Should I Do Surgery? I’m Leaning Toward Yes

WendyIntroduction:

I’m 44 years old and the mother of three with a husband. When I first got UC, it wasn’t as bad as it is now. 2009 I was diagnosed with Ulcerative Colitis and before that I had it for a year. It was pretty horrible until I got on prednisone in 2009 and as soon as I took the prednisone I was better. After I stopped taking prednisone, I took Asacol for a couple of months, but my joints hurt and I felt bad taking drugs wondering what the long-term side-affects would be to my body. After three months I stopped taking any kind of medication. In October 2011 my colitis became so bad I had to get hospitalized for five days. It was very very bad. It was far worse than the the worst it was in 2009.

Colitis Symptoms:

My symptoms change all the time. At present, my stomach is bloated and sore. I was supposed to work out at Zumba tonight, but I can’t, because the pain is too great. Today I have urgency and actually nothing happens when I go to the washroom.

My Story:

If I’m sometimes almost normal, should I have my colon removed? I am planning on it, but I feel stupid for doing it. I am also VERY scared to do it. I saw the video for the surgery on youtube and it is gross. It makes me think of torture and it’s horrifying, but I am not going to take any more drugs. None. Last October I had to be hospitalized for five days and I have never recovered fully. In 2009 I was diagnosed with UC after suffering for a year with no one knowing what was wrong with me. I felt crazy for bugging the doctor, but I knew it wasn’t hemorrhoids or an infection, I knew it was something different. I just didn’t know what. I consulted with a surgeon and I don’t trust him to operate on me, so I scheduled an appointment at Mayo Clinic and I am supposed to go there on the 29th of May for 3 – 5 days of getting checked out and they will decide if I should have surgery. My gastrointestinal doctor said he agreed that surgery would be good, but the doctor I was referred to I feel very uncomfortable with. I quit my job as I was on the toilet at least 6 hours out of an 8 hour shift. I wasn’t fired, but I didn’t think it was fair to my employer. I have applied to a part-time job with flexibility today actually. I’ll have to take a week off to go to Mayo and another week at least to recover from the surgery if they agree to do it. I am currently taking supplements which help control UC in a way. Sometimes it doesn’t work very well. I also have joint aches with the drugs so bad it is difficult to get up in the mornings. Any UC drugs I’ve tried I’ve had very sore joints. I feel so much better without the drugs, even though the pain of the UC is pretty bad sometimes, it is preferable to the drugs.

wendy thinking about UC surgery

Where I’d Like to Be in 1 Year:  In a year I’d like to be healthy.

Colitis Medications:
No meds, only supplements. In the past I have taken mezalamine (sp?) and two other drugs. Next I am supposed to take Remicade, but no way. I’m not taking it.

written by Wendy

submitted in the Colitis Venting Area

Tags: Mayo Clinic





33 Responses to “Should I Do Surgery? I’m Leaning Toward Yes”

  1. EricMay 21, 2012 at 5:52 pm #

    fricken sucks don’t it.
    I hate, hated the drugs too, but now that after 20 years and the ups and downs, the drugs do help, and I would be colonless without them.

    I am also thinking about the surgery.. The thought of it is almost beyond comprehension. This crap does not happen to me. I’m 47, intelligent and well educated. My life is good except for the blood, and bathroom.

    Before surgery I am trying the SCD diet. I have had limited success< but I don't follow rules well.

    please stay in touch,

    eric

    • Wendy
      WendyMay 23, 2012 at 7:27 am #

      Yeah, it really sucks. Yes, the thought of the surgery is almost beyond comprehension. It’s a horrible decision to have to make. I am pretty sure though, I will never take drugs again. The surgeon I consulted with said that there’s no way, even with drugs, that I would make it without having the surgery to the age of 65 considering the state of my colon at present. I’ve read of really bad things (since I search the internet so much on the subject) that can happen bad once you have the surgery. One person was in the hospital for a YEAR because the would from being opened up would not heal. Another person was in the hospital for 125 days. What amazes me is that ever single person is STILL glad they had their colon removed. I suppose there’s no going back anyway once you do that. Then there’s pouchitis. Having an iliostomy for three months or possibly the rest of my life if there’s a complication scares me a lot. I don’t want to live like that, but a lot of people do, and they seem ok with it.

