Feeling Hopeless and Needing Encouragement

allisons cat friendIntroduction:

I’m 26 and I live in Portland, OR. I was diagnosed with UC when I was 16. I am currently in school for my MSW degree and working part time as a counselor.

Symptoms:

I’m having mild symptoms at the moment: consistent diarrhea, some joint pain, some cramping, always bloating, some urgency and lots of fatigue. No blood…yet.

I had my first flare at 16. I was living in Alaska, in a town with few GI specialists. I spent 6 months feeling awful and not knowing why. At 16, I was ashamed of my symptoms and shared my experience with very few people.

Immediately after my diagnosis, I was put on prednisone in order to get the symptoms under control. Every time I tapered off, the symptoms came back. I tried sulfasalazine with no success. Tried remicade with no success (and severe side effects). Finally, over a year later, a specialist in Seattle prescribed Asacol and it kept me in remission for 10 years. I’ve been pretty lucky until recently.

When I made the decision to go back to school 1.5 yrs ago, I no longer had insurance that would cover Asacol. Foolishly, I went off the med completely without consulting a GI doctor (after ten yrs of remission, I didn’t even have a GI doctor to consult with).

A year later, my symptoms came back and landed me in the hospital. I got back on prednisone and completely tapered off about a month ago. I’m back on Sulfasalazine because I still can’t afford Asacol. I’ve applied to a medication assistance program, but my application is still processing. I can tell that my symptoms are coming back and in no time, I’m sure I’ll have another flare.

It’s been 3 months since I left the hospital and all of a sudden I’m a complete mess over this. In the past, I’ve tried not to think about UC and how it affects my life because it creates feelings of panic, fear, and hopelessness. During my 10 years of remission I tried my best to repress all of those memories of my adolescence and the 1.5 year period when my life revolved around extreme stomach pain, severe blood loss and the shame of going to the bathroom more than 10 times a day. As my symptoms gradually increase and I head into my second flare of 2012, I’m starting to feel like I’ll never get better.

I have a supportive partner and supportive friends, but they usually try to minimize my feelings of distress, probably because they don’t understand how awful it really is. My parents are a nightmare: when ever I talk to them about UC they become hysterical.

My partner and I are going to try SCD very soon. I’m keeping my fingers crossed that it might help.

I’m feeling very low and trapped by this disease. I feel hopeless about my future, like there is no way out. I worry about colon cancer, which runs in my family.

I hate the thought of losing my colon.

I guess what I’m really needing right now is some words of hope and encouragement. Please lend them if you have them.

I also have a few questions that I’d love to get some thoughts on:

What do others know about colon cancer, it’s prevalence in UC patients, and other related info?

How do people manage the cost of UC? I find that I’m constantly struggling to manage my many medical bills. Anyone know about some helpful resources?

Do you have any advice about starting SCD?

How do other people manage alcohol? I’m not a heavy drinker, but I do like to have a wild night here and there. Any ideas about how to drink without causing harm?

How have others overcome the sadness of living with this disease?

How do others deal with fatigue?

Where I’d Like to be in 1 year:

I would love to be symptom free and not thinking about UC at all.

Colitis Medications I’ve Used:

Prednisone:My advice with this one is to never taper too quickly!Asacol:Worked best for me. I was symptoms free with no side effectsRemicade:I had a terrible reaction–joint pain so severe that I couldn’t get out of bedSulfasalazine: Did not help at all. Contributed to fatigue, itchiness, and joint pain.
written by Allison
submitted in the Colitis Venting Area



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16 Responses to Feeling Hopeless and Needing Encouragement

  1. Casey April 9, 2012 at 7:47 am #

    Allison, have you considered contacting the drug companies? My son has UC and because he was so sick for such a long time, very early on in life (was diagnosed at 10) he has growth issues. We started on human growth hormone and they drug company is helping us with coverage. I would try there if you can!

