Nervous Wreck about Ulcerative Proctosigmoiditis

Introduction:

A male, Jewish, New Yorker that just turned 22 in March. I’m a senior in college. I was diagnosed in December of 2011 with moderately active Ulcerative Proctosigmoiditis (although I probably had it for years undiagnosed)

My Symptoms:

Cramps, a few daily trips to the bathroom (or not going at all. Depends on the day, I suppose), foul smelling bowel movements, kidney stones. I also have severe chronic fatigue.

Hey guys,

I’ve been in denial for a while about having this disease. You should know that I am a very nervous, anxious person and I suffer from extreme panic attacks. When I found blood in my stool, which led to my getting a colonoscopy, it was on a Friday night and obviously none of the doctors were available during the weekend, it was so debilitating that I didn’t leave the house all weekend and I was shaking in my bed like a leaf, not to mention I vomited about 4 times. Even now, my hands are trembling over the keyboard. Some background:I first started noticing mucus in my stools in 2007. I thought it was normal for a while, but the smell was so foul and when I wiped (sorry about the graphics), it looked like I had just blew my nose. So I went for a sigmoidoscopy, which was a pain in the ass (no pun intended), but I’d rather do that than a colonoscopy anyway. I don’t like starving and I don’t like drinking that foul stuff and defacating my guts out so I welcome a sigmoidoscopy over a colonoscopy, even though the actual procedure is much less comfortable. The doctor found lymphoid follicles. He took biopsies, which said that there was normal colonic mucosa with benign lymphoid aggregates. Colitis was NOT identified.

And that was that. I also had a stool culture. The doctor said don’t worry, no big deal, just continue what you’re doing.

Alright. The symptoms of mucus came and went transiently and I thought no big deal, I had a doctor check it out and he seemed fine with it.

In 2009, I found a bit of blood and again, I was alarmed. This time, the stools were more orangey and still had that same foul odor. The doctor gave me another sigmoidoscopy. Biopsy said the same thing as it said two years ago: Colonic mucosa with prominent lymphoid aggregate in the rectum. In the colon: same thing as above, except it said I had “focal cryptitis.” More notably, the doctor found two small apthous ulcers. No diagnosis of Colitis either so I continued on my merry way.

Then came late 2011. I had my annual checkup and I spoke to the doctor. Now, at this point, I continued having mucus stools, but I thought nothing of it, having been checked out two times. However, I had developed a new symptom: my anus was continuously itchy and had creamy, white discharge. I would be walking on the street and all of a sudden, I would have such an itchy anus that it made me squirm. I figured that the smell, the itch and the creamy discharge were as a result of my underpants and the heat. However, I figured I would bring it up: this was a nuisance so I brought it up to my GP, hoping he could prescribe some anal itch cream or something. He said that it could be nothing, but I should get it checked out and he referred me to a gastroenterology (a different one than before).

At this point, I thought “screw it.” I already had two sigmoidoscopies and the previous doctor found nothing. Why go through this ordeal again? Then on Friday night, I found a little blood in my stool and on my wipe. I immediately went into panic mode because it was the first time I found blood in my stools. Oh man, it was the longest weekend of my life. I was so scared that I had colon cancer or something like that. I heard of UC and Crohn’s Disease, but knew little about it.

So Monday came and I showed the new gastro. the previous reports. He said that those don’t help him because the previous doctor didn’t go so deep and didn’t solve and rectify this persistent problem. He suggested a colonoscopy the next day. As you may have concluded, I’m a nervous nelly and that was one of the worst days of my life. That, coupled with not eating, drinking this disgusting drink and crapping my guts out led to more panic (I didn’t get a wink of sleep as I was shaking like a leaf all night) and puked twice (adios formula). Longest night of my life. My butt was sore from crapping so much, my stomach was upset and I was a broken person. All I could think about was colon cancer and chemo and dying. Here I am, a 21 year old kid worried about these things. Then again, I had previously been diagnosed with kidney stones after seeing blood in my urine and I thought kidney stones were for the elderly. Luckily, I haven’t had any effects from the kidney stones (haven’t passed them. They’re just chilling in my kidneys).

