Ulcerative Colitis Tips


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My Daughter Was Recently Diagnosed with Ulcerative Colitis

My daughter was diagnosed with Ulcerative Colitis in August 2014.

This seemed to come out of no where.

We thought she had a stomach bug, or food poisoning that turned into bloody diarrhea in days. At the hospital they admitted her due to her blood loss and did a scope. The doctor showed us the pictures of the ulcers but I was too shocked to comprehend the magnitude of this disease. During her time in hospital they tried all the usual meds, nothing was working and she lost so much blood that she needed a transfusion. There were days when I didn’t think she would make it. She lost so much weight and she was tiny to begin with. She was hospitalized for about a month before they began remicade which has brought the inflammation down. She receives transfusions every eight weeks and began imuran. She is still so sick, and nauseous all the time. I live in constant fear of another severe flare. I don’t sleep, check my phone at work about 100 times a day and I find myself constantly checking in to see how she is feeling. I know this has to become our new “normal” but I’m terrified of what the future holds for her (she is 21) and of losing her. She never ever complains or bemoans her situation and I’m the one freaking out.

I don’t want to stress her out and I’m trying to be as brave as she is but its so difficult.

I have become super sensitive to all her aspects of daily living. I know how many times she goes to the washroom, what she has eaten, the colour of her skin one day vs the next. I don’t know how to just “deal” with this and I just want her to be okay. It feels like all our lives have changed forever with this diagnosis.

written by “Scared Mom” Joanne

(about Joanne: My 21 year old daughter was diagnosed with uc four months ago. She is one of the strongest, bravest young women I know. She is my hero and I only wish I had her strength and grace in the face of this illness.)




29 Responses to My Daughter Was Recently Diagnosed with Ulcerative Colitis

  1. Adam
    Adam December 17, 2014 at 11:07 pm #

    Dear Joanne,

    In reading your story, I think it would be an incredible help for both you and your daughter to get in touch with another young woman in your local area who also has UC.

    This is not an easy task by any means, but I think it would be well worth it. Reaching out and finding a real life person is an amazing experience when it comes to ulcerative colitis people (and parents) interacting in real life. Internet is great, but its only the interent at the end of the day.

    I think that if you met another mother for example who’s daughter has UC, you would probably feel more comfortable knowing that UC isn’t going to be the biggest thing in your life’s forever. The first year after a diagnosis is almost always the hardest for everyone, but things do become much more manageable afterwards. And my guess is that another mother would easily be able to explain this to you. (someone who’s been in your exact situation but also made it through past the hard times UC can throw at family members)

    My advice would be to find another family to meet. If your daughter is up for it too, then great. If just you, that’s fine as well.

    You could start the search by letting your doctor know you’d be interested in meeting another mother of a UC’er. That might work.

    Or, simply by letting your friends know what you’re hoping to do. Maybe they know someone or their friends know someone in a similar situation with a daughter with UC… It’s totally possible.

    Either way, I wish you and your daughter the best. For sure things will become more manageable in the future for both of you and returning to a happy and less stressed out life is not too far away.

    -Adam

    (forgot to mention, your local Crohn’s and Colitis foundation group may be a resource as well, not sure if that exists where you live though)

    • Elizabeth December 18, 2014 at 9:10 am #

      Support groups may help with connecting with other moms in the same situation. http://www.ccfa.org/

    • Coralie
      Coralie Eichler December 18, 2014 at 10:49 pm #

      Hi Joanne, I hope you get this email. I get the feeling I am responding to Adam but at least he will know what to do with it. I have had UC since 2008 and tried every drug the hospital could stuff into me. Nothing helped or only temporarily helped until I started on the Specific Carbohydrate Diet, mentioned over and over again by people on this website. At first I wasn’t prepared to change my diet and so ignored references to the SCD but after a bowel accident in front of my friend’s teenage daughter (humiliating) I was desperate. The specialist was talking about removing my colon. So I started Googling again. There it was again, the SCD. So I went to the library to see if I could get a book about it called Breaking the Vicious Cycle by Elaine Gottschall. Sure enough there it was. I started on the diet and within days I was normal. I have been on the diet for two years this coming February without batting an eyelid. I make food to suit myself using the foods that are on the legal list, which can be found on the website of the same name. Don’t hesitate. Put your daughter on the diet. Neither of you will regret it. It’s not hard because once you are pain free, blood free, diarrhea free, constipation free and just living life again, you will see that it is all worth the sacrifices. Because it is Christmas, I have had a few things from the illegal list whilst attending functions but generally I stay strictly on the diet because I enjoy such good health. You can also buy the book from http://www.thebookdepository.com for about $31.00 and shipping is free worldwide.
      I wish you all the best and by the way, if you can get hold of lactose free milk or yoghurt it will make her life a whole lot easier. I wish I could say more to convince you but I was telling the doctor that my bowel was going to drop dead and this diet turned my life around. Who would have thought it was so easy. I am convinced that those people who say the diet doesn’t work, didn’t really stick to it. I was diagnosed with Pan Colitis (bowel 100% affected). I would love to hear how it all goes for you.
      God bless
      Coralie

      • Coralie
        Coralie Eichler December 18, 2014 at 10:51 pm #

        Hi Joanne again, I forgot to say that I am not on any medication now and have no symptoms.

        • Nora November 9, 2015 at 3:29 am #

          Please – what kind of diet

          • eva wheatley November 9, 2015 at 1:21 pm #

            My daughter also was diagnosed with UC. Landed in hospital with a major flare was told she would have to have her entire large intestine removed and be on biologicals for life. I immediately put her on the Specific carbohydrate Diet (SCD while still in hospital as everything they fed her caused more pain and bathroom trips.I also joined the yahoo list for SCD. When she left the hospital she was on prednisone and Imuran. She was so weak she could barely stand. The dramatic change in her health within a couple of months was short of miraculous. Three years later she is healthy, still on SCD and has been drug free since the end of the first year. The key is the diet and if necessary the biologicals at the beginning to quell the inflammation so the diet can heal the gut.

  2. Haadi December 18, 2014 at 3:33 am #

    Hi Joanne – very sorry to read this news. Recently I went through a flare triggered by vegetable oil. What got me back on track was mixing l-glutamine powder and pure good quality bovine colostrum powder and taking it first thing in the morning an hour before breakfast. Also gluten free diet. Please keep well & pray you find something that works for you.

  3. Brent
    Brent Jones December 18, 2014 at 8:10 am #

    It’s miserable but can be managed. Just find the right balance of diet and meds. I take Mesalamine. I am also now living in Thailand and have stopped eating processed food (it’s easier to do in Thailand) but you can still eat healthy in the States.

  4. Diane December 18, 2014 at 8:17 am #

    Hi Joanne – I am so sorry to hear about your daughter. I was diagnosed a little over a year ago and it has been a very rough road. The flares kept coming fast and furious and my doctor kept prescribing stringer and stronger medications. My mother also has it and has been down the same road, and has kidney disease as a result of these medications – she has been on them for many many years. Well a few months ago I decided forget it, I am not taking anything stronger than Lialda and am going to attempt to try to control this with diet. My doctor advised against it. I started a Paleo diet (grain free, dairy free, gluten free etc), as well as the probiotic Saccaromyces Boullardi (4 With breakfast and 4 with dinner) and stopped bleeding within 2 weeks and have been in remission for a few months with no issues whatsoever, I now take 4 Lialda per day and 2 Saccaromyces Boullardi with breakfast and 2 with dinner. I feel like a whole new person. I hope to be off the Lialda at some point as well. I hope this information helps.

  5. jeanne grossman December 18, 2014 at 8:18 am #

    Have found l-glutamine to be helpful along with a strong dose of vsl #3, four to eight packets a day , as recommended

  6. CIndy December 18, 2014 at 8:52 am #

    Joanne,

    I can relate as our son was diagnosed when he was 13 years old with the worst case scenario of UC. Had never been sick before that…just started with blood in stool. He is now 13. We went through the same agonizing time in hospital with not responding to meds. Remicade was a very scary thought to us. It was so hard to watch your child suffer and not complain. Vomiting and bloody stool receiving Morphine while sitting on toilet. Remicade was used and we did the every 8 wk trip to hospital. We just stuck with Remicade no other drug was added but I still was concerned with this drug. I read everything I could….we were so excited about the studies with fecal transplant but our Childrens Hospital wouldn’t even talk about it…I said wow we are ready to use rat/mice in Remicade but not a natural biologic? Anyway I was lucky to have a friend that was a RN that had UC also but had decided in the field she was in to not be on immune suppressing drugs. I also had read that you could build up immunity to Remicade. Anyway this friend of ours decided while not in a flare to do the J-pouch surgery. She said it was the best thing she had ever decided to do. Although our son was young we too thought if we could buy a little time with Remicade we would and when healthy if he was for it (he is very mature) we would give him the option as well. 8 mths later our son did build up an immunitity to Remicade and we had to fight with Childrens to do the immunitity test…they wanted to give it earlier. We found out he was immune. Long story…but he was in a terrible flare…Drs kept saying they wanted to do this test and that before they would try Humara. We were told before to not let a flare go more than 5 days. Anyway he lost 21 lbs and had nothing to eat. They gave him IV fluids only no nutrician. He was too sick to move or we would have transferred. We never left his side and a good thing, he ended up with a toxic mega colon and had to have emergency surgery to remove. So be the advocate for your daughter and if your gut is telling you something push for it. I can say it was the worst time to have a colon taken out and by the grace of God he is still here and healthy. The surgeon we had was great and we are greatful he was on call, but we did not know that at the time. Our son has an illeostomy but feels so good and is so healthy. He deals with everything so well. He was 12 when the surgery took place and is now 13. Even under the surgery emergency the dr left a little piece so that if my son decides to do the next steps for J pouch he might be able. We were devasted for our son…but he is fine with it and says he doesn’t know if he wants to go thru J pouch but will think about it. There are much worse things we realize and are greatful to have our son. Verses Crohns if the colon is removed the disease is gone. We tried diets, everything under the sun and what seems to work for awhile goes away usually at some point. This is not meant to scare you but to let you know there is an option when and if ready to rid your daughter of this terrible disease. My son would talk to anyone if she would need to talk to someone. So would our RN friend. Take care and God Bless.

    • k December 19, 2014 at 4:28 pm #

      Cindy,

      I feel for anyone, especially young people, who are suffering with uc. It is such a horrible condition to live with, especially when in a flare.

      I was quite a bit older (32) than your son when I had toxic megacolon and had the surgery that afternoon. So I have had an ileostomy for 40 years now. (J pouches hadn’t been “invented” yet.) There have been a few challenges along the way, but I have had years with no problems. Whatever your son decides, to stay with an ileostomy or go for a j pouch, I wish him many decades of good health.

      Wishing him, and all others all the best this holiday season.

  7. suzie December 18, 2014 at 9:29 am #

    Joanne,
    My 11 year old daughter Rose has had UC since she was seven. Please do your daughter a favor and get her going paleo or scd on her diet. Get her off all processed foods! Have her begin with home made soups made in a crock pot. Once things calm down introduce more fiber and nuts or nut flours slowly. For now please take her off dairy, wheat, eggs, beans. If she’s not having issues with fruit or sugars, have her try a fruit fast for 15 hours every other day. From the time she’s had dinner the night before have her take a rest. The purpose is to rest the g I tract. Go to bed. Have some fruit that is easy for her to digest, can blend into a smoothie. 15 hours later can go back to eating proteins. Also have your daughter take it easy on starchy foods, they turn into sugars and feed the bacteria in your gut. Get her on a good proobiotic. Good luck. You can Look up my posts in the parent section, “stop the bleeding” . We’ve managed to almost get Rose back to normal. Best of luck!

  8. Joanne December 18, 2014 at 9:41 am #

    Wow! Thank you all for the comments, suggestions and kind words. I did not expect any response really.
    Since I originally wrote the story my daughter has had another set back.

    She was on a steady 2 week incremental increase of her imuran as prescribed by her GI. Unfortunately with the latest increase she became very ill. We also found out that three months post flare her hemoglobin levels are still very low. She had a blood transfusion in hospital when she was admitted and her levels dropped to 62 and she has been on high doses of iron since, but no real change.

    The Doctor can’t tell me why her hemoglobin isn’t increasing, but we do know that she is not bleeding at this time. I am researching other hemoglobin boosting options and came across wheat grass juice. Does anyone have any experience with this? I like that it is natural with no known interactions with drugs, but I can only get it in frozen form?

    Thanks again for the support, and for reaching out, it means so very much!

