Ulcerative Colitis Tips


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I Might Have Colitis, Not Sure Yet

Introduction:

My name is Amanda. I’m a 44-year-old single mom. I really need to vent right now, and I don’t have a support system or know anyone that would understand what I am going through. It’s not exactly the kind of thing I can post on Facebook. I feel overwhelmed with everything and like I am going into a depression because of it. Maybe it will help to post here. I will leave a lot out, but try to include what I need, to get my situation understood. Maybe someone will have the time and inclination to actually read the whole thing.

Symptoms:

Rectal pain, frequent blood and mucous throughout the day; sometimes severely constipated for weeks but still passing a lot of blood and mucous; other times having frequent very small liquid/mucoid to semi-formed stools (with blood and mucous) around 15-20 times during the morning/early afternoon, with cramping. Seems like the symptoms vary and change all the time.

Might Have Colitis

Four years ago, when I realized hanging on for the sake of my kids was not doing them any good, I gave my abusive husband an ultimatum to get help for his problems or I would take the kids and live in the car if I had to. Being a pathological narcissist, his response was drive off to Alaska (from SC), while the kids and I were at church one day, and after living it up as a bachelor for a while, start a new life with a new family. Since I had been a stay-at-home homeschooling mom (the kind that uses cloth diapers and cooks three meals a day from scratch, keeps the house and yard perfect, heats with wood, grows and cans food, sews, shops garage sales, etc.) for many years, I was not able to get a job as a nurse, even though I had taken a refresher course and had applications in everywhere for 2 years. In this area, there is such a glut of nurses that even many new graduates and experienced nurses are not able to find work. I finally realized my only option was to return to school for my BSN.

It was a long, difficult struggle to break free of his financial and psychological control, even with him thousands of miles away. But I managed to file for the divorce and get some temporary spousal support in order to support myself and the kids while I get through school. I had to sell the house, and after sending him his share of the equity, downsized to an 850 sq. ft. house that needed a lot of work to be livable. I did all this work myself, over a long, hot, humid summer, while our belongings sat in a mobile storage unit in the driveway, which I had to unpack and repack every time we needed something. This was difficult, as my physical problems seemed to get worse.

Over the last two years, things have started looking much brighter. After becoming relatively free of my ex’s psychological control and abuse, after getting this house and property nice and comfortable, while working through year-round full-time college and homeschooling my kids… I started seeing a light at the end of the tunnel. Although my physical problems started getting worse, we have really enjoyed the peace. Although I have not had time to give to my kids and we’ve had to struggle in some ways, without support of family or friends around, I have been able to look ahead to my graduation and finally becoming independent and having more time to give to them. I have truly been happier than ever and very optimistic about the future.

But now my bowel problems have progressed to a point that I have not been able to keep ignoring them. I started noticing blood in my stool in my early 20s. I ignored it for a couple decades, pretty much. I haven’t ever been able to afford health insurance and I think I was kind of in denial. Also, I have had other more pressing health issues to worry about… among other life issues in general. I have had hearth dysrhythmias, joint pain and stiffness, weakness and fatigue… all that vague stuff that can’t be diagnosed but makes it really difficult to get stuff done. Also partial subluxation of one hip and one shoulder (I think the rotator cuff was injured during strenuous work in the yard –causes pain, mobility limitations, numbness and tingling).

Anyway, didn’t mean to write out my old lady list of ailments… just pointing out that even if I had health insurance, there were other things more pressing than the fact that I sometimes messed my pants while shopping in Walmart (the damn bathroom is a mile away from everything). Well, over the last few years, the mucous and blood have become more and more frequent to where it has altered my life until for about half a year now, most days, until late afternoon, I am running to the toilet every 10 minutes to avoid a mess. The signs and symptoms seem to change day to day, week to week, but that is the one consistent problem. I do not have diarrhea, and that is why I never considered IBD. In fact I recently started having problems with constipation since this past May. Before that I had a somewhat normal BM every morning –although they have become smaller and smaller, but still leaked blood and mucous frequently during the day, when I passed gas, along wi th tiny amounts of stool. (Such a FUN topic!) Over the last couple years the blood has become worse (often dripping in the toilet til the whole bowl is red, or passing large clots), and I started noticing inflammation type pain in the rectum.