Anyway, they did the colonoscopy, I woke up and was informed I had a mild form of Ulcerative Colitis. I puked (again) right after I left the doctor’s office I was so nervous. He showed me pictures of my colon and I saw these white things that resembled lightning bolts in my sigmoid colon and my rectum. Whoopee! However, the doctor assured me that it was mild, he was optimistic about the prognosis and that I would be taking medication so the UC would go into remission for MAYBE, HOPEFULLY, the next 80 years or so. Fingers crossed, right? Haha. My parents and brother (to my knowledge) do not have colitis, but my cousin appears to have either UC or Crohn’s.

Well, I came home and started the medication the next day. I was prescribed Mesalamine rectal suspensions for a week or two and 3 daily Asacol pills of 800 mgs each. I was having these extreme anxiety attacks of course and only researching and looking up the disease made it worse. I would hear of things like “removing your colon,” “there is no cure” and “people with UC have a heightened risk of colon cancer” and I would go into frantic mode. No school for a few days as I just couldn’t go outside. I couldn’t focus; I couldn’t act normal.

And I still can’t. I’m worried about it, every single day of my life. I’m in denial about it also. Wikipedia states that UC affects 35-100 people for every 100,000 Americans and I HAVE IT? What are the odds? I was in denial. I couldn’t nor did I want to do any research. I just wanted to take my Asacol every morning and worry about things other than health: girls, school, sports and what I’m gonna do after I graduate from college. But here I am. The symptoms have improved. I still have these anal itches with the white discharge, but not as often as I used to, nor do I have outwardly visible mucous in my stools. They’re brown, instead of being orangey or snot-colored (sorry for the graphics). I still have cramps (probably even more-so now than before I was diagnosed). The strong smell of mucous remains, but what can ya do?

So please guys, help me. Tell me lies if you have to. Tell me that this is nothing to worry about. It’s not a colon disease, it’s just a condition like being bald or having heartburn. I’m nervous by nature and the worst thing is going through anxiety. I am on meds for anxiety and depression (Prozac), but health problems seem to overrule the meds. I also dread my next appointment with my gastro. and I dread having to hear him say I need another colonoscopy.

Like I said, I’m in denial. I have this rare disease, but I can’t admit to it because it seems so unbelievable. Hell, with those odds, there’s a better chance of an asteroid hitting Earth than me having UC, or Ulcerative Proctosigmoiditis (not 100% sure what the distinction is.) Yet I have it. I HAVE IT and it’s so hard to accept and not worry about what’s going to happen down the road (colonoscopies, colon cancer, removal of my colon, etc.) I can handle the trips to the bathroom and the anal itches if it meant believing that I don’t have a disease. Help me, guys! I really need you.

Sorry for the novel, guys. Anxiety has taken over.

Where I’d like to be in 1 year:
Cured. I never want to have to worry or think about this disease again. I want to be normal and care-free.
Medications I’ve used:
I’ve taken 3 Asacol pills of 800 mgs each since December of 2011 every morning. I took Mesalamine rectal suspensions for a week or two.

written by Mike

submitted in the Colitis Venting Area








new york

22 Responses to Nervous Wreck about Ulcerative Proctosigmoiditis

  1. Shirley NZ April 10, 2012 at 2:36 pm #

    Hi Mike.
    You have to relax, you are only making things worse. Accept that you have it and rely on your meds. RELAX RELAX RELAX. It is as good as a cure. I take the same percribed meds as you, and super shield pro biotics. I am feeling great. I know the anguish of what you are going through, I have been there, but there is light, you have to help yourself and panicing is not the way.

    • Ahmed April 2, 2013 at 11:41 pm #

      I totally agree with what Shirley NZ Says,
      Do you know that with all that tension you could have already been cured from ulcers and still having the symptoms of irritable colon (Colon irritation because you are nervous),
      Think it this way, you have ulcers, you have cancer, you have whatever, you did your best and you have two options, live your life shaking like a leaf or starting to think of something else…

      You know people can live with HIV, cancer, and other lethal diseases for decades and have a normal life, they could also die in a car accident rather than from what they have…

      My dear brother Relax yourself and try to enjoy your life to the max.
      This doesn’t mean being alert of your health and any potential issues that may come around…
      Well said Shirley…

  2. Karen April 10, 2012 at 2:45 pm #

    I take the same med as you and I take a probiotic and so far have done fine. If you watch your diet and take care of yourself you will be fine. Try to relax as much as you can and remember everyone is struggling with something yours is UC. It will be OK just hang in there and find what foods trigger your stomach cramps or other symptoms and stay away from them. Generally dairy and sugar are things to stay away from. Not getting upset is a very good thing as stress is bad for UC so try to mellow out.