    • Laura December 18, 2014 at 12:02 pm #

      Hi Joanne,
      First of all I want to say how lucky your daughter is to have you. I was diagnosed with UC 4 years ago and my Mom has been my rock. I know she worries about me and I try not to worry her..but knowing she is there when I need her is really what helps me the most. UC is a rollarcoaster with good times and bad. I try to make a conscious effort to focus on the good and improvements and know that things will always get better during the bad times. You said your daughter is not bleeding right now..that is great! I really can’t give you any suggestions for increasing Hgb and I’m sorry that she is feeling unwell at the moment. Immuran can do that…the first few years with this disease is rocky but have faith that everything will start to sort itself out. I know that this doesn’t give you any practical help but it can be maddening trying to “fix” things no matter how hard you try. I wish your daughter and you all the best. She sounds like a strong girl and she will get through this!

    • eva wheatley December 18, 2014 at 12:44 pm #

      Hi
      I am a mother of an adult daughter with UC.. When she was first diagnosed we searched for any and all info we could find on UC. Unfortunately the crohns and colitis foundations only offered info on traditional pharma drugs as their mandate is to raise funds for research. So I scoured the internet and found this web site as well as the one for the specific carbohydrate diet (SCD). Had I found the auto immune paleo protocol I may have started that. We went to a few naturopaths for supplemental help and then did the SCD diet. We saw improvements very quickly, in fact my daughter after a few months she declared she was “cured” and slowly went back to eating the standard American diet again (SAD) and lo and behold she ended up with a flare from h-ll. She was hospitalized for 2 weeks lost over 20 lbs and nothing the GI’s did improved her condition. They told her she could eat anything as diet has no role in digestive diseases. By then I knew better and while in hospital I put her back onto the intro stages of the SCD diet. In hospital the GI’s told her she had 2 choices, have her entire large intestine removed or go on biologicals for life. They started her on intra venous prednisone and Imuran and planned on adding Humira before she was discharged. She was devastated, in pain and bleeding all the time. I took her to a specialist in digestive disorders ( Ontario Canada) they day after she was discharged and she was put on a slew of supplement, fresh vegetable juicing and a strict SCD protocol. She refused the Humira but did take the prednisone and Imuran. Again within weeks we saw improvements and within the first year after she was discharged she was off all drugs. She is the healthiest she has been in years and we owe it to the diet that has removed all sugars, grains, dairy, all commercial foods and all processed foods. Yes it is a lot of work making food from scratch daily but it saved her life.
      At one point her iron levels were very low so she had a couple of iron transfusions and she has been fine ever since. Iron supplement do more harm that good for people with digestive disease.
      I urge you to check out the book “Breaking the Vicious Cycle” and http://www.wikiscd.com and http://www.pecanbread.com as well as joining the breaking the vicious cycle yahoo group. There is a wealth of very helpful info from people who have been and are going through what your daughter is going through now. We have learned so much from this very helpful group of caring and supportive people.
      Some of the most beneficial supplements for digestive diseases is vit D and zinc, L-glutamine and colostrum, B12 methylcobalamine sublingually . If you would like more info on the supplements or our journey to health thus far ( 2 years) after hospitalization, I would be glad to help,
      Some times it is necessary to take the meds to help the body reduce the inflammation while proper nutritional changes help the colon heal. Eva

    • Rico December 18, 2014 at 4:58 pm #

      Hi Joanne,so sorry for the bad news but hang in there, it’s gonna be a long road but things can get better,I also tried all the drugs and diets and even remicade till I gave in and got the jpouch surgery in 2 steps in 2012 and my life has been great?i eat and drink all I want,and anything I want,my control is good I can go for hours not having to run to the can but be ok when I get there? I reall recommend it,and I think every one should who is suffering should do it,I can go 6 hrs after I eat my 1st meal?go once in the middle of the night,if I eat healthy I’ll go Mabel 4-5 times the whole day,we’ll best of luck!! Rico.

    • Dianne December 18, 2014 at 7:20 pm #

      Dear Joanne,

      I have UC also. I am 68. For months my doctor had me on meds and said to me I have two options. Take out my large intestine or go on Humeria which has horrible side effects. I went on the web and found out about Probiotics and L-Glutamine. I have been on them for 6 months. After a couple of weeks of taking them I gained back all my weight and stopped bleeding. I had lost 35 pounds and put it all on after taking these over the counter pills. I had been bleeding very badly and also stopped after the first couple of weeks. My partner was so frightened for me and now thanks the lord for me finding out about these pills. I will pray for your daughter and you. I hope you give them a try.