    As far as colon cancer and UC – I know that most everything I have read states that people with UC have an increased risk of colon cancer. I also know that colon cancer has been in my family. In my head, because of this.. it was never a circumstance of IF the colon would have to be removed, but when. He had his colon removed over the summer in 2011 at the age of 13. I knew his age was on his side when it came to recovery. He had become dependent on steroids so we had to make the choice and we did it on our time, not when the disease dictated it as an emergency. He had the colon removed, Jpouch formed, and the reversal – over the span of 3 months and was back to school on time.

    Just know, that having your colon removed isn’t the end of the road! Life does go on. I wish you the best of luck and hope you can get some assistance through the drug company.

  2. Adam
    Adam April 9, 2012 at 7:49 am #

    Allison,
    First off, you’re gonna get over this tough time you’re in, its’ not gonna last forever. And don’t feel alone, there’s thousands and thousands of us living with UC too.

    – As for dealing with the medical bills, that’s a tough one. What you might want to consider is trying to negotiate with the medical providers when you have your bills. Often, people like you and me can go to the billing departments, or over the telephone, and let them know you are in the middle of tough financial times and you can only pay reduced rates. You can also mention this before you receive the treatment, and often they will be able to work something out for you regarding the costs.

    – As for alcohol, I manage it by not drinking it anymore, my body do so much better without it. It’s a big change from my days of drinking beers and vodka almost every night, but its been over two years now and well worth it. If I was forced to drink something, I’d hope it was vodka on the rocks, as that does me the best. And yes, I do have about 5-10 drinks PER YEAR now, so not 100% clean of booze, but very very minimal.

    – Colon cancer is defnitely more common for UC’ers from all the information I’ve read. Here is a quote from a recent study:
    “Although IBD-associated colorectal cancer (IBD-CRC) accounts for only 1-2% of all cases of colorectal cancer, IBD with colon involvement is among the top three high-risk conditions for colorectal cancer. Today, colorectal cancer accounts for approximately 10-15% of all deaths among IBD patients. Indeed, patients with IBD colitis are six times more likely to develop colorectal cancer than the general population and have a higher frequency of multiple synchronous colorectal cancers.” (March 2011, “Current management of inflammatory bowel disease and colorectal cancer.”)
    more on that article is located here: http://www.ncbi.nlm.nih.gov/pubmed/21673876

    — Starting SCD Diet . my advice would be to do as much reading as you can. There are many many people who have tried and use this diet(i’m one of them) and feeling confident in starting a very new diet, and understanding the science behind the diet is key. I created a video you can watch on this page which has all the details of how I used diet to get out of my last flare up here: https://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

    — Fatigue, for me that has always been due to blood loss when I had symptoms. If that is what you’re feeling, and if you are not sure why it exists, you might want to talk with your doctor about anemia, and have a blood test. That has always been the issue for me, and it is very fixable, but best to talk with a doctor about it.

    Best of luck to you Allison, we’re all pulling for you and your lovely cat!! take care and keep us posted, Adam

  3. Lazelle April 9, 2012 at 8:31 am #

    Hi Allison
    I am sorry to hear about your current experience. I was 1st diagnosed with UC when I was 22. I had completed my studies and was looking for a job when the whole world was in recession! I think the stress of not getting a job immediately made me ill. I know exactly what you are going through. I never lived for that period of my life. I was in too much pain and use to just sleep. I lived in the toilet. Thanks to asacol tablets and enemas I am living an almost normal life! I’m a very spiritual Christian so that has kept my sanity. My medical aid( medical insurance) doesn’t cover my asacol for the whole year so my credit card is very high!

    I use to be paranoid about colon cancer as well. I think lots of green tea because I heard it helps lower the risk of cancer. Not sure if its true but I just drink it faithfully.
    What I can suggest, from reading articles on UC, is maybe trying a probiotic. They’re are a bit expensive in South Africa. I’m not sure about the price in your country.
    I have read that in come cases, they have kept UC patients in remission for long periods. I’m going to start taking one this week. The names are Lactobaccillus and
    Bifidobacterium. I’m not sure if it will help us but its worth a try.
    I also would recommend that while you are in a volatile state, rather keep away from alcohol, oily food, coffee, dark chocolate, cocoa, red meat and fizzy drinks. When I have a flare, these foods aggrivate it and make me more ill.