When it became really bad this past Spring, I finally linked it to UC. I realized that it tends to flare up worst in Spring (when seasonal allergies appear) and remembered that my mother has a history of autoimmune symptoms (possible Lupus or fibromyalgia, definite rheumatoid arthritis from a young age). I realized that my eyes are blurry and mucous-y and that my joints ache worse, when my rectum is hurting and the blood and mucous is bad. Since about April, my stools have not been solid, even when I am very constipated. I will go ten days passing nothing except a Tbs or so of mucoid/liquid stool per day, along with the mucous/blood, until I get so miserable I drink a bottle of mag citrate and sit on the toilet for two days, passing semi-liquid stool. I am sorry this is all over the place and I am repeating myself. If anyone is actually able to get through this, you have my undying gratitude for your time and attention. BTW what seemed to be the major triggering factor this Spring was my taking of Echinacea for a cold I was getting. That is an herb that stimulates your immune system. So that also helped me link my symptoms to UC.

To top it all off, during one of my recent all-day mag citrate cleanouts, I realized that I now have a prolapsed rectum and uterus, as well as a rectocele (which was probably causing some of the constipation problem). So now, I run to the bathroom every 10 minutes, for the most part of each day, with cramps and feeling like I’m trying to pass a brick from my colon to my rectum, and sit there scared to relax because my rectum will slide out of my anus and my cervix will drop out of my vagina (oh come on, you talk about poop all the time, you can handle the female stuff). And all I get is a tiny bit of mucoid stool and or blood/mucous.

Another symptom I have, starting this year, is a feeling I cannot really describe, except to say that something in my abdomen feels “dead”. The closest thing I can relate it to is when I was very pregnant and having Braxton Hicks contractions and the uterus would be very tight and hard and it would cause kind of a queasy feeling.

As far as healthcare, I finally went to the free clinic this Spring. They ordered a barium enema which I was given a voucher for (the hospital donates a certain amount of procedures to the free clinic). The first time, the bowel prep did not work (because I had been backed up for a couple weeks), so the next time, I did the prep for two days, until I had green battery acid running through me, and I was passing out and had a migraine from low blood sugar. (This is how I discovered mag citrate). Also, I discovered when they did the x-ray that my sigmoid colon doesn’t head over to the left side from my rectum. It goes all the way to the right side and then folds back on itself and heads left. Apparently this is normal, but could explain how I could have colon pain in unusual areas.

But no matter how much I wanted to get it done, the BE was too painful for me to tolerate, and they couldn’t complete it. The doc at the free clinic said he would try to get a hospital sponsorship for a colonoscopy. I have been jumping through hoops and red tape for that until it finally fell through yesterday because I have too much money in the bank, which I have been diligently saving to pay the remainder of my college bill when I graduate. So do I spend that out of pocket for a $4K colonoscopy that probably isn’t going to fix anything? I can’t afford, and frankly don’t want to take, medication such as steroids or immunosuppressants. But maybe I have permanent damage or even cancer by now. I don’t know. That is a lot of money to me. I am also afraid of a colonoscopy, and now I’m even afraid of the prep. No one has done any kind of pelvic exam on me at all. I have a pap (which I haven’t had in over 10 years) scheduled in A ugust at the free clinic –they are that far booked. I guess they might notice something then.

Well, I have been looking at the Specific Carbohydrate Diet, since I started researching my problem this Spring. I want to try it, but I already have problems with low blood sugar unless I eat every couple hours, which is difficult since I don’t have an appetite, so I tend to snack on carbs (whole grain crackers/breads, peanut butter sandwiches, etc.) because they are convenient energy, and eat pasta type meals because they are cheap. I don’t have time to cook, and I can’t afford the kind of foods in the SCD. I hardly ever eat meat and ruin it any time I try to cook it. I don’t care for fruit, and veggies don’t seem to raise my blood sugar enough. I do take a lot of supplements, including B12 (which I discovered a long time ago makes a huge difference in my energy and metabolism), C, D, Turmeric, Boswellia, probiotics, etc.. I guess I am thinking, how can I ever plan menus, shop, and prepare for this diet, while feeding my kids also, and ha ving a life. I normally do not buy anything that isn’t on buy-one-get-one sale, and most days I feed my kids microwaveable frozen things because I am too preoccupied to figure out what to cook and how to cook it.

