Domino Effect of UC

Hi,
I am from England and live an active life involving many different sports and I get to travel around a bit to different countries through work and personal ambitions. Worried how my life will be determined by UC!!

Symptoms:

Up to 6 BM a day. Once I have a soar knee during a ‘flare up’ but I feel its been there on off for years due to my sports involvements..

My Colitis Story:

I want to start off by saying this site is a great platform and I have learned so much from its existence…Well Done to everyone involved. I want to now break my duck and write what I feel is an interesting story, with the hope for some advise and opinions. I can say so much about what has already happened (and yet there is more to come) but I will be direct and informative as I do not want to loose you as I need help.

Could it be in the Genes? Possibly!!!

OK, so when my eldest brother was 16 he was diagnosed with Arthritis. My parents initially took the religious route rather than the medicine route which has now…some 20 years later made him bitter, angry, sad, moody and dismissive of trying new things. Some 7 years later my second eldest brother found blood in his stools, unfortunately he did not do anything about it for more than a year. It got to the stage he was going through the night, during the day constantly 10+ urgent BM. He was diagnosed with UC which had affected his whole Colon. Some 6 years back from today my little sister found blood in her stools. She went through many different tests until they diagnosed her with Mild CD(Crohn’s Disease). She didn’t go through the urgent bathroom visits but was put on Colifoam enema initially but is now on 3x 500mg Pentasa a day. About 2 months or so ago my younger brother had a weekend where he was having 10+ Bloody BM a day with intense cramps. After visiting the hospital and giving him some steroids he went back to find his stools appeared solid so they said nothing was wrong…Hmmm. About a month ago I started going 6 times a day with watery diarrhea and blood. It took two weeks dealing with a casual GP before I decided to take action and book in to see a specialist. In between seeing him and my last pointless meeting with my GP I went to A&E where they took biopsies and found inflammation in part of my colon (not a full colonoscopy was achieved). Fast forward to this week and visiting the specialist we had the results from the biopsies suggesting Active Ulcerative Colitis. I was keen to get a full colonoscopy done but the specialist suggested to get me on meds to bring down the inflammation.

He has got me on 50mg Prednisone, 3 x 800mg Asocol, 2 x Colifoam Enema a day.
My first question is, is this an extreme dosage for me?

It is hard for me to determine where I sit on the scale of UC, or even if this matters. My symptoms has been 6 BM a day. No pain, no cramps, no extreme weight loss, no fever or urgency (although maybe once or twice but generally eat but not have to go). In-fact apart from an increased number of Bowel Movements, there has not been a change to my lifestyle. I think, and could be completely off here, but the more the colon is inflamed the more the cramps or pains occur? If so does this mean mine is not as inflamed? So confused…

I am on the program of meds which was prescribed, it’s been about 3 days and so far the routine of it works with my current lifestyle situation but it is starting to get annoying. I have a Trade show coming up (will be staying in a hotel) and my girlfriend wants me to come back to her parents soon for a long weekend. I know the current med program is short term but my concerns (which I have not overly dwelled on so far in this) are dealing with this long term. I have been able to speak to my brother (who now lived in Canada and at the time of his symptoms I wasn’t around but he is now on IV drip every 8 weeks) which has been helpful. Both him and my sister (both at the complete different ends of the UC spectrum) advise me I can go on to live a normal life without this disease really presenting its ugly head. I know from reading past posts many would argue this fact.

I am about to turn 30, I am well traveled and planned another big trip to Asia and was going to take the chance to propose to my girlfriend, life appeared to be there for the taking and now it all seems to be up in smoke as I have to re-evaluate my future.

I would be keen to find some help in learning if my symptoms are mild, moderate or serve and if this matters towards dealing with UC? Is my medication program right for me currently? Has anyone had worse symptoms but been on less dosage? I know everyone’s experience is individual and I guess I am only after opinions and experiences please… My concern is long term and if it is not under control and I am in constant ‘flare ups’ than the disease will spread and get worse!! Is this the sentence with having this?