  3. Bev April 10, 2012 at 4:03 pm #

    Hi…

    It sucks being diagnosed with something and told that it is forever. I freaked when I heard that, too. I still have a hard time accepting it, 13 years later. I almost refuse to accept that I will have this forever.

    It’s awfully harsh or PeterNZ to say what he said to you. This disease, unfortunately, often progresses, as I have learned, so it may get worse for you, off and on. It can start out quite mild. I hope it doesn’t get worse, but it definitely can.

    Keep trying to live a life. That’s all we can do, right? We have to just get out there, and participate.

    Cheers, and chin up! With time, your outlook will change. Mine has…

    Bev:)

    • PeterNZ April 13, 2012 at 2:04 pm #

      Jeepers Bev,

      I’m trying to tell the little bugger that he has no worries and should be grateful as he has such a mild case – not that it’s gonna get worse on him! He’ll be freaking now.

      Anyway mate, my sister had just one mild flare and took some pills and hasn’t had a peep out of it since (years). Again, without being harsh, just pull yourself together and get some perspective here: It’s a bit of mild inflammation in your gut and it will probably be fine with a few mild meds. One thing I have found with colitis is that worrying about something that probably won’t happen isn’t going get you anywhere, dude.

      Try “colifoam” for anal itches.

      Cheerio,
      Peter

      • Bev May 9, 2012 at 3:16 pm #

        My Bad, PeterNZ!

        I should not have said it could get worse. You’re correct, it most definately may not get worse at all! There are plenty of people who have UC super mild, forever.

        I missed that sense of humor that I know you have! My problem, not yours. We need funny mates on here, and sometimes, we all need to be snapped out of a funk.

        Cheerio to you,
        Bev:)

      • Ryan May 30, 2012 at 7:51 pm #

        Sorry about this, but I also sort of agree with peter, I was diagnosed with a much more severe case and i am not saying it doesnt suck for you, but I’m not sweating it to hard. You will be ok, especially if it’s mild. Maybe you should talk speak to a therapist because it sound like your anxiety is the big problem. I really don’t think the colitis is going to be that rough for you. I don’t think it is going to be that bad for me either, and i have it pretty bad…

  4. Math Teacher Tiffany April 10, 2012 at 4:08 pm #

    Hey Mike,

    I’m sorry this has been such a stressful time for you. It will all be okay! Try to relax – stress can actually make a flare worse (it won’t really cause a flare, but it will make it more difficult to heal).

    It sounds overwhelming, but I really can promise that everything will be all right. I was diagnosed a year and a half ago with a pretty severe case of colitis. I’ve had to be hospitalized several times, and take over 20 pills a day. I bring this up not to scare you on how bad it can be, but to reassure you that no matter how bad it gets, you can still lead a normal life! I’m 25, I was married a few months ago, and I teach middle school. So in spite of this condition keeping me from doing EVERYTHING that I would like to do, I don’t feel limited in any way.

    Just make sure to listen to your body and take care of yourself. Take it easy sometimes if you need to, don’t be afraid to take a day or two if you’re flaring. I promise if you listen to your doctor (this one sounds like he knows what he’s talking about), then you’ll be ok. Look at the stories on here, watch your diet (stay away from alcohol – I know that’s hard for a 21 year old to hear), and take your meds.

    I can PROMISE you that everything is ok!

    Tiffany

  5. Math Teacher Tiffany April 10, 2012 at 4:09 pm #

    Hey Peter, the point of this website is to be supportive! :) I think we all freaked out when we first had symptoms and got diagnosed.

  6. Melissa April 10, 2012 at 5:07 pm #

    Mike, as others have said, try to relax as much as you can. When I was diagnosed I felt quite similar to you. I couldn’t believe I would get something that would last “forever”. The more I read about it, the more I freaked out. Luckily, I have been able to manage it relatively well with diet. As Karen said, figure out what foods trigger you. The biggest thing with that part is stick to it! I cheated here and there. Then, stress came along and here I am in a flare up. My first in years. It does suck and I’m getting quite cranky about it. I go for a colonoscopy next week. Of course, I keep worrying that they will say things are much worse. However, I try to bring it back into perspective. A lot of people suffer from this disease more severely than I do.

