I’m New to UC and Pretty Nervous



Introduction:

My name is Ryan Mossburg, 23 years old. I am a student and a pizza delivery boy. I am an avid skateboarder, guitarist, and unfortunately a food junkie. I love to travel and just hang out with my friends.

My Symptoms:

I have abdominal cramps, bloody stool, extremely frequent painful bowel movements(about 15 a day) , headaches, fatigue, dizziness and light headedness.

My Story:

I was just diagnosed with UC 4 days ago on 4/25/12. This was my second flare up but due to the ridiculously long time it takes to get into a doctor I was not diagnosed the first time. In October of 2011 I started having bloody stools, frequent bowel movements, and painful stomach cramps.  At first I thought i simply had an infection, so I went to the ER to get checked out. They did blood work and i had a CT scan of my GI tract and nothing turned up, so they had me make an appointment with my current doctor. Well, I wasn’t able to get in until December. I almost lost my job due to having lost so much work due to my symptoms (that was at Red Lobster, now i have a better job with a small pizza shop with a boss who actually cares). By the time I got in to see my doctor my symptoms had cleared up and he said i had a slightly high white cell count when i went to the ER and that it was probably just an infection. He told me to call back if any of my symptoms come back. So about 4 months go bye and around the end of March I start having another flare up but this time it seems much worse.

I had alot more blood, I was going to the bathroom about 15 times a day,

I had headaches all the time, and after a few weeks I had become very fatigued

and started getting dizzy anytime i would stand up.

I went back to the doctor and made an appointment with my GI specialist and eventually made an appointment for a colonoscopy. It was about six weeks from the time i saw my doc till my colonoscopy. about two weeks before my procedure I had gotten so bad that I could hardly get off my couch. I couldn’t work, I couldn’t go to the skatepark or feel strong enough to even socialize, and didn’t even want to leave my house for fear of being in a situation where i wouldn’t be able to find a bathroom. The night before i was going to be scoped I was going through the prep, e.g. laxatives and liquid diet and what not.

Around eleven o’clock that night I decided to take a shower and make an attempt at some sleep.  Because of my condition I had been showering sitting down because I couldn’t even stand for long enough to wash myself. I stood up to dry off and when i did I got very dizzy and almost completely lost consciousness. I fell down and knocked my head off the door. My grandma had to come in and help me sit up while naked. She helped me get dressed and took me to the hospital.

I had lost so much blood over the previous two months that my hemoglobin levels were 5.6 percent when they should have been more like 12-14. I had to have a blood transfusion and was hospitalized for 5 days. I had the scope and was diagnosed with UC. After the blood transfusion and talking to the docs I was in high spirits due to feeling better after feeling like total crap for the past month. They prescribed me anti-biotics, prednisone, and asacol and said it wasn’t a big deal and that I will be fine. I got out of the hospital and went to fill my prescription and this is where my good vibe took a nose dive. I went to pick up my meds and found out my script for asacol was about 550 dollars for a one month prescription and are not covered by my insurance. I am very stressed out because I am a student with a minimum wage job who lives at home. There is no way I can possibly afford this, and I am a nervous wreck just thinking that i may end up back in the condition i was in. aparently alot of people have this same issue, but any support and suggestions would be very much appreciated. I can’t help but feeling totally helpless like I am being forced into slavery by Proctor and Gamble.

Where I’d Like to be in 1 year:

In remission and not so worried. On my way to getting my degree and on my way to being able to afford to be healthy.
Colitis Medications:
I’m still pretty new to this. the meds seem to be working pretty well at the moment but I’m not sure if it’s the asacol or the steroids that are effective, and i definitely don’t want to be on the steroids for long.

written by Ryan

submitted in the colitis venting area








17 Responses to I’m New to UC and Pretty Nervous

  1. Polly
    Polly May 28, 2012 at 8:27 pm #

    Hey Ryan,

    Welcome to the UC club! It’s ok to be nervous… there’s lots to learn, and soon you will feel like you could be a GI Doc… I was nervous too, at the beginning, then I was in denial for awhile, and now sometimes I allow myself a pity-party and sometimes I am just moody and everything upsets me. It’s the nature of the disease.