      I don’t understand that SCD diet. I am going to look it up. Currently I just don’t eat things that hurt my stomach, unless I freak out and “go crazy” for a meal. I had a Jimmy John’s sandwich the day I was talking about in the story I posted when my stomach was bloated. It was a roast beef. Meat is really bad. I usually drink a blueberry/banana protein shake for breakfast, sometimes cream of wheat for lunch (with milk and brown sugar), and then at dinner I eat what everyone else is eating but very little of what may hurt me (like meat).

      I’ll let you know how the consultation went and if they agree to do surgery, I’ll try to post that as well. When I’m doing well I tend to ignore talking about UC and when I’m not doing well I end up searching all over the internet about UC. I then check the iHaveUC website. If I’m ill enough I may be turned off writing about it. I feel so wimpy being scared out of my mind. I’m not scared of dying, it’s living with pain that scares me. I’m quite certain it’s not something one usually dies of anyway – probably why I’m not scared of it so much. I can’t stand being in the hospital. As soon as I walk in the doors I feel like bawling, which is irrational. Living afterwards too with a sac of crap hanging off me for three months, or possibly forever :/ that’s not a good thought. It’s best to get it done now though while I’m relatively healthy if I’m going to do it.

      Best of luck with your UC. If you do get the surgery done, I’d like to hear about it.

  2. Kim DysonMay 22, 2012 at 1:48 pm #

    Hi Wendy,

    Thanks for posting your story – it is good to hear another mom with my age considering the surgery – I have to admit some of the worst symtpoms are the joint pain and the fatigue. I have gained so much weight from the steroids it’s crazy and I am just uncomfortable and tired all the time. I did see the surgeon for a consultation and it was very conforting, informative and they are very confident of succes. I am fortunate enough to be in Cleveland with the Cleveland Clinci and they do the most of these surgeries in the world – they call it their bread and butter surgery because it is second nature to them. I am considering the surgery, but might first try Remicade, 6mp did not agree with my liver.

    If you want to talk, feel free to reach out.

    Take care,
    Kim

    • Wendy
      WendyMay 23, 2012 at 7:38 am #

      I’m not taking Remicade because of these side affects:

      The following serious (sometimes fatal) side effects have been reported in people taking REMICADE®.

      You should tell your doctor right away if you have any of the signs listed below:

      Infections (like TB, blood infections, pneumonia)—fever, tiredness, cough, flu, or warm, red or painful skin or any open sores. REMICADE® can make you more likely to get an infection or make any infection that you have worse.
      Lymphoma, or any other cancers in adults and children.
      Heart failure—new or worsening symptoms, such as shortness of breath, swelling of your ankles or feet, or sudden weight gain.
      Reactivation of HBV—feeling unwell, poor appetite, tiredness, fever, skin rash and/or joint pain.
      Liver injury—jaundice (yellow skin and eyes), dark brown urine, right-sided abdominal pain, fever, or severe tiredness.
      Blood disorders—fever that doesn’t go away, bruising, bleeding or severe paleness.
      Nervous system disorders—numbness, weakness, tingling, changes in your vision or seizures.
      Allergic reactions during or after the infusion—hives, difficulty breathing, chest pain, high or low blood pressure, swelling of face and hands, and fever or chills.
      Lupus-like syndrome—chest discomfort or pain that does not go away, shortness of breath, joint pain, rash on the cheeks or arms that gets worse in the sun. The more common side effects with REMICADE® are respiratory infections (that may include sinus infections and sore throat), headache, rash, coughing and stomach pain.
      Psoriasis—new or worsening psoriasis such as red scaly patches or raised bumps on the skin that are filled with pus.