  9. jenelle December 18, 2014 at 10:21 am #

    Dear Scared Mom,

    This may sound a little silly, but perhaps take your daughter to see a naturopath?

    The things they can tell you about your own body that a regular medical doctor can’t, are astounding.

    My naturopath has changed my life.

    I have suffered from Severe Crohn’s Disease for 17 years. With the help of my Naturopathic doctor, I feel better than I have since I was 10 years old.

  10. ag_forum December 18, 2014 at 11:55 am #

    I was diagnosed with colitis about three and a half years ago. Started with meds, prednisone and sulfasalazine in particular. Long story short: I found a herbalist and now control my illness with diet (modified paleo) and herbal medicines. I implore you to consult with a herbalist. It’s not even necessary to quit the regular meds while taking the herbal meds; they can work in conjunction. I however am off the nasty drugs and am so glad for it. Final note: it’s important to find a herbalist that uses high quality herbal meds, such as those from Mediherb.

    • ag_forum December 18, 2014 at 12:33 pm #

      Additional notes: For reference, the herbal concoction that I’m on consists of the following: turmeric extract, golden seal, hemidesmus, baical skullcap, marshmallow, and echinacea. Also, I find supplementing with zinc and vitamin D greatly helps my energy levels. Liquid forms work best for me.

  11. Sam K
    Sam K December 18, 2014 at 11:58 am #

    Hi Joanne,
    I am a 10 year UC sufferer. I was in the same place your daughter was in after my first severe flare (I was 25). I was ALWAYS a healthy kid, never got sick and then all of the sudden I was ridden with a disease that was not really discussed publically at that time. My mom was the same way you are. I was not living at home at that time but she was beyond concerned as I was dropping POUNDS a week. At my lowest, I was 136lbs on a 5’11 frame and my mom all but gasped and cried when she saw me.
    We tried to UCD diet but I was getting more and more sick. It turned out I was food intolerant to ALL the foods on the diet: the almond flour, the dairy, etc.
    Has your daughter been food tested? Sorry if I missed anything pertaining to that in previous posts.
    Also, I will say, for the sake of your daughter…. do not ignore the problem but do not make it the center of the universe either. My mom was like you. Calling every day and asking how many BMs I had. What they looked like. How I was feeling. How much weight I lost. It got to be so upsetting that I had a meltdown and told her that her being in my chili 24 hours a day wasn’t helping. Just try to treat her normal and make her as comfortable as possible. Try to get her mind off it without making it the only thing you talk about. She will heal; she just needs to find her magic solution of drugs, diet, etc. Hope that helps! Trying to give you the perspective from the other side of things :)

  12. Wendy December 18, 2014 at 12:07 pm #

    Dear “Mom” – I feel for you as I have been there. My 18 yo also came home from a school trip and I was convinced he had picked up a bug of some sort. But it was UC and we began a long road of treatment, including imuran, remicade, prednizone, salofalk, etc. etc.

    Like your daughter, he lost a lot of weight, looked really sick, required frequent transfusions and could barely get himself up a flight of stairs without quickly tiring as he was so anemic.

    I was horrified when the docs suggested removing his colon. He is so young! But that was three years ago and probably has been the best option for him. He went through three surgeries over three successive years, and has had an internal J-pouch created which he is very happy with after two years of ostomy bags.

    He is now healthy and active and much happier. I really think he has chosen the best course in order to permit himself a full and happy life.

    I hope your daughter rebounds well and I’d be happy to answer any specific questions you might have.

    Fingers crossed for you!
    Wendy

  13. eva wheatley December 18, 2014 at 12:48 pm #

    I forgot to mention that there are IgG food intolerence tests that can be done to see what foods your daughter has sensitivities to. Have her keep a daily food journal to pinpoint any foods that do not agree with her.

  14. Jen December 18, 2014 at 12:53 pm #

    As someone’s daughter living with UC I can tell you I don’t wanted to be treated like I am sick all the time. I don’t wanted to be asked how I feel everyday or if everything is ok. I just want to be treated like a normal person. I am well aware that I am sick and don’t need to be reminded of it all the time. We know that all moms worry but worrying doesn’t change or fix problems it only creates more stress. So while I know it is difficult try not to count how many trips she makes to the bathroom or what her coloring looks like. She just wants to be a regular person.

