What is Going on Feels Like I Got a Fist Up There!

Introduction:

I am a 46 yr old woman from England.  I have two wonderful grown up children and a understanding husband.  I was first diagnosed with U C in 1992.  in 1999 I lost my father at the age of 54 with bowel cancer. I had a severe flare in 2000, I was in the hospital 3 weeks or more.  My doctor at the time put me on steroids also a strong tablet they use for people with cancer (sorry cant remember the name).  Had a bad reaction to the tablet and they talked about removing my bowel but felt I should try some different meds so was on Asacol.  Took months before the bleeding stopped.  Had a follow up appointment with a different consultant who said why not try smoking again which i did and what do you know, the symptoms disappeared.  I was back to normal and somehow came out of the medical system.  Got on with my life until now, 12 years later have found out after bleeding again I should never have come off the medications and have been told I have pan-colitis and have to see consultant every 2 months.

fist up buttSymptoms:

Well after the shock that I still have this horrible disease and that it now effects the whole of my colon it has now decided to to effect my joints also I have calcium and vitamin D defect.  I have been working full-time for the last 10 yrs in a job but now its affecting me.  How can i stop feeling so tired and the joint pain is getting me down.  Reading other U C ‘ers symptoms here is mine: every morning rush to the loo.  Stomach feels like its on fire and sore and sorry to say feel I have a fist up my backside all the time!!! But for me its feeling i have no energy, feel weak and i feel like an old woman.  I have always been a fighter in life and been dealt with a hell lot of bad luck due to numerous bereavements of family and friends and other stresses and pulled through but this is beginning to drag me down.  I’m currently awaiting another colonoscopy and awaiting scans as well.

Feels Like I Have A Fist Up There:

My current doctor has assured me I will be monitored very closely but feel this is not only taking over my colon but my life.  I was always active and never sat still for more than 5 minutes, I used to roller skate and enjoyed the outdoors and always out socializing.  Now I am struggling to get through a week at work and have to rest on days off !!!

And that’s without a flare !

In the back of my mind is what happened to my dad and also his dad who also died of colon cancer.  I am feeling scared and want to be around to see my son and daughter marry have kids etc.  I know there is a lot of people worse off then me and i try to stay positive about life but don’t want UC to drag me down.  I have amazing people around me but they don’t really understand how it feels that’s why i joined this group.  I am the sort of person who is always giving others advice and doing things for others which i enjoy.  I get pretty frustrated when I have to give in to this and rest and have to get my husband to do things for me.  I would like to know if anyone else feels like me. I am lucky that I am not constantly on the loo but that’s probably why I get up so early to allow me to clear out !! Then get ready for work.  I work in the cosmetics business as an account manager standing for 8 hrs a day, never in ten years have been off sick. I DON’T WANT TO GIVE UP WORK but i am struggling to get through each day putting on a brave face.  I feel scared that if I have another flare, I wont be able to carry on fighting on as I have done in the past.

Where I’d like to be in 1 year:

Feel nearly normal again ha ha enjoy life feel happy and able.
Medications:
Pentasa granules 4g a day.Pentasa suppositories 1g twice a day during a flare. Acal-D twice a day.

written by Debbie

submitted in the Colitis Venting Area – add your story too!









cancer, scared

21 Responses to What is Going on Feels Like I Got a Fist Up There!

  1. Bev April 23, 2012 at 1:57 pm #

    Hi Debbie…

    I feel just like you do!

    It seems that ever since I was diagnosed with pancolitis (full colon involvement) that I have been utterly exhausted. Even after I have an iron infusion, I am still absolutely beat. Especially after I eat. after I eat anything, I feel like a blanket has been pulled over my head and it’s all I8 can do to function or stay awake. I feel like I could just drop right where I’m standing. It has taken the joy out of eating, that’s for sure. When I just had ulcerative colitis, before it spread to pancolitis, I was never this tired. It must be a symptom of out whole colon being ulcerated. It’s probably all our bodies can do, after we eat, is just digest, and nothing else! That’s what it feelds like, anyway.

    I want to have my energy back, too. I still exercise five days a week, like I have for 25 years, only I feel like I’m only going through the motions now. I can’t do it vigorously anymore. I swear, if I didn’t have exercise, I would be even more depressed than I sometimes get. I also want to have the energy to be fun again, for my husband, who enjoys camping, and travelling (which we hardly ever do anymore because I’m too tired, and my ‘must get to the bathroom’ first thing in the mornings, or else! What a way to live. This disease affects my daily life to the ninth degree, that’s for sure, and unless you have it, you can’t understand how awful and debillitating it can be. It has sure beaten me up…and down at times!

