Ulcerative Colitis Tips


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Sick and Tired of Being Sick and Tired – Kelsey’s Story

recent picture of Kelsey!

recent picture of Kelsey!

Intro:

My name is Kelsey, and I am 26 years old. I’m from South Georgia (USA). I was officially diagnosed with UC in 2009, but I have been suffering with symptoms since 2000. I was diagnosed with UP in 2013.

Some more about Kelsey:

I enjoy my family time, my family is my world and I take special pride in taking care of all of them. Along with most other Georgians I enjoy hunting, fishing, and being outside when it’s not 100 degrees out.

Symptoms:

My current symptoms include bloody mucus, pain in my left side, gas and bloating, constipation, bloody diarrhea, fatigue, headaches, and a general irritability just because I don’t feel good.

I have been suffering with symptoms of UC since 2000. At first we thought it was certain foods or spices that were triggering my diarrhea attacks, but we could never narrow it down to which ones. My primary physician at that time treated me for everything from lactose intolerance to parasites, but in the end he decided I just had IBS and recommend that I carry an “Emergency” bag with me at all times and avoid stressful situations… obviously he had little experience with teenage girls, stressful situations were everyday! Like many of my other peers I was taking a prescription for my acne and I truly believe that this is what activated my UC, and it wasn’t too long after that I began taking this medicine that I began having symptoms.

As time went by I was still having my diarrheal attacks at random times, and it just became something that my family and I dealt with. Eating out and traveling we difficult at times, but my family was always understanding, and they knew when I said “I’ve got to go” that I really had to go and made it a top priority. Even my little brother would chip in and tell people that I had the “bubble guts” and would in the bathroom for a while… obviously he didn’t see any reason to be discreet!

My symptoms did not get worse until I entered college. There were times when I missed whole classes because I was stuck in the bathroom the whole time. I began to pass blood and we decided it was time to really get to the bottom of what was going on. Our physician at that time could not find anything wrong, but referred me to a general surgeon for a colonoscopy since Colon Cancer did run in my family. At the consult with the general surgeon I spilled the beans and told him my story. He said I didn’t need a colonoscopy and I needed to eat a high fiber diet, take fiber supplements, and drink lots of water. Needless to say this did not work and a year later I was back and in worse shape. This time he performed the colonoscopy and did biopsies which confirmed Ulcerative Colitis; he then referred me to my current GI doctor. My GI immediately put me on Asacol; which calmed everything for a while. I had a nasty flare up some time later; which we treated with Prednisone for sev eral weeks and then I went into a fantastic remission.

I went through a very stressful time in spring/summer of 2013; which caused me to go into a horrible flare up in July 2013. I have been in flare ever since. I had another colonoscopy in October 2013; in which we found out I had Ulcerative Proctitis as well. I was on and off Prednisone for 9 months, every time I would try to wean off the steroids my symptoms would start back up. My GI started me on 6mp; which put me in the hospital with Pancreatitis, so that line of medication was out of the equation. He then decided we needed to go the biologic route and prescribed Remicade. I had 5 infusions before my body began rejecting the Remicade; which lead us to begin Humira. I am currently on my 8th week of Humira, and to be honest I’ve seen only a slight improvement, I was really hoping to be feeling a lot better by this point.

I have recently found this website, and have been reading everyone’s stories and have realized my UC is nothing compared to most on here. I have decided to start the SCD diet, it is going to be extremely difficult for me, but I have to do it for myself so I can heal and to prevent further damage to my colon and rectum. I have been reading about LDN, I was wondering for those of you taking it were you taking other meds when you started it, and do you still have to take other meds along with it? I would love to be able to come off the Humira, I have little to no immune system and I don’t like the idea of injecting toxins into my body every other week.

I am at a point where I am sick of being sick, and I know my situation could be so much worse and I so thankful that it’s not, but I just want to feel good. I also suffer from sinusitis and migraines, so days where I have no tummy trouble and no headaches are few and far between. Any advice and recommendations are greatly appreciated and thank you in advance!!

Medications / Supplements:

Asacol
Levsin
6mp
Remicade
Currently taking:
Asacol HD 2 800 mg 3 times daily
Canasa suppository once at night
Humira every other week
Zyrtec (daily for sinusitis)
Immitrex (as needed for migraines)

written by Kelsey B

submitted in the colitis venting area




13 Responses to Sick and Tired of Being Sick and Tired – Kelsey’s Story

  1. June D
    June November 6, 2014 at 2:03 am #

    Hi Kelsey~
    I am so sorry to hear about your troubles, and I know exactly how you feel!
    I have fallen in love with this site because it really has been a comfort to know that there are others out there who can relate to what’s going on with me! And also, can offer some advice on things to do to help.
    I am coming up on my 3rd month of Humira, and like you, have not noticed much of a difference. My GI also has me on Azathioprine and Lialda, but what truly makes a difference is the Prednisone! Since we can’t all stay on the Pred, I am now facing surgery to have my colon removed. I have an appt. next month with a surgeon, and will of course know more about it then.
    The idea of surgery is so very frightening, but after reading the reviews and replies on here, it has helped convince me this is the right decision for me. I just want my life back!!
    I also suffer from anxiety/depression and was always taking Zoloft, until some suggested on here that it can cause diarrhea too. I am now taking Wellbutrin, and although I am unsure if it makes a difference with my UC (because of the Prednisone), I just wanted to suggest this to you if you have the same symptoms. Also, it’s a good reminder to check out the side effects of all meds you take…who wants to take a med that can cause diarrhea??? Duh! :)
    I wish you the best with the SCD diet, and everything else in your life!
    Hang in there…and cherish those precious and few moments when you have some relief!
    ~June