    Hang in there. It will get better!

  7. Trish April 11, 2012 at 12:08 am #

    Now then, Mike, CALM DOWN. Easier said than done, I know :). I’m sure we’ve all had plenty of white nights on this forum convinced we’re about to die at any moment. But remember we are the lucky ones – this is NOT colon cancer and it’s not Crohn’s. UC is curable with a colostomy, which is a marvelous thing. Now, a colostomy might not seem like much of an option at your age, but believe me, there are plenty of people in the world walking around with one and living totally normal lives. All it means, as one UK sufferer’s boyfriend pointed out is: “Your bumhole’s round the front instead of round the back”. And besides, you are a LONG, long way from that with your proctitis – UC is an ascending disease, and yours had been identified at its earliest stages, so lucky you. As to what you should do now, I would suggest: keep taking the meds and keep listening to your GI and keeping him informed, because he sounds like a good bloke. Find a yoga class and a meditation class and learn to do both on a daily basis – you will not believe the difference it makes to your mood. I meditate for perhaps five minutes two or three times a day and it is like switching your mind off or having a sleep or taking a shower. It doesn’t mater which technique you use – just use something: it is a powerful tool. Get yourself, straight away, on an anti-candida diet. That anal itching sounds to me like galloping candida, so you need a powerful probiotic and to cut out all sugar, alcohol, fruit and starches. The SCD is very helpful for UC sufferers – it should clear up the mucus problem – and you can combine it with anti-candida (you don’t need to stay on anti-candida forever, just a month or two will probably be enough). Remember, none of us wished for this disease but no-one has a right to get through life scott-free – why shouldn’t it happen to us? At least we don’t live in a war zone… As to your next colonoscopy, you will get through it a lot more easily if you cease to eat solid food two days beforehand and switch to a diet of soups and jellies for about 48 hours before taking the Fleet or whatever it is you take. For more reassurance about the disease in general, read Jill Sklar’s ‘Crohn’s and Ulcerative Colitis – the first year’, which is written by a patient-expert. And get Breaking the Vicious Cycle by Elaine Gottshall and follow the SCD – it will give you more control over your life and your symptoms. Good luck, and feel free to vent on here when you’re panicking. :) Trish

  8. Polly
    Polly April 11, 2012 at 11:11 am #

    Hi Mike!

    I agree with you 100% on your “Where I’d like to be in 1 year” Cured. I never want to have to worry or think about this disease again. I want to be normal and care-free.

    I was recently diagnosed and am realizing that I have been in denial and it’s time to deal with this thing. I currently am in a flare (going on 3 weeks) and… I just want it to be over. Forever.

    So misery loves company… right? So, I’ll tell you my story… I hate doctors. I hate them I hate them I hate them. I can go to the eye doctor, dentist, chiropractor, all that just fine… but you get me anywhere near a doctor’s office or hospital and my body goes into some kind of auto-defence mode. It’s a reflex, a phobia… I’m not really sure. I turn white as a ghost and my heart rate goes way up and I get all panicky. It’s insane. I’m 27 and I act like a 2 year old at the doctor’s office. Anyway, I digress.
    So, I started seeing blood in my stool on Nov. 1. I finally went in to see a doctor in early Dec. I was scheduled for a colonoscopy on Dec. 12. Well, I did the whole prep thing, took the laxatives, drank the gatorade mixed with whatever, magnesium citrate, whatever. I did the whole thing. We got to the GI office and I checked in and when they called me back into a room to go through my medical history with me… I fainted!!! I was so nervous (and dehydrated and probably anaemic) that I just fainted right there in the chair as they were going through my medical history with me. I was soooooooooooooooooooooooooooo embarrassed. The people at the GI office were pretty cool about it, though.