    Take care, I certainly sympathize with your feelings about this…believe me. It doesn’t make me feel any better knowing that there are others, like you, dealing with the horrible symptoms that we sometimes do. It actually makes me sad every time I hear another person with this disease talk about how it affects you (their) lives. It sucks, and I really believe that something has to be done to cure this. It’s hard to live with it. No matter what anyone says!

    Cheers,
    Bev:)

    • california karen April 23, 2012 at 2:46 pm #

      bev ive seen you on here alot, and i totally get it! lately i am on the verge of tears even if i dont show it! I also exercise; but i cant eat before my 3 mile walk! and ive been doing yoga now for a few months to help my moods! My hubby is very understanding about stuff. I didnt have my colonoscopy for 2 months after leavin hospital so by that time of being so strict on my diet ;things looked pretty good and the doc said well now you also have diverticulosis. but anyway she said well maybe it was just a one time thing but i cant help feeling like thats just brushin me off!

      • Bev April 23, 2012 at 4:51 pm #

        Hey Karen…

        Yep, on the verge of tears. I live like that all the time. I actually have a good cry in the bathtub some mornings, after my husband has gone to work, and after I’ve exercised. Too bad if some people would think I’m just feeling sorry for myself…I may very well be! And why not? Sometimes, it just gets to me, you know? Stuck with this disease, that dictates my every waking moment. Yeah, I get fed up sometimes, thats’ for sure.

        We all have to eat in life, but when we UCers eat, it’s always a crapshoot (no pun intended) as to how we are going to feel afterwards. Pain, running to the bathroom, terrible gas and bloating…it just never stops. Eating is essential for life, and yet for us, it carries with it fear, trepidation, and worry. It gets OLD.

        I keep on trying to keep my chin up!

        Cheers everyone,
        Bev:)

    • Debbie Hill April 25, 2012 at 6:20 am #

      Hi Bev thanks for your words it helps to know there is someone else feeling the same.

      • Bev April 25, 2012 at 12:08 pm #

        Thanks Debbie, right back at you!

        Bev:)

  2. dave evans April 23, 2012 at 2:10 pm #

    Deb–same thing with the fatigue and aches—Remicaide fixed it all at least can be somewhat normal!!

  3. Polly
    Polly April 24, 2012 at 6:43 am #

    Hi Debbie!

    You are not alone! I am going through many of the things you mentioned… the fatigue gets me all the time… I’ll be washing dishes by the sink, and then have to stop and tell my husband that I’m tired and go lay down and he has to finish up…

    It jumped out at me that you are Vitamin D deficient… My Doc is a firm believer in Vitamin D (and, as he recently told me, it’s not actually a vitamin, it’s a hormone), I only started seeing results (and feeling better) once he upped (way way upped) my doses of Vitamin D. There are studies that show that Vitamin D is an excellent anti-inflammatory. My Doc told me about an article in the BMJ (British Medical Journal) about Vitamin D… when sick, a 175 lb. person can take 160,000 IU of Vitamin D for a week. I am 120 lbs. and he had me at 100,000 IU of Vitamin D for a week (that was last week), now this week he has me down to 50,000 IU and 20,000 IU next week. I think I regularly take 5,000 IU a day. I tried to find the study on BMJ, but I couldn’t (there are too many studies on Vitamin D). I would talk to your Doc about getting enough Vitamin D…

    Also, since I have been super frustrated/stressed out/overwhelmed/sad, etc., my Doc also told me to take the amino acid GABA. It is a natural supplement that helps our bodies/brains deal with stress.
    It’s working great!!!

    My Doc also just told me to start taking PSYLLIUM 3 times a day. (“Powdered Psyllium Husk Certified Organic”) It is something that turns gelatinous in the colon, and coats and soothes the colon. Maybe you want to look into it? Here’s something I found online: “In one study of people with ulcerative colitis, psyllium was as effective as the prescription drug mesalamine (Pentasa, Rowasa, Asacol) in maintaining remission. However, for some people with IBD, too much psyllium can make symptoms worse. Work closely with your doctor to decide how much fiber is right for you.” http://www.umm.edu/altmed/articles/psyllium-000321.htm

    I would also highly recommend probiotics!!! I take “Primal Defense” by Garden of Life.