I guess some of the other fears with Colon Cancer, Colon removal or life on medication is something I will only ever find the answer to in time. I am in a state of Fear about this whole new part of what is going to be my life long partner.

Thanks for listening in a time when others around me seem to down play its importance.

Where I’d Like to be in 1 Year:

Like my sister who keeps on saying ‘Sometimes I don’t even think there is anything wrong with me’.
I will never be able to control the implications of long term medication but my hope is the right diet, natural and medical medicine can give me the life I want. Also I hope I am engaged :-)
My UC Medications:
Currently on;
50mg Prednisone, 3 x 800mg Asocol, 2 x Colifoam Enema a day.Awaiting the long term Medication proposal

written by: “UC Family Boy”

submitted in the Colitis Venting Area

 

fear

25 Responses to Domino Effect of UC

  1. dawn May 2, 2012 at 6:25 am #

    Hi UC Family Boy,
    Yes, Yes and no. My bout with UC was about the same, this is what I did.
    Read The Maker’s Diet : by Jordan Rubin and any others he has written. Pretty amazing story.
    In the begiinging of diaganose, I went on his Garden of Life products FYI, Primal Defense as instructed, I also took other products he has, but the main two are these mentioned.
    I also researched Therapeutic essentials oils, Gary Young’s and drank his remedies for UC, not tasty but kept me in remission with the next Colonoscopy. The Dr. could not figure out why I had been diagnoised with UC and given Pentax, which he said is a placebo! And that the Dr. whom diagnoised me was a very reputable DR.
    Well it was the natural supplements I was taking! Hello! I wanted to give any and all colonoscopy DR.’s a list of what I was taking and say shame on you if u do not give a paitient an option.I no longer drink the essential oil (one being oregano combo) but I take oregamax by North American Herb and Spice.
    I also have a homepathic on hand for occassional spasams, called Spascupreel: by heel can be ordered thru The Vitamin Shoppe. It works like prednisone with no nasty long term affects. Maybe once evey two months I might take a 10 mg prednisone or even a 1/2 and it works.
    If u r a smoker homeopathics do not work so well as they have to melt in your mouth and enter the mucous membranes and smokers have too much toxins in mouth. They are best taken 15 mins before any food or drink, plus wait up to 15 mins after and are not to be stored near herbs or oils.
    Good luck, I hope this helped. Oh I also order my Garden of Life products thru The Vitamin Shoppe.com take Care
    UC at bay in Michigan!

    • Anne Jacobs May 2, 2012 at 8:09 am #

      Hello Dawn,
      I just posted my reply to Domino effect. I was wondering if you could share more information with me about your specific approach and which supplements you are using. I am continually researching things to help my daughter. Currently, we are careful with foods, use VSL #3probiotics, Aloe, D3 and Vit C. I have heard about oil of oregano, but don’t know much about it. Take care. Anne in CA

      • Doris Burdick May 3, 2012 at 12:53 pm #

        Oil of wild oregano in capsule form is better for ulcertive colitis. L-Glutime capsules, Aloe Vera juice inner fillet/twice daily.all these
        Plus digestive enzymes and probiotics. Is the UC caused by antibiotics if it is research on line. Saccharomyces Boulardii is key to take if UC is caused by antibiotics. I also eat Gluten Free.D 3 Folic acid and Vitamin C.
        Fermented foods like kosher dills and sauerkraut and yogurt (Greek is best) and buttermilk helps plus Kefir.
        Go on line Read and Read some more.
        I also take a lot of Vitamins and cannot eat white flour,white sugar …. NO SODA’S. NO LUNCH MEATS THAT ARE PROCESSED
        YOU WILL FIND LOTS OF HELP ONLINE !!! GOOD LUCK AND GOD BLESS
        80 years young

  2. Sabine
    Sabine May 2, 2012 at 7:59 am #

    Hi UC Family Boy, your symptons to me sound very mild…. I cannot make any commnts regarding your prescribed medicine.
    BUT, do not reevaluate your future. Do what you want to do, because otherwise you let your disease take over.
    Trust me, it could be a LOT worse, to that point that you cannot travel, feel to sick to get out of bed etc. so, enjoy your life every day to the fullest as best as you can.