    I’m not sure if I helped you but all I can tell you is that you must live life to the full. Take advantage of every ‘good’ day and don’t spend your time worrying about things that hasn’t happened to you. I think that stressing about a flare before it happens makes if end up happening. You are going to be okay. Just trust God for your healing. Take care, all the best.

  4. Rebeka
    Rebeka April 9, 2012 at 9:18 am #

    Hi Allison!
    I’m sure you’ll find what you need on this site. People have different approaches but always a kind word! You will get better, even if it seems hopeless rightnow. Remember, I bet you felt like this ten years ago when you were in that big flare and you got better eventually.
    I also couldn’t afford the medication, I was freaking out. They put me on Lialda, because the Sulfasalazine didn’t do anything for me. So I kept asking for samples at the GI’s office, while my application with the drug company was pending. For Lialda, it’s Shire. They were very friendly and so helpful and they sent the medication straight to my house, I remember I was so relieved when I first got it. If they won’t give you Asacol for free, maybe try Lialda. It worked great for me, and it is a mesalamine, just like Asacol.

    I also worry about colon cancer off and on, but I realize there is no point. All we can do is protect our colons as good as possible and worrying isn’t going to help it. It would only make it worse. My grandmother is currently battling colon cancer, so I see it in my immediate family. The good thing is that we as UCers are being monitored and they can catch any issues early on. There are things you can do to minimize your risk of cancer though: Eat healthy (!!!), don’t smoke, don’t stress, avoid medications as much as possible, and excercise.
    I suppose you also shouldn’t drink excessively. I am completely done with “wild nights”. It’s just not possible with the risk of a flare. Not worth the medical bills, the pain, the increased risk of complications. I do have a glass of wine, or two, but that is after dinner, winding down, in a completely relaxed atmosphere. And I am only allowing myself the wine because it doesn’t hurt me and because I feel the one or two glasses I have are very stress relieving and that’s MY main thing with UC. Stress is what brings on my symptoms.
    Stress, just like the wrong kinds of food, can cause inflammation in your colon. Manage the inflammation, so do something about stress and diet. You should find something that works for you, but with any diet the key thing is to stick to pure ingredients. With diet, it is also important to keep in mind that the foods you can eat during a flare are different from the foods you will be able to eat while in remission.
    Worry, fear and stress is probably going to make you feel worse, so find a way to reduce those feelings. I meditate and practice yoga, and excercise more. I am not putting myself in situations that are overly stressful, such as organizing and planning ahead, avoiding people that are … unpleasant.
    Hope you feel better soon!
    Rebeka

  5. Joy McCormick April 9, 2012 at 11:47 am #

    Hi Allison!
    I was just wondering if you have tried at all altering your diet?
    I know many sites say that diet has nothing to do with symptoms, but I honestly think it does.
    I was diagnosed 3 years ago, but had symptoms for many years before that.
    I was also put on the Sulfasalazine because I have no insurance and no way to pay for any other meds. While it helped somewhat, it also made me gain about 30 pounds in less than 2 months! I was miserable.
    After trying weight watchers and several other diets, sometimes trying to starve myself and being miserable, I tried the Atkins diet. I was in phase I of Atkins for 2 weeks and then moved up to Phase II. By the time I was two weeks in, I was feeling great and my UC symptoms were getting less and less. By the time I was on Atkins for 2 months, I was symptom free and then able to completely stop taking the Sulfasalazine with no symptoms remaining. I truly believe my body does not tolerate sugars well. (And our bodies transform carbs into sugars.)
    I have been on Atkins and drug and symptom free for over a year now. I have never felt better in my life.
    It doesn’t cost anything extra to eat the Atkins way. Just search Atkins and you can find the “diet” online. It’s not really a diet, it is a way of life. People ask how I can staick to this eating plan (without sugars), but after feeling so miserable for so many years and how incredible I feel now, I ask them how can I NOT do this?
    BTW, you will hear bad things about Atkins from people– it’s because they ONLY look at the first two weeks of the plan, which yes, is mostly meats, eggs and cheeses, but after the initial state, Atkins adds in vegetables, fruits and GOOD grain products and it’s actually very healthy.
    Because of my success, even my doctor is recommending that her other UC patients give it a try!
    Hope this helps!
    Joy

  6. Allison April 9, 2012 at 12:05 pm #

    Thanks, everyone, for your replies. It’s so nice to hear advice from people that have actually experienced UC. All of this information has been very helpful!