    It will get better! You are not alone! Lots of hugs!
    Take care,
    Polly

  4. Adam April 24, 2012 at 7:42 am #

    Debbie,

    You might want to talk to your doctor about anemia. It’s super super common with UC’ers who have active colitis symptoms. I myself had very bad anemia prior to my diagnosis when I was symptomatic, as well as after my diagnosis when my UC got really severe.

    I can’t tell you how many people have started feeling quite a bit of relief after getting tested for anemia and then treating the anemia.

    This is just an idea, but it might be well worth talking to your doctor about, as its a simple blood test which can uncover this if its going on.

    Best of luck to you, I really hope you start feeling better very soon Debbie:)

    • Debbie Hill April 25, 2012 at 6:24 am #

      Thanks Adam currently having blood tests but none seem to show that i am anemic which is good. Thankyou for this website it really helps a lot. Debbie

  5. David April 24, 2012 at 4:33 pm #

    I`ve had this dreaded disease (Chronic UC) and my doctors and I have been trying to get into remission ever since I was diagnosed. I`ve gone through just about all the drugs to treat this, steroids and non steroids, injections, dietary changes you name it. Now I`m on Remicade infusions and after my 4th infusion, I`m having a flare as bad as I`ve ever had. It seems to me that the Remicade isn`t working just like all the other drugs. I`m running out of options before I`ll have to have my colon taken out. I really don`t think remission is ever going to happen for me. I finally have come to the conclusion that this is what God wants. This is Gods plan and there is no changing it. I`ve given up on prayer, I see now evidence that it`s done anything for me. I`m completely on my own with this disease and I`ll have to figure it out on my own. My father had this disease and I think I got cursed by bad family genes. I feel for anybody struggling with UC. This disease has ruined my life in so many ways. I`ll keep fighting this battle but I feel like my future is ruined. I just don`t care anymore, and I don`t think God does either.

    • Bev April 24, 2012 at 10:01 pm #

      Hi David…

      I too feel for everybody who has this affliction. I am so sorry that this has all happened to you…and me…and anyone else who is putting up with it. It seems that there is no answer…no way out of it. All the nasty symptoms we have to go through every day. It really doesn’t seem fair…but what is fair in life at all? I suppose it isn’t about fairness. We just have to bear it.

      I don’t understand why a cure for UC can’t be found. It seems like it would be so simple, but evidently, it isn’t.

      I want to say something to cheer us all up, but I’m not sure what to say. I am hoping for some sort of natural cure that could come along. Hoping all the time…just maybe it WILL happen and we will be able to enjoy it. Wouldn’t that just make you want to skip down the street? I’d faint, and then pick myself up, and dance all over the place!

      Stay strong, my friend, even tho it’s the hardest thing to do. I have often thought of just getting rid of my nasty colon too. I understand and sympathize with you totally.

      Cheers,
      Bev

      • David April 25, 2012 at 6:37 pm #

        Hi Bev:

        Thank you for the kind words and support. I feel a little better after reading your comments. I was really down and having a bad day when I wrote about my experience yesterday. I try to stay positive and happy but it`s hard sometimes when you are having a rough time during a flare. I was a little down on God in my comments but I know this isn`t God`s fault. I try to search for reasons why I got stuck with this disease and can`t understand why. I use to be very athletic, took care of my body, ate healthy and exercised regulary. I felt like taking care of my body was an investment in good health that would pay dividends in the future. Since I was diagnosed with UC, all of that changed in my life. As you say, life isn`t fair and we just have to bear with this disease the best we can. Many people are struggling with terrible circumstances in their lives that they didn`t ask for. I know that I`m not the only one. I will remain strong and deal with this thing for the rest of my life. Let`s hope that there will be a cure one day. I hope your health and condition will improve and you will also stay strong also. I think we have to try and appreciate the good things in our lives and find comfort and happiness in our families and friends. Hang in there my friend, I will keep you in my thoughts.

        David

        • Bev April 26, 2012 at 10:06 am #

          Right on David!