I realize that most of the people on here are probably young and otherwise healthy, and my problems seem relatively less significant for an older lady who should expect some health problems, anyway… but I am feeling especially sorry for myself, because I have already been through so much crap most of my life and I still have two young kids to raise and was really looking forward to finally getting on my feet and having a better life with them! Now I don’t even know how I will be able to work. There is no way I can spend 12 hr shifts on my feet, like this. Next month, I am achieving my long-time goal of graduating with my BSN, and I do not know what I am going to do. I can’t afford medical care. I can’t not work. I have already given up on being able to date and find another relationship, which breaks my heart because my kids want a dad so much. So all of this is really getting to me right now. I just feel overwhelmed and can’t even thin k straight about things anymore.

written by Amanda

submitted in the colitis venting area




27 Responses to I Might Have Colitis, Not Sure Yet

  1. Sharon July 9, 2013 at 6:24 am #

    I have never wanted to jump through the screen and hug someone so desperately. First of all, my mother did so much of what you have gone through for me and my brothers. She struggled greatly with depression but managed to go back to school to become a nurse while my bi-polar, alcoholic dad was institutionalized. As an adult, I will speak for your children and say thank you. Thank you for saving and changing their lives forever. I have more respect for you than you can imagine.

    As for your health, you already know this. You MUST take care of your body for your children’s sake. You are throwing around words like ‘cancer’ and haven’t got a clue what you are really fighting. Your daily life is exhausting and you don’t have a lot of fight left in you. I lived in SC for a long time. Where do you live? I may know of some support in your area. Keep asking for help at the clinic. There budgets and resources change regularly so you may be denied one time but accepted the next. Clearly, you need to know what is going on first but there are many drug companies that pay your prescriptions when you can’t. For example, Humira costs about $2000.00 per shot but patients may pay as little as $5.

    If nothing else, know that we hear you. We care. I will be praying for you.

  2. Amanda T July 9, 2013 at 7:40 am #

    Thank you so much Sharon. I feel your hug :)

    “You are throwing around words like ‘cancer’ and haven’t got a clue what you are really fighting. Your daily life is exhausting and you don’t have a lot of fight left in you.”
    You nailed it -This really says it all.

    I forgot to write about the worst part, which is that my kids have had to miss more and more of their activities because of me not being able to leave the house, and we hardly go anywhere or do anything anymore. Not being able to keep up with the yardwork and chores and everything piling up around here has been increasingly frustrating… but feeling like I am letting my kids down, now, and like they are missing out on their lives, because of it, is what has gotten to me so badly that it triggered this venting letter in the first place. Especially with homeschooling, you have to make the effort to involve your kids in outside activities and social opportunities, and lately, I just can’t even get out of the house most days.

    I live in the upstate area. I volunteered at a different free clinic for a couple years, and I volunteer with the homeless, for the past couple years. I work with the faith community nurse, who is based at our church. She is pretty knowledgeable of the area resources and has not been able to point me to anything except the free clinic for my county.

    I know I need to take care of this. Especially for the kids.

    Another symptom I forgot to mention is that I’ve noticed, for the last couple months, a constant low-grade fever. This really sucks in hot SC, especially for peri-menopausal females. Makes keeping up the yard in summer a real problem, and just adds to the difficulty of leaving the house.

    I so much appreciate you reading my story, for caring, and especially for your prayers. I don’t have a support system and I definitely don’t talk about this stuff with anyone. People probably think I’m just a slacker when I can’t make it to something or I’m late, and because I won’t schedule appointments for the morning. They probably think I’m lazy because I constantly have to sit down. I just want someone to know what I am going through, physically. Even if I have colitis, and let people know, it seems like people just think it is matter of a little discomfort and inconvenience. I never knew, until my symptoms started getting worse, how much of an impact a colon problem can have on your life.

    Sharon, your support and caring words brought tears to my eyes. Thank you.

    • Ann July 9, 2013 at 8:18 am #

      Dear Amanda, Your situation sounds so hopeless right now I am having a hard time replying but admire your will to fight. I do want you to know your life is not ending. Since you are not able to control the uc with diet, meds, and food, have you ever considered having your colon removed? I am living with the disease and keeping it pretty much under control at the moment and my quality of life is pretty good. My husband, however, had his colon removed at age 22 because his quality of life had plumetted and he was not given much of a choice but to have the surgery. It was either that or death. His qaulity of life, other than dealing with changing the colostomy bag, is fabulous. He is very active and has tons of energy. I hope I am not saying the wrong thing by suggesting the surgery but want you to understand life is not over after surgery, it will most likely get much better if you are facing that crossroad.

