Ulcerative Colitis Tips


Ulcerative Colitis Tips PLUS iHaveUC Newsletter




War in My Colon

Intro:

I am a “healthy” 23 year old woman. I am a fully time nanny and full time student. I love eating healthy and focusing holistic based health approaches.

Some more about Andrea:

I am from the New Hampshire, moved to Massachusetts last year but miss my home state. When I am feeling well I love to cook healthy treats free of refined sugars and make other creative deserts and snacks. I love to walk, go the the beach, and exercise.

Colitis Symptoms:

I am experiencing my first flare….about 6 weeks and counting. At the start of the flare, lots a mucus BM with blood throughout the day, D 5+ times a day, abdominal cramping 10+ times a day. Symptoms have gone down due to meds, abdominal cramping 5 or so times a day, D 3-5 times, exhausted, achy joints….

Andrea’s Story:

I was diagnosed with ulcerative proctitis May 2014.

I had little to no symptoms, some mucus on fully formed stool and that’s it. Was prescribed canasa, did not take as directed. I am a bad patient. I didn’t see why I should take medication when I was having no symptoms. November 2014, blood in BM, went to new GI (I moved), prescribed canasa and Lialda. Again bad patient, did not take the Lialda due to fear of side effects and canasa was just “hard” to keep up with. March 2015, symptoms started to get worse, frequent BM, but still nothing crazy. I was dealing with it.

Mid April 2015 I started getting cramps and frequent D throughout the day. Then came the obscene amount of daily mucus BM, then mucus with Blood. But I was dealing with it until one night my boyfriend said you need to call your GI. Saw GI May 12th, prescribed mesamaline enemas, uceris, and balsalazide. Uceris did nothing :(. I was visiting my family on my &q uot;vacation” in Florida last week and after days of dealing with the cramping and D I couldn’t handle it. I woke up with level 10 abdominal pain went to ER. Morphine, high dose steroids, potassium IV. Catscan revealed Mild pancolitis :( So I spent three days crying in the hospital feeling sorry for myself and just so sad that my body is so sick. They put me on a tapering dose of prednisone, the one thing I was trying to avoid this whole time. Though after a phone call with my GI today he felt the tapering dose was too low and put me back up to 40mg a day until I actually start to feel better.

I am depressed and discouraged over this whole situation, I had to call out of work today because I woke up and felt like I had been hit by a bus. I could not move. I’m scared to eat.

I have lost 10 pounds in less than 2 weeks. Overall I am feeling quite down. I went from being what I thought was so healthy to feeling like I am dying. I keep trying to tell myself that this did not happen over night, and its not going to go away overnight. But man will I ever get out of this flare? This is the worst I have ever felt in my life. And I am of course very concerned about all of the prednisone side effects…I don’t want moon face or weight gain or acne. Does everyone gain weight, or can it be avoided through healthy food choices and low sodium foods? I am going to a well known naturopathic doctor in three weeks. I am not going to stop my meds but I do not want a life of medication. I am willing to do whatever it takes to beat this. My hope is that he will have some suggestions for managing the disease. My quality of life has plummeted and I realize this may have been avoided if I just took the medication in the first place. But please don’t make me feel any worse for not doing that, I know I am a bad patient.

I joined another site and everyone ridiculed me for not taking meds and told me diet wouldn’t make a difference. I just need some support, for someone to tell me they know how I feel and that there is light at the end of this dark tunnel. Any tips for eating during the flare? Water can even upset my stomach. Currently eating homemade chicken soup and homemade carrot orange ginger soup…. I am sick of feeling this way!!!! And I really miss my coffee….

40mg-prednisone
Balsalazide- 3 capsules, 3 times daily
Mesamaline enema-nightly
Antispasmodic medication as needed

Primal Defense Probiotic
Green Vibrance
Vit D3
Multivitamin

Also…
I stopped many of the other supplements I was taking due to the flare. I was using l-glutamine, evening primrose oil, reishi mushroom, curamin (not to be confused with curcumin).