          I have those days, myself, when I feel utterly hopeless and helpless. Thank goodness, they pass, but it’s still always in the back of my mind. 24/7…

          I too, have been an avid exerciser for 30 years. Cardio 5 days per week, and strength training 4 days per week. I still do it, although not as vigorously as in the pre UC days. If I didn’t exercise, I would be so much more depressed, right? Sheesh…my doctor would want to put me on yet ANOTHER drug. I don’t think so!!

          I am THE one in my group of friends and family that has taken the best care of myself all of my life. I have friends that drink too much…I have family members that are alcoholics…and do you think they are sick? Nope! It certainly is not ‘fair’! It actually makes me angry that these people care so little for their health. Stupidity! They poke fun at me and say ‘hah, look where being healthy got you’. Not too funny…ha ha…

          I took a drug called accutane in my 20s, for acne (I’m in my 40s now). At that time, there were
          no warnings that it could cause intestinal problems and diseases. It wasn’t long after that I was diagnosed with this stupid disease. Then, I had a few courses of strong antibiotics over the years flollowing, each time creating terrible flares of my disease. I believe this is why I got the dreaded UC. If you’re looking for answers as to why you maybe got it, think back to any antibiotics or acne meds that you were ever on. Even in early childhood…

          Thank you also for the kindness. We will get through this David…because we have to. Some people have had their colons removed, and most seem very happy with that decision. I could do it, but I am reluctant to, in case a cure is found later…you can’t ask to have a colon put back in, right?! That freaks me out. I don’t want to regret any more stuff in my life, like I regret taking certain medical drugs!! Thers’s no going back…

          I am off all meds at the moment…I just can’t take them anymore. I am very anti-med after all I’ve been through. The doctor has tried to convince me to go on imuran and remicade, which both frighten me. What the heck will those drugs do to me in the long term? They are like cancer drugs…and maybe if I had cancer, I’d take them…but not for this. I just can’t do that to my body. I am taking a strong probiotic, lots of vitamin D, and that’s about it. I am not recommending everyone do the same as me. Our UC is individual to each one of us. What works for me may not work for the next guy. I like to feel in control of my heatlh, and being off the meds helps me to do that. My symptoms have not gotten any worse, so why not, right?

          I’m hanging in there!

          Cheers,
          Bev:)

          • David April 28, 2012 at 12:08 pm #

            Hi Bev:

            Thanks for the reply, I enjoy reading your comments and thoughts. I haven`t been exercising regularily recently but I want to get back into a regular routine soon. I hate to make excuses but when you don`t feel good and you`re overwhelmed with other things in your life, I guess I just don`t feel like doing any exercise. I applaud you for sticking with it and working exercise into your life regardless of your health issues. I know what you mean about other people in your family that don`t take care of their bodies and are much healthier. I also have alcholics in my family and family members that never exercise or eat right and have very few health problems. It isn`t fair as we`ve said. Whenever I see someone who is morbly obese or someone who drinks like a fish, I think to myself, I`ll bet this person doesn`t have any bowel problems! Where is the fairness and justice? My mother just turned 90 last September and she is in great health for her age and there is no stopping her. She quit smoking 20 years ago and was a 3 pack a day chain smoker for many years. She`s always had a fairly decent diet but has also lived on snacks, desserts junk food and has always dumped salt on just about everything she eats. I`m 59 and I really doubt that I`ll live as long as my mother. I always tell her that she`s healthier than me, and that I must have about 1 percent of her genes and 99 percent of my father`s crappy genes. My father only lived to be 66 years old. He had UC for many years and always said that he would rather die than have his colon taken out. Well, that pretty much what happened. By the way, my father`s second wife`s name was Bev.

            You maybe right about the reason you ended up getting this dreaded disease with the antibotics that you were on earlier in life. It`s hard to know for sure. I also had bad acne when I was a teenager. I never took antibotics for the acne but I think I bought every acne ointment and gunk you could buy and slapped it on my face. I was always careful not to take antibotics because I was afraid of overusing them and know that it`s not good to do that. The only time I remember taking antibotics is when I had strep throat about 30 years ago. I`ve tried to look back in my life and figure out why I got this disease. In one of my UC books, I read that if you had a parent that had UC, there can be as much as a 35 percent change that you will get it. I also read that if you had a lot of stress and anxiety in your childhood, it could pull the UC out of dormancy later on in life. I`ve always been a type A personality and I did have plenty of stress in my childhood. My parents divorced when I was 10 years old and it wasn`t a very stable home life. My father had a violent temper and I was always rather afraid of him. Anyway I just think for me the genetic factor, the stress and anxiety, my personality traits, it`s as good a reason as any as to why I was diagnosed with UC.

