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Ulcerative Colitis is Kicking My Butt

diagnosed colitis may 2013Introduction:

Hello I’m Charlie 43yo 190lbs diagnosed with UC May 21, 2013.  I enjoy eating out ( not fast food ) , going to movies and checking out the local Jazz Music Scene.

Some more about me:

I live in Tacoma ,WA I enjoy Snowboarding in the winter & kayak in the summer , I live alone & have two wonderful Weiner Dogs..Dickie & Kittie (blind) , We enjoy walks in the park , please forgive me as im not a writer but I want to share my story as I have no Health Insurance & it seems like a lot of people just go see a GI to get help .

Symptoms I’m Dealing With:

My symptoms are bloody mucus 10-15 times a day accompanied by sever gas cramps ,its worse in the mornings & starts around 3am and will last though the day , I also have bad back pain now.

Ulcerative Colitis is Kicking My Butt

It all started about 3 month ago , I was battling diarrhea , the worst I ever had it went on for 30 days!

I thought I had food poison or something , there was no blood just horrible diarrhea , So I was on Imodium 2 pills a day & all I could eat was soups. Things started to get better my stools were now paste & dark , that lasted for about another 2weeks then I had some normal bowel movements.  I was happy, but noticed some blood on the paper.  I thought I must have torn something from all the diarrhea so I didn’t concern myself with it , well the blood just got more & more and I felt like my butt was swollen.  So I did some research & figured I had a hemorrhoid.

I stared using prep H suppositories , this felt like it was helping the swelling feeling subsided & at times the blood would decrease , however after 3 weeks of using the PrepH I was not seeing improvement still bleeding .

I was getting worried this” hemorrhoid” had to go. I have no health insurance haven’t seen a doctor in 25 years , I had to do something so I made an appointment with a local GI doctor to have my “hemorrhoid” banded , the cost for this is $480 . So I go in & doctor does the examination & says Charlie there is no hemorrhoid! I was shocked , Doctor says I need a colonoscopy to find whats going on. So I left paying $250 bucks for a guy to stick his finger in my butt!? what the hell!

I found out I was going to need to come up with

$1800 for the colonoscopy,

so I sold a car & some other stuff to get the cash,

made the appointment & went in. 

After I woke up they said I have “ulcerative colitis”.  

I was just glad I didn’t have cancer. I told him I can’t afford prescriptions drugs, but he insisted I try Canasa Suppositories (4) of them for $88 bucks.  After the 4 days the bleeding had stopped , cool I’m healed :)….WRONG!

The blood came back in a couple days.  Whatever… I can live with a bit of blood on my toilet paper.

Then my first REAL FLARE ..OMG!  The gas cramps came on, very painful.

My diarrhea quickly turned to just bloody mucus.  I have been in this state for 3 weeks now.  I’m eating scramble eggs for breakfast , homemade chicken soup for lunch (tired of this ) & baked skinless chicken breast for dinner.  You would think I’m just drinking blood cause that all that comes out of me. I can’t just go see my doctor.  It will cost me a lot of $$ I need to find a way to fight this without big money drugs . I read stories of people that can just go see there doc for different Med’s to try ,I can’t do that as my budget won’t let me . I’m really starting to fall apart & not sure what to do next.

Medications:

I’m taking a Super Probiotic ,Omega 3 , Turmeric & vitamin D3, I have been taking these for the last week or so, I have seen no improvements

written by Charlie

submitted in the colitis venting area




19 Responses to Ulcerative Colitis is Kicking My Butt

  1. Adam
    Adam July 16, 2013 at 7:10 pm #

    Hey Charlie,

    I’m super bummed you’re having such a tuff go at it right now. And especially with the added difficulty of the financial hurdles that the healthcare system often creates here in the US.

    But no matter what, you’ve got to realize that you’re not alone with UC, or with the struggles that you’re going through. And most importantly, you should for surezies know that there’s a crapload of UC’ers who have been right there in your bloody shoes, and made it out to the other side of the tunnel. I know its hard as hell to believe/realize/imagine (especially when you’re trying to get through and past your first full on flare up), but its true. And yes, YOU WILL TOO.

    Here’s one thing you might want to consider to help out with the financial side of things: Call the Crohns and Colitis of America chapter in your local area. I just did a quick search on their website (ccfa.org) and it looks like there’s a chapter near you in Seattle. Here are there contact details:

    Northwest Chapter

    9 Lake Bellevue Dr #203
    Bellevue, WA, 98005
    Phone: (425) 451.8455
    (877) 703.6900
    Fax: (425) 451.1708

    Their regional director is listed as:

    Linda Huse
    Regional Director
    lhuse@ccfa.org

    I’d contact here, and find out if they can help you out financially. They used to promote when I was part of CCFA (as a fundraiser by taking part in the half marathon they put on in Vegas…and they still do) that they also helped support Crohn’s and COlitis patients who were in the middle of financial hardships. There was a young guy in my local area who was getting that sort of help I remember.

