Jeckyl and Hyde

Bio:

34 year old married father of 3 who I adore. I have had some sort of issue or another with poo since I was Diagonosed with Ulcerative Proctosigmoiditis in June 2011.

Symptoms:

Current symptoms: A little blood, loose stool, mucous, and major urge in the morning. No diarrhea. Going anywhere from 4 to 7 times a day, but limited only to the a.m. right after I wake up.

My Story:

Was diagnosed with Colitis in the summer of 2011 after all the usual symptoms–blood, diarrhea, mucous, bloat and pain. Currently taking 4 lialda pills in the morning, rowasa enema at night, and an over the counter probiotic. After the first colonoscopy, I was put on Lialda and I went into remission fairly quick for a couple of months. Then I caught a cold and my grandmother died and the symptoms came back. 4 months later, I achieved a “shaky” remission at best for another couple of months with just Lialda. Now, here I am battling an upper respiratory infection in another flare–the roller coaster continues. I don’t want to take antibiotics for fear of making my condition worse.

I live a fairly stressful life as I am the sole bread winner of my family working in sales. I have had anxiety issues all my life and I notice that I tend to flare up when their is a major stressful event in my life–job promotions, having to move to another state–making more money, or I get sick. I consider myself lucky as I have never had to confine myself to the bathroom all day, I have never been hospitalized and I normally have my “problems” first thing in the morning when everyone else is still asleep, but those 1 to 2 hours in the morning are scary as hell. However, once everything is cleared out, I am totally fine throughout the rest of the day–it disappears. When morning comes, the cycle is repeated. Is anyone else like this? I can’t imagine what some people go through with 40 to 50 times a day. I swear, this is one fickle disease. My doctor is considering putting me on 6mp or Remicade and I say hell no! I have read about those side effects. He takes the normal stance–diet and stress don’t have anything to do with this disease and then takes his cattle prod and marches me out of the office to make way for the next patient.

He recently put me on a mesalamine enema at night, but I don’t know if it’s working–it’s hard to keep it in and in the morning have this gross discharge and gas. It almost seems like my colon is more angry. The stool looks better and there is less blood and mucous, so I don’t know. I have only been on it 5 days and I hear that it is better to attack this disease from both ends. Besides, I don’t think the lialda was reaching all the way down (the last 8 to 10 inches is all that is affected). I have taken the hydrocortisone enemas in the past and after a while it just made it worse–no more of those! I have modified my diet a bit–no diet soda, I watch my bread intake and no sweets–that seems to help. I am considering going on the SCD full time. The mental aspect of this thing is tough–probably more difficult than dealing with the symptoms. I worry about the disease getting out of control and becoming a burden to my family. Not being able t o take care of them is a big fear.

My brother in law had severe colitis and eventually had to have his entire colon removed. My wife and I watched him go through hell, but he now has his life back. He says it was the best thing he ever did because he isn’t sick anymore. Don’t think I haven’t had those thoughts run through my head even though his condition and mine are night and day.

Well, I have rambled long enough. I am one of the luckier ones if there is such a thing, but it is hard to be 34 years old and worry about shitting your pants. All insight is welcome and it is nice knowing that I am not alone. Anyone have a suggestion for a natural supplement for anxiety???

Where I’d Like to Be in 1 Year:

In a long remission.
Colitis Medications:
Lialda 4Xdaily
Mesalamine enema

written by Dallas

submitted in the colitis venting area








proctosigmoiditis

7 Responses to Jeckyl and Hyde

  1. Hannah J.` May 28, 2012 at 7:16 pm #

    Hi,
    I just wanted to respond by saying the mornings are rough on me a little bit as well. I take the Rowasa enemas at night. In the morning, I experience a lot of uncomfortable gas. My abdomen just rumbles at times. I do find that they help but definitely there’s discharge and gas when releasing it. Sometimes I think I’m flaring but I think it’s just the remnants of the medication.

    I have found that Yoga helps me release my anxiety. I need to do it more often but that is something I would recommend.

