My name is Selene, I’m a divorced, 56 yr old woman, living in rural Alabama. I was diagnosed with colitis (though nobody ever added the “ulcerative” part to me, on Nov. 16th this year. Never had any issues like this before. I didn’t get a colonoscopy but I was hospitalized for 3 days taking IV antibiotics (Flagyl & Levaquin) and meds for my pain. They sent me home but my symptoms never seemed to clear up. I’ve been living mostly on yogurt with probiotics and jello, in the last month since coming home. Tonight, the flare is bad again & I found this site hoping to get some answers. When I was discharged from the hospital, I wasn’t given a referral to a GI doc which seems a little odd to me. If my symptoms do not improve in the next 12-24 hrs, I believe I’ll be right back at the ED & possibly rehospitalized within the next day or so.
Some more about Selene:
I’ve lived an adventurous life: I am certified to bare boat charter sailboats-means I can charter a sailboat and NOT be required to sail with a certified captain. One of my happiest memories is being in the BVI while I was working toward my certification. I was the only person who’d slept well the night before due to some pretty big swells that came into the bay where we were anchored. To me it just felt like I was a baby being rocked to sleep. Anyway, the captain had me come take the wheel on this 50 foot yacht, showed me the compass heading and told me to keep the boat on course. Everyone else left the pilot area and it was just me and the boat and the wind and the perfection of feeling like I was somehow a part of all that. I sailed that yacht into a tiny scrap of land called Anegada-and only found out later that captains nearly NEVER allow students to sail alone into Anegada because there is a very shallow reef that encircles the island. If you aren’t minding the markers you’ll rip the bottom right off the boat! So our captain either thought I showed promise or he was just too tired to care! LOL
I’m a published author of two short stories that appeared in literary magazines, like every other wannabe writer in the world, I’m workin on a book. I write and read horror, sci-fi & fantasy. My characters are usually normal folks who end up in very un-ordinary situations. I love writing but recently my pain has put a huge damper on my creativity. My chronic pain condition has curtailed a lot of the activities that I used to do. I miss being active and feeling strong.
Colitis Symptoms She’s Dealing With:
I’m unable to eat very much “real” food, though I feel hungry. Tonight’s dinner at my friend’s house, we had fried rice and stir-fry veggies with steak and chicken. 3 bites in, I had to quit because I could feel that the food I was swallowing was not going into my stomach! I was just sitting at the bottom of my esophagus. I’ve had this symptom before and I know from experience that if I keep eating, I WILL see that food again, soon, & it won’t be as tasty coming up as it was going down. So, currently my symptoms are nausea, initially, then my belly becomes very bloated and firm. Then the pain hits and it’s miserable. Because of the meds I take for my chronic pain, my stools don’t typically become loose enough to be called diarrhea but they do contain a lot of mucus. Strangely, Zofran doesn’t seem to help the nausea! To be fair, neither does Phenergan. Tonight was the 1st time I’ve been out of my house for any reason except my trip to the ED in 2 months. I am basically bed bound due to being weak, probably dehydrated, nauseated and in a lot of pain. I’m scared I’ll never be well enough to hold down a job at this rate & currently we have no income–literally, zero income.
Needing Guidance – Selene’s Story…
These symptoms just seemed to suddenly appear one day, out of the blue, for no reason about 10 days before Halloween this year. I made 3 trips to urgent care & was sent home with Bentyl for the gut cramps & Zofran. On the last trip, my vital signs indicated that I was going into shock-my BP was 70/40. Got admitted to the hospital, got a few tests done, got sent home on day 3, still very unwell. [highlight]I have not had a single “normal” day of GI function since getting sick in October.[/highlight] I have been unable to complete the normal tasks of daily living. I also have a serious chronic pain condition called Complex Regional Pain Syndrome (CRPS). Short story, CRPS can lie dormant for years when one day the nerves begin to do strange things signalling the body that there is pain where no pain should be. Recently studies show that in its worst form, this faulty neuropathic signaling can spread to other areas and other organ systems that have nothing whatsoever to do with the original injury. Won’t bore you with the details but, naturally, that’s the kind I have-Type 2 CRPS aka “causalgia.” There’s no cure, only management. It can go into remission & a person can go decades without symptoms only to have it flare again. CRPS pain as rated by the Macgill pain index (which is what docs use themselves to estimate about how much pain they can reasonably expect their patients to experience) is right at the top of the chart, above even certain types of cancer pain. So, I have a pain management MD & I have to take opioid pain meds. I said all that to explain why I believe I don’t have diarrhea. It’s well known that narcotic pain meds constipate patients. I am indeed chronically constipated. However, I began to notice the mucus in my stools back in October and knew something was up. It was so insidious that I kept blowing the pain & the stools off, thinking it was straighten itself out. Then, a bout 3 days before my hospitalization I DID begin to have diarrhea and vomiting and I frankly don’t remember much about that time. My son finally insisted we go back to urgent care & they sent me to the hospital.
I am unable to care for my house, my pets, nor tend to my own physical needs without help. This has derailed my life! My son has had to shoulder the entire burden of our lives all by himself. My mother & brother live an hour away & don’t visit (seriously, they’ve been to my house once in the 18 yrs I’ve lived here). We have some very good friends who live about a mile away but currently they are dealing with their own health/financial issues. They do what they can but really it’s just my son to take up my slack. I’m really upset about this. I have episodes of incredible anxiety where the enormity of it all smacks me in the head but I also have this unbelievable episodes of panic, usually immediately when I wake up. I can’t sleep except for an hour here and there.
My son & I are both looking for work. While I won’t say a lot about his health, I will say that he’s really not much better off than I am. He can’t keep shouldering this burden alone and I am very upset about that.
What I’m MOST concerned about: What is the appropriate course of action at this point, knowing I literally do not have the money to pay a $20 co-pay to urgent care so how much sicker do I need to be to go back to the ED? Forgot to mention that my current BP is 60/48! How much of this begins with the fact that I am under so much stress right now? Based on the symptoms I’ve described that I’m having tonight, is it reasonable to think I might be hospitalized again? Does this sound like I’ve developed ANOTHER chronic health issue or might these problems be a “one off” because of all the stress? Help! It seems crazy but I can’t seem to think logically about when or how or what to do next? I feel trapped & helpless. We are financially desperate & both need & want jobs but I don’t believe I could do a job in my condition. It just looks so bleak and hopeless. This gut pain and nausea on top of all the other pain is sending my brain to place s that I don’t want to consider. My son has voiced the same concerns to me. I just need some support, encouragement and direction because I’m in a box I can’t seem to think my way out of!
Selene’s Medications Right Now:
Right now, I’m finishing the last of the Flagyl that was prescribed for me when I was discharged from the hospital. I also have Bentyl prescribed to the gut pain (which frankly doesn’t do too much), Zofran for the nausea, also doesn’t do too much. Phenergan for the nausea the Zofran doesn’t help (bet you can guess how well that works). I’m also on meds for high BP and take a generic Synthroid for my hypothyroid problem. I do take daily pain meds as ordered by my MD, also take skeletal muscle relaxers. None of that is aimed at treating the UC. Didn’t really know that diet could play such a large role and now, based on some things I’ve read here, I suspect the bacteria in the probiotic yogurt I’m eating is not the most effective kind nor in sufficient amounts. So, basically, other than the Flagyl, and the severe limits on my food intake (not by choice, believe me, I get hungry! but I know what will happen if I try to eat a “normal” meal) I’m not doing anything, nor do I have the resources to do much else.
written by Selene
submitted in the colitis Venting Area…check it out