  3. Sharon July 9, 2013 at 8:03 am #

    I lived in Columbia, SC so a little farther south. I know most churches have deacon groups that either directly help with things like yard work or they have groups that do. Also, many churches have programs to bring meals. You don’t usually need to be a member as long as they have enough volunteers. My kids have definitely had times when they have sacrificed for me as well. You can’t feel guilty about that. In fact, I have found that my children are much more empathetic to the needs of other people and are very capable and independent. They are very resilient. When you are well you can “bank” experiences to use in your homeschooling curriculum and I would also suggest looking into a homeschool co-op group. Most people I know are in these groups to share strengths and social settings. AS I think of anything else, I will let you know.

    Sharon

  4. Amanda T July 9, 2013 at 8:41 am #

    Thank you Ann, you are spot on with that. When I was young and worked as an aide in a nursing home, having to empty and change bags, I would think, Wow, how can anyone live with that. But now, I know that I would gladly do that to improve mine and my kids quality of life, if I am not able to manage these symptoms otherwise.

    Thank you Sharon, I have not had a lot of luck with getting help from churches. In fact when I went through my divorce, I ended up leaving the church I was in because I now felt like a second-class Christian. I won’t go into all that, but suffice it to say, I find I get lot more out of serving others at the mission church I go to now, than I ever did from trying to be involved in the social-club type churches so common here.

    We were in a homeschool support group, but it was not very active, I didn’t really fit in, and it is more difficult for me to commit to set plans than to have my own flexible schedule. I actually volunteered as the park day coordinator for half a year and not one person showed up for park day that entire time :( I recently looked into finding a co-op in my area, but that is also another commitment, as they expect each parent to be very involved. Last year, it was not an option as the only one I could find met on a day I had on-campus classes. I definitely do need to move that to the top of my list, though, for my kids.

    Sorry I sound so negative. Like I said, I just feel discouraged and overwhelmed right now to the point that it is difficult to organize, prioritize, and make decisions.

  5. Joan H
    Hope July 9, 2013 at 9:33 pm #

    Hi Amanda – This is Hope and I really just want you to know there is help out there and you have support here and a place to vent and get some insights on getting the help you need. I think we might have a lot in common because I too homeschooled my 4 kids, had bowel issues for ever it seems, took care of my mother who was dying t the time while homeschooling, working part time, per diem or whatever I could to help make ends meet (luckily I’d already gotten my degree BSN out of the way), was very involved in church and even helping to start a church outreach, very active with volunteering…finally having to come to terms with colitis in a similar way to you. I am sorry for all you’re going through, and I want to try to be brief and help in some way. I really believe you need to have a colonoscopy to diagnose the problem you’re having. Colitis, crohn’s, you know the list. It is important to know what you’re dealing with. Diet is good to address but also get the diagnosis so you can go forward clearly and with direction. Most hospitals who do colonoscopies and colonoscopy clinics have sliding fee scales or charity/grant money when you meet with the MSW at the office/hospital or apply to the grant program in the MSW dept. Please look into that. Also, in the community there are grants and help through the CCFA and medicaid programs if you qualify. If it becomes a situation where you need a sliding fee scale, consider it as a gift to you and your kids – I KNOW how hard this is – but please, you are so important. Besides the other reasons you might be having depression, there is also physiologic depression that is caused by the interruption of seritonin across receptor sites in the GI tract (90% of seritonin receptor sites are in the gut, not in the brain the latest research is showing) – so, heal your gut with proper treatment, and your depression will also be affected positively too. I’ll be praying and thinking of you. You’re not alone! There are options! Keep in touch – Hugs, Hope

    • Amanda T July 10, 2013 at 8:17 am #

      Hey Hope,
      I was hoping you would see my post. (I had briefly replied to yours). I could tell we have a lot in common when I read your post, but I did not realize you homeschooled as well! I was interested when you talked about the serotonin receptors in the gut, and is something I will keep in mind, but yeah, I think my “depression” is really more like discouraged and overwhelmed… more of a situational depression. I have had physiologic-based depression in the past, which I found was due to vit D deficiency. I think my colitis is limited to the rectum and possibly sigmoid, by my symptoms.