    Anyways, it’s an idea and maybe a start.

    One thing I’d for sure add is regarding C-diff. You can google “c-diff” if you like, wikipedia is a great source for some pretty basic overview. Anyways, right after I was diagnosed in Oct. 2008, I also tested positive for C-diff. It’s pretty nasty, and was super stinky with regards to the gas. Symptoms are similar to UC, and a decent amount of UC’ers come down with it from time to time. More common after taking antibiotics or when exposed to the hospital enviornments.

    Bottomline, I personally think its worth the stool sample testing costs (and shop around for who’s got the best prices on that test. you’ll need a doctors orders to get it done). if c-diff is in-fact jerking you around right now also, it may explain part of why you have not seen great results with your basic diet (which is pretty much the same as what I’d be doing if I was in your situation.)

    wishing you the best again, keep your head up, the worm is gonna turn for you amigo,

    -Adam

  2. PS July 16, 2013 at 7:11 pm #

    I’m in the same boat without health insurance. A year ago the doctor was kind enough to give me samples of medicine. I’ve been prescribed 4 pills a day & I only take 1 when I’m feeling sick with cramps before it gets too bad. There’s no way I could afford to take the amount I’m prescribed!
    Be careful with the bleeding you may need iron pills. But at least you now know what you have, it’s just a matter of managing it. Many here follow SCD diet but it doesn’t work for me. Rice may help you fill up a bit at dinner
    Best to you!

  3. Joan H
    Hope July 16, 2013 at 7:29 pm #

    Hi Charlie – Welcome to the group! I know things are very hard but hang in there. One step at a time. Someone with such resilience that he can even sell his car for money for treatment can overcome this disease. I’ve been there with no insurance myself or for my family so I get it. We sold things too, and went without for so many years. I want to encourage you, though, that it will get better. A couple of things I thought about while I read your story: Can the GI doctor who did the colonoscopy give you samples of the canasa suppositories? Yes, they are very expensive. But the drug reps go to the offices and drop off supplies of samples of every type of drug the dr prescribes, and often there are multiples of the same drug for people to take home – not only to get them started, but to maintain them. Sometimes, it’s hard to ask or to let your doctor know your financial situation, but keep asking. And when you start to get close to running out, ask again, and again, and again. The canasa worked to decrease your symptoms – it’s worth it. Also, if you don’t ask, how will they know you need it? Again, I’ve been there, done that. I’ve even used slightly outdated canasa and they worked just as well. Another tip for you is (after you get two or three weeks of samples)- write to the drug company directly. Tell them you need help – they will often defray the cost or give it to you (there are hoops sometimes to jump through so get enough from your doctor to tide you over) and you may need your doctor to also write/ask. But the companies get to write it off as charity — makes them look good, and it is good because you benefit in the end. Third idea is to apply for medicaid if you are in the States. It’s sometimes what you need to do to get drugs like the ones used for UC covered. UC drugs are very costly, and as you read on line, sometimes one will work and work well, sometimes people need several, or they try one for a while and it STOPS being effective and they have to switch regimines altogether. So it’s not a bad idea to see if you qualify. You need some relief and some help with UC right now – it’s okay to ask for it. I have decreased my diet – as I’ve posted before – to just plain white rice and now bits of chicken plain, and then this week added blueberries (less than 1/4 cup a day for now). I’ve cut out caffeine completely, any wheat products and milk. It sounds restrictive but is actually better than what I could tolerate before. I am adding one new food per week in small amounts, see if i tolerate it, and if I do add another new food the next week. If not, take that “offending food” out of my diet for several weeks before trying it again. I chose bluberries this time because of the anti-oxidant effects. I am also taking 15 billion live active probiotic cultures a day, calcium and vitamin D. I had a “flare” that lasted two years with bleeding, pain, frequency and took over every monute of my life. This method is working for me. My pain is greatly decreased, usually not even noticeable, and it’s been 4 weeks on this diet, the probiotics, vitamins and canasa once a day. I was on multiple meds prior to this and still in constant pain. If you can follow some of the probiotic advice threads – and get ideas from other people too. But like I said, your resilience and strength is admirable. I think some of these ideas might help, and there’s lots of support here on Adam’s site. So hang in there, one step at a time, and please keep us posted. – Hope

    • Caroline
      Caroline July 17, 2013 at 6:58 am #

      Hope has some great points about the assistance that is out there for drug costs. Canasa is SUPER expensive – and it didn’t help me either. I’m taking Apriso now, and it’s pretty costly too – but my doctor had a savings program through the drug rep. He gave me a card that I took to my pharmacy, and this $200/month medication only costs me $10/month! Pretty good deal. There is a lot of assistance and different programs that you can look into.