    • Kelsey B
      Kelsey November 10, 2014 at 8:29 am #

      Thanks for your comment June! I went to my GI for a follow up a couple of weeks ago, according to him it takes a little longer to see improvements with Humira in UC patients that it does in Chrons patients. I have noticed some improvement, just not as much as I was hoping for, but I haven’t started showing signs of rejecting the Humira and I haven’t gotten any worse; which is always good! I hope all goes well with your appointment and that you will feel more comfortable with the decision to have or not to have surgery. If you are on your last straw and it will improve your quality of life drasticaly then I say it is worth it!!

    • Judith K
      Judith Kupstis November 16, 2014 at 9:03 am #

      Hey June, Its Judith, I had my surgery on Nov 6, The Surgeon was happy about the surgery, He did suspect cancer and it was a five day wait for the pathology. There was a lot of pain, but also a lot a pain meds. The first 2 days were a blur. Once I was able to get up and move about a little things improved. I had my entire colon and rectum removed and a jpouch created inside. Surg was Thurs 5 hour, on Monday Doc came to tell me there was cancer but it did not get out of the colon. The walls were intact!! The cancer was gone with the rectum and the colon! One scary thing happened after receiving this life giving news, though. My very important antidepressant medication was passing right through to the ostomy bag whole!! For 7 days I was without my medication!! Not sure that this was only happing to that med either, could have been others, I was having severe withdrawal with halucinations so scary I still cant takj about it!! I pray this does not happens often but I have a feeling it does! Please discuss with your Doc any meds you take and how they will be absorbed in you body. Home now since Thursday and still some pain, medication management necessary but each day is a little better! Best of luck to you. Keep in touch. Judith

  2. april lavoie November 6, 2014 at 9:05 am #

    Hi kelsey. Welcome to the site and i hope things get better for you. I know exactly how you feel. I have struggled with this auto immune disease for 24 years now and im 35 now and been through it all. I am curremtly on Asacol 400 mg. And i get vedolizumab injections every 4 weeks. I have been on the shots for a year now and feel great. Mind u i have had 1 or 2 issues but quickly recovered. It has given my life back. Im a mother of 2 kids. This was very important for me to feel human again. Vedo works specifically on the gut and does not compromise your health in any way. It does not suppress your immune system at all. Its been great. Have not been sick all year. Knock on wood. Lol. But i know where your coming from. Ive been through it all. I grew antibodies to the remicade. Couldnt take it. Went on prednisone and because i had signs od cushions disease i had to stop that. Vedo saved me. So far so good. I also try to stick to a paleo diet. Less processed foods the better for me anyways. If you ever need to talk please do not hesitate to add me on facebook. Good luck. One day at a time.

    • Lynn November 6, 2014 at 1:08 pm #

      Yes Kelsey you are in the right place to get information and help for your UC. We are all here for one another. I have a question for April about the Vedolizumab. How long did it take to see any changes once you started the infusions and what were the 1 or 2 issues you had if you don’t mind me asking? So you are getting shots not a transfusion?

      Thanks,

      Kevin

    • Kelsey B
      Kelsey November 10, 2014 at 8:41 am #

      Hello April! It’s so great to have a place that I can refer to and people that I can relate to in regards to my disease. I have not heard of the type of injections that you are taking, but I really like that it doesn’t suppress the immune system. If the Humira does not work for me I will deff talk with my GI about the Vedo injections. I have been experimenting with different diets trying to figure out what works best for me… It’s a work in progress. I hope all continues to go well for you!!

  3. Bev November 6, 2014 at 4:14 pm #

    Hi Kelsey,

    Was it Accutane that you took for acne?

    I took that awful (should be illegal) drug four times in my 20s for acne and was diagnosed not long after with UC. I’ve always figured that that is how I ended up with UC.

    Just wondering if that was the drug that you took as well? I feel that drug is criminal and should not be on the market at all any more, yet it still is! There is case after case documented that Accutane can in fact CA– USE UC and there are even various class action lawsuits out there against said drug.

    Cheers

    • Kelsey B
      Kelsey November 10, 2014 at 9:10 am #

      Hi Bev! The name of the medication I took was Doxycycline, but it has also been linked to IBD. I don’t recall exactly how long I took it, maybe a couple of months, but it was one of the first things on our list when I started having problems and I stopped taking it completely and have not taken it since.

      • Bev November 10, 2014 at 9:16 am #

        I’ve never heard of that acne med…I think meds in general are just not good for our bodies. I’ll bet lots of prescription medications can cause and/or aggravate UC due to stripping the colon of good bacteria.

        Cheers :)

  4. Blair B. November 6, 2014 at 5:59 pm #

    Hi Kelsey! I also am from South Georgia and only 24 years old, and I LOVE everