UC for 25 Years

Introduction:

My name is Marc and I have had the fun of UC and IBD for over 25 years. You will appreciate this story. My previous GI told me after a colonoscopy that my bleeding (Needed 2 full units of blood) was from a hemorrhoid. I told him it would have to be the Mount St. Helens of hemorrhoids to spew that much blood. Needless to say he was not amused.

I just took my third round of Remicade. I made them give it to me without the steroid. I wanted to see if it was working or if it was the steroid that was keeping things at bay. I had it 5 days ago and have had 1 good day so far. I just have no idea what to expect. Any help would be appreciated

Some more about Marc:

I am from Atlanta and love to build and attempt to fly R/c plans, boats, etc. I have tried them all and have put every single one into the ground or under the water. Just not very strong in the hand/eye dept.

Colitis Symptoms:

You name it I have had it or have it now. Urgency, 4 stops at bathrooms on a 25 mile trip home from the GI, bleeding, all the fun stuff.

Ulcerative Colitis for 25 Years

I am 54 and have had this for over half of my life. My family understands and then they do not. It is annoying to them that I am always looking for or going to a restroom, especially at movies or eating out. I try to keep things calm, but it is very hard to do. Lately I have been really bummed out about it. The holidays were just awful. All I want is a normal life which I simply can not imagine. I take a ton of drugs per day just to try to keep things in check.

I am frustrated and angry. I am not emotionally ready to get the bag or j pouch. I know that sounds stupid but emotionally that is just to much for me to have to contend with as it has been one of my constant fears.

If the Remicade does not work, then I guess I go to Humira. That is the last bullet in the gun. The hardest part for me now is knowing that there is no cure and I will have this for the rest of my life. I am tired of cramping on a daily basis or excusing myself out of business meetings. It seems like my whole life revolves around bathrooms all over the country.

I have tried to explain this to the Dr. and to the family. They understand, but as the only thing they have ever experienced is a mild stomach ache, they can not get how I can be doubled over with a sock in my mouth in the bathroom so they won’t hear me yelling from the pain.

I apologize for the whining nature of this note, but I am at my wits end. If this Remicade does not work, I am not going to try the Humira. I guess I will go back to the old pred and just manage symptoms

Colitis Medications

asacol Stopped working

6 mp kind of works

Pred works but has awful side effects

Hyscopamine (Cramping med) works some of the time

written by Marc

submitted in the colitis venting area




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8 Responses to UC for 25 Years

  1. Ann March 11, 2013 at 6:32 am #

    Hi Marc, I understand your story, I’ve been dealing with UC for 25 years since I was 25. I started following the information on Feburary 14th about EVOO (Extra Virgin Olive Oil) curing/calming UC from Graham in England on this website. I would highly recommend reading the threads starting on November 11th and any other info you can find out about this. It’s worth a try. It’s working for me. Good Luck!

  2. Ann March 11, 2013 at 7:41 am #

    Sorry Marc, I said November 11th…Novebmer 2nd is the correct date for one of Graham’s threads. If you google evoo graham they all come up in the web.

  3. Yvonne March 11, 2013 at 7:59 am #

    Hi Marc, I am new to the website. I was just diagnosed on my 50 year physical/colonoscopy. It was the first time (maybe the second) that I had been experiencing symptoms. The first time was December of 2008 and it went away by itself after about 6 weeks. I did go to the doctor at that time and was sent to a gastroenterologist. It was decided that I was healthy and it was just due to my recent visit to Mexico. The symptoms were so similar I think it might have been this just beginning. So…coincidentally it started again this past December just after a two week vacation to England. My test results came on February 26th. I was SO SAD. I cried and cried and felt sort of like I was sentenced to life but could live the sentence out in the free world. I am so grateful to have found this website and one other mentioned here called colitissurvival.com. It has been a good source of information. I started the SCD diet right away and am taking Lialda, flax seed oil (omega 3), vitamin D, and probiotics without bifido bacteria. The RX Lialda cleared my symptoms up right away and I am hoping to wean off the medication after sometime of being on the diet and supplements. I probably won’t take the chance for at least another 6 months. The first three weeks I was tired, sad, weak and my lower back was sore. The good news is….I am feeling better both emotionally and physically. I am feeling more normal. If you have not heard of or read Breaking The Viscious Cycle Intenstinal Health Through Diet by Elaine Gottschall you should check it out. It is a good place to start. Hang in there…Yvonne

  4. Andy March 11, 2013 at 8:17 am #

    Hi Marc,

    Tough one, hang in there. I am just coming off the back of a 15 month flare myself, the worst I have ever had, it ends eventually.

    I am not saying that conventional medicine does not work, and I would generally advocate sticking with what the doc prescribes unless you have side effects. But there are some very effective adjuncts you can try to conventional medicine. I have tried 100’s of supplements, and I have listed below which ones have stuck. I have not empirically tested these, but they seem to make me feel better.

    As I come off this flare my current routine is:

    – Vit D 3000IU
    – Glutamine 1g
    – 1 500ml glass of homemade real Kefir with teaspoon of inulin
    – 1 triple strength fish oil(be careful not to over do fish oil, it can give you the runs)
    – Occasional Zinc & Magnesium, again be careful with these especially magnesium. Can make the D worse. But zinc is a vital component of the bowel lining, so will aid recovery. Also your body stores these quiet well so you should not take everyday, but it is likely you are low in them if you have UC.
    – Occasional fine ground psyllium husk powder in water(stool thickener)
    – Tablespoon or two of good olive oil per day along with in advocado(both high in oleic acid, which studies show helps balance gut flora)

    I have been doing this for around 6 months and things have got gradually better. Conventional meds I take are:

    – 1000mg Pentasa(some of the side effects here mimic UC, I was on a high dose for a while and it messed me up). I won’t take anything over 2g, the doc had me on 3.8g and I felt terrible. Cut the dosage and got better, but completely off it I am worse.

    – Predfoam enema. These saved my life 1 week on them and I was considerably better after months on oral steriods with all the side effects. Pred foam had basically none. I haven’t taken them now for about a month, but they really reduced the urgency and got me back to about 70%.

    Some other extreme areas you can research and potentially try before giving the colon the chop:

    – Helminth therapy(worms, I had tried pig whip worm in the past, and this current flare actually started shortly after I stopped. But it is expensive(less so now with the euro being cheap), and the first month or so your D will get worse, actually best to start when you are not in a flare to maintain remission).
    – Fecal Bacteriotherapy, fecal transplant. I tried this at home as well, I don’t think I did enough transfers for it to be effective. My current flare stopped 2 months after 3 transfers, so I’m not sure if it was implicated, but maybe it helped. Good to get some diversity back into the gut. Studies show UC’ers have less gut bacterial diversity.

    My advice is get back into the game. UC could have as many causes as there are bacteria in your gut. Use every tool you have to break UC and you will find something. Modern medicine has some good ones, but it still doesn’t have a cure, or even a cause.

    Try SCD too, it didn’t work for me but there are plenty of people that have had success.

  5. bev March 11, 2013 at 4:31 pm #

    It doesn’t sound stupid at all that you are not ready for colon removal…that’s the biggest step after all. Surgery is huge in itself…

    I remember all of those years on ‘all of those drugs”. It IS annoying. Always having to take pills…it seems like everyone else is normal except yourself…ugh.

    I hate to say this, but none of the drugs seem to work for very long. That appears to be the sad truth of trying to treat UC. I’ve had the lovely condition for 15 years. I found that the only thing that really worked for me was to take a GOOD 50 billion (at least) probiotic. I was on asacol for 14 years straight, peppered throughout with steroid enemas. I would never agree to anything stronger, like remicade or Imuran or oral steroids. I’m a skeptical ‘problem’ patient…lol…doctors just LOVE me… After a few days on the probiotic…first thing in the morning, empty stomach by the way, cause that matters, I started feeling the UC symptoms disappearing! No joke! I was floored. I have never believed in any natural approach before. After a month on them, I felt SO good, I just decided to go off of the meds. I must have had the type of UC that was from lack of good bacteria…I don’t know if we all have the same UC, but it’s worth a try. There is also a lot of good results in taking a GOOD extra virgin olive oil (no kidding!) three times per day…I’m just saying…

    Drugs are not the answer, unfortunately. I have yet to hear that they actually work LONG TERM. They are expensive, a pain in the ass, (no pun), and have a lot of not so great side effects. If I flare again, I might just consider the surgery…I can’t go back to meds again…ever.

    Cheers,
    Bev

  6. shelly in maine March 12, 2013 at 4:45 pm #

    Hey Marc,
    I want to say I’ve been on the uc rollercoaster for 30+ years with a lifetime of symptoms and there is not one answer for every uc’er. I have been on all the meds from top to bottom-haha-and am now allergic and intolerant to them. So…I have been Med free since July 20, 2011, my last regretful allergic dose of humira-I was allergic all along and had been on remicade for 3 years and gave up my gallbladder…sooo like Bev said..the meds my work temporarily, but I now say at what cost? I do regret the humira the most and have lasting effects, but I wouldn’t change too much. Sometimes there may be a need to boost your system up at least temporarily.

    In the meantime, what I did for myself was immediately come to terms with surgery and talked to my GI and my primary care Dr.’s so I won’t get stuck without a plan or some hack…not a great reputation for colon surgery up my way. I read all the surgery posts and continue to read them…those two things helped take a lot of the fear and anxiety of the unknown away.

    I have been on probiotics for about 3 years…you need a good quality one. Ccfa is even doing research on gut bacteria! Vit D, omega 3
    (Anti inflammatories) Plus you can try what some of the other’s do. Keep a journal and try to add 1 thing or so at a time so you can try and figure out what is working or not. I have been trying Chinese herbs with my Chiro as I have been in a flare since Oct, but refuse to give up and retry meds I know aren’t going to work despite the urging and sadness of my GI whom I’ve had since the beginning. I also did SCD, but found it didn’t work for me, but now I still do about 95%.

    Sorry so long. Hope this helps. Empower yourself with the knowledge and choices and you won’t feel so powerless!
    Best, Shelly

    • bev March 12, 2013 at 8:44 pm #

      As usual…a great post from one very savvy UC gal!

      Shelly knows of what she speaks.

      :)

      • shelly in maine March 13, 2013 at 3:09 pm #

        Thanks…and you as well! :-)

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