    Anyway, Mike, if I were you, I’d try to find an alternative medicine doctor. Hopefully they can recommend a diet to you, get you off the meds, get you on the right combination of probiotics and other supplements that help with inflammation (like fish oil, magnesium, and vitamin D).
    Also, my health care provider (a chiropractor whose been helping me with the probiotics and supplements listed above) recently suggested that I buy some GABA for all the stress that I’ve been trying to deal with. It is an amino acid (neuro-transmitter) and it “supports a calm mood”. I’ve been taking it for almost a week now, and I do feel more calm. You can buy it at a co-op or natural food store. I’d give it a try.

    Don’t lose hope, Mike! There’s advancements in medical technology everyday… I have just started researching fecal transplants. Gross in theory, but… I believe the science behind it.
    My cousin has been really sick on and off for almost 2 years, and she was recently diagnosed with Crohn’s… UC/Crohn’s… it’s got to be genetic, right?

    It sucks, right? But you’ll get through it. We all will. Take care.

  9. Mike from NYC May 8, 2012 at 10:45 am #

    Hey guys,

    I’ve doing better since the fateful day I wrote that post. The key? Sorry to say, Adam, but ignoring this website and ignoring everything about IBDs. I can live with the symptoms I have right now and I can live with taking a pill of Asacol 3 times a day (though it costs $200 for every refill). I can deal with going to the bathroom a few times a day and having an upset stomach for some of the day. I can deal with the anal itches, the mucus in the stools, the cramps, the fatigue. What I can’t deal with is the anxiety and the thoughts of what might happen in the future.

    For example, I came back to this website because I heard Patriots LT Matt Light retired because he was battling Crohn’s Disease. Then I heard another soccer player in Europe retired because of UC. That immediately sent me into anxiety mode, which I am in as we speak. The thought of getting multiple surgeries, removing my intestines and colon, having a hole in my stomach and having a J-Pouch, etc. That I can’t deal with. Those thoughts leave me shaking like a leaf and debilitating me. I had my last day of classes today (and a few review sessions) and I couldn’t go because I was too nervous. The thoughts of what MIGHT happen in the future and me accepting them as inevitable, makes me feel like a ticking-time bomb, which makes life terrible and unenjoyable.

    I want to hear that this disease is nothing. That Proctosigmoiditis is a curable disease or, if not curable, a dormant disease that is nothing more than a condition like being bald or having the hiccups. I have not heard that, but something that actually was somewhat relieving (believe it or not) was Peter saying that I should shut up and stop being a p*ssy. Why? Because it makes me feel like I have nothing to worry about (even if I do). It makes me feel like I’m going to be ok and this is just transitory. If I had a brain tumor and I was on death’s door, I don’t think Peter would’ve said that. However, sometimes I feel like that. Sometimes i feel like I have this fatal disease. So by telling me to shut the hell up, he made me feel secure in at least thinking that my Proctosigmoiditis is no big deal.

    • Bev May 9, 2012 at 3:19 pm #

      Right on Mike!

      Bev:)

  10. sc May 9, 2012 at 9:51 am #

    Mike,
    I’m not saying you don’t have problems but perspective really the key. If people telling you it’s nothing makes you feel better why not get out there and look at what’s going on in the world or even just tell yourself that it’s nothing and see if that makes you feel better? Yeah, you might need surgery. Little kids have it. Babies have it. If you have to have it, you’ll have to have it. It sucks but life’s pretty unfair.
    I don’t mean to be rude. My six year old has had pancolitis for 3 years, so trust me when I tell you I know how bad this disease can get. My brother was dxed with mild UC like yours at age 24. He refused to take meds and only takes them when it really bothers him (asacol). It’s been 10 years and his UC has never progressed (so there’s hope for you right there) But guess what? The year after his UC dx he had a stroke, became paralyzed, had two brain surgeries, radio therapy, almost died many times (and I’m talking came within minutes of), went through years of recovery and pain. Guess what? He decided he was going to have a normal life and he went back to school while working full time, got an MBA from a top school, started dating, got married, makes tons of cash, travels, lives a great life. He has no feeling in the left side of his body.
    My 19 year old cousin had a brain tumor removed two years ago and she lives with seizures every day, knows the tumor can grow back and she might have surgery again, lost a lot of her vision as a result of the surgery but she graduated high school with her class with great grades, got scholarships from several good universities and now is two hours away from home living with friends in a very competitive premed program. She WILL be a Dr. She wakes her 19year old self every night to take VERY toxic meds in her dorm room and worries about waking her roommate up.
    My 51 year old uncle was dx with a kidney disease about 10 years ago, went through hell with meds, treatments, dialysis, diets, finally my mom gave him a kidney but guess what? It didn’t work (almost always does) and he’s now on dialysis for life. But, he works for himself, supports an entire family with his salary and enjoys an active social life.
    I don’t tell you this to make you feel bad. I am lucky and thankful to have these people in my life as I know how to live with grace,strength and dignity. I know my daughter will have a great life. The way I handle this for her will determine that.
    Perhaps you might want to look into speaking to someone who has a background in medical trauma/chronic illness. I wish you all the best.