    Oh, insurance, pharmaceuticals,… sometime when you are spending time doing online research, you should check out Dr. Mercola’s website (mercola.com) and you can read dozens of stories on the evils of prescription medication and pharmaceutical companies…

    As far as advice, I am currently seeing a holistic Doc and pursuing a natural treatment method. The best advice I could give you is to maybe try PSYLLIUM. You can Google it and see that there are studies that show it to be just as effective as other prescription drugs for maintaining remission. With high enough doses, psyllium produces buturic (sp?) acid in your colon and buturic acid cures ulcers. Make sure you buy ORGANIC psyllium husk powder. Here’s a link to a place where you can order it: http://www.swansonvitamins.com/SWF102/ItemDetail It’s $7 for probably a one month supply.
    ALSO, you should also be taking VITAMIN D. It is also cheap and it has amazing anti-inflammatory properties. Here’s a link for Vitamin D: https://www.swansonvitamins.com/SN323/ItemDetail It’s also $7 for 200 capsules. I would recommend at least 10,000 IU of Vitamin D per day (I am currently at 30,000 IU).
    Here are a couple of articles on psyllium: http://www.umm.edu/altmed/articles/psyllium-000321.htm and http://www.greenmedinfo.com/article/plaintain-seeds-psyllium-may-be-effective-mesalamine-maintain-remission-ulcerative-colitis

    Organic Psyllium and Vitamin D are the cheapest things I can suggest for you. Other supplements that would be great (but more expensive) would be a good PROBIOTIC (Garden of Life, Primal Defense) every morning and Fish Oil… to give you an idea, my husband and I just figured out that with all the supplements I am taking, it costs us $165 per month… it is alot, but it is also less than $550. :/

    Best of luck to you, Ryan! Please let me know if you have any questions. You are not alone! Hugs!!!

    • OrdinaryWorldWhereRU May 29, 2012 at 4:56 pm #

      Just a note from someone who tried Psyllium. It really killed my gut and completed my downward spiral so I would advise serious caution based on my personal experience.

  2. Mel May 29, 2012 at 5:00 am #

    Go to a website or the app GImonitor, you can log your symptoms and other things plus there is a great social part to it too with lots of people who give great advice and support! I’m med free right now and in Remission and I was hospitalized last Oct! It’s a rough road but you can do it! Diet changes will be essential in helping you feel better even though a lot of doctors will tell you diet doesn’t matter, it does! You will have to learn what foods bother you and unfortunately have to stop eating them! I know it sucks and I still cheat and eat bad things. Good luck and check out GImonitor it’s really helped me a lot!!!

  3. Jessica from Ohio
    Jessica May 29, 2012 at 1:14 pm #

    Hey Ryan,

    I am a new UC’er as well. I am also a student, and has a average job with NO insurance. I too after getting out of the hospital went to get meds filled and was told they dont carry the meds he wanted to put me on due to 100 pills costing over $500 ( that is what pharmacy paid not the patient). He put me on Sulfazine as the alternative (cost $30 w no insurance coverage). I dont know how much you know about taking steroids, but just be careful using them as they will lower your immune system if on them for long periods of time. I can totally relate to you about feeling scared, not wanting to be social in fear of “our bathroom episodes”. I got really stressed out about it, but recently went to my family doc to see what we could do to help the stress and in return help to cut down the flare ups. I was put on a low dose of xanax, which I have been on for a week now……. STRESS was a HUGE factor in my flares! I have only had one flare since being on the meds for stress/anxiety (which I have been having flares 2-3 a week). It didnt help with the 15+ bathroom trips, but a cut down on the flares makes for a happier me! =) that may be something to look into. I wish I could help you with the diet tips, but I am still trying to figure out what bothers it and what doesnt. Different strokes for different folks… ya know?! You are not alone, I am also new to this site, but it makes me feel so much better knowing there are others out there just like us, trying to help each other find a method to the madness. Hang in there! *Hugs*

  4. Bev May 29, 2012 at 4:32 pm #

    Hi Ryan…

    What a kick in the you know whats, right? The doctor never tells you how expensive this disease is! I was floored the first time I had to buy the asacol, too. I’m am so lucky, as my health care plan pays 80%. I don’t know how I would pay for it otherwise.