Gluten free, dairy free, grain free, wheat free, caffeine free.

written by Andrea B

submitted in the colitis venting area




12 Responses to War in My Colon

  1. Greg May 27, 2015 at 6:47 am #

    Andrea,

    I’m sorry for the tough time you have been going through. Although everyone seems to say just take you meds I can understand not wanting to take your med’s especially in the beginning. When I was told to take Lialda in Feb 2015 when I was first diagnosed I didn’t even buy it since i had no idea about it, side effects, or what U.C was for that matter. Also it cost a lot of money. I’m currently on another med and prednisone.

    I’m currently tapering down on prednisone starting from 40mg and I haven’t had many of the standard side effects you mentioned but I do have headaches to varying degrees all the time which is not fun when they get really bad and keep me up at night. Along with the night time bathroom breaks, and night sweats. So the side effects do seem to vary a lot from person to person. I’m also really concerned about the long term effects.

    As for diet I would say it for sure make a differences. Although it does vary it seems even most “experts” will say it has some effect especially when going through a flare. This site is full of info and stories with people who manage it with diet to some degree. Some people seem to have success with just diet. I’ve started trying to tailor my diet to help me deal with every thing and it seems to work but only more time will tell. It just depends on the person and the willingness to try and try again.

    Stay positive, and I hope you feel better

  2. Mary May 27, 2015 at 7:22 am #

    Hi Andrea,
    Reading your story reminds me of my son who has suffered with ukcerative colitis for just over 7 years. He was diagnosed with proctitis and the GI said he was lucky because it will stay in this area only and not travel. He was put on salofalk (mesalamine) and boy did the colitis quickly travel and it wasn’t long before he was in incredible pain, bloody mucous 20+ per day and diagnosed with pancolitis. He tried a few of the mesalamine drugs, all with different side effects and worsening of his colitis. We niow know he is allergic to this group of medication. Given that he is allergic, he watches his diet. There are many foods which have high levels of salicylate eg dried fruit, almonds, pistachio nuts, many fruits (bananas, pears and some apples are fine), turmeric, ginger etc.
    It may be worth your while looking into this. I hope you find relief soon.

    • Lynn May 29, 2015 at 6:07 am #

      Hi Mary –

      My 21 year old son was diagnosed with UC about 3 years ago. Everyday is a constant trying to deal with the symptoms. As all on this UC site have a story but won’t go into detail at this time. I have a question for you regarding the salicylate foods. A light bulb went on when I read your post. When my son was diagnosed they prescribed asacol right away and he got extremely sick. Another GI 6 months later wanted to put him on asacol again, we tried and he got so sick had to do some prednisone. He also mentions that apples don’t agree with him? How are your sons symptoms and is he just doing the no or low salicylate diet foods now?

      • Mary May 29, 2015 at 2:53 pm #

        Hi Lynn,
        My son is very well now. He stopped mesalamine medications 2 years ago as his blood levels showed he was heading for renal failure. He felt a great improvement in his condition after stopping this medication. The only problem being a few weeks earlier he started 6 mp and he is still on it, as he is too scared to come off it. I am working on getting him off this medication, hopefully soon! He also takes rifaximin along with a strong probiotic.
        From time to time my son would complain he wasn’t feeling great and I made the connection with his diet, after he felt quite unwell one morning, after eating a lot of almionds and pistachio nuts along with wine the night before – these are high in Salicylates. I used to make my own almond milk, thinking I was doing the best for him and plan my meals for the family around what was best for my son, which although very healthy, no so for him. Golden delicious apples are very low in salicylates, but others are towards the high end. Lynn, I hope this helps and your sin starts to feel well again soon.

  3. C. Miller May 27, 2015 at 4:44 pm #

    contact me at my email cmiller@sutton.com You sound exactly like me and what i went through…same stuff as all of us. I may be able to help you as I am fine now as long as I stick to my new way of living. We need to make major changes as to how we live in the world.
    Hold on there are people who can help you and they aren’t doctors.