  2. Angela May 28, 2012 at 7:25 pm #

    I’m sorry I dont have any info to share about anxiety but just wanted to comment because I am 32 and your case sounds similar to mine. When diagnosed I was in bad shape and it was severe. I have been through a few meds and currently now only on colazal. I am now feeling much better. I also have most of my “problems” in the morning upon waking up. I know it can be much worse so I am fortunate that I have learned to accept what my mornings have become. I am a teacher so I wake up 3 hours early, do a morning workout routine and eat an early breakfast…I also find that once everything clears out I am ok for the workday (with a few exceptions) There have been a few occasions where I have had some really rough days probably because of something I ate. Anyways I just wanted to say thank you for sharing your story. I know easier said than done but try not to fear what it can become…if youre doing ok now…keep doing what youre doing and maintain…if you worry and stress then it could affect you. I was laid off last year and I made myself sick over it:( Then I got called back few days before school began….I am finding myself in the same position this year and in fear of losing my medical and benefits. Life works in mysterious ways and somehow someway things always turn out ok….so stay positive, positive, positive!

  3. Polly
    Polly May 28, 2012 at 8:01 pm #

    Hi Dallas!

    Yes… I can help you with a natural supplement for anxiety… it is called GABA.
    I have a super high stress job (SAP Master Data Analyst) and my holistic Doc says that flares are ALWAYS caused by bad food (such as GMO corn, soy, etc) or stress. It it is linked to emotion… some people get flare ups at the exact same time of year (such as the anniversary of the death of a loved one)… I wound up taking a 6 week medical leave from my job… and I am set to go back on Friday…
    If all things work out, I do believe that I will be looking for a less stressful job in the near future (and one with less hours)!

    Anyway, my holistic Doc put me on GABA. I started taking 750 mg a day, and that wasn’t quite enough, so now I take 750 mg twice a day (once in the morning, once in the afternoon). You can buy it at a vitamin shop, natural food store, co-op, etc. I highly recommend it!

    Here is the link to the one I buy: https://www.swansonvitamins.com/SN200/ItemDetail

    Best of luck to you… hope the GABA works for you!!!

  4. Bev May 29, 2012 at 6:58 am #

    Hey Dallas…

    Boy, that whole morning thing! That’s me all over! My whole life, I’ve only gone first thing in the morning, even before I was diagnosed with UC, 13 years ago. My husband was always kind of jealous, because he could be constipated for sometimes three days in a row…but not me! I went every single morning, like clockwork. I was so proud of that. Now, I wonder if I was predastined to get this disease, and if that is a sort of marker that one may get the disease. Strange, right?

    The rest of the day, I am fine. I have never gone to the bathroom more than, at the very most, 4 times, and that is when I’m in a flare. I consider myself lucky as well, because alot of people with UC are married to the john. I feel gfor them, that’s for sure! Right now, I am in a sort of remission, and only go once…first thing in the morning, of course! I am only taking probiotics, and just started taking LDN (low dose naltrexone, but just because I wanted to try it to see if it would keep me in remission). I got into remission by taking probiotics, which I have never tried in my 13 year long illness. I will never stop taking them!!

    Anyway, I just wanted to chime in on the morning follies. That’s my MO, as well. I wonder how many of us are ‘morning people’?

    Oh, and those enemas…yep, after I held them in at night, it certainly was an ‘explosive’ and noisy event in the morning. Wow! I’m sure they medicate, but you’re right, they did seem to make my colon very angry! I took them off and on over the course of my disease. Hopefully, I never will have to again. I got very good at holding them in, though. Didn’t want to waste all that money, right?!

    Cheers, and thanks for writing,
    Bev:)

  5. Dallas May 29, 2012 at 1:45 pm #

    Thanks for the insight folks! Definitely feeling a bit better.

    • Bev May 29, 2012 at 4:43 pm #

      Fabulous Dallas!!