      I understand people taking it though, and some people I’ve read about have taken it for years and are fine. Also, some people may prefer this to not having a colon. It’s a difficult situation to be in. I’m so glad Adam has this site for people to discuss their situations. I’ve learned about the SCD diet on here. I was so ill for so long I was afraid to try anything though, but right now I am better. I am brave enough to try new foods. Thanks so much for writing back. It is really nice talking to other people in my situation. It sounds like you have a great place to have the surgery if you choose to do that.

      I hope the remicade works well for you or whatever you decide to do. I didn’t think UC was a big deal before until after three years of actually having it. I thought, “so what, I’m going to the washroom often, I’ll be ok in a little while.” and it never worked out that way once I had the attack in October. 2009 – 2011 were fine, but after Oct 2011, yeeesh. Best of luck.

    • JenniferJune 6, 2012 at 5:51 am #

      Recently talked to my GI @ Cleveland Clinc and after having been on Remicade for 2 years and then having some side affects and having to be pulled off of it and in 4 months having a flare that ended me in the hospital for a week we are thinking of surgery will go to Clinic on Tuesday next week to see what they day-getting very anxious. Jennifer

  3. jMay 22, 2012 at 2:11 pm #

    Many people have found relief by following the SCD diet ( without cheating) and by taking probiotics. I have had UC for 40 years and the diet, Lialda, and RX probiotic VSL#3 do help me and keep me in remission.

    • Wendy
      WendyMay 23, 2012 at 7:43 am #

      Wow, you had UC for 40 years! I’ve tried all that except the SCD diet. I really have to get information on that diet. I’ve seen Adam has a link to click on for it. I will have to do that. I think I was sick for so long where anything I put in my mouth was like poison that I was too afraid to try anything other than what I KNEW already would not upset my colon. Thanks for the ideas.

      • Anne in CAMay 24, 2012 at 3:20 pm #

        Wendy,
        Please look into the postings about dietary changes, herbal treatments, probiotics. Maybe something there can help you make your decision.

  4. BevMay 22, 2012 at 3:25 pm #

    Hi Wendy…

    I feel EXACTLY the same way about taking meds as you do. I refuse to take them any more. There are no good options for UC, drug wise, and I am tired of it as well.

    Funny you mention joint pain. Ever since going off the 12 asacol pills a day (that I took for 13 years, by the way), I am so incrdibly sore! I don’t inderstand that, because I thought asacol dissolved in the colon, and that was all it was supposed to help with. Very strange, indeed, right?

    Anyway, body pain or no body pain, I feel 100 times better OFF the meds too! I had nausea all the time, which I thought was because of the UC, but it is gone, thankfully, now that I am off the meds! No more headaches, acne, bowel pain, loose stools. Everything is good, except for the bleeding. I can’t seem to stop that particular symptom, unfortunately. Oh well…it’s better than all of the other side effects I had, for sure.

    I certainly hear where you’re coming from, my friend. Hang in there and do what YOU want to do! It is our own body, not the doctor’s. I know they are just doing what they are supposed to do…offer us the gamut of medication, until nothing works any more, and then tell us that surgery is the next step. That’s what they are taught in school, right? Well, I am not a thing in a textbook. I am a person who wants to live a good life, and I will decide for myself how that will be.

    Cheers,
    Bev:)

    • Wendy
      WendyMay 23, 2012 at 7:05 am #

      Yes! That’s what bothered me about the surgeon I consulted with the most. He seemed to think he had rights over my body and I HAD to have the surgery and do what he said. I’ll be doing what I think is right. I’m only consulting the surgeon. This supplement stopped my bleeding very quickly: “Hawaiian Astaxanthin.” It must be the Hawaiian brand. Spirulina also helped get my IBD under control but the Astaxanthin helped the best with the bleeding. I also take Kyoto brand Chlorella, Vitality 6 from Melaleuca and florify. These supplements all help me keep it under control, but I mention the Astaxanthin because you mentioned that the bleeding was the worst for you to stop and this stuff helped me. I don’t know if it will help you, but it seems like it should according to studies I’ve read.

      Yeah, there’s no good long-term outcome for drugs of any kind. It’s best to stay away from them (I feel anyway). Remicaide’s side-affects are pretty horrifying and it’s the last drug they wanted to try me on, but I said no way. I mean, you can possibly get cancer from it. So while I’ll have my colon removed eventually anyway, I can also battle cancer? No way. I realize I woln’t get cancer necessarily, but still, it’s not worth it. There’s other side-affects.

      I did take the asacol and I could feel the difference after three months of being on it. I thought there’s no way I’m taking this stuff for years, also, it doesn’t get rid of the UC symptoms enough to make it worth it. My joints actually do hurt even without taking any drugs, but they hurt much more with taking any drugs I’ve tried so far. I still have another month before I go to Mayo, so I’ll hear what those surgeons have to say. I can’t believe you took Asacol for 13 years! I guess you have to try something though, and I don’t blame anyone for taking drugs. They do control symptoms a lot of times and I totally understand not wanting the colon removed. I may chicken out and become so ill I’ll have to be hospitalized again myself. Hopefully I’ll have enough guts to go through with the surgery. Best of luck with your UC. It is so great hearing from someone that is around my age with this.

      • BevMay 24, 2012 at 9:03 am #

        Hi again Wendy!

        I can’t believe that I took asacol for 13 years, either. I just bought into what the doctors told me. That I had to stay on it to retain remission. Of course, that didn’t really work, but they would scare me into thinking that it would be much worse, if I discontinued the drug. Yeah…worse for the drug comapny, and their pockets. That’s what I think anyway…

        I can’t believe you are so sweet as to give me the name of this supplement that can stop the bleeding! Thank you SO much. You really read in between the lines! I shall look for it, and try it. The bleeding is my ONLY symptom at present. I know…I am so lucky at this very second. I hope it lasts…

        As for remicade…well, shit, how could anyone even want to try it with the side effects that are possible? They are worse than the UC!! I could never take it. My GI tried to talk me into it, but I wasn’t having it at all. She deems me very difficult to say the least…

        I finally got an appointment to see a surgeon to remove my vcolon after waiting for five months, and I decided not to go and see him. I was feeling pretty good by then, and now I am glad it took so long to egt in to see him. I decided not to have my colon removed. Instead, I am trying EVERYTHING natural to heal it. I must say here, that I started LDN (low dose naltrexone…yes, a drug, but one with little or no side effects, believe it or not) two weeks ago. I actually asked my doctor for this drug( I hate to call it that, but it is a drug), and he just about fell over, being as anti-drug as I am. After reading about it online (go to low dose naltrexone home page), I really wanted to give it a go. One week in, I really didn’t feel any different, mind you, I was almost totally without symptoms except the bleeding when I started it. This past week, I have noticed improvement! Small improvement, like firmer stool, less bowel pain, and no urgency at all. Apparently it can take a few weeks to a month for good stuff to happen, so I am hoping for even more improvement, like maybe stopping the slight bleeding? This drug, in it’s low dose form, is said to ‘regulate’ the immune system, not suppress it, like all of those scary drugs (remicade, imuran, 6mp, humira, etc). I liked the idea of regulation, as opposed to suppression, if you know what I mean? I don’t want to suppress my immune system! Somehow, that doesn’t sound like a solution to me, only a gateway to even more problems, and harm!

        Hang in there, Wendy. Really think about what you want. Where you want to be. It’s all you, not the doctors. They can help with guidance, and information, but it’s you who has to live with the choices you make, not them.

        Cheers my friend, and thank you for your kind words, and encouragement. I want to encourage YOU!! Follow your own heart and head. Try everything you want to try, and nothing that you don’t want to. You know you better than anybody else does!!

        Bev:)

        • Wendy
          WendyMay 27, 2012 at 4:42 pm #

          Thanks Bev :) That is how I feel, but sometimes too afraid to not listen to the doctors. I want their opinions, which is why I go to them, but I don’t want to be threatened to do what they say. I’ll do it if I feel it is right. Thanks for the idea about the naltraxone, although I think I’ve tried that one. I’ll have to look it up. I have a large stash of old drugs in my medicine cabinet or I can also look it up. Good luck with the treatment. I’ll update after the 24th and I’ve consulted with the Mayo Clinic people.

          • BevMay 29, 2012 at 5:42 pm #

            Yes, Wendy, please do update us on whatever you choose to do.

            As for the low dose naltexone…I’d be very surprised if you’ve tried that. Doctors are hardly even aware of it in the low dose form, and are very reluctant to prescribe it for UC. They tend not to believe that it might be a new treatment for UC. I don’t know for certain if it’s doing anything for me, because I was basically in remission already, before taking it, except for that dastardly little bit of blood. Just to remind me that I have UC!

            Cheers,
            Bev:)

      • Carol from Colorado
        CarolMay 26, 2012 at 6:31 pm #

        I have made up my mind to go ahead and have surgery. I have been on Asacol, steriods, and enemas and even generic brand for Imuran and I will not take Remicade or Humira. I am pretty much done with this. I am going to wear the bag and stay away from the pouch thing because of the things I have read. I am on Imuran and Asacol now and was okay for 5 months and now I am bleeding and scared. I am just plain tired of it all. This medicine is not long term and I want that now. I am 59 years old and am in good health so I best do it now. There is a site that makes me pretty happy about hiding the bag and doing exercises without being worried if the bag shows. I am getting my accessories thru them it is called http://www.ostomysecrets.com. The lady who started this has been on televison. I think it is great she is doing this. She really has some nice things to check out!!!

        • Wendy
          WendyMay 27, 2012 at 4:47 pm #

          How long have you had UC Carol? Thanks for the website. I definately don’t want the bag, but I’ll need the website info anyway because I will need it after the surgery if I get it, and there could be a problem where I’ll have to keep it forever. I don’t know stats on that (how often people that have surgery end up having to have the bag forever) but I know there’s a chance of it. Could you post how your surgery goes? I mean, if you are feeliing up to it and everything. I want to know about it since I am seriously thinking of doing it. If you don’t want to, that’s fine. Thanks for the info :)

    • Carol from Colorado
      CarolJune 19, 2012 at 6:40 pm #

      If you are bleeding please be careful that you do not become anemic and take care of yourself. If you start getting tired it is due to you loosing lots of blood. Please just be careful.

  5. EricMay 24, 2012 at 10:24 am #

    Hi again.
    An excellent discussion!!!!
    and much appreciated as I sit on the couch NOT having the urgent urge!! not this morning at all! Unbelievable!

    I started probiotics yesterday, and 2 mild BMs today so far. (in 7 hours!!)Normally I would be 15-20 at this time.

    Wendy, since reading your original post May 21, I too have researched alot on the surgery. And, to concur with your findings, it may not be that bad, BUT we would like to avoid losing body parts if we can, AND wearing a bag does not seem like an attractive solution in the bedroom or the beach.

    I think Bev will agree, try the diet and probiotics 1st.

    Take care.

    Eric

    • BevMay 24, 2012 at 3:16 pm #

      omg…YES ERIC, I WOULD AGREE!!

      Please try a good probiotic (I take one crotical care capsule by RENEWLIFE once per day.

      Weird that Eric says it took two days to see improvement…that’s what happeneed to me!! That’s all I am taking now, that one probiotic, and although all of my symptoms have disappeared, except for a bit of bleeding, I started that LDN that I told you about, just to hopefully stave it off, from returning again, you know? I don’t want the UC to flare up again!

      I concur, I concur, I concur!! I say try EVERYTHING natural before making that big decision…it can’t hurt, right???

      Cheers,
      Bev:)

    • Wendy
      WendyMay 27, 2012 at 4:52 pm #

      Ha, yeah, I was kind of embarrassed to mention the beach and the other thing, but I can’t imagine how that would work. I’ve read it’s ok though, but I would not look forward to that. Probiotics are one of the only natural supplements I haven’t tried (I think – I feel like I’ve tried EVERYTHING). I was so ill for so long I started to give up and want my colon out, but I am starting to feel better again. I read about another guy who went from 160 lbs to 118 in about two months and had to have his colon removed and he was really young. I guess I think of things like that and I’m super old compared to him. He was in his early 20s and plays soccer – doesn’t smoke or drink. I’ll have to try those probiotics. Someone else mentioned it as well. I was thinking florify was the same as probiotics, but I guess it isn’t. Thanks.

    • Rohun
      RohunJune 6, 2012 at 10:12 am #

      Hi Eric,

      What probiotics are you taking. Are you doing anything else.. SCD or something?

  6. BevMay 24, 2012 at 3:16 pm #

    CRITICAL CARE, that is, by RENEWLIFE

  7. shelly in maineMay 24, 2012 at 4:43 pm #

    Hi Wendy..I totally agree with others about probiotics and diet. You should read the surveys about probiotics and surgery and stories from people like Curtis, Blake and others..it will help alleviate some of the fears of surgery so you can actually make choices to try other things knowing there is still that one choice and hopefully a “choice” you will be able to make if you NEED it.
    Where am I coming from? Also 44, diagnosed at 15 with symptoms “forever”! I have taken pretty much all the meds and am now allergic and intolerant to all…BUT am Med free for almost a year fingers crossed, gretting over a flare and iritis-, except omegas(lovaza 4 pills-purified,saves some $), vsl #3 prescription strength 2-4 packets-900 Billion in each…have to work up to, and diet similar to SCD, but not as strict…closer to when symptomatic.
    I was forced into a no Med. Situation…luckily, I guess. Adam has also inspired-read his book as it is similar to most people diagnosed recently.
    As far as taking meds…(Bev, too)…when you are diagnosed you are following doctor’s rules.. we trust them. Look how little we can cure…we treat symptoms, we follow modern meds, and diagnosed as a teen, 30 years ago…we listen to our parents and they follow the all knowing doctors. We do what we need or think we need to do to have a “normal” life, to save our lives and colons! When you are in the bathroom more than out wondering how much blood is okay to lose before ending up in the ER or avoid surgery which has only recently been improved and lacks in rural areas…you pick meds because.there are no guarantees…for anything…but we know more now. There are alternatives to try. Sorry about the soap box, but empower yourself and find good doctors to have these discussions…I have a great D.O. primary care, and longtime gastro…I talked to both about my need for a good surgeon/not a hack…just in case…cause the stories up here in Maine are not so inspiring for surgery or UC which most people don’t even know what it is!
    So good luck. Hope this helps in some way.
    Good health, shelly. :-) oh yeah, treadmills are great…you can work out at your own pace and always have a bathroom close by! :-)

    • BevMay 24, 2012 at 5:44 pm #

      I love what you are saying, Shelly!

      We do take the meds, for the very reasons you stated. We don’t know any more about this ‘disease’ than the doctors do, but I really do believe it starts by losing our own good bacteria / flora in our gut. Why not try probiotics? Sometimes, they don’t work right away…in fact it took almost two months for me to lose ALL of my awful UC symptoms! If I had have thrown the towel in before that, I would not be on here, singing their praises! I would be saying ‘I tried probiotics, and they did nothing for me’. I’ve read that on here alot, from others who maybe didn’t hang in there long enough for the probiotics to actually work?

      Nothing happens overnight, that’s for sure. I say, try the best probiotic you can buy (ask an expert at the health store), and take it for at least two to three months. Really!

      I too, have heard lots of great stories regarding surgery, but I have heard just as many bad ones. People having up to eight surgeries, due to infection, like pouchitis, bad stomas, and a myriad of other problems. I’m not certain it isn’t without alot of pain and difficulies either, just like the UC. It seems that something always seems to go wrong with the surgery at some point. Then, you need more surgeries to correct the prior one, or ones. Sheesh! Doesn’t sound like too much fun, that’s for sure.

      Bev:)

      • shelly in maineMay 26, 2012 at 4:52 am #

        Hi Bev-thanks…totally agree about not giving up on probiotic and finding the amount that you need is very tricky and variable depending on where your gut/symptoms are and they take a while to work. I started with metagenics-from my primary care and HE gave me the research behind them as he declared himself a non-uc expert but we would work together and he would learn from me!! I knew my gastro’s position,although he has been respectful of my decisions(like not taking meds. When not having symptoms which is part of how I think I made it for so long on traditional meds-plus I’m generally healthy eater and active) , but no real research/science proof!-they gave me severe pain,but I called my doc. To make sure it was “normal”! I actually took gas-x for the first week or so as I adjusted and eventually switched to the vsl #3 pills then prescription strength as my need began to grow and change-allergy to remicade, humira, lots of stress, gallbladder removal, shingles, etc! I actually saw the research on the vsl and it is given as Med,etc to severe,pouchitis so I knew it was the one. It took a long time to find the codes for Rx…all good probiotics are expensive and general refrigerated. I even researched with my Dr. To find all ingred. And called the Company, but they wouldn’t give me all the ingredients! So I didn’t take it at first…realized I NEEDED it in higher doses!! Anyway more affordable by prescription in higher amounts. :-) I think the probiotics are constant versus the fecal transplant-ick-which I would imagine would return to its “normal” bad state if people don’t take care to keep it at that state. I think that is essentially some of the info. From Adam’s original gut research in a nutshell!
        Oh and thank goodness for the internet now…perhaps my long journey would be different if I had been diagnosed into the internet age…not sure??
        How is the ldn? You should write new story about it so you can keep adding to it with updates in one place!
        Good health shelly:-)

        • BevMay 26, 2012 at 8:33 am #

          Shelly!

          What a GREAT doc you have! I think you, and your doctor are AHEAD of the times. I think that probiotics are going to become more mainstream in the treatment of gut and bowel diseases / problems. I mean, it doesn’t have to be a chemically produced ‘drug’ to work, right? I believe that SOME doctors are realizing that probiotics serve a REAL purpose in the treatment of UC and other intestinal problems. Kudos to you AND your doctor! What an uplifter, that a doctor might actually be open minded enough to want to ‘learn’ something from a patient, or something new, not taught in med school. Wow!!!

          I also like what you said about fecal transplant. I thought it may be the be-all end-all in treatment for UC, but now, I too think that probiotics may be ‘better’ because you CAN take them constantly, and keep your good gut flora more consistant! (We are SO smart!) We learn so much the longer we have UC, don’t you think?

          As for the LDN, I HAVE been writing about my progress. I have only been on it for three weeks, and I am noticing improvement, even tho I had almost no symptoms when I started it! I will continue to take it and hopefully, see even more improvement. (Just in the very small amount of blood that is left-that’s where I want to see improvement). I have NO other UC symptoms at the moment and I almost feel like I don’t even have this disease! I know that that is thanks to the probiotics, tho…the ONLY thing that has EVER worked for me!! Taking this LDN is sort of like the probiotics…I think I need to take it longer, like for a couple more months, to really know what it’s doing for me. I will hang in there. Taking probiotics certainly taught me to be patient, and keep taking them so that they have a chance to really do something.

          I hope I can report, in the next couple of months, that this immune regulating LDN is the answer! I really do, but I think that we also HAVE to take probiotics, to keep our guts healthy FIRST. Everyone…please try a good probiotic, and don’t throw in the towel too early!! Give them a fighting chance to work!!

          Cheers,
          Bev:):):)

      • Carol from Colorado
        CarolMay 26, 2012 at 6:21 pm #

        I was going to try the VSL#3 I think that is the name of it but my insurance will not cover it. Maybe try health food store!!!

  8. EricMay 24, 2012 at 7:06 pm #

    Again, I, we feel your pain.

    I like the SCD diet and the Candida diet. Sorry, “Like” is the wrong word. I think the SCD diet and Candida will drastically help. Sugars (including alcohol :( ) & carbs.

    I only had 8 BMs today. Usually not a topic for conversation, BUT a drastic change, not from meds, but from whatevrthehell probiotics are. (I know, a billion zillion bacteria doing good stuff but not bad.)

    As Bev, (a fellow Ontarionian I think) has mentioned, though the ultimate choice is all yours, spending $30 for a probiotic may be worth it.
    Eric

    • BevMay 25, 2012 at 5:16 pm #

      Eric, I am so happy for you re the probiotics…I don’t know what the heck they do, but they basically put me into remission too! It took more than a few days to REALLY see a huge difference, but as soon as I started them, things started improving, just like you.