  11. UC Family Boy
    UC Family Boy May 10, 2012 at 2:01 pm #

    Mike,
    I have very recently wrote a post ‘Domino Effect of Colitis’ and it has been my second week on 50mg Presidone,2 x Colifoam and also 3x 800mg Asacal. Currently I am working away and staying in a hotel and sharing with a work college (man you would flip if you was in this position), however I am currently living ‘symptom free’ however I am more concerned when I am totally off the Steroids and Colifoam to see how things develop. My diet currently has been awful (partly because the Steroids make me hungry (luckily no other side effects) and there is only rubbish around to eat). My Tests showed greater inflammation than yours however without cramps, stones or fatigue (though had more BM’s)so I guess everyone is different as UC is individual in its existence in oneself. Saying this the last few weeks have made me live without constantly thinking about UC, nice But I would be foolish to not want to consider my health (As a race we have become king of our planet, live in any environment-concur and divide and this attitude makes us think we are invisible yet we are no more greater than the knowledge we give ourselves). Give yourself the Knowledge dude, I am slightly excited as the possibility of a Diet that would make me stronger and even live longer than the ‘care free’ junk eaters. My Fear is my discipline but my drive is my Health. The future is unseen so lets speak about now. Lets do what we must today and tomorrow will take care of itself. The problem is not UC, it is our thoughts towards adaptation.

  12. :) May 27, 2012 at 8:53 am #

    Hi Mike,
    We have all been there, you have to keep your head up and motor on. That is the ONLY option!
    Somedays will be good and somedays will be bad,like any disease or issue in life. Perhaps a gratitude journal would be a good idea for you. Everyday write down 5 things that you are grateful. The more stress we put on ourselves ,the less energy our bodies have to keep us healthy.
    Perhaps find a friend that you can confide it,to talk about your concerns,sometimes their insight will open your eyes to something you never even thought of.
    I hope one day you’ll find it in yourself to Look outside and see the beauty in this life you have been given.
    -:)

  13. JamieIsLame
    JamieIsLame May 27, 2012 at 9:11 am #

    Wow wow wow DEEP BREATHS!!

    you have mild colitis, your doctor told you this!

    the whole removing your colon and increased risk of cancer are for people with chronically active colitis who flare typically 2-4 times a year, your doctor has told you he thinks you could be in remission for years, you have nothing to worry about!

    your colitis is being dealt with by the weakest medication they have available for colitis! which is great news! Asacol doesn’t work for most people, they then need steroids, maybe immunosupressants or even biological treatments like Remicade infusions (which i’m currently on for severe colitis)

    Also, the chances of a meteor hitting the earth are a lot less than you getting colitis,
    Colitis affects 1 in every 10,000 people in the world!! it’s not that un-common, it has a high prevalence in the western world, with 2 million people in the USA and 3 million in Europe suffering from it.

    it affects males and females equally and is more likely to affect 15 – 25 year old people.

    you’re smack bang in the target, you’re from america and 22, this is your disease.

    I’m 18 and from Ireland, and at first this was VERY difficult for me to come to terms with, but we were diagnosed only 2 months apart and i’ve been embracing this for a while now!

    I also suffer from anxiety issues (so bad, that when I first went to hospital I wouldn’t even let them touch my abdominal area or take a blood test) but this is something you NEED to get over, you can’t let it get in the way of your disease management! if you keep worrying about all the side effects, possible outcomes and everything negative about colitis, you wont be able to live with it!

    you need to be aware of your disease, you need to know all the possible outcomes and realise that they probably wont happen to you! Eliminate the negative, accentuate the positive.