      The hospital sponsorship for the colonoscopy fell through because of the money I had saved to pay my college bill. So I won’t qualify for help. I will just have to use that money toward the colonoscopy. I just hate to do that because I know I can’t afford a doctor or drugs or any other medical care, anyway. Plus, what if most of current problem is due to the prolapses and rectocele which I can’t afford surgery for, anyway -that is elective surgery, I am told.

      You are totally correct. It is important to know what I am dealing with. I need to try harder to get a better doctor, and get this sorted out. I guess i just keep hoping this is temporary and things will somehow resolve on their own, but it just seems to get worse.

      We seem to have a lot in common, and I really would like to stay in touch with you.

      Amanda

  6. Don
    Don July 10, 2013 at 12:00 pm #

    Hi Amanda. You are an amazing and super strong and courageous woman! My god! I thought I had it bad. I give you a lot of credit for what you have accomplished. I wish I could help you. The SCD diet really worked for me but I totally understand what you said about shopping and cooking and the expense. I have been on it for 5 years and it seems like my life is working and cooking. Hopefully someone here can get you in touch with someone there who can offer assistance. Reading your story just blew me away. I sure appreciate your struggle and it just goes to show that no matter how bad you think you have it someone else has it worse. Good luck and I hope you find your way back to good health.
    Take care,
    Don

    • Joan H
      Hope July 10, 2013 at 2:05 pm #

      Your encouragement is good :)

    • Ann July 11, 2013 at 7:59 am #

      Hi Don, How is that probiotic working for you? I think I am seeing progress but I’m not the most patient person. It has not even been one month yet. The blood is subsiding but not gone yet. I am taking Bev’s cocktail of Probiotic with L-Glutamine in the morning and I just started Astaxanthin a few days ago. Bev seems to think the Astaxanthin will get rid of the blood that is lingering. Do you get that funny taste in your mouth when you know your colitis is acting up? Just curious.

      • bev July 11, 2013 at 8:06 am #

        I sure hope I’m right about the astaxanthin…it is a very powerful anti inflammatory.

        :)

        • Ann July 11, 2013 at 9:15 am #

          I hope so too. Will keep you posted “Dr.” Bev! ;)

      • Don
        Don July 11, 2013 at 11:44 am #

        Hi Ann! I have never noticed a funny taste in my mouth other than when I was on meds. I have been taking the probiotic and L-Glutamine for 17 days now and I have had noticeable improvement mainly in the number of times I have to go and the urgency. I am still seeing some blood and mucus. I am also strictly on the SCD diet. I am constantly tweaking the diet according to how I feel. I had to stop nuts, peanut butter, honey, salads, raw vegetables, and all vegetable skins. This condition is so cruel. As soon as I say I am doing better I have an accident. I think it knows how to get to me mentally. I don’t let it bother me too much and just take it in stride. I also try not to talk too much about it or get too excited when I am doing well. I have only gone twice here at work today and that is such a relief. Uh oh! Gotta go! ;)
        Don

  7. Amanda T July 10, 2013 at 12:55 pm #

    Hi Don, that is really kind of you, and made me smile :) Not as much as your FT post though. I found your post and checked it out, including the story of the FT from your wife. I was doing okay until I got to the part about having to strain it so as not to clog up the turkey baster. LOL
    Well, entertainment value aside, I hope those help you.
    I have a lot of admiration for people that cook. It is just not something that comes natural to me. I did it for many years, but it took all my time, and it was not exactly gourmet. What I really need is SCD frozen microwaveable meals. Someone could get rich starting a business for that.
    I see you are a musician. I play drums. Music is great medicine, isn’t it -makes everything feel better.
    Thank you for your very encouraging words.
    Amanda

