredient is micronized glutamine. As with the probiotics and everything else, one company may have just enough differences from another that make a huge difference for you and your allergies. BTW I recently read somewhere that more people are becoming allergic to fruits and veggies but the real culprit may be the pesticides or other things used in the growing and shipping process.

    • Joan H
      Hope July 19, 2013 at 3:58 pm #

      Thanks for being so helpful and supportive Bev. I got really discouraged again the past three nights when all I had was a gut full of pain, and the thought “Oh No – I thought I was on the right road! Now look! What did I do?” And all those other thoughts I’ve come to know people with UC struggle with. It’s like Adam said in his book – one trip to the toilet can change everything in a minute. It can take one flush of a toilet to get you really down again. But then I also remembered, there will be cycles sometimes, but one step at a time — baby steps, as Shelly says :)
      Anyway, you prompted me to read more about the L Glutamine and call companies today for product info, including where the product was manufactures, was it manufactured on a dedicated line FAR away from all those allergens I mentioned, or better yet in a facility that doesn’t even process nuts, peanuts and all those other things.
      Sharon mentioned the GNC brand and that looks like a good possibility. I still have to call and verify that with them and go through my “allergy” list. But I did get through to Renew Life and they said their Ultimate Flora Adult Formula 15 Billion and the Ultimate Critical Care Probiotic (which contains L Glutamine in it) are made without any of the allergens (nuts, peanuts, tree nuts, soy, milk, wheat, etc) and when I asked her what the VEGETABLE CELLULOSE encasing the capsule was made from – because often it’s a plant food, and not always safe for me to try – she (Patti) said from the soft parts of a tree, usually pine tree she said. So I had my first Renew Life tonight. So far, so good. And I’ll keep trying and hanging in there. Thanks so much to you and Shelly and Sharon!

      • bev July 19, 2013 at 7:19 pm #

        You are so so wonderful, Hope…and your name is very befitting to you too!

        You have certainly done your research…and the Renewlife probiotics are really fantastic. I’m not surprised that they are basically allergen free. They really put a lot of thought and so much more into their products, it seems.

        I have read about Sharon’s GNC brand of L-glutamine and it sounds perfect for you (and her too!).

        I want SO badly for you to feel the remission!! I want all of us to have it…

        • Joan H
          Hope July 19, 2013 at 7:25 pm #

          Thanks Bev – you’re sweet to say that about the remission. I want everyone to have it too. I’m really glad there is a site like this – I’ve never seen any like it before. There is so much support, encouragement, education and alternative answers – I love it! And there’s an openness in people’s attitudes as each one has their own unique way, and every one tries to share with each other in positive way so we can try things and see what works for each of us. Thanks for all your help!

          • bev July 19, 2013 at 7:42 pm #

            I agree about this site….I’ve never seen another like it either. It is a very safe place to be. It actually feels like ‘home’ to me, now!

            :)

  17. Sharon July 19, 2013 at 4:40 pm #

    Hope, so glad you are staying positive and continuing to search for answers. I will pray for you to find some answers.

    Sharon

  18. Joan H
    Hope July 19, 2013 at 5:51 pm #

    Thank you Sharon – you too! :)

  19. shelly in maine July 23, 2013 at 5:15 am #

    Hi Hope, (and Sharon and all…)
    Was wondering your thoughts and experiences with antibiotics and MS, since you are in the field.
    Can you add to the “scared to take antibiotics” thread??
    Would love any extra input and the info is on that thread.
    Thanks, Shelly

  20. Sharon July 23, 2013 at 7:47 am #

    I have taken antibiotics over the years without any issues but I also had a sinus infection which required 2 z packs that put me in quite a flare. I don’t now if it was actually the lower immunity from the infection or the antibiotics that caused the flare. I do know that if I am offered antibiotics for me or my kids, I often wait a day or 2 before filling to see if we really need it. I am very cautious about overuse. Btw all 4 of my kids are highly allergic to Augmentin and my oldest is equally allergic to Omnicef so I err on the side of under medicating. Having said that, I agree with others that probiotic usage with antibiotics may be a good combination when necessary.

    Sharon

    • shelly in maine July 23, 2013 at 9:33 am #

      Sharon,
      Thanks…I’ve already upped my vsl3 DS about a week ago. My Dr. explained why amoxicillin was the least of all evils of antibiotics…but I have never taken it before. I’ve only been on antibiotics twice. The last time I was on remicade, post shingles and my dad had been in hospital for 6 months before he died, ncluding the ICU a few times-so it was precautionary.
      Thanks, Shelly

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