  15. Jennifer F. December 18, 2014 at 2:56 pm #

    Wow! Well Joann let me first say that as I read your original post, I thought someone posted my story without telling me. My daughter is now 12, and had her first flare Dec 2013, at age 11. Of course, we had no idea it was “a flare” as we too thought stomach bug and then the drs thought ecoli. Well, after 4 days and every test available to rule out, we got the news of UC and a 15 day hospital stay, with 3 blood transfusions. Steroids did nothing and at 5 days after diagnosis we had 2 choices, Remicade or surgery.

    5 days later we took a medical flight from St. Louis home to TN and started Remicade. We have made some progress, but not much. We have been on modified diet all year, but have limitations because she has many food allergies we’ve know about her whole life. I too just like you have been the in your face mom, questioning everything and researching and worrying…. Just this October she lost 13 lbs in 8 weeks while inbetween treatments….. But, here’s what I can say… allow your daughter control on her own and to come to you when needed or wanted. Be her advocate, teach her to be her own advocate (even as an adult) and be there as 100% support. The more we question, ask, and get in their business they seem to pull away because whether 12 or 21 they just want a normal life without the disease.

    I realize I am still new in the IBD world, but I have a son with special needs and I am a special ed teacher and special needs family advocate…. so I understand the need for any person with any “condition” to take control of it in the best way for them, with full support from family that helps them feel normal.

    I’m not in a position to give medical advice, I’m still learning, but reach out to CCFA in your area or national chapter and get her connected with the 2×2 program. There are many young adult support groups out there where she can connect on her own terms.

    Best of luck to you and remember….. it will be better tomorrow then it was today because you learned something new to make it better.

    Happy Holidays,
    Jennifer

  16. Alla December 18, 2014 at 5:34 pm #

    Hi Joanne,

    I feel your pain as a mother since I am in a very similar situation to yours. My daughter got sick when she was 23 year old, which was 5 years ago. This disease came out of nowhere and in matter of a few days her situation got so bad that the very first time she gotten into hospital by emergency, the doctors thought to remove her colon right there. Her whole colon was full of ulcers and they were afraid it will be perforated if they wouldn’t remove it. She was prescribed steroids (Prednisone) that somewhat helped her a little. After being in a hospital for a week, she was discharged with instructions on how to taper the steroids. I guess her tapering was too quick and in two weeks she got into a hospital again with the same problem. The doctor pushed us for a long term medication called 6mp. After reading about this on the net, I was totally against it and my daughter was on steroids on and off for quite some time. I am not going to tell you how much research I did in order to help her. To fast forward a little, we tried so many things during these years (Chinese herbs, Russian herbs, diets, etc.).
    In 2011 she got the worst flare up again. At that time she lived by herself and moved out to the west coast (before she lived in NYC and Pennsylvania). She was so sick, she lost 40lb (and she was skinny before that). Her weight was the same as when she was 11 years old… This was so scary, she was anemic and lost a lot of blood. I tried to feed her with foods that would raise hemoglobin (org. beef liver, buckwheat, pomegranate, etc.). I really believe in the natural way of healing things and was always against these new drugs that came out recently on the market. The steroids are very bad too, but at least they were used for maybe hundred years already, so you know what to expect. The new drugs like 6mp, Remicade and others I really don’t trust. And I refuse to have my daughter to serve as a guinea pig for our money craving health industry.
    To make a long story short, we totally lost faith in allopathic medicine and turned to the alternative medicine after trying homeopathy and other things. She found now a naturopath that helps her and monitors her wellbeing, she is totally gluten free with some other exceptions. And lots of supplements. And, almost forgot the most important thing – we buy only organic food. “Let food be thy medicine”.

    In case you would like to get in touch with me other than through this website, I guess you can ask Adam and, perhaps, he can give you my email address. Though, I’m not sure how this works. I never posted anything on this website, though I am reading stories and am subscribed to it. You can read my daughter’s story here as well. I think it was called “The worst flare up ever” or something like this. My daughter’s name is Anna.

  17. Debra December 19, 2014 at 2:00 am #

    Joanne,

    You sound like an amazing mother! I got diagnosed at age 38 and I’m allergic to all meds so feel for you and your daughter.