    This disease is forever, unfortunately. You will become an old hat at it in no time. It will piss you off, frustrate you, and make you angry…but, it will probably also change you in good ways. I have become so sympathetic and empathetic to the problems and troubles of others. I always kind of was, but having UC has made me even more so.

    It’s very smart of you not to be too worried, because worrying does not help. One day at a time. Sometimes, when you’re in remission, you’ll actually forget you even have UC! Those are the good times, and you can keep them lasting, if you take a good probiotic, as well, which is also a bit pricey. But…it’s only about $40 per month, so it’s definitely cheaper than asacol! Take it for at least two months, because it takjes time to get good bacteria back into your gut. After that, you won’t want to stop taking them. We should all take them for our whole lives. I think that’s how we UCers got into this mess in the first place. Perhaps from taking too many antibiotics (which strip out guts of good bacteria) along the way, and not replenishing our good probiotics. Trust me! Take a good one…ask the person at the health store which one you should take for UC. You won’t be sorry!

    Cheers,
    Bev:)

  5. OrdinaryWorldWhereRU May 29, 2012 at 4:59 pm #

    Ryan,

    You might want to see if you qualify for medicaid. This disease, being chronic and incurable, is on some government lists. It is also on the list for disability conditions if one gets to the point where they have to consider that. Also, some pharmaceutical manufacturers have programs to help you afford the meds.

  6. Ryan May 29, 2012 at 8:46 pm #

    I appreciate the support everyone. Just sitting here knowing that there are others who have had to go through the same mess I am makes me feel alot better. It also kind of makes a tear come to my eye. I have always been in great health and being stricken with this has opened my eyes to a sense of my own mortality. As for the meds, I have contacted the pharmeceutical company, they offer a $50 pay card (ef’ing joke). I also spoke to a nurse at my GI’s office… “he’s on vacation right now” haha, but she said she is going to call him and see if he will switch me asacol hd so i can get some of the samples they have in the office, which will be cool to hold me over until I can figure something out. I really like the idea of the probiotics and all the natural remedies ( i would rather try that than feed the corporate monkey)I am just going to have to go through a period of trial and error until i can figure out what works for me. Thank you for all the love and support, It really makes me feel alot better. haha *hugs* to all and much love.

  7. Polly
    Polly May 30, 2012 at 9:55 am #

    Hey Ryan,

    OrdinaryWorld brings up a good point: what works well for one person, might be terrible for another. It’s a terrible game to have to play… finding out what your “triggers” are.
    My Doc swears by Psyllium and it has been a miracle for me, but he says it has has HAS to be ORGANIC. The non-organic psylliums out there have something in them (some kind of whey protein, I think) that my Doc did say will make things worse for people. So if you do decide to try psyllium, look for your friendly USDA organic circle symbol!!!

    Here’s a link to the probiotic I buy: https://www.swansonvitamins.com/GLF008/ItemDetail
    It’s about $50 for 180 caplets online, but if you buy it in the store, it’s usually about $50 for only 90 caplets. So I buy almost everything online. I take 4 of them a day, but hopefully your body would need less? I take 3 first thing in the morning (best with lots of water, on an empty stomach) and then 1 right before I go to bed.

    Hugs back at ya! You are not alone.

    P.S. How difficult is it to get into the Doctor, right??? At the end of April, I tried to make an appointment with my GI… the soonest I was able to get an appointment was for June 20. Thanks, super helpful. :P
    Which is why I am SOOOOOOOOOOOOOOOOOOO thankful for my holistic Doc that has been there with me every step of the way with this and helps me out whenever I have a question, and stays later than office hours if he has to to fit in patients that need to see him.

    Best of Luck!!!

  8. Ryan May 30, 2012 at 7:59 pm #

    Thank you polly I will definatly be looking into the psyllium as well. I am feeling much better now and I am pretty sure I qualify for medicade part D. I am going to stay on my meds until I experiment with some natural remedies and can figure out what works for me. Thank you all for your support and advice.

  9. Johnny Drama
    JohnnyDrama June 1, 2012 at 3:55 pm #

    Hey Ryan.
    Hang in their bro! The first few weeks are the worst,but keep your head up. I myself am 21 years old and was diagnosed like a year and a half ago. Sounds like you have a similar backround as me. I myself enjoy music, although I don’t play any instruments. The guitar by far is the coolest,nothing better than some good music to make the day better. It sounds like those docs made you wait way too flippn long. Sounds like a bunch of BS, I had to wait a decent while too, so Ive been in your shoes. Anyways man best of luck. All I say is hang in their, and get back to your health man. Dont expect results overnight, keep fighting and stay strong. You got start fresh man and stop the junk food eating. SCD diet is definitely no joke. I used to be the exact same man, and now Im folliwing the SCD diet. GIve it a shot man! I had to drop out of college for a semester when I was flared up back when I was diagnosed and I was shittin 20 times a day so I know how that is… not fun man. Ive been taking meds since day 1(unfortunately) and that is not something I want to do long term, 3 lialds per day. I plan to get off as soon as I feel its time.
    GOOD Luck brotha
    Johnny Drama

  10. Jane June 8, 2012 at 6:33 am #

    We all feel your pain—very overwhelming in the beginning–you definately need the Prednisone right now to get your body healed….change your diet immediately!!!!!! NO fried foods, no creamy sauces, and really try to stay away from sugar the most–drink alot of water–I’m telling you, I’ve been on the SCD diet (as close as I can tolerate to follow it) way before Adam suggested it—IT WORKS!!! You will know what works for you eventually—I also don’t do much dairy–I eat cheese, and occasionallly dairy queen–but I drink Almond milk and that works–lots of veggies and stay away from the starches which convert to sugar–you will be okay in a few weeks if you behave–read alot–do NOT do all those crazy meds people tell you—-I have not been on any meds for a year and a half–by the way, you will always need to know where a bathroom is just in case..I’ve had accidents until I got smart—If I have to go really bad (like just sitting in traffic for a long time will make you nervous that you might have to go and there is no place) I started having a stash of plastic bags, wipes, sanitizer and air freshner in my car, and thats where I’ve had to go MANY times–its quick and easy trust me, and has saved me lots of time worrying–not to mention crapping my pants ..a much BIGGER problem. Nobody can see in your car, so you feel safe and relieved-.You will figure it out. Good luck.

  11. Joe June 8, 2012 at 10:16 am #

    Hey man,

    I was diagnosed with UC almost a year ago. It’s a pretty wicked disease. Everything you mentioned – dizziness, bowel movements 15 times a day, headaches – exactly the same things happened to me. I’ve had 3 flare ups in the past year, and each time has been worse than the last. Thankfully, I haven’t had any symptoms for a good 2 months as of today.

    Every time I go to the doctor for my flare ups, they try to put me on prednisone, on top of the asacol that I take daily(4 400 mg pills, 3 times a day… 12 pills total every day). This last time, I chose to skip the prednisone. I decided to try something that a friend told me about. It’s called Cat’s Claw (Uncaria Tomentosa is the actual name of the plant). It is a bark extract from a tree found in South America.

    In the midst of a horrible flare (15-20 really painful bowel movements a day), I started taking the Cat’s Claw. I was obviously skeptical, since most of the things I have tried doing to help relieve my symptoms have failed. Literally the day after I took my first capsule, my symptoms weren’t half as bad as the day before. And the next day, even better. Within about 2 weeks, my flare was completely gone, and I haven’t had a single symptom in 2 months.

    If you’re looking for an alternative to the debilitating medications that the doctors want to put you on, try this stuff out. It has helped me tremendously. You can get it at GNC, or any other supplement store.