      Adam is right on with the stool testing – make sure you don’t have C-Dif for sure. For me, I manage my UC today with Apriso, VSL, L glutamine, vit D, fish oil, and astaxanthin (and a STRICT paleo diet) – but honestly, it took a good old fashioned round of Prednisone to get things moving in the right direction for me. It’s a terrible drug, but I had severe pancolitis and I think it was the only thing that helped initially. The one bonus is it’s CHEAP! :)

      Good luck to you – hang in there!

  4. april July 16, 2013 at 8:08 pm #

    Hi, I wanted to reply because there are other ways to control your UC . I have had UC for 23 years now, and have tried everything, but definitely what i have learned is medications don’t always work and natural holistic meds or herbs work just as well. Here are some examples for inflammation, you can try turmeric and ginger. Take Iron supplements for the bleeding. Take only 300mg to 600 mg per day. Also, Boswellia extract can be found at most holistic health food stores. It is typically sold in tablet or capsule form, though some retailers may offer liquid and tea versions. Boswellia is commonly mixed with other herbs, such as ginger and holy basil, to boost its anti-inflammatory and pain relieving properties. Sometimes these help rather then expensive meds. Also try starting on a pro-biotic , they sell these at holistic stores or pharmacies. All these are relatively in expensive and effective. Changing your diet helps, and keep track of everything you drink and eat to eliminate all things that irritate you. I personally cant touch anyhting green. It irritates me the second it touches my lips. I definately hope these suggestions help. I hope you feel better and back to yourself in no time. Good luck.

    • Joanna July 16, 2013 at 8:30 pm #

      I agree about the iron. I take 54 mg a day and thats on top of the 19 iron infusions and 5 blood transfusion ive had over the past 18 months. I started a chewable iron that seems to be helping.

  5. Barrett Fisher July 16, 2013 at 8:17 pm #

    Charlie. I’m sorry you are having tough time with UC. Things will get better and there are options out there to help you out. Your story is very similar to mine in how it all came about. I too didn’t have insurance and put it off to see someone for fear of the high medical costs. I ended up giving in cause I got so sick and didn’t have a choice. The GI helped me out alot with special programs for meds for people without insurance. These programs paid for the drug and gave it to me at no charge. The only thing I had to pay was the infusion treatments for the time I was in the infusion center. I also went thru a local hospital and they set me up with something called the Colorado indigent program. This was basically a drastically discount programs for doctor, hospital, and pharmacy costs. Then I also got set up with this website called gofundme.com which is a crowd funding website where you right a story of what you have gone thru. Then you send your story out to people of Facebook, twitter, and email contacts and people can donate to your cause. It was probably the hardest thing I’ve had to do because I’m not one for looking for hand outs but I had to put my pride aside and do it cause I really needed the help. I don’t know if this will help but feel free to contact me if you have questions. Keep the faith brother.

  6. Joanna July 16, 2013 at 8:28 pm #

    Hey charlie. I agree. Medical costs suck! I sometimes wonder why i have insurance if it hardly covers anything. My one prescription now is $240 a month. Excellent. I hope you find something that works. Seems like you are doing low carb/fiber which is what i recommend for flares. The one thin that helped me the most this year was vancomycin. Ive had recurrent c diff since january and i think the antibiotics wiped out everything. I still have uc sumptoms but not like they were before i was treated for c diff.

  7. j July 17, 2013 at 7:01 pm #

    Some thoughts for you: Consider contacting the Washington State Health Plan: http://www.basichealth.hca.wa.gov/

    I have had UC for 40 years and do understand the costs of prescription drugs. I have health insurance but my GI doctors have always inquired about whether I could pay for the prescriptions. There are plans through drug companies to make your out of pocket costs reasonable.

    Two drugs that are often prescribed are Asacol and Lialda. Both of the drug manufactures offer assistance if you are unable to pay. Here is a coupon for Lialda: http://www.lialda.com/lialda-savings.aspx

    Some patients in Washington State have found help by traveling up to Canada to see a GI doc and get prescriptions filled there.

    You may be a candidate for a UC study at the University of Washington.

    UC is a life long chronic condition and I urge you to find a doctor who will work with you. The drugs may be expensive but surgery is much more expensive.