    Everyone’s reaction is diff, and all the food, herbs, probiotic advice ppl give are worth trying to see if they help. Each body is unique.

    The forums are amazing as well, personally I found healingwell.com the best global resource for options and emotional support as well as Dr and clinic recommendations globally. Dr Sanborn in San Diego is a guru as is the Cleveland clinic if in USA.

    That said my friends niece had her colon removed at age 19 and had the Jcurve reconstruction. She was violently Ill like your daughter and they almost lost her several times. The surgery not only saved her life but she’s 100% med free very little food issues and lives a normal pain free diarrhea free life. She’s been through a lot in her short life and has recovered amazing! Eating dinner with her is amazing to see.

    I’ve personally tried all eastern and western meds and even the fecal transplant by Prof Borody himself here in Australia. Sadly for me I kept getting worse until I ended up home bound, not eating and had to stop working losing about 20pounds. I was an emotional mess as well after so many years of nothing helping long term.

    What worked for ME finally is unconventional and while I’m drug free so to speak I DO NOT promote my choice… (smoking 3-4 cigarettes a day). My decision at 43 was living now was worth more than the long term risks and the instant remission was worth it for me as the risks were weighed
    against the risks for not being in remission for so long.

    So there are all kinds of options. All the best with you and your daughter.

    Debra

  18. Jen G. December 20, 2014 at 9:09 am #

    Joanne,
    My daughter is now 21 and in her senior year of college. The summer before her freshman year, she traveled abroad to Mexico with other students. Everything appeared to be fine until her return. A few weeks went by when she began having blood and mucus in her stool. She had no pain and didn’t “look” sick. We thought she had a parasite and took her to a gastroenterologist, who did the usual parasite tests and they came back negative. He wanted her to get a colonoscopy and suggested it was IBD. We just could not wrap our head around the fact that she was suffering from IBD when the symptoms occurred right after traveling abroad. After we researched everything we could, including published studies on parasitic infection, we decided to take her to a tropical disease specialist for a second opinion. He ran parasite tests again and they came back negative. However, there was one particular parasite, entamoeba histolytica (amoebiasis), that was hard to diagnose because it can frequently come back negative. According to Clinical Microbiology Review, “A single stool examination has a low sensitivity of detecting the parasite” We thought we found the solution when the tropical disease doctor diagnosed and treated her for amoebiasis. He put her on three antibiotics and an anti-parasitic drug. This is when things took a turn for the worse.
    Her entire colon flora was wiped out. The bleeding did not stop and she had worse symptoms than before. She was making 10 to 15 trips or more to the bathroom a day. She became very sick, dehydrated and so weak, she could barely get out of bed. We ended up hospitalizing her, which we should have done much sooner. She ended up needing two blood transfusions and she had edema was so severe it was visible on her arms, legs and lower back. They started TPN (total parenteral nutrition) through a picc line and steroids to reduce the pan colitis she was suffering from. They diagnosed her with Ulcerative Colitis. Her father and I took turns every night at the hospital with her. We were so worried and some days the thought that we could lose her was a very real possibility.
    Thankfully, she recovered after a long stay. The steroids were working, but “long term” treatment had to be considered. She began Lialda and was beginning to feel normal again. She spent almost a year in remission on Lialda, but blood and mucus symptoms began again. This time, it was c-diff and unfortunately, her doctor at the time didn’t report the “positive” results to us until 8 days later. This caused another hospitalization. We began to experience the same emotions all over again. She was again put on steroids and antibiotics for the c-diff and she was on the verge of needing another blood transfusion, but fortunately, she did not. She changed doctors and after thorough consideration, she began Remicade infusions every six weeks, beginning May of 2013. She has now been symptom-free for 1 year and 7 months. She even started a blog to write about some of her experiences of having UC. Thecomplicatedcolon.blogspot.com

    I do know how hard it is to see your child suffer. I try and support the decisions of the medical community, but I for one would like to see a solution to the cause rather than a treatment for the symptoms. I am very grateful for her being in remission and believe the medication is what got her there. However, I also believe in the SCD and even purchased the book, Breaking the Vicious Cycle during my daughter’s last flare, but she was not ready or prepared to make that life change yet. I do not press her anymore on the subject of diet and have to let her make her own decisions about her medical treatment. Her father and I are always there for her when she asks our opinion, but she will ultimately have to decide what is best for her as time goes on.

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