    There are a variety of other pills that are called “Cat’s Claw” out there, so if you want to try it, make sure you get Uncaria Tomentosa.

    Regards,
    Joe

    • Joe June 8, 2012 at 10:22 am #

      Oh yeah, I also take probiotics daily. Those seem to help as well. My pills total to only about 20 bucks for a month supply, which is obviously better than the ridiculous cost of your asacol.

      It’s also nice to see a skater who has this disease. I thought I was the only one! Best of luck man,

      Joe

  12. Ryan June 9, 2012 at 11:26 pm #

    Hey everyone, I had my follow up appointment and i thought I’d give an update on whats going on. Ha, you know it’s pretty bad when your doc apologizes to you. I came into the office and he said he was sorry and that he should have realized how sick i was when i came in the first time and had me scope done immediately. At least he seems to care, and i like him pretty well. Anyway i found out i have a case of pretty severe pan colitis which was pretty much a bummer since i have been feeling pretty well in since i left the hospital. I told him I was doing well and his response was that we’re not out of the woods yet. He wants to see how i am doing as I taper down off of the prednisone, and he seems to think i am going to start feeling worse and that we are going to have to see where we are going to go from there. The good news is that he switched me lialda which is sweet i guess because my insurance covers it and he gave me about 3 months worth of samples. I’m taking 3 1.2g pills a day which definately beats taking 12 asacol a day. other than that i am still on prednison ( which i really haven’t notices many side effects that everyone else talks about) and im on iron supplements. I want to say thanks to everyone and that this site has really helped me cope with this situation.

    OH, and joe! you skate, thats awesome considering it’s basically my entire world, I have been skating hardcore for about 12 years. If you want to get at me on facebook or something my name is ryan mossburg, I’m from west virginia, and my picture is of me doing a back smith over a deathbox in a bowl with pool coping. I’m always down with being homies with other skateboarders!!!

  13. Camille M
    Camille June 10, 2012 at 7:46 am #

    Ryan, That just sux. It is weird that Lialda is covered and not asacol, cuz Lialda costs more. There is a generic for asacol called balsalazide. I had all over arthritis from asacol, which was masked by prednisone. I am now on Lialda, that gives me some arthritis, but nothing like before, and headaches. It’s a choice between two evils. What helped me a lot was immuran (there is a generic for it, too). It takes 3 months to take effect, but it works on the immune system attacking you.

    Take heed at the recommendations to change your diet. It is THE think that made all the difference for me. Call it the SCD (specific carbohydrate diet) or the Paleo diet, it really helps. All the gluten and grains are like sandpaper in your bowel, legumes are almost impossible to digest for people like us, and dairy is highly inflammatory. It is sooo hard to be on, but you have to keep asking yourself what your health is worth. My whole life has changed because of this disease, but mostly for the good, because it made me aware of food, nutrition, how Western medicine works, and how important alternative solutions are for long term health.

    It’s a process, so don’t expect to change your habits all at once, but you really have to take responsibility by controlling what you can – your diet. Best of luck and keep us all posted!

  14. Steph June 23, 2012 at 4:20 pm #

    Ryan, did your doc give you the lialda pharmacy savings card for when your samples run out? I only pay $10 a month for the lialda with that card. Lialda works better than asacol did for me anyway. https://www.activatepharmacycard.com

  15. Justin
    Justin June 30, 2012 at 11:02 pm #

    Hey Ryan, sorry to hear about all you troubles bro. I’m pretty new to this site l and I was just Diagnosed a month ago. I’ve just been reading everyones comments and advice and taking it all in. All these people have better advice and input then any of the doctors I’ve seen. My current doctor said diet has nothing to do with it and probiotics won’t help but he as soon as I. Started taking probiotics I noticed a change. I’m on somewhat of a diet now, I haven’t jumped into the scd diet yet but I will if my symptoms come back. I just avoid high fiber foods and fried foods. A few times I’ve cheated and ate something I know I shouldn’t and the bleeding /cramping returned within hours. I feel you on the asacol price man that crap is ridiculous expensive. Best of luck man

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