  7. j April 9, 2012 at 2:34 pm #

    There is a naturopath in Portland who specializes in UC and does fecal transplants. It might be worth checking out.

    I found that Lialda, probiotics, boswellia, the SCD diet, and VSL#3 help keep me symptom free. I am a 60 year old female and have had UC for 40 years. There is hope.

  8. Jen April 9, 2012 at 2:47 pm #

    Hey Allison,

    I strongly recommend that you get on the SCD diet. But in order for it to be successful, you’ve got to start it right with the INTRO DIET and then the very slow and gradual introduction of new vegetables and fruits in the very cooked/ peeled/ deseeded and pureed form. I believe it is the only way to ease into the diet and see what foods your body can and cannot tolerate.
    Get the Elaine Gottschall book, ‘Breaking the Vicious Cycle’, as she pioneered this treatment program and the book is jampacked with great information. But where it falls down is in describing how to get on to the diet the proper way. I made the mistake of just eating any allowed foods right off the bat, including nut flour baking and tons of honey, and I flared up in the worst way.
    I highly recommend shelling out the extra $40 bucks for the on-line ‘SCD Lifestyle’ e-book – I think it’s called ‘From Surviving to Thriving’. You will find it on the SCD Lifestyle website and it is worth every penny. It explains everything in great detail, has step by step photos of how to prepare the foods, and gives you plenty of encouragement in taking the huge leap into the diet.
    From my own experience, this diet has saved me from going back on the dreaded prednisone when I flared a month ago – after 5 days on the Intro Diet, the bleeding STOPPED. Things have just gotten better and better from there and now, I have great hope and optimism for the future, something that’s been in short supply for me in the 3 years that I have had UC.
    Do you have a meditation or yoga practice? I find that these practices help keep me balanced and less prone to the negative thinking that UC can bring up.
    As for drinking – there are some alcohols allowed on SCD, but as with all things, moderation is key. As I’ve just started the diet properly about a month ago, I don’t expect to have a drink for several more months until I am stable and eating a little more normailly (ie not the pureed stuff, but just normally cooked SCD meals). But I can’t wait for that first celebratory Gin and Tonic to toast my success in claiming back my health and having done it through perseverance and determination with the SCD diet!
    I wish you all the best. This tough time will pass – if we didn’t have dark periods in our lives, we wouldn’t recognize the light when it does come.
    Sending you good vibes
    Jen from Oz

  9. Allison April 9, 2012 at 3:00 pm #

    Do you happen to have the name of this naturopath? Sounds like a good option that I haven’t considered yet.

  10. PeterNZ April 9, 2012 at 3:09 pm #

    Hi Dude,
    I’m up and down with the tapering off the pred too. Been going on for years. The doctors want to put me on a drug called “methotrexate” as they say that long term steroid dependency is ruining me. Perhaps this med is an option for you too? I’m also on Pentasa but that doesn’t seem to do a lot. I was on azathioprine but I had a reaction to that after a while and my bone marrow was suppressed. Azathioprine didn’t seem to do much either.
    Anyway, what I wanted to say was hang in there. There are other options that people say have had great results for them so why not you too? It just could be a matter of finding that alternative that suits you.
    Chin up,
    Peter

