End of my Rope!

Sara W fullIntro:

Hey, I’m Sara! Single mother of a wonderful daughter in elementary school and work part time in dietary in a nursing home. I have been diagnosed with UC for at least 5 yrs and made my way through most all meds and currently using Remicade and prednisone and Apriso to “maintain”.

Some more about me:

I enjoy my job- working with elderly and food. Quite the combo I know, but both warm the heart! I love spending time with my family and friends. From canoeing and bon fires to dinners and movies I enjoy doing a little of it all. I also take great joy in helping others in small ways that show that I notice the small things.

Symptoms:

I am currently in the worst flare I’ve ever had. I’ve been able to “maintain” with minor hiccups until 11/2013 and got in for a Remicade treatment on 12/05/2013 and on 12/30/2013 was hospitalized for a two unit blood transfussion, IV steroids, and fluids and was out late the next day. I am now scheduled for another Remicade treatment 01/13/2014 to see if that will help with the major swelling thats in my midsection, muscles, and moves through out my head. If this Remicade doesn’t work my Dr. said she would then hospitalize me and do IV steroids. I currently am eating hydrocodone every four hours to maintain. I am so crampy and pass blood and clots with my “5-9 in the middle of the night” bathroom trips. This does not include the multipule trips to the bathroom through out the day but the worst does seem to be between 1am and 6 am.

My Story:

Right now UC has sucked the life out of me. I have not worked for over a week and will not be back to work for another week. I can not afford any of this which adds stress which we all know we should avoid stress when in a flare… :/ I am really looking for answers to questions like: Should I invest in Remicade or IV steroids at this point to get through this flare? Why has this flare lasted 3 months?!!? Would I be better off removing my colon? My Dr. is keeping tabs on me this week and doing Cdiff tests and blood work and such. I just wish things wouldn’t have gotten so out of controll almost. I can not help but feel like this could have been headed off earlier.

My family has been very supportive of me through this flare, but I see the toll its taking on my daughter and I am really at the end of my rope. My mother is great right now with understanding I need rest to let my body “try” to heal. I can see the concern on her though since she’s watched me drop 30 lbs over the last 2.5 months. I have a brother that is getting married in March and I need to be healthy and able to help out like he’s planning on me being able to. My sisters suport me in every way they can and my dad does too. I couldn’t ask for a better family!

I can not have another flare like this. I just want thoughts and feed back on anything. :) Really looking for information and like knowing I am not alone. I feel like I am drifting in a rocky ocean on a rotting piece of drift wood. I

written by Sara W

submitted in the colitis venting area

14 Responses to “End of my Rope!”

  1. kim brittsJanuary 18, 2014 at 10:07 am #

    My goodness! No, you are definitely not alone! I read your story, in my opinion I would go for the IV steroids at this point. Just speaking from experience! Until I started Humira I was in the hospital at least once a month from colitis. I didn’t think it would ever end. Not to mention the humiliating accidents in public! I had no life whatsoever! Tried all kinds of meds with no relief. Changed my diet as well. I was on steroids for almost a year. Then the Humira kicked in thank God! I was at the end of my rope as well. Don’t give up!

  2. Kyle
    KyleJanuary 18, 2014 at 10:13 am #

    Sara – Wow! I am so sorry that you are dealing with. I know a lot of people on this web-site can relate cause we have all been in that place of exhaustion. I spent 2 months out of work this fall and know the stress that it can bring not being able to go to work and not knowing when the light from the tunnel is going to appear. # 1 thing know this; you are not alone! There are a ton of people like us who have dealt with this and overcome; it will improve for you, the flare will pass, that hard part is to know when, right? I wish there was some magic bullet we could take and boom be back on our feet, but research just hasn’t done it yet. What works for one person may not work for the other!

    As far as Remicade goes that is a call you are going to have to decide for yourself. When I was first diagnosed I went into such an intense flare it laid me in a hospital bed for a month : ( They put me on Remicade and it kept things in check for a little over a half of a year and then out of nowhere I had an allergic reaction while getting the med. Your body can form anti-bodies against the medicine and actually start fighting against it. But that is not everyone, I have a good friend who has Crohn’s, he’s been on Remicade for 2 years and it’s working great for him. What works for one might not work for the other.

    I currently follow the SCD. There is a lot of great information out there on it, unfortunately you wont get much information from your GI on it. The only med that has worked at all for my IBD is prednisone and I am trying to stay far away from long-term prednisone use. You will get there, don’t let UC have control of who you are, it is a disease you have but you are not defined by it! I know I am not giving you a ton of answers but I really hope to encourage you that it will get better, things will improve, you will get there!

    You will be in my prayers!

    Kyle

  3. AdamJanuary 18, 2014 at 11:36 am #

    Hi Sara,

    Hang in there. So happy you have such a supportive family to be there for you. (Not everyone has that, so that is a great thing which is a super valuable treasure:)

    As for me, if I was you, I’d take a look at your diet. If you have not yet tried changing your diet to help with your UC, that is a good thing.

    Take a look at what you eat on a regular basis. If you find that you drink lots of sugar things, eat lots of breads, grains, and dairy. Well, that is all stuff I would stay the heck away from. Diet can help, but at the same time, it can hurt us bigtime if we don’t eat foods that are easy to digest properly.

    Here’s a link to some foods I ate to get out of a flare up.

    http://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

    best,

    Adam

  4. ShirleyJanuary 18, 2014 at 3:19 pm #

    Ir’s a long rope, but it will join up . Keep with it and good luck.

  5. PeterNZJanuary 18, 2014 at 3:51 pm #

    Hang in there auntie – it’ll come right!