  3. Anne Jacobs May 2, 2012 at 8:05 am #

    My 15 year old daughter was diagnosed with UC two years ago. We tried Sulfasalazine, Asacol, and Balsalaside but they all made her symptoms much worse. The sulfasalazine caused suicidal ideations and the asacol/balsalaside worsened her colitis. She was put on 40 mg prednisone per day for 4 months during which time I researched alternative approaches.

    She had a FOOD SENSITIVITY Delayed IgG test done through Sage Laboratories in Florida and we learned that her body had created antibodies against certain foods. So, we eliminated those foods from her diet and she improved immediately and we were able to taper off the prednisone. Currently, she is not taking any conventional medications, but we do use supplements. The basic protocol is:1) food restrictions and rotation of all foods on a 4-day rotation; 2) use of VSL #3 Probiotics (12 per day); 3) Use of ALOE ELITE that helps to soothe the gut; 4) Vitamin D3; 5) Vitamin C.

    She has been doing well for 8 months now. 1-2 formed bowel movements per day. Sometimes there is a small amount of blood, but that is usually in response to us trying to introduce a food item that she cannot have yet. For example, she is a busy kid and very active in sports. Occasionally, we pack a sandwich in her lunch and she has IgG reactions to the wheat and gluten resulting in a small amount of blood clots in the formed BM. Everyone has different sensitivities, so it is important to have the blood test to know which specific foods are reactive.

    Whenever we see blood, we get a bit nervous, but then just remember to go back to the dietary restrictions and everything clears up in a few days. We are getting better at this and have found lots of food options, recipes, etc. It is a bumpy road, but she feels great, does not have any diarrhea, her weight is constant, she has no pain, and her friends are all very supportive. The way I see it is that some people choose to be Vegan, Kosher, etc, so this is not that much different.

    Just not ready to commit to a lifetime of medications or surgery…

    • Bev May 2, 2012 at 9:26 am #

      Faulous approach Anne Jacobs!

      I too, am trying to live med free. I take a great probiotic, vitamin D, and a tbsp black strap molasses every day, and that’s about it. (Black strap molasses has magnesiun, iron, and copper in it, and I have read that it may aid in UC, so I just added it to my regimen).

      I have no pain or loose stools since stopping the asacol that I was on for 13 years. It made my UC worse. I know it’s not like that for everyone, but it was for me. It also gave me headaches, painful cramping, loose stools, lots of blood, bloating, nausea, and took away my appetite. I feel so much better off of it. I am still bleeding, but not as much, and not everyday! My stools are pretty much normal now as well. What you say about certain foods perhaps being the culprit of the occasional blood will help me immensely! Believe it or not, I didn’t even consider that. I shall now go merrily on my way, not over worrying the bit of blood that I see now and then!

      Thank you,
      Bev:)

  4. Brittany May 2, 2012 at 8:33 am #

    I can’t say for sure, but I don’t think this is too big of a dose, if you are still at a healthy weight. I think it all depends on weight and symptoms. I was only 10 and weighed about 70pounds when I was first diagnosed and was on the same dose of steroids as you are now. I had been dealing with the bloody and loose stools for months, so my case had gotten pretty severe. I think the best piece of advice that can be given in regards to how severe your case is, is to learn the signs and catch them early. I am on remicade infusions now, but if I start with symptoms in between I am able to control them with a slight dose of steroids, about 20-30mg. In time you will learn your body and the signs, so you can head things off before they may become severe. For me, key is longer I wait without any action, more severe the case becomes. I would have to agree with everyone else’s comments as to, don’t let it define your life. It can be easy to let it define you at times, and it make take some experimenting, but once you find what works for you, you can live a normal life where it doesn’t limit you much.