    Wishing you better health.

  8. Charlie
    charlie July 18, 2013 at 8:40 am #

    I really glad to have found this site , thank you all for your wisdom on this issue , you gave my some great advice. I’m going to continue to read your stories in hopes to learn more about controlling this condition.

  9. Hammad
    hammad July 18, 2013 at 4:24 pm #

    hey Charlie
    so sorry to hear about the severe episode you going through. Early stage of this disease is really hard because thats when you have to try a number of medications and never know which one is working. About buying prescription drugs there is a place in canada that i order most of my medication through and they are really affordable. They usually sell the generic version of medication so talk to a pharmacist there and they will tell you the generic version of that certain medication. Its called NW pharmacy just google it you will find them easily …if not i will give you the phone number. Hope you all the best .

  10. Charlie
    charlie July 22, 2013 at 8:53 am #

    Update to my flare …I have added L-Glutamine 1000mg capsules to my daily supplements & have continued my diet of eggs & chicken , I have had a complete *180 turn in my condition. In just a few days after adding the L-Glut I have had no bleeding or mucus or any kind of bowl movement. its been 7 days & still no bowl movement , just some gas. So I have gone from one extreme to another. I have no real gas pain or bloating just some pain when I press on my gut. has anyone else had this happen before ?

    I’m going to stop taking the supplements for now.

    • shelly in maine July 22, 2013 at 10:11 am #

      Charlie…you just want to be sure you do not have an obstruction. Do some research and maybe back up to liquid and think about some gentle fiber/laxative.
      Best, Shelly

    • bev July 22, 2013 at 10:12 am #

      Charlie!!

      I wish everyone would have such a quick turnaround!! However, I have never gone even one day with no bowel movement. It’s really been 7 days? I don’t think that’s good.

      Perhaps the L-glut can cause constipation in some people? It firmed things up for me, but never stopped things completely, although I have always been one of those people who ‘go’ every single day. I have actually never experienced constipation…even before I had UC.

      Perhaps a bit less L-glutamine until your body starts ‘running’ again? You are feeling alright otherwise?

      Bev

  11. Charlie
    charlie July 22, 2013 at 11:47 am #

    I feel pretty good actually , I’m going to try a fiber laxative for a couple of days to see if that helps. I’m drinking lots of water but drinking to much gives me a bloated feeling .

  12. bev July 22, 2013 at 12:20 pm #

    Good that you are feeling good Charlie.

    Good idea on the fiber…laxatives kind of go against my grain…lol

  13. Andrea July 24, 2013 at 11:38 am #

    Charlie,

    Dude, you need to get health insurance. UC is a chronic condition and you will deal with it for the rest of your life. You can manage it but you’ll need all the help you can get unless you’re like me and had UC but on a bad flair end up in the ER with an emergency colectomy and flat-line twice then are left disfigured crapping in a bag. But hey I’ll never have to deal with another UC flair or getting colon cancer now (that’s what one of the docs told me on my month long foray in the hospital). Did I mention I lost all my hair and ended up using a walker learning to walk again? I was only 38 at the time. WTH, right?

    Even with insurance my medical bills were through the roof. I got independent reasonably rated insurance online through a decent insurer, before it kicked in I visited the walk in clinic a lot, saved quite a bit of money that way too. And if you think I’m trying to scare you, I am. UC is serious. I thought I could manage it, heck I did manage it for a decade successfully with diet and proscribed meds. But I warn you now. Stay on the diet and do what you have to do to get insurance. Oh and a major factor that causes flairs is – stress. Stress is really really bad for you, I mean really bad. You gotta adopt the Jimmy Buffet style attitude. Your health is worth it.

    Good luck!!!

    Andrea

  14. Charlie
    Charles August 14, 2013 at 4:58 pm #

    Update …I had to use a fleet enema to get things going . Im not sure why I went from major flare to all backed up.
    its been a couple weeks that I have used the enema & things were good I was having 1 or 2 solid bowl movements a day
    with no blood , then just last night the bloody diarrhea came back without warning, I was feeling better then I have felt in a long while then… BAM! UC flare up . My diet is eggs or corn flakes for breakfast , sandwich for lunch & chicken/pork & a vegetable for dinner , I don’t think my diet has much to do with the recent flare up. Im going to add the L-Glut to my daily supplements again & see what happens. weird how I go from one extreme to the other.

    • bev August 15, 2013 at 6:55 am #

      One extreme to another…exactly!

      It amazes me how this can just happen…and it does.

      One day, everything id good…and the next, like you said…BAM!

      It’s really no wonder nobody can figure out how to ‘cure’ UC.

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