            That`s great that you are off all meds at the moment. I hope you can continue to manage your UC without meds and hopefully even get better. I wish I didn`t have to take any drugs for the UC. Before I got this disease I never took anything except vitamins and an occasional Advil or Tylenol. As I wrote earlier, I went through all the non steroids and the steroid drugs trying to get this into remission. I`ve been trusting the advice and recommendations of my doctors but maybe that`s not such a good idea! I fought the Remicade option for a long time and then I felt like I had no choice. After 3 infusions I started to feel great and felt that the UC was in remission. I began to beleive that I found the drug that finally worked for me. Then about a week before my 4th infusion I started to flare again and it`s gotten much worse since then. I`m scheduled for my 5th infusion late in May and I really don`t think that it`s going to do any good for me. I told my doctor that the gremlin in my immune system must have cracked the Remicade code. It`s like my faulty immune system is stronger than any drug available and will keep resisting any meds used to treat the UC. I don`t know what to do at this point. I feel like I`m running out of options. The Remicade is costing my health insurance provider $6,000. per infusion. I had the feeling of remission for about 2 months after 4 infusions. So that`s $24,000. for a couple of months of feeling pretty good! What a waste of money!

            At any rate I hope I haven`t bored you with my long diatribe. I hope you are doing well and wish you the best with managing your disease, and hopefully it doesn`t get any worse. Be strong Bev and hang in there. You sound like a nice person, smart and ambitious as well. Thanks again for your encouragement and kind words.

            Sincerely,

            David

  6. Bev April 30, 2012 at 12:27 pm #

    David!

    You never bore me! On the contrary, my friend. I think voicing our thoughts on the whats and whys of this disease actually help us to sort of figure things out! Sort of…

    You are so spot on about your colitis most likely being familial. Your father actually had it. There you go. You MUSTt have got more of his ‘crappy genes’ than your mothers’ for sure, like you said. There are no bowel problems in my family at all, so I am pretty convinced on the whole accutane / anibiotic correlation for mine. Now…if I could only figure out how to cure it…I think a person who has this disease just may be the one to crack it…we want a cure worse than the scientists and doctors (and drug comapnies), for sure!! It’s murder to live with it, I think. 24 / 7.

    By the way…I am a real people ‘watcher’, especially now that I have UC. I look at people who are clearly doing unhealthy things, or that look unhealthy, and think the same thing as you do…I’ll bet they don’t have UC!! I sometimes feel like I am looking through a pane of glass, and that real life, and happiness, are only happening on the other side of it. Sorry…that sounds so pathetic…I don’t mean it to! It’s just the reality of UC. It’s an every day event. And, not in a good way!

    Anyway, I am still not taking any meds. Not without symptoms, though. I have some bleeding, and some cramping…but I swear that it was worse while I was on the asacol. I had more blood, raging looseness (if you get my drift), worse cramping, headaches, and the worst side effect of all, that I was so tired of living with…nausea. Nausea really takes the fun out of life, at least, for me. There is no joy for me, when I am nauseated. None. I was like that for years while on the asacol. It’s no wonder I am thin. I was rarely ever hungry. Hunger is what I miss from my ‘old life’, most of all. Good, old fashioned HUNGER. I never get that wonderful feeling anymore. I have felt it slightly since I stopped taking the asacol. Hopefully, it will improve even more. I would love to feel ravenous!!

    Thank you for YOUR kind words, David. Perhaps, we have become kinder, gentler people, since we have had to deal with this disease. I was always sort of like that anyway…but now…well, let’s just say I am ‘emotional’! Another thing…my so called type A personality, along with alot of worry and fear when I was a little girl and teen regarding my stepfather’s alcoholism (in which he would drink to the point of not being able to walk, and then proceed to drive my poor non-driving mother, and myself, on Toronto Canada city roads, as well as many an Ontario highway, in our huge Ford Meteor…aaah the good old 60s), probably did contribute to my bowel difficulties. I have become quite the worrier, thanks to my childhood. I can’t seem to ‘lose’ that personality trait to this day! Go figure…

    On that note, I shall stop talking now! Please never feel like I would be bored by anything you have to say. I love the way you put your thoughts into words. It’s like listening to you talk in person!