    • Bev May 2, 2012 at 9:30 am #

      Brittany…I love what you say at the end of your post! Tis true that we can forget, and let the disease ‘run’ our lives at times. Very true…

      It made me feel so good when you said, ‘once you find what works for you, you can live a normal life, where it doesn’t limit you much’.

      That’s the best! (I’m smiling wide right now!!)

      Cheers,
      Bev:)

  5. Camille M
    Camille May 2, 2012 at 9:01 am #

    I took the same amount of prednisone beginning in August two years ago. I have been off of it for a year as of this month (May). I do not ever want to go on it again, because it changes your body and the side effects are bad. It was, however, very effective at putting me in remission. This was my third flare in 11 years and it was caused by taking antibiotics. It is the first and only time I have taken prednisone.

    One thing that also helped my symptoms, even with prednisonbe, was going on the Specific Carbohydrate Diet, or Paleo Diet. Eliminating grains and lechtins has been huge in managing my symptoms. For many people, especially those with autoimmune diseases like UC, wheat and other grains and lechtins are like sandpaper in the bowel. The inflammation they cause there, and in other parts of the body, is very harmful.

    Another thing I will be trying and have heard wonderful things about is low dose naltrexone. I am seeing a doctor with UC next week who says anyone with UC should be on it. I will find out more about why and how it works then.

    Flares come and go. Managing them is a process of learning what diet, supplements, and pharmaceutical drugs work best. Keep at it, but ALWAYS get another opinion. This site should give you lots of info and treatments to investigate and ask your doctors about.

    • Bev May 2, 2012 at 9:50 am #

      I Camille…

      Just read your post and researched this low dose naltrexone. I am sort of anti-drug, but this low dose seems to not have any side effects, I read. I am sort of excited about this. I wonder if there are long term side effects? In the high dose, it is actually used to treat alcoholism and heroin addiction.

      Can you please let us all know what your doctor says about it? If you go on it, could you let us know how you feel on it, and if it works?

      It would be welcomed and appreciated!

      Cheers,
      Bev:)

  6. Therese
    Therese May 2, 2012 at 11:18 am #

    Hi!

    I was recently diagnosed in Jan 2012. I was having bloody loose stool 3-6 x a day, abdominal cramps, gas, urgency. I was put on 40 mg Prednisone, 4 x Lialda (Mesalamine), and enemas. I’ve been able to taper down to 5 mg and 2 x Lialda’s a day. Hopefully will be off Prednisone soon. I would do whatever the specialist tells you. Many people on this site are all about homeopathic medicine. There isn’t anything wrong with that, but if say Aloe juice works, it should be able to be replicated in a study. Most of these supplements can not be verified, which should make you suspicious of their efficacy. One thing that I do like is the SCD Diet. Rush Medical University is doing a study and so have a few smaller clinics with good results. So, when you are looking at how to proceed, I believe your medical doctor’s advice should come first and then the homeopathic stuff should supplement. So, now I take the low-dose Prednisone, the 2 pills of Lialda, adhere mostly to the SCD diet, and take Curcumine supplement(an anti-inflammatory and a verifiable medical study showed that taking it was effective in reducing symptoms), and am looking to get on the VSL and make my own yogurt. One of the reasons you should also listen to your doctors is these medicines may only work once, before your body builds up an immunity. That is why you are on a high dose. Your doctor wants the major inflammation stopped so your body can heal and maybe the homeopathic stuff can work to make it better. You definitely don’t want to mess up getting the flare gone, because it could come back worse and then you’ll have to go onto harsher drugs. If you read the stories, many people think they’re ‘healed’ and they go off their meds only to be facing another flare that is harder to control.

    • Bev May 2, 2012 at 9:58 pm #

      Good points, Therese.