      I must say, though, that it got better and better weekly, as I took them, so I see good things ahead for you, my friend, and fellow Ontarionian!! (I only go once in the mornibg, now, and it is el-firmo!!) I think you really have to hang in there when taking probiotics. It may seem like they aren’t working good enough the first couple of weeks, but in time, more good things start to happen, and it makes me wonder if some UCers bail too soon, thinking that they aren’t working fast enough…I’d love to hear what happens in your probiotic taking future, Eric. Like, a few months down the road.

      Sidebar: Apparently, Timmins is burning! Not too happy about that…

      Cheers,
      Bev

  9. MilkaMay 26, 2012 at 7:15 pm #

    Hi! I cannot believe you don’t take meds. I was diagnosed with severe colitis in 2009 and after asacol failing and a few other meds my options were Remicade or surgery. I chose Remicade. I was so desperate. Do I get red hot skin and joint swelling… Yes. But also I am so grateful that something took those horrible symptoms away. I am on it every 6 weeks and could go down to every 5. My only complaint is I tire easily and require naps at least weekly just to maintain my strength. And for someone who use to easily stay in shape running and biking everyday to now walking and do mat exercises. Running brings on symptoms and cycling will but it takes longer Before symptoms begin.
    I agree with everyone who have said try changing your diet and probiotics as well not sure if you have tried seeing a naturopath?! But that maybe a good option.
    We all support whatever decision you make… And most importantly you have to be ok with the decision!
    Good luck and keep us posted!!!

  10. shelly in maineMay 27, 2012 at 4:10 am #

    http://www.probiotics-lovethatbug.com/vsl3.html
    Here is the web site I got the codes for my doctor to submit…it took several months to find them…scroll way down to vsl #3 ds- that is the double strength prescription…need to work up slowly and figure out how much you need usually 1 to 4 sachets(packets) depending on where you’re at with your uc! You can also go to the vsl website for more info…pretty good site.
    Good health all…shelly:-)

  11. jenniferMay 27, 2012 at 9:08 pm #

    I noticed a huge difference when I cut out gluten. My doc wants me to keep eating it so that they can test for celiac, but it’s like rat poison for my colon… I bleed and cramp more. If you want to try something easier than the SCD diet, start with replacing your Cream of Wheat with cream of rice (it’s really good… I add honey, banana and cinnamon), replace bread with Udi’s gluten-free bread (it’s much better than I’d expected!) and ditch the other stuff that has wheat or gluten in it. You’ll know within 3 days if gluten is making your colitis worse… it’s an easy experiment.

    Also, from what I”m reading Asacol is not absorbed by your system; it only “releases” once it gets into your colon, and then it acts as a topical med before it’s passed out of your body. IMO it seems to be one of the safer drugs. But I just started it so can’t speak from experience.

    Lastly, all this stress is likely aggravating your system. Take time to breathe through it. Take good care of yourself. Try all these alternatives and see how they work for you. Wishing you healing!

    • Wendy
      WendyJune 3, 2012 at 1:46 pm #

      Thanks for the idea Jennifer. I did cut bread totally out of my diet, but not cream of wheat. I’ve never noticed cream of rice before. I’ll look for it in the stores. i don’t know what an IMO is, but I’m sure the doctors will. I’ll write it down and tell them when I see them about it. Another person I know told me I should cut out gluten and she doesn’t have UC.

  12. KatieJuly 29, 2012 at 2:37 pm #

    I’m 24 and had UC for almost ten years. I tried all sorts of meds with either no relief or some sort of reaction. I had my colon removed on march 5th and the reversal at the end of April. Although my body is still adjusting, it’s already the best decision i’ve ever made. I’m still using the bathroom about 8 times a day, but with no pain or urgency. The lack of urgency was almost immediate and it’s incredible! I know it’s probably harder for you since kids might make the recovery a little difficult, but I would recommend the surgery to anyone. I hope everything works out!

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