    Cheers,
    Bev:)

    • David April 30, 2012 at 6:24 pm #

      Hi Bev:

      Thanks for your reply, it`s great to hear from you and read your thoughts and words. I don`t have a lot of time to write just now. I don`t have my own computer at home so I go to my local library and use the public computers. The library is about to close soon so I won`t have time to write anything of length. Eventually I`ll have a computer at my home, but for now the library works. I`ll write more later on this week. I have some more thoughts about UC, people, life in general and Canada!

      Thanks,

      David

    • David May 3, 2012 at 6:55 pm #

      Hi Bev:

      Sorry for the delay, haven`t had a chance to respond to your last posting until today. I`m glad that I haven`t bored you with my writings. I really enjoy reading your comments and thoughts. You write very well and have very good observations. I also feel like I`m talking to you in person when I read the words that you write.

      I`ve been trying to deal with this current UC flare for several weeks now. My doctor has put me back on Prednisone for a couple of months and still wants to give the Remicade a chance to work. My next infusion is in late May and then I would have another one 8 weeks after that. I hate to have to go back on the Prednisone but I`m feeling better already and hopefully it will carry me through the next infusion or two and the Remicade can take over. I`m also taking Asacol and I don`t like taking it but my doctor feels that the Asacol will help prevent colon cancer. I don`t seem to have the side effects from the Asacol that you`ve had. I do get nausea occasionally but I don`t get the headaches, and the bleeding as you have. For me I just don`t think the Asacol does anything to help but if it really does help to prevent colon cancer, then at least that`s one benefit. Sorry to hear that you never feel hungry anymore. You`re right, it really does take the fun out of life when you can`t feel hungry and be able to enjoy good. I`ve been on Prednisone for so long my appetite is always pretty good. One of the side affects of Prednisone is increased appetite which I`ve have noticed. I have a healthy appetite but I try to stay disciplined and eat small meals. Luckily I`ve been able to keep my weight close to normal for my frame. I`ve been 5 or 10 pounds heavier from time to time. I hope that you will eventually regain your appetite and be able to feel “ravenous” again.

      I wish I could get off all meds together like you have and keep the UC under control. I read about other people`s experiences with UC and some people have gotten help with more natural and homeopathic approaches to treating their disease. I`ve tried some of those things but didn`t have a lot of success so far. Have you ever tried the SCD diet? I tried it for awhile but wasn`t able to stick with it. I have the book by Elaine Gottschall titled, Breaking The Vicious Cycle which outlines the Specific Carbohydrate Diet (SCD). It`s an interesting book and I think it has helped a lot of people but I don`t know if realistically one could stick to that type of a strict diet long term.

      I agree with you when you said that the person who has this disease, just may be the one to crack it. I know we all want a cure and hope there will be one coming soon. I think for now we will just have to try and do everything we can to keep ourselves health and not let this disease rule our lives. That`s easier said that done I know. I know when I`m flaring and not feeling well, I think about my defective colon from the time I get up in the morning, until the time I go to bed at night.
      If my doctor`s current treatment plan with the Remicade doesn`t work out for me. Then I have to try and explore other options, maybe try and get off the meds and try a holistic approach. I might even visit the Mayo Clinic for a complete evaluation. It`s only about a 75 mile drive from Minneapolis.

      I really miss being able to do all the things I use to before I got this dreaded disease. As I told you, I use to be very athletic and active. I did a lot of bicycling, cross country skiing, and went to the health club often. I hope to able to get back to enjoying those things if I can get a little healthier. I also use to do a lot of motorcycle touring. I use to take a motorcycle trip every summer in my BMW motorcycle. I`ve traveled through all of the lower 48 states on my bike, and every Canadian Province bordering the US. In 1989 I made a trip from Minneapolis to York, PA for the national BMW rally. I rode across Ontario and spent a little time in Toronto. I thought it was a beautiful city and reminded me of a European city. (I spent 2 1/2 years in Europe while stationed there in the U.S. Army). I spent a couple of days in Quebec City and met a french BMW rider at a restaurant and we`ve been friends ever since. I really like what I`ve seen of Canada and would like to do some more traveling in Canada again some time in the future. What do you think of the Canadian health care system? I have pretty good health care coverage but every year it get`s more and more expensive.