  7. Trish May 2, 2012 at 1:44 pm #

    Hi, UC Family Boy. Six BMs a day sounds like what I had when they put me on 2 x Pentasa a day (sorry, can’t remember the dose) and nothing else – no steroids, etc. When I flare, that’s what I tend to get – 6 bms starting about 6.00am and lasting till 9.00am, after which point I have go back to bed for a bit and then drink rehydration mix all day. Your meds do sound like a lot and I would suggest you get a second opinion. I am sure there is a genetic component to all this – there isn’t a single healthy digestion system in my entire family – but you can live a pretty normal life with it all. Try not to worry about the future (yeah, I know….). Worry is the thief of time – your time. I wish I had back all the nights I’ve spent worrying about crap that never happened. Get yourself on the SCD, practise meditation or another relaxation technique, and propose to your girlfriend – live your life, and good luck with it. :) Trish

    • UC Family Boy
      UC Family Boy May 4, 2012 at 2:33 am #

      Trish,
      ‘Worry is the thief of time’ ~ LOVE this saying, already got me not worrying…

      I think it could be a high dose as after 4 days my BM are normal but I will do the taper down program as I don’t want to mess up all the good work so far.

  8. UC Family Boy
    UC Family Boy May 2, 2012 at 2:11 pm #

    Hi Everyone, Some really good advise there, puts a smile on my face.
    ‘The Maker’s Diet : by Jordan Rubin’ – Will definitely look into this, already got ‘BREAKING THE VICIOUS CYCLE’ on order. Thanks for the kind words Sabine, you and Brittany are stop on. I must keep my head up.
    Just to let you all know, I had my meeting with the GI today and although he didn’t expect an instant result to the Meds, he was pleased to hear after exactly 1 week I am having 1/2 BM without blood or diarrhoea. He did open up another question in my head when he said we would need to check that it is UC and not CD as initial scope showed Sigmoid and Descending inflamed and not the Rectum (even thou biopsies concluded UC)!!! And with my sister with CD I could also. I feel so lost with this, some good news comes with some bad news it seems :S
    Still keen to hear peoples experiences with meds, diets and if anyone had UC without effecting there Rectum?
    Thanks
    UC Family Boy

  9. california karen May 2, 2012 at 3:25 pm #

    hey this is california karen and i am feeling right now like ide rather have cancer! serious i had another hosp visit last thursday and got a er doc that was a prick,! sent me home on same antibiotics ciprto and metro somethin and it turns out the hosp really didnt try to reach my GI at all . what the hell is that about! Fuck them all! sorry my french! anynway Idid get to do a stool sample anywy and went to return it and couldnt use it because the gave my the vile with the liquid in it, their dumb!!!!!!!!!! so had to give another for CDIFF . and my husband is being a dick! and ive hd diareah since i left the ER and the meds made me ITCH for 2 days cause no sleep! so went to GP he is great! gave me something fo itch and some florasipam! wow i slept.. My daughter took me yesturday and we pickid out a flannel backpack so i could use it for a diaper bag and it would be discreet for me I see my Gastro doc on may 7th, it seems i open my mouth i get dh! someone please tell me if you have had this kind of crap from health oroviders! I cant live this way!

  10. PeterNZ May 2, 2012 at 4:02 pm #

    Mate,
    That is an average dose and you can still do anything you want.
    She’ll be right,
    Peter

  11. Trish May 3, 2012 at 1:01 am #

    UC Family Boy: it’s harder than you might think for the doctors to tell the difference between UC and Crohn’s. UC can jump around in your gut – mine has – and it can also inflame the lower part of your ileum. Fingers crossed for you that it’s ‘only’ UC, but remember that whatever happens, the majority of people with both diseases now have normal life expectancy – get yourself on the SCD pronto, and get that second opinion. As Therese said, they may be hitting you with major meds now to get the flare under control, and you can always wean off. Good luck, Trish :)

  12. Bev May 3, 2012 at 8:57 am #

    CAN ANYONE COMMENT ON THIS DRUG, LDN (LOW DOSE NALTREXONE)?

    HAS ANYONE TRIED IT…IF SO DOES IT WORK?