  11. Maggie April 9, 2012 at 5:11 pm #

    Hi, Allison. I live near Portland so wanted to give whatever encouragement I could give. First thing to do is try to manage your stress by doing yoga or meditation or whatever calms you. Maybe you can get on the Oregon Health Plan since you’re a student. Living in Oregon, I have many health issues, UC being one of them so have a marijuana medical card. While I don’t use it often, it does help take my mind off it. I discovered, when I had my last flare, taking immodium, an otc, really helped–it stopped the diarrhea and helped the meds to work. I used to drink a lot and like Adam says, no alchohol. I have to admit, I have a gluten-free beer once in awhile, RedBarn, tastes great! I get it at store up on SE Stark where they sell mostly beer, you can smell it before you even walk in the door! Like Lazelle said, drinking green tea is a good anti-oxidant but it has caffeine so no more than a couple cups, more if you spread it out over the day. Best of luck to you, Allison. BTW, I’m a cat lover, too!

  12. j April 9, 2012 at 6:21 pm #

    Here is the link to the Portland clinic that does fecal transplants:

    http://fecalmicrobiotatransplantation.com/FMT/home.html

    I think we would all be curious to hear if you try it and to hear your impressions of the clinic.

    J

  13. Allison April 9, 2012 at 8:45 pm #

    Wow, I am so grateful for everyone’s feedback and suggestions. Thanks everyone.

  14. Braj
    Brajabasi April 9, 2012 at 9:36 pm #

    Hi Alison,
    My uncle once told me when there is downward fall, there is an upward curve as well.So you have to be patience enough to see that upward curve. First of all you have to controll your stress. The best is buy out some CDs for guided meditaion.I’ll recomend guided meditation by Sri Sri Ravishankar. This will bring some smile on your face which is best medicine i believe and cheap…:).If possible try three times a meditation. Join some yoga class start with pranyam.Deep breathing techniques. The best part is SCD diet and meditation can cure this disease. I’m trying some homeopathy medicines as well to get away from this allopathy medicines.
    http://www.ulcerativecolitis.us/app/homoeopathy.asp
    http://drbenkim.com/articles-ulcerative-colitis-treatment.htm

    All the best…A smile though it is a fake is best medicine for this disease.

  15. Trish April 10, 2012 at 2:21 am #

    Hi Allison. So sorry to hear you’re feeling down and depressed with this disease. As a European, I can’t imagine how awful it is to have to worry about money for medication on top of everything else. I would go on the SCD immediately – get the book Breaking the Vicious Cycle by Elaine Gottshall and put yourself on the intro diet. It is impossible to follow the diet without this book, I think. I second everyone’s advice about yoga and meditation for stress reduction – it really helps. Gentle exercise like swimming and walking are also good – get yourself outside and stroll somewhere pretty, if you can. Alcohol is not a good idea for UC-ers. Maybe the odd glass of very dry white wine, but there’s no reason you need alcohol for a wild night – most of the effect of the fun is in your head. Try a fun night out without the booze and see how you get on. And get some good B vitamins down you and a probiotic – Bev recommended one on this site somewhere. I am also currently trying some herbal tinctures – a combination of fennel, hypericum, oregano, calendula and dandelion root, 1tsp 3 x per day. It tastes nice, anyway, and helps me get down my four pints of water a day (gotta stay hydrated). Re the cancer connection – try not to worry as the medics would pick up a cancer very early in its life, with all the monitoring you have, and our risk is in any case no higher than the general population if our disease is in remission. Worry is the thief of time. Feel better soon, and remember you have a solid community here. Good luck, Trish :)

  16. Sick and Tired April 10, 2012 at 4:53 am #

    Hi Allison,

    I’m in the middle of a mild flare now too. It has been stressing me out as I was doing well on Lialda. I’m now taking Asacol but it doesn’t seem to be helping. Also use Hydrocortisone enemas which do seem to help the flares. As these medications are very expensive, my Gastroenterologist gives me samples. You might want to explain your financial situation to your doctor and see what can be done. I have mild to moderate ulcerative colitis. I did also use a probiotic but didn’t notice much difference and I try to eat fruits and vegetables during my flares. I wish you all the best. I’ve cut out coffee (do miss Starbucks) but coffee seems to bother me. I’ve switched to green tea. Also cut out soda and anything that fizzes. Again,I wish you all the best.

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