  8. Joan H
    Hope July 10, 2013 at 2:32 pm #

    Hi Amanda – I want to encourage you to hang in there, one step at a time. You’ve been through so much already, and you’ve also done so many amazing things and been such an amazing Mom through all of this! I know how hard homeschooling was (my kids are now 15, 17, 19 and 21 so two are in college) and for you to be able to continue to homeschool — that alone is amazing! Throw UC and all these other things on top of that, your own schooling, and you must be Super Woman! So, really, hang tight!
    I am not sure where you live, but can you see if there is a local Crohns Colitis Foundation of America (CCFA) Chapter where you live, or even in the nearby vacinity, and let them know what’s happening and see what they can offer you? Even if it’s “piece meal” and you get a little help here, and a little help there – rides, transportation, someone to help with the kids when things are rough, money for medical costs, medical vouchers – even if that happens a step at a time, it’s a step closer to feeling better for you. Even if you decide to pursue diet alone and no medicines, or a combination of both, or surgery if that is something a GOOD GI doctor recommends (as Ann had mentioned) – one step or piece of the puzzle at a time is fine. It’s moving in the right direction. And along the way, you’ll meet other UC and Crohns fighters like yourself, like me, like everyone on this site, that will make your life richer and better – the same way you make mine and ours richer and better…In my area, the CCFA seems to be less active locally right now, but if you find that’s the case, try places like local health provider sites, low cost health care sites (we have one here that I’ve brought my kids and myself to where the doctor takes no money at all for the health care, doesn’t charge for medicines if you need them, helps with transportation and food for people with low to no income. He and his staff are truly amazing and I’ll tell you more about that if you want to knwo, or send you a link!) In any case, in most cities, or around most cities, there are free clinics, sliding scale clinics and most hospitals – in fact, all the ones I know here – have a charity care program set up for people who cannot pay for procedures like colonoscopies (like who can pay out of pocket for these things???), or who fall between the cracks with health care coverage, or have numerous other reasons why they can’t pay. I know I probably sound like I’m pushing a little bit, but I really read your story and you touched my heart. So…. I KNOW the drill, having lived at least some of it – I know everyone’s story is different, but I know the next question that comes along is: “Even if I get a colonoscopy, I can’t pay for treatment and dr’s afterwards”. But let’s take it one step at a time and find out what the root cause is first. In the meantime, changes in diet will help very much, I think, and if you can start with small steps of changing your diet with what you already have on hand in the house if that’s possible, then start there. For example, I HAD to have my cup and a half of coffee in the morning to wake up…well, guess what? The coffee’s gone, my gut is better because of it, and I saved $10 a week on the coffee I was buying that was actually hurting me :) I’m rambling now, but keep checking in and keep staying in touch and asking questions and sharing your own advice too. You have a lot to give, and I think now is also a time for you to receive a little back in terms of good things coming your way. Hugs – Hope

  9. Amanda T July 10, 2013 at 5:20 pm #

    Thank you Hope, I am going to a free clinic, the only resource available in my are.. but kind of came to a standstill when the colonoscopy sponsorship fell through. The doc there is a retired surgeon and doesn’t seem to take me very seriously, apparently, since I can’t get a pelvic exam when I have told him I have uterine and rectal prolapses. I guess I am just confused at this point, from being overwhelmed and not having anyone to talk to about this. I need to make some decisions and just be ready to go into debt with medical bills, which just kills me because I have never had a credit card or car payments… I HATE debt. And then just push it until someone figures things out. I just figure with my luck, I will have 20 tests till they figure it out and probably puncture my colon and who know what else.

    Anyway, now I am rambling. I haven’t been able to find a support group around here… Does anyone know of an online forum?

    Coffee…. yeah, switched to decaf a couple months ago. Even quit my evening glass of wine for a while, but thank God it didn’t make a difference…lol.

    • Joan H
      Hope July 10, 2013 at 6:26 pm #

      I’m sorry you’re having trouble finding what you need in your area so far Amanda. I know getting into debt is another stressor – I wish there were some easier answers coming your way, and pray there will be soon. I felt the same way you do – like it always takes the drs (or whoever) so long to figure out my symptoms, what if they puncture my colon, what if the test gets mixed up, what if they can’t figure it out, what if I have to live like this the rest of my life. I think many people, if not most, as I read on this site have felt the same way. I’m reading Adam’s book right now, which is really helping me see that all these thoughts are similar for all of us. It’s helped me a lot to see I’m not alone, that other people are in the same boat, and this site is helping me get ideas and research and just connect. So stay in touch and don’t give up. Sometimes I want to give up, but I’m gonna hang in there too – Take care Hope

  10. sunnycape July 11, 2013 at 9:52 am #

    Hi Amanda, I really feel for you… but I think you are stronger than you believe you are. Just reading what you have been through and what you are going through makes me think of a warrior woman! Please hang in there and I agree with Hope – please get a colonoscopy – it’s really vital to know what exactly your diagnosis is! You could have Crohns, UC or heaven-forbid Cancer but you need to know. And have faith. If you go to a recommended doctor for the colonoscopy, you never know, one thing could lead to another and he/she may be able to help you according to your pocket or point you in the right direction. I’m from South Africa and the government hospitals here aren’t bad. The gastroenterologist I used to go to privately, also worked in the government hospital. I had very little health insurance and he always gave me a reduced fee and told me that in the worst case scenario I could see him at the hospital. Explain your circumstances. Anyone with a heart would not turn their back on you. Find the right doctor and have that colonoscopy even if you first withdraw your savings, keep it under your mattress and then apply for the colonoscopy grant again! It’s dangerous not to be treated.
    I admire you for everything you have had to deal with. It certainly takes tremendous courage.
    God Bless x

  11. Natalie July 11, 2013 at 7:35 pm #

    Hi Don!