    THANK YOU

    BEV:)

    • David May 5, 2012 at 11:00 am #

      Hi Bev:

      I haven`t heard anything about LDN until I read this thread. I would like to find out more about it my self and if other people have been helped using it. There are a couple of good websites that address this topic as related to ulcerative colitis and LDN.
      http://www.lowdosenaltrexone.org.
      http://Idn.proboards.com
      htttp://healingwell.com (just started Low Dose Naltrexone…anyone else taking this?)

      Hope your doing well Bev.

      David

      • Bev May 8, 2012 at 9:26 am #

        Hi again, David,

        I am off to the doc on Thursday to get a prescription for LDN. Although, I appear to be in remission at the present time, I don’t want the UC to rear it’s ugly head again, so I’m thinking this ‘new’ drug may just be the ticket to keeping it in remission.

        Man, I sure hope so! I think we have to get the word out to ALL UC and other autoimmune disease sufferers that this drug is available, and that maybe we should all give it a whirl. It seems to have virtually no side effects in it’s low dose form. Sounds alot better than the drugs we are usually urged to try (remicade, imuran, steroids, etc), which have alot of side effects, and can be dangerous. This LDN, apparently, ‘boosts’ or ‘regulates’ the immune system…it doesn’t SUPPRESS it, like those drugs like humira and imuran…it just doesn’t seem right that we would ever want to suppress our immune systems…

        I PROMISE to keep everyone abreast of how this drug pans out for me! I am sort of excited, which I’m not usually, about this particular drug!! (I hate the word ‘drug’).

        WATCH THIS SPACE…

        Cheers all…
        Bev:):):)

        • shelly in maine May 8, 2012 at 3:30 pm #

          Hi bev,
          Just wanted to say good luck. I have read up on it for for a while and some people have posted on the CCFA site. I have a friend who is a pharmacist and he says it sounds very promising. I did read a pub Med article that was not so promising though. Also, the dosing can be tricky so read up some more…be wary of their own website it will only give you the positives. Read some current blogs,etc from people actually taking them. I was wondering why you are taking this now if you are doing pretty well (knock on wood!)? Just wondering? How will you know if it works or if you end up building a tolerance to? Sorry to question, but I guess that’s we longtime skeptical uc’ers do! I’m anxious for more studies on it…a lot less side effects,but there are some since many had to stop taking it and drop out of the study. Anyway, best of luck whatever you do and keep us posted. I like to keep my options open…i’m still battling out of a flare, iritis with Rx Vsl 3,omegas and close to SCD diet, positive attitude and luck and lots of hope!! Good health :-) shelly.

          • Bev May 9, 2012 at 11:46 am #

            Hi Shelly in Maine…

            I am actually doing pretty good so far, still! I want to try the LDN because I would like to get complete remission (I still have a bit of blood…noy daily, but maybe 3 times per week). All of the other symtoms are gone.

            One thing that has seemed to happen is that I am extremey sore…like aching all over. I know that I have some osteoarthritis, but since I have stopped the asacol, I have been painfully reminded that I have it again, which I fing sort of strange. This LDN is supposed to aid in all autoimmune diseases, so I am hoping it may help the osteo too…that’s why I want it. For my pain, and the bit of bleeding that still occurs occasionally.

            I will also heed youtr advice and read up on the people who are taking it, or have taken it.

            I understand all about being skeptical! I am very taht way, myself. This UC has definitely made me a skeptic because NOTHING really seems to work, right?!

            Cheers,
            Bev:)

        • David May 8, 2012 at 6:05 pm #

          Hi Bev:

          Best of luck with the LDN prescription. I`ll be interested to hear about your experience with it and what you think of LDN. I wish my UC were in remission right now, I envious of you! If this Remicade thing doesn`t work out for me, I think I will want to give the LDN a try. What have I got to lose at this point. I agree with you that it doesn`t seem right that we would ever want to suppress our immune systems. I hope everything works out for you.

          David

          • Bev May 9, 2012 at 11:47 am #

            David, once again, thank you for the kind words, and encouragement!

            Good health to all of us!!

            Bev:)

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