  4. Mary H
    mary May 28, 2015 at 5:01 am #

    Andrea, reading your story I felt like i was reading about myself. I live in New Hampshire. Last fall I reluctantly did the high dose of tapering prednisone. It didn’t complete alleviate the bleeding and all symptoms. However I was blessed to be guided to a naturopath in Peterborough, NH who has helped me tremendously. Also, since February I have been vigilant in following a anti-candida diet and eating cultured/fermented foods with every meal. This has been hugely helpful and I will probably eat this way the rest of my life. You are welcome to contact me at my email mary@howielegal.com

    • greg May 28, 2015 at 7:21 am #

      Mary,

      Do you see your Naturopathic Doc along with you GI Doc or just naturopathic Doc?

  5. Mary H
    mary May 28, 2015 at 2:38 pm #

    Yes, I do. But the only thing I’d doing from the GI Doc right now is Mesalamine enema every other night now. The naturopath has me on several supplements that stopped the bleeding and degrade autoimmune antibodies. He is amazing and I can give you his name if you want to contact me via email.

  6. Sher May 28, 2015 at 8:36 pm #

    Andrea- do not blame yourself for being a bad patient- for all you know not taking your meds had nothing to do w/ it… BTW cantasa made me sick & didn’t help! I used to blame myself for ‘coming down’ with colitis, which I now know doesn’t help at all! One thing I’ve for sure learned is when I do flare I have to remind myself not to freak out and stress like I have in the past and to remember I am different and maybe for a while I have to “baby” myself.

    Also please find a Dr that knows diet can help/improve symptoms. My experience when I first was diagnosed no one told me about changing diet, they just wanted to shove meds down my throat…. And like you I ended up stopping them on my own (I am not condoning just stating a fact). I was tired of taking a ton of meds that I didn’t even think we’re helping that much, I wasn’t going through a horrible flare w blood at the time just ‘D’ and frequent un-formed movements

    A few things from experience:

    Prednisone- I only gained weight and facial changes acne headache when I was on it for long period of time (over 6 months)… I only took it again years later to get out of bad flare, like a 6 week taper… now I only will take foam (up the rear) steroid (proctofoam) to get out of flare if necessary.

    I don’t think it’s necessarily what I ate on prednisone I just remember always being hungry- like just after I ate still hungry!

    I’ve been gluten free for 2-3 yrs now, but during a horrible flare I usually eat a pretty bland, repetitive diet, bananas, Greek yogurt, chicken broth, occasionally rice or a piece of grilled chicken. Stay away from sugar. I refuse to quit coffee so I still drink (bad patient too :-)

    Meds & supplements now: sufasalazine, l-glutamine, aztaxathan, Imodium

    Hope this helps you are not alone & no one’s judging you! Keep calm- it gets better :-)

  7. Gina July 12, 2015 at 10:02 am #

    I hope you are doing better by now. I can relate to everything you said? My 1st flare hospitalized me for 4 days. I was given steroids, flagyl, and potassium. When I was released I was put on prednisone, an antiobiotics, and Lialda. I eventually taped off the prednisone. The symptoms came back after that but never real bad. I have since cut the amt of Lialda. The prednisone swelled my face slightly but the worse part was I couldn’t sleep; however I was never tired..very alert. I have no side effects from Lialda. Recently symptoms came back pretty bad. I was diagnosed with norovirus and cdiff and was given flagyl. I’m off the flagyl now but now I have bloody diarrhea. Some days I don’t go to the bathroom at all and then the next I have bad gas pain and diarrhea. I found that I was starting to isolate myself and keeping my mind constantly on my gut. I have found help thru counseling,prayer, and faith. Diet does nothing for me. I also have a dear friend who has Crohns. She helps a lot. She travels, is athletic and has learned to live thru her illness. I also found that I have a coworker who has UC. He is an inspiration because he is very athletic and eats like a horse. He claims he handles his with exercise and positive thinking and plenty of vitamin d mostly from sunshine. I guess everyone has to find what works for them. All I can really suggest is to listen to your doctor and your body, stay active, and enjoy your new life even though it’s drastically different. You have UC…don’t let it have you!! Pray!

    • Andrea July 12, 2015 at 10:26 am #

      Hi Gina, I had a total colectomy last week on July 1st. 1st of 3 surgeries. I got very sick very fast. :/

      • Gina July 13, 2015 at 3:03 pm #

        Andres, I’m so sorry to hear that. I hope you have a successful recovery.

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