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Selene’s Newly Diagnosed, Still Suffering Without Appropriate Meds & Needs Guidance

Meet Selene:

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. I have not had a single “normal” day of GI function since getting sick in October. 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




11 Responses to Selene’s Newly Diagnosed, Still Suffering Without Appropriate Meds & Needs Guidance

  1. Adam
    Adam December 27, 2016 at 11:20 am #

    Hi Selene,

    I’m super sorry to hear all that you are going through right now. This for sure is not going to last forever, and if in fact you do have ulcerative colitis, it would be very important for you to come into contact with a good gastroenterologist doctor.

    To be diagnosed with UC from someone other than a GI doctor is not very common (yes it does happen, but RARE).

    I do not know the exact rules regarding health insurance for someone like yourself who might not be able to afford private insurance in Alabama, however there must be some resources available to you.

    My overall first bit of advice would be to focus on finding a gastro doctor. You will need them in the future, if only for a periodic colonoscopy. But no matter what, it is something that people with UC should have available (including you).

    Maybe take a moment to look at the list of GI doctors who have been reviewed from people who use this site (there are several listed in Alabama on this page: http://www.ihaveuc.com/find-a-doctor-near-you/ ) and you might see one that is semi close to your home.

    I would call them, tell them your situation, and ask them what they can do for you.

    If that is not a possibility, and if you are not feeling well right now, GO TO THE HOSPITAL and ask to see a gastroenterologist doctor. Tell them that you have been diagnosed with “inflammatory bowel disease” and hopefully they can get you to a GI to finally see you and evaluate you.

    Either way, it has to be very hard for you considering all that is going on medically, but I definitely think there are some good chances that you will be crusing the BVI’s one more time and dropping the anchor off the beaches of Anegada soon.(I was there with my uncle B who was a charter boat captain in those very islands for 17 years of his life…and he too had inflammatory bowel disease the entire time).

    Best to you,

    Adam

  2. Lisa Baker December 27, 2016 at 11:47 am #

    Selena, What part of Alabama are you from? I’m from North Alabama. If so, I can recommend a doctor. Are you on any kind of assistance? That may be necessary in order to get a GI, and get checked out properly. I would think that you’d need a colonoscopy to rule out things other than IBD, and to determine without doubt that it’s actually UC that you have. If I’m not mistaken, the diagnosis of Colitis can mean many things. Like you, my UC came out of the blue. It took nearly a year to get it under control. I finally did with a round of steroids, and the Specific Carbohydrate Diet (SCD). Check out the website, Breaking the Vicious Cycle. There are also several very helpful SCD Facebook groups. I encourage you to check those out. Let me know if I can help you find a Dr in your area.

    Lisa

  3. John D. December 27, 2016 at 3:45 pm #

    Selene.. my first diagnosis was 15 yrs ago when I was 28. Im 42 when out if a sudden, A severe flare happened. 2 weeks before, I noticed a streak of blood in mynstoll and was talkkng to my gf that maybe I should go for a check up& while there, get my prostate checked ( in Xanada, they don’t usually start till you’re 50.. ANYWAYS)..The dr’s student from a teaching college that works for dr, did the rectum check.. said found nothing. B.S. I ended up week later bleeding huge buckets in my toilet. Once I was hospitalized was on iv with morphine for pain.. and are few steroids. Once I was stabalized.. I was one pantiloc 40.mg for the gas.. throat and rear end.. helps. & the regime of prednizone ( cheap drug been out for years)) my pharmacist ssid. Hospital had me on 1 pill but had proper dosage. My pharmacist had the tabs ,so mine was tapered b.c I would be weaned off it once down to1( thats what my gi said.but i spoke with family dr. And were stopping at 5 and maybswitchbto mezzavant 4 pills daily. Went to see my gi for a 2nd sigmoidascope. ( said itvwas good results. Not as black n red inside, more pinkish.. but told mevtonstick to a good diet. Nobred meats, lots of rice n mashed potatoes.. well.. you can goigle uc diets.. heck Adam, founder of UC has a book or pdf on foods to eat orva database on safe foods. Im sorry bout your financial situation, however.. talk to the lady about this gi shecsaid from n. Alabama. Maybe ge can help you OR.. go aak your hospital of a list of gi’s in your area. Do you have a family dr? How do you americans get your drugs dispenced???