      I think thoughts are accurate about becoming kinder, gentler people since we have to deal with this disease. I`m sorry to hear that you had to be in fear and worry about your stepfather`s alcoholism, and driving your non-driving mother on the roads in Toronto, Canada in the huge Ford Meteor. I try to be kind to everybody and treat people the way I`d like to be treated. I think I have a little more patience since I`ve had this disease. By the way, after my parents divorce, my mother didn`t drive either and we grew up without a car in our family. My mom walked and rode her bicycle everywhere. I always think that all that exercise has contributed to her longevity.

      Well I should bring this reply to a close for now. The library is about to close in about 10 minutes. One of these days I`ll buy my own computer and I won`t have to worry about that! I`ll close with a tacky UC joke. What do you get when you cross a used car salesman and a person with Ulcerative Colitis? You get a really crappy deal! That is so bad!

      I hope your feeling better today Bev and your health will improve. You`re a good person and deserve to be healthy and happy. I hope I`ve brightened your day, you`ve brightend mine.

      Take Care,

      David

      • Bev May 5, 2012 at 2:52 pm #

        LOL!!!! That was an AWESOME ‘crappy’ joke, David!! Fabulous…

        Yes, I do feel better today. You know, I’m not really 100% sure that this disease can even be treated with just natural stuff, including probiotics. My doctor was not happoy, when I told him I’d gone off the asacol altogether. NOt happy at all! I feld like a naughy scolded student, sitting there in his ofice, all small…lol. I was not aware of a cancer benefit from the asacol, but it just may be true. It is ASA (or aspirin) that actually reaches the colon, and coats it, after all.

        I have never tried any specific diet at all, David. I do agree that what I eat, sometimes affects my UC, and sometimes, the very same fooid, doesn’t! I don’t think that I could adhere to a restrictive diet either. I do have one excellent thing to report…I have an appetite again!! I think it was the asacol that was hindering it. I have actually felt that ‘ravenous’ feeling a few times this week! I swear, that the first time in about 10 years! I was right…I do love that feeling. It makes you feel alive.

        I am also looking in to taking ths drug called LDN (low dose naltrexone). If you can, next time you are on a computer, google the LDN HOMEPAGE. You will not believe the trials ans studies on this drug. My doctor is probably going to prescribe it to me this coming week. I know I am very ‘anti-drug’, however, I am willing to give this one a try. Somebody here on this website, said that her doctor said that everybody who has UC, SHOLUD BE ON THIS DRUD! I thought that was a fairly heady claim, so I read the LDN website, printed it all off, and gave it to my skeptical doctor to read. I am hoping he agrees that I should at least try it. Apparently, it has virtually no side effects, in it’s low dose form. The drug is used, in a higher dose, to help people get off alcohol and heroin, if you can believe that! I hope that you may want to try it too. You would have good access to it in the U S of A!

        As for our healthcare system here in Canada…I guess it’s pretty okay. I know that you have to have health insurance there. Our doctors visits are covered by a universal sort of system…however, it is far from perfect. We do have to wait a long time to see specialists, sometimes. Like, for instance, if you ELECT to have your colon removed here, and it is not an emergency, it will take 3 years to even see the surgeon for a consultation. If you HAVE to have it removed, and it is sort of an emergency, but you aren’t going to die, it still takes 3-6 months just to see the surgeon! I’m not sure how long it takes after that to actually have the surgery. If you need the surgery, because your colon has perforated, and you will die unless it is done, it is obviously done immediately. All surgeries (except elective) are covered under our healthcare system. I still think it’s pretty good all in all. My husband paid for all of my UC meds, because he gets 80% back through his benefits plan at work. We only have to pay 20%. Alot of people do not have benefits at work, and have to pay for all of their prescriptions. Just people on welfare (social assisstance), get their drugs for free in Canada.

        Please keep writing your thoughts, and anything new about your UC. I would like to know about how the remicade works, and makes you feel, okay?

        Cheers for now,
        Bev:)

        • David May 6, 2012 at 12:08 pm #

          Hi Bev:

          Nice to hear from you again. I wasn`t sure if you were going to write back or not. I thought you might of been upset with me because of my really bad UC joke or something else I might of written.