  14. Ryan May 30, 2012 at 7:36 pm #

    I was just diagnosed the other day and am very new to all this, but i t seems to me that being a nervous wreck and denying the fact all together will just make the problem worse. I am not happy about it either but I have learned in life you have to face your problems head on. Also it really isn’t that rare of a disease, plenty of us out here have it. I prefer to think of it as and call it my condition rather than disease, maybe that will help you feel less debilitated. I’m sorry you are taking it this rough, but you can’t let it control you. Especially if your doc says its mild, you should be able to keep it in check. just figure out what works for you and get regular colonoscopies, if you develop cancer as long as you catch it early it shouldnt be a big deal. Please try to feel better, I feel for you brother.

  15. Mike from NYC July 3, 2012 at 10:54 am #

    Hey guys,

    Just a bit of an update, as well as some questions (I’d love and do love to read/reading your comments and advice):

    So I had been doing relatively well up until this summer (mainly because I have no structure in my schedule in the summer since school is out).

    A few weeks ago, I had what I thought was a flare up. I was going like 8 times a day, with watery stool. So I went to the GI, he put me on Florastor (any opinions on this, guys? I’m still on it and found that it is helpful) and took a stool sample. A few days go by and my GI found C. Difficile in my system and put me on Flaygyl for 3 times for 10 days (strong dosage too). I started that on a Friday and on Sunday night was when everything changed for the worse. Sunday night before I went to bad, I noticed DARK BROWN urine and I kind of brushed it off. On Monday morning, I noticed even more dark brown/dark red urine and i was scared to death.

    You have to understand something: I’ve had a fairly traumatic childhood. My life has been a living hell and I haven’t…adapted and dealt with it well. I’ve had depression for as long as I can remember and I’ve been suffering from anxiety ever since 2002. And yes, I have been on meds and have been seeing a psychologist/psychiatrist. Even so, I suffer from TERRIBLE, debilitating anxiety (not all the time, but when I do, GAME OVER).

    So I went to the urologist 30 minutes later, he found kidney stones (quick sonogram, which is no surprise as I mentioned earlier), but no substantial blood in the urine (just a trace). I went for a CT Scan (found nothing but stones and the GI/Urologist said that kidney stones are an effect of UC) So I came back home with little relief because I still saw this dark red urine later on in the day!

    Plus, let me do some advising of my own to you guys: DO NOT TAKE FLAGYL. EVER. That stuff is poison. First off, when you swallow the pill, it tastes like you swallowed metal. I even puked once after I took it. It’s terrible! And it lingers! Second, I READ that it increases your anxiety (I can’t say for myself since my anxiety is abnormal as it is), but I felt my anxiety intensify while I was on it.

    So because of my anxiety and maybe because of my C. Diff/adverse effect to Flagyl, I couldn’t eat, I couldn’t think, I couldn’t sleep. I would spend most of the day in my bed, shaking like a leaf, curled up in a fetal position. The other times? I would be in the bath, trying to sweat off the fever, chills and difficulty breathing (tried reading some self-help books like “Power of the Subconscious MInd,” which didn’t help) and I would be on the toilet either defecating or urinating multiple times a day (again, knowing my body, those are symptoms of anxiety. Hard to say where the UC/C. Diff. begin and the anxiety ends). I felt terrible! No food in my system, yet I was constantly on the toilet!

    So because I was feeling so crappy (no pun intended), I ended up going to a GP (a terrible at that. My regular GP was on vacation so I saw this new one and she was truly awful). She took my blood, did a urine test and called me a week later, saying I had anemia (another effect of UC). Again, I know it’s quite common, but you don’t know who you’re dealing with. I am A NERVOUS WRECK. Sex, weed, meds up the gazoo, etc. Nothing relieves my tension/anxiety. I always like to say that my mind has a mind of its own…one in which I can’t control. I can’t control what I think or what I feel. So when I heard I had anemia, guess what happened? ANXIETY MODE! So later on in the day (bear in mind, I still had loose stools and was going multiple times a day), I scheduled an appointment with my GI. He put his finger up my bum, saw formed stool without blood and said I was fine, it was anxiety-related and that the C. Diff was gone (I had taken my last dosage a few days prior). Furthermore, he said that the GP was a quack and that I didn’t have anemia. PHEW! There is NOTHING more fulfilling for me than getting a clean bill of health. I was ok…well, except that I had UC and a huge anxiety problem, but hey, beggars can’t be choosers.