    Anyhow.. I mention Pantiloc for gas google it
    Prednisone google this..
    Mezzavant ( Asacol family..Asacol I was on too when I was 28.)

    And something I may go idk.. not sure if I want to.. xalled Imuran. Its fir organ transplants snd Ibf/ UC/Chrohns ppl. Transplant patients?? Really???? And I hear that lowers your immunecsystem. Dontvwecwantvto get better?? Not get sicker?

    JohnDrynan

  4. Sue Walsh December 27, 2016 at 5:13 pm #

    You feel “bleak and hopeless” and “trapped & helpless” which is “sending my brain to places that I don’t want to consider”. I understand, given your description of your situation. You’ve now found a wonderful website full of people who have felt just like you have and have figured out how to live normal lives in which their medical situation doesn’t dominate their lives. You can too. Really! But first you have to believe that’s possible so you can show up and make it happen. If you give in to the despair and become a danger to yourself, that will never be a possibility for you, and will really mess up your son. If we were together, I’d ask you if you can promise not to hurt yourself. If you can’t, you need to go to a facility where you can be safe and get your balance back. There’s no crime or shame in admitting you are unsafe and need help. Many people have been there and come back to live normal lives as well. Sometimes life just becomes overwhelming and ending it seems like a good option. If that’s where you are, believe me when I tell you that option will not solve your problem and will keep you from having the life you deserve. So, before we continue, are you safe?

    If not, go to an emergency room and tell them that now. They will see that you find the appropriate help – I promise.

    If you can promise that you’re not a danger to yourself, you’re on the right road! My guess is that you got the “bum’s rush” out of the hospital because you are financially challenged and have bad insurance. They stabilized you and sent you packing. I’m not sure ‘colitis’ is even what you are experiencing. “I could feel that the food I was swallowing was not going into my stomach! It was just sitting at the bottom of my esophagus” does not sound like colitis.

    My advice is to copy and send your letter to Jini Patel Thompson at http://www.jinipatelthompson.com/#! You can see her on a YouTube video at https://youtu.be/FsIN8tSWjI8
    She’s an expert in GI disorders and I’ll bet she won’t think you have colitis either. She’ll suggest your next best step.

    If you do have colitis, 2 things you can do immediately are #1 = Make a shake with 4oz Aloe Vera juice (without preservatives if possible), 3 Tbsp tapioca flour and some flavored tea (I like ginger). Do the shake 2-3 times a day. DON’T EAT ANY WHEAT/GLUTEN PRODUCTS – none! No fried food! (The mucus makes me wonder if you have an allergy to wheat/gluten). #2 = Go to Whole Foods or your local health food store and ask for the best pro-biotics you can afford. They’ll be in the refrigerator case. You can find the aloe vera juice and tapioca flour there too.

    See what Jini recommends. You undoubtedly need a good gastroenterologist. Don’t waste your money going back to urgent care or the same hospital you went to before. In Alabama, the University of Alabama Hospital at Birmingham ranks well in GI disorders http://health.usnews.com/best-hospitals/area/al/university-of-alabama-hospital-at-birmingham-6530304/gastroenterology-and-gi-surgery. Huntsville Hospital comes in at #2 http://health.usnews.com/best-hospitals/area/al/huntsville-hospital-6530510/gastroenterology-and-gi-surgery. USNews ranks all US Hospials for GI treatment here: http://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery. If you say you can’t afford to go to Birmingham, let me suggest that you can’t not afford to go there. You need to see people who know about GI disorders. You’re not getting that where you live.

    I hope this helps. Let me know what you decide to do. Nothing is just going to ‘happen’. You have to make it happen. And if you do, you have the promise of a normal, happy life ahead of you. You have to take control and I know you can. Contact Jini and watch her YouTube video tonight. Tomorrow figure out how you’re going to get yourself to Birmingham (or Huntsville if that’s really not possible). You can do this!

  5. Stan Diamond December 28, 2016 at 6:34 pm #

    Has anyone here tried marijuana, or one of its by-products, for treating their UC?

    When I was first hospitalized in ’07 (and having no idea what was wrong with me), I told the admitting doctor at the ER that the only time over the previous month that I was not having symptoms was when I used marijuana. He explained that marijuana is a natural anti-inflammatory (which is probably why almost every culture in the world has used MJ medicinally), and that could be why I would get relief from my UC symptoms when I used MJ. Before this conversation, I used MJ recreationally, but I didn’t really believe in the power of medicinal marijuana (because I was ignorant, not because I was against it). So I was a skeptic, but it worked for me in spite of my skepticism.

    In my follow-up colonoscopy in 2010, my condition was described as “moderately severe”. My next colonoscopy in 2014 listed me as in remission. Of course, nothing is 100% as I’m having my first major flare-up since then. But I’ve made it 10 years without having an issue!

    I’m fortunate to live in Colorado and have access to cheap, high-grade MJ. While I’m not advocating MJ for anyone else, it is something I would research for myself. Also, consuming MJ orally (as opposed to smoking) could be more effective as combustion (smoking) doesn’t activate the majority of MJ’s compounds besides THC. Here in the stores, we have high CBD oils and edibles that are made exactly for that purpose.

    I just hope the rest of the states wake up and realize MJ is effective for treating GI disorders in some people. Let the patients and their doctors decide if it’s right for them, not some idiot politicians who have never experienced symptoms!

  6. Sabina Radovic December 29, 2016 at 3:21 pm #

    I can help, call me: 778-997-9533, Vancouver, Canada.

  7. Selene February 20, 2017 at 2:52 pm #

    Oh my gosh, you guys! I am overwhelmed at the love & support you guys have sent my way! Thank you everyone; it means so much to me. I felt so alone, isolated and dying. All of you deserve to know where I’ve been & what’s going on. Well, since that 1st post I’ve been hospitalized 3 times & diagnosed with “colitis” all 3 times. I was going into shock when I went to hospital the 1st time but the 2nd time my diagnosis included “acute kidney injury” due to the dehydration. My electrolytes were all messed up. Same deal with the 3rd admission. I keep telling them that they are sending me home & I am not well. They don’t care. Still haven’t been referred to a GI specialist. I can’t just go on my own b/c the insurance wouldn’t pay for the visit. I’m trying to get in to see a primary care MD (which is what I really need to coordinate my care). Just hangin’ on by my fingernails. Still no job–it wouldn’t have mattered b4 now b/c I’ve been too sick to do anything. So, here’s the crazy part of the story (no, it’s all crazy but this is a big factor). I’m a registered nurse. I have a clean record & never had problems. 20 yrs ago I was in love & married to a man who is an MD. He asked me to quit work so I could tend to our new family (kids, big house, etc.). Like an idiot, I did it. Now, all employers see is that 20 yr gap in work & I am passed over. It’s not as if I was just a lazy slob for all these years. Since the hubby (now ex–I got traded up for a woman 25 yrs his junior. You can guess how that went) didn’t want me working in the medical field & since I was losing my mind from boredom, I returned to college. I earned another undergrad degree (English & Creative Writing–I’ve written & published short stories) & I also did my Master’s work in Communication. The thing is, I really want to return to nursing b/c I feel like it’s something I lost due to my ex’s betrayal. I’m trying to heal internally as well as externally. You might say body, soul, mind and heart. I understand that my 1st post may have sounded as if I was suicidal & I deeply appreciate the person who confronted that right away. I am not interested in hurting myself in any way, shape or fashion. That sounds as if it would hurt & frankly, I’m not on speaking terms with things that hurt or cause suffering. I just want to get well and get a job & take care of my little family, including my pets & the best son a mother could ever have. I actually love life; I just don’t love IC–lol.
    Back to the IC issue: during the last hospital stay, the MD gave me a round of steroids which I think has helped some. I’m watching my diet like a hawk. Staying to low residue foods & my stomach dictates that I eat 4 or 5 small meals a day as opposed to the 3 I used to eat. Now a question because I believe you all on this list will shoot straight with me. What, if anything, should I expect from my primary care doc (if their office accepts me)? I know I need a referral to a GI doctor but is there anything the primary care doc can do to help me other than this? I know I have a complicated medical situation & I know that MD’s can usually only process problems in small chunks so, other than the referral, which problems would it be best to focus on at 1st while I’m establishing a new patient relationship with him?
    Thanks again to everyone who wrote me back. Between the hospitalizations and the fact that I lost ‘net service for a month (billing issues, naturally) I’ve been absent from the forum and the rest of the internet. I appreciate all the help and I plan to one day be able to pay forward the kindnesses you’ve all shown. Blessings to all of you for health, happiness and joy,
    Selene

  8. Lisa February 22, 2017 at 6:00 am #

    From my experience, the primary care doctors are fine to treat immediate issues but for long term treatment, you need that GI referral. For what is worth, my primary care physician has been more supportive of my complimentary therapy (diet) than the GI. So I think it’s good to have both. If you are in or near North Alabama, I highly recommend Dr. Dino Ferrante. You won’t find a kinder, sweeter GI doctor.

  9. Lisa February 22, 2017 at 6:01 am #

    Another idea…have you thought about being a school nurse?

  10. Philippa March 22, 2017 at 10:46 am #

    I think that you need to push hard on a primary care doc to see you so that you can get the GI referral asap. I think a prednisone rx as a band aid till you can get to a gi doc could be a good solution. I am flaring currently and my GI doc just prescribed me a three week schedule starting with 30 mg for a week, 20 for the next week and 10 for the last week unless symptoms are not getting better, then don’t taper. Your GP can prescribe that and it is very affordable.
    Stress is one of the worst things for this disease. When I have large stressors in my life I flare and then getting back under control is hard. Money issues are some of the worst stressors. You should definitely be applying for disability as soon as possible so that you can have money to live on while you find the care that works for you best. look into that immediately! Every stress you remove gives you a better chance of healing and heading towards remission.
    To get insurance to pay for the larger more expensive drugs you will have to have a colonoscopy to biopsy your colon and prove that you have a solid diagnosis. Insurers will balk if you do not have this. All of the big drugs have copay assistance on their websites, apply for them as soon as you get prescribed anything. Lialda, humira, apriso… they all have them.

    Things will get better! I am trying to change my diet to accommodate this and get my flare under control and it sounds like you are too! Drink tons of room temp water! And get that doctors appointment! Good luck as you feel around for what works for you…we all are looking for that combination that makes us feel better. I will keep you in my thoughts.

  11. Selene March 31, 2017 at 10:13 pm #

    Thank you Phillipa for the kind words and advice. I am still trying to get in with a Primary Care doc. Also, derailing us are the usual financial issues as well as a special once a year kind of hell called “land taxes.” We own our farm free and clear but must pay land taxes yearly & they are $400. Yeah. Tough. Thought I had that covered but, at the last possible minute, my mom decided she couldn’t help with it (long story, long, long story) & so it’s left us high and dry and dancing very fast to make up the money and the time. Fortunately, as I type this Friday has become Saturday & a buyer plans to take yet another of my handguns that I inherited from a dear family member off my hands. I regret having to sell all my nice things but I’ve grown accustomed to living indoors, bathing and eating several times a day! My latest episode with gut pain and diarrhea was last weekend. The pain is unimaginable…unless, of course, you’ve had UC and then it’s all too imaginable. I’d give it a 10+ on the pain scale &, as ashamed as I am to admit it, it occasionally makes me scream. What a strange life this one has become that I feel perfectly comfortable talking to people I’ve never met about my bowel habits! lol I would never call the folks here strangers though. We’re more like friends who just haven’t met yet. Anyhow, thank you so much, again, for your time and kind words. I’m forging ahead and can’t wait to get to the remission phase of my newest pain problems so I can support someone new the way you’ve all supported me. Blessings to all—

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