  6. SherJanuary 18, 2014 at 4:39 pm #

    Sara,

    I can relate to the “end of my rope!” I as well had a bad flare starting in Sept, just starting to get my mojo back. The only thing I can say is diet is key. For years of yo yo ing different medications I changed my diet… but, during a flare I have no energy to make smoothies or boil chicken stock or whatever people suggest I’m just too dang tired to do all that after being up all night. So I basically eat bananas, rice, applesauce with cinnamon… No dairy, sugar or bread. I drink tea and take loooonng baths! I have been drinking apple cider vinegar several times a day (a few teaspoons) for the last few weeks and I feel so great. I’m not sure if it what is contributing or if my flare is just naturally ending. I did see my family dr when this flare came on because it was sooo strong… I hate taking prednisone so my dr prescribed a steroid called proctofoam, it is administered the “other” way. I felt way better after, without all the crazy pred side effects… I even question after 12 years why nobody mentioned that before. My dr explained to me when your in such a flare your body isn’t absorbing any nutrients, including my meds, including my vitamins and supplements. If you haven’t looked into a “suppository” or “enema” med, you may want to… I was against it before, but now I’ll do whatever it takes. I was only on it for 2 weeks. You will get through this! I lost 20 lbs in 2 months and gained most of it back now that my body is “absorbing” again, take care… Sher

  7. kJanuary 18, 2014 at 6:46 pm #

    I was at the end of my rope also (and in what today would be called a major flare) when I was finally correctly diagnosed with uc and hospitalized.

    Three days later my colon perforated and they took it out that afternoon – 39 years ago today. I have an ileostomy. There have been a few challenges over the last 39 years, but I still consider the surgery a miracle.

    Things are so different now; I wish the best for you. We can all hope that a cure is soon to be discovered.

  8. Sara W
    SaraJanuary 19, 2014 at 12:15 pm #

    An update… So I went ahead with the Remicade and boy oh boy did that wipe me out!! For two days slept and cried and I have had IV fluids and steroids a few times and an Endoscopy (which shows inflamation every where so there were biopsies takes). I am waiting for results on biopsies, but I have stopped passing blood and less bathroom runs! :) I feel better enough to start the natural treatments I’ve been looking into… liquid aloe and liquid chlorophyll to help heal the colon and boswellia serrate/curcumin to replace my mesalamine in a natural form.

    As for diet, I do know what does and does not work for me. I am a firm believer that no one diet is the perfect diet for everyone. I believe in making healthy choices (not that I’ve always done that but I strive to do more/better all the time).

    Well, heres to healing and hanging on :) Thank you for all the comments and support!

    Sara

  9. SteveJanuary 20, 2014 at 8:05 am #

    My wife has been at the end of her rope for a long time. So far the SCD diet and acupuncture seem to be the most helpful. Prednisone was a nightmare. Best wishes to you
    Steve

  10. jenniferJanuary 20, 2014 at 8:14 pm #

    Hey Sara, sorry to hear your trials with UC. A friend of mine has a daughter that went through UC. Heavy bleeding, on steroids, and lost a lot of weight. In the bathroom all day. She started using a health product and is now pretty much cured. If you are interested, you can email me. jenniferbraconnier@shaw.ca I would be more than happy to send you all the information on how she overcame this disease.
    Jen

    • Tara B
      TaraJanuary 22, 2014 at 4:20 pm #

      Jennifer that is great news! Please share :)

  11. Tara B
    TaraJanuary 22, 2014 at 4:18 pm #

    Sara, I hope you are still getting better everyday! Have you tried taking probiotics? I keep seeing on this website that alot of people take them and they seem to help. I just started a few days ago, and I dont see any blood and only 1 bowel movement a day. I have been researching the scdiet and trying to prepare myself with as much knowledge of it before I start. I am a newbie to the uc world. Best of luck to you!

  12. Sara W
    SaraJanuary 23, 2014 at 12:01 pm #

    Tara and others,

    I am happy to say that I continue to improve! No more blood and colonic pain at a minimum! I’ve been taking Boswellia serrate (300mg) two times a day and Boswellia/curcumin combo pill one time a day alone with a smoothy for breakfast that includes 2 oz. liquid aloe vera and 1 tsp liquid chlorophyll. All of which are herbal and nutrient supplements that help heal ulcerative colitis. I would direct EVERYONE to check this website and article out!! I will be adding more and making other changes as I continue to heal. easyhealthoptions.com Natural Ways To Reverse Ulcerative Colitis by Dr. Michael Cutler (May 13, 2013)

  13. Bryan C
    BryanJanuary 23, 2014 at 9:24 pm #

    Hi Sarah I have had colitis for 15 years. I feel your pain I first got diagnosed when I was 20 years old it pretty much robbed me of my young life I couldn’t do things with my friends go out and have a good time cause I was always scared of having and accident in public or having to be near a bathroom or searching for one I spent most of my life like that. I been on medicine out there and none worked the only one med that did give me some relief was prednisone and I couldn’t get off it and I never went into remission not once. I been in and out the hospital for 15 years. After years and years of being sick I decided to have the surgery which I was against but after of all the years of meds and hospital stays and pain I had enough and told my doc I was ready. Finally had my colon takin out and have the bag. It was the best thing I ever done wish I would of done it 15 years ago. I can eat anything and don’t have to take ANY meds. The good thing is im getting it reversed its a 3 stage surgery. I had my second one new years eve had my jpouch created I been having some post op problems but im not going through what I was before I still have the bag for another 2 months then I have the take down where I wont need the bag anymore and hopefully I will live a half way normal life again. Id recommend it for anyone that cant get into remission or meds don’t work anymore or your just sick of suffering unfortually its the only cure but you will know when you need it done. If you have any questions you can shoot me a email brcook2323@yahoo.com
    STAY STRONG!

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