    Since then (which was about two weeks ago), it’s been an up and down ride. Every day, I wake up between 6:30 and 8:30 to defecate. It sucks and I can never really go back to sleep afterwards. I don’t know whether it’s my body rhythm or not, but I wake up every day with my UC the first thing on my mind (maybe that leads to me going to the bathroom or maybe going to the bathroom leads to the anxiety and thoughts. Chicken or the Egg argument). There have been days where that was the only time I went to defecate (once or twice a day) and other times like today, where (again, don’t know if it’s because of anxiety or not) I go like 6-9 times a day, including going to the bathroom in a restaurant and in the NYC Sex Museum (did I mention I’m a germophobe?). Rinse and repeat. It sucks. What else can you say? One day, I’m enjoying life and the other day, I’m a hermit, who constantly has to defecate and who stays in bed all day because he is anxious, depressed and hopeless about this incurable disease that could (and may very well) get way worse. I just pray that a cure is found sooner rather than later, not only for me, but for all those who suffer with IBDs. Where’s the distinction between the UC and the anxiety? I don’t know and that just…sucks.

    On an unrelated note, I’ve found some websites claiming that they have a cure (not necessarily treatments, but an actual cure) for UC and other IBDs (if you google it, you’ll find many). Anyone ever try any of these? Do they work?

    Thanks for reading, guys! I really appreciate all your help and advice.

  16. Kate July 5, 2012 at 10:36 am #

    Mike,

    If there was a cure for UC, no matter the cost, we would all be in line. There are many treatments and diets that help put you in remission, but a cure, no. I’ve heard someone say they were cured after taking Lialda, and I can say that after being on it for a year, I am not cured. When I skip a pill, I feel it. But I have been in remission for 6 months now and thankfully it’s become so routine now that I don’t much think about it anymore. The only thing that worries me is the money my mother has to spend to keep me off the toilet.
    I agree that this sucks. I also feel anxious and worried about my future with this disease since I want so desperately to be an actress and that career is so uncertain that I may have to change dreams in order to keep myself alive. I’ve never had severe anxiety problems, but I have a few friends who do and the best thing is surround yourself with people for most of your time. The more time you spend alone, with nothing to occupy your mind but this situation, the more depressed, anxious, and self-deprecating you become. This website did a lot for me, and I suspect is does a lot for others as well, but to be honest, a computer can’t hug you or give you that humanity we all need.
    Reach out and let others know you. I may be assuming too much, but it’s been my experience that those who say, “I’m too tired” or “I’m not up for it” put themselves in a hole that is really hard to get out of.
    We all have crap we have to deal with (no pun intended) but we make the best of it. Keep your spirits up.
    Kate

  17. Mike from NYC July 5, 2012 at 7:09 pm #

    That’s the thing, Kate. It’s a Catch-22. You want to bring yourself out of this slump (because you know you will feel better emotionally) known as anxiety of UC, but you PHYSICALLY can’t because MENTALLY it won’t allow you to. It’s terrible.

    I feel like a ticking time bomb. Yeah, I guess I would consider myself in remission and my GI said back in December when I was first diagnosed with UC that he expects by taking 2400 MGs everyday of Asacol, it will put me in a remission for 50 years (considering I’m 22, I could dead by then and bugs, worms, ants, etc. will have consumed my colon. Hell, by then, they can have it! Haha). So I guess that’s just as good as a cure.

    It’s interesting because you said this website is helpful (which it is no doubt is for many. Thanks Adam!). It definitely gives me a sense of community and the fact that we’re all in the same boat (some obviously more severe than others). However, the more I read the stories, the more pessimistic I get. I read the positive stories of how people have a sense of humor about UC and how people are getting better. At the same time (going back to my ticking time bomb statement), it seems INEVITABLE if you just read the stories on this website that I’m either going to be A) hospitalized for my UC or B) need surgery to have my colon removed and have a stoma put in with a J-Pouch or colostomy bag or whatever. THAT is TERRIFYING to me. So much so that when I’ve thought about it a few times, I had to run to my bathroom and vomit. That’s what I meant with my earlier post by saying it was hard coming to this website: Out of sight, out of mind. Ignorance is bliss.

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