          Thanks for the suggestion and information about the LDN drug. On one of the other threads titled, “Domino Effect of UC”, I left you a reply with some websites to check out about LDN and it use with UC. I want to spend some more time reading about LDN and other people`s experience with it. I`d be willing to try it as it sounds like it might have a lot of benefit with out a lot of side effects. I might want to copy some information as you have and show it to my doctor. Currently I have to stick with the plan my doctors have set up for me with the Remicade. I would like to be drug free like I was before I got this disease but that`s not an option for me right now. My doctor has suggested that I add two more Remicade infusions per year to see if that keeps the colitis in remission. Currently insurance only pays most of the cost of 8 infusions per year instead of 10. If I have to pay for the cost of 2 more infusions out of pocket, then it`s out of the question. Each infusion costs about $6,500. and I couldn`t possibly afford to pay for a couple more infusions at that cost. Especially when there is no guarantee that the Remicade will keep my colitis in remission anyway. I wish I didn`t even have to be on the Remicade but if it works, then I guess it will be worth it. I really think the doctors are getting a kick back from the cost of these expensive drugs and that`s why doctors are always so quick to treat patients with costly drugs. I think if a person can manage their disease with alternative methods and treatments, they`re probably better off. Every drug has risks and side effects and for some people, the cost of some medications is prohibitive. I hope you can stay med free as long as possible. I`ve tried the probiotics and other things but the natural stuff just doesn`t seem to work for my chronic colitis.

          If your doctor prescribes LDN for you, I hope it works for you and helps your condition. I`d be interested to hear how it`s working for you and what you think of it. Glad to hear that you have an appetite again. Maybe it was the Asacol that was hindering your appetite. I suppose your doctor was upset when you told him that you went off the Asacol. I know what you mean about feeling like a naughty scolded school student sitting in the doctor`s office. I don`t always do as the doctors tell me to do. It`s not easy to deal with this disease on a daily basis and do all the things the doctors want you to do. I think the doctors are guessing sometimes when the recommend and prescribe things. That`s why they call it medical practice!

          Some interesting points you made about the Canadian health care system. I think a lot of us here in the states believe that Canada has a very good health care system. I know here in Minnesota, many people drive up the Thunder Bay to buy medications for much less cost that they would have to pay in the US. It`s unfortunate that you have to wait so long to see a specialist or have elective surgery if it`s not an emergency. It sounds like your system isn`t perfect but neither is our system in the US. Overall we have very good health care but it`s very expensive and far from perfect. We`re trying to reform our health care system but there are so many apposing views, it`s difficult to be able to change things. It is very expensive but if you have good insurance, you can usually see a specialist when you want to and you wouldn`t have to wait a couple of years to have elective surgery. I would like to see a universal option for those who cannot afford to pay the cost of good health care insurance. Like the Canadian system, people on welfare or at the poverty level, their prescriptions are subsidized, and when they need hospital care, hospitals have to treat them. I guess there is no perfect health care system that works for everybody.

          Well I guess that`s about all I have for now. Thanks again for the information and your thoughts.

          Stay in touch Bev, nice to hear from you and I`ll write again when I can. No more bad jokes, I promise!

          Be good,

          David

          • Bev May 9, 2012 at 11:36 am #

            David…I did, in fact find your comment on the DOMINO EFFECT post. I commented back to you there, as well!

            I hope the remicade works for you…man do I! It is really expensive here as well (about $7000), but it is 100% covered in Canada. Aren’t we lucky about that, right? I can’t imagine having to pay for it! I don’t know how I ever could if I had to.

            I can’t wait to try this LDN. I am having almost no symptoms still, but I want to try LDN anyway, to hopefully keep the UC at bay.

            I’m sure we shall talk (write) again!

            Cheers for now,
            Bev

  7. JamieIsLame
    JamieIsLame April 30, 2012 at 6:37 pm #

    a lot of this rings bells with me.

    for the energy I suggest taking some sort of vitamin b supplements if it’s not an anemia problem.
    I get fatigued so easily, I feel like i’m a 60 year old man sometimes when i’m only 18 so I know how horrible it is.

    also, I noticed that you’re only on pentasa, which is great as long as it’s working for you.
    it’s also great because it means you have a lot of options before they go taking your guts out! so I wouldn’t even worry about that.

    I know it feels like your life isn’t on track but trust me, there’s little things you can do that’ll make the energy problem not so much of an issue, just ask your doctor about prabrinex shots, it’s just vitamin b and c in high concentrations that’s given intravenously and instantly makes you feel more alert.

    hope this remission lasts well for you and I hope you find a way to deal with the other UC related problems

    – Jamie

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No matter what, colitis flares don't last forever, don't forget it:)