    As per Bev’s advice, I weaned myself off Lialda and started taking a probiotic in April. In June, I started taking the Astaxanthin and on 7/6 started the L-glutamine. I was seeing some slight blood and decided to try the L-glutamine. So far, no blood and it’s only been 5 days since I started the L-glutamine. I am just like you Don. I don’t let this damn disease get to me and take it in my stride. I just don’t dwell on anything. I do believe I have been in remission for quite a few months now (despite the occasional slight blood when wiping….nothing in the toilet). I no longer have the urgency which is WONDERFUL! I am not on any special diet and am able to eat ALMOST everything. I love popcorn and corn on the cob but haven’t even attempted eating either one. I hardly ever have any alcohol anymore either. I was never much of a drinker anyway so I really don’t miss it. I would, however, LOVE to eat some nice hot buttery salted popcorn!!!! Thanks for the chuckle….had to laugh when you said….Uh oh….gotta go!!! Too funny!!! All kidding aside, hope you have minimal BM’s and that the probiotics and L-glutamine kick in soon. :)

    • bev July 11, 2013 at 9:47 pm #

      So happy to hear this, Natalie…so happy…

      :)

  12. Joanna July 11, 2013 at 11:52 pm #

    Hey amanda.

    Have you looked into any clinical trials in your town? Clinicaltrials.gov would be a good place to look. You would get free treatment that way.

    Scd definitely requires a ton of cooking and lots of animal products! I ditched veganism so i could start it. It has helped but hasnt been a magic cure all. I still struggle with lots of symptoms and it will be one year next month that ive been on it.

    Fecal transplant would be the cheapest thing to attempt, especially since your kids could donate if they are healthy. I tried it but got a lot worse so its hard for me to recommend it with a “give it a shot” attitude. It a risky procedure and you can transfer infections that way.

    Who knows though. Maybe you dont have UC at all and its just IBS. I hope you can find something that helps you. Its definitely a trial and error disease. What helps me could make you ten times worse. Gotta go with your gut.

  13. Amanda T July 12, 2013 at 7:07 am #

    Hey Joanna,
    I did think it was IBS for the longest time (when I wasn’t really thinking much about it), but the few people I mentioned it to would tell me IBS doesn’t cause blood. And blood has been the most prominent symptom, from the beginning. I have had blood almost every day of my life for 20 years, except for when I started 4 gram fish oil/day. That cleared up the blood for months, but then when I started the flare up of pain and other symptoms this spring, I quit the fish oil and everything else, thinking if I am going to get diagnostic tests, I want them to see what is going on when I’m not treating it.

    Funny you mention the FT from my kids. All three of my girls have chronic diarrhea issues that have not been able to be diagnosed.

    I will check out the clinical trials. gov. Thank you.

  14. Amanda T July 12, 2013 at 7:10 am #

    Thank you Sunnyscape, I appreciate all your encouragement and kind words. :)

  15. Natalie July 12, 2013 at 8:29 am #

    Bev,

    Thank you so much for the wondeful advice. You not only helped me…but so many people who read this newsletter. You are the greatest! :)

    Amanda,

    I wish you a lot of luck with all your problems. You are certainly a strong woman and have been through so much. Please try the probiotic, Astaxanthin and L-glutamine combo as Bev has advised so many of us to do.

    • bev July 12, 2013 at 8:33 am #

      Natalie…that is just too beautiful and wonderful…the best thing in this world is helping someone…anyone…

      Thank you Natalie.

      Thank you.

  16. Amanda T July 12, 2013 at 8:32 am #

    Natalie,
    I will definitely try those. Thank you
    Amanda

  17. Natalie July 12, 2013 at 9:40 am #

    Dear Bev and Amanda,

    You’re both very welcome! Best of heatlh to you both and ALL UC’ers!!!!!

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