  6. Luke June 21, 2012 at 12:47 pm #

    Hi Dallas,

    Hope you’re doing better now. I have a similar problem to yours although I have pancolitis. I was diagnosed in 2003 during my second year of medical school and was able to achieve a decent remission for most of the time I’ve had this disease by watching my diet. My symptoms returned at at the end of Halloween in October 2011 (was eating lots of dark chocolate and other sweets at work, iced tea, beer, barley-based beverages, and fasting for extended periods because it was so busy there) and it’s been the worst flare up I’ve ever had. The odd thing for me has been that I’ve been experiencing horrible, horrible anxiety with this flare up. It seems to me the anxiety is worst as the stool makes it’s way through my colon and for a bit after I finish with my bowel movements. I still have not been able to control this since October though my symptoms seem to be improving after taking dairy (yogurt was the finally link) out of my diet. The worst part of this exacerbation is the incredible anxiety I was experiencing, especially upon awakening in the morning. By the end of the day the anxiety is better controlled. It got to the point that I was only sleeping a few hours a night and waking up in a frank panic–and totally unable to deal with stressors. I had an argument with the office manager and left the job and was actually very relieved to be gone from it. But since then I’ve had these symptoms which I’ve been unable to shake. I’m convinced diet has a huge impact on whether we improve or not but I’m so confused by the anxiety symptoms which looking back now I’ve probably always had a low-level of (because of low-level inflammation in the colon) which gets worse during flare ups. In other words, I think the diseased colon is somehow INDUCING the anxiety. I’ve been trying to elucidate the mechanism for this for quite a bit. But the neural connections between the GI tract and the brain are 95% afferent meaning they send info to the brain and the brain only sends 5% of nerves towards the GI tract. Otherwise, as you probably already know the gut is extensively innervated. That’s why we call it the second brain.

    Was wondering if you feel this way as well: anxiety worst in the morning and much improved after getting last stool out.

    Regarding the mesalamine enemas, I believe they are the best means of treating the disease especially if your disease is proctosigmoiditis. The key is relaxing enough after placing it and having your body habitus angled so that it would maximize coverage of those areas (if laying down on an angled incline you want your right leg to be the most elevated part of your body and your left shoulder/head the least). I achieve this by placing a hard cover dictionary under one leg of a stiff-framed (wooden) twin size bed (for 30 minutes after placement). The other thing I would suggest is that you ask your physician to prescribe the sulfite-free formulation of the Rowasa enemas because it’s possible that sulfites may make your disease worse or slow down healing. It’s called SFRowasa (4grams/60mL). I have more suggestions in regards to this if you are interested.

    I’m taking 3.2 grams of Asacol currently and am considering starting the entocort EC capsules to attack the disease in the distal ileum and proximal colon but I hate anxiety associated with steroid withdrawal (even though entocort is supposed to have fewer systemic effects it still does cause them). The reason I’m sticking to diet for now is I am convinced it is the MOST IMPORTANT part of treating this disease in conjunction of course with taking these meds (which decrease the inflammation). The problem is that the inflammation cannot be stopped adequately if we don’t stop the inciting inflammatory agents to begin with — which is what we’re eating.

    My diet since getting this has always been strict avoidance of (until I screwed up above)

    1. Caffeine-containing foods (sodas pops, coffee, tea, chocolate, energy drinks, “natural” or “herbal” supplements that contain similar gastric stimulants)

    2. Fried foods or overly fatty/oily foods (healthy fats like those in Salmon don’t count)

    3. ALCOHOL (this is probably the worst trigger for this disease I think)

    4. WHOLE GRAINS/excessive fiber (Cheerios and oatmeal are the worst–stay away from barley, oats, etcetera)

    5. SPICES

    6. Dairy-products

    7. Sulfite-rich foods

    8. Soy

    9. Minimize starches, pasta and breads (almost like the SCD diet)

    Make sure you eat multiple small meals throughout the day, starving oneself seems to be a trigger as well. Give us an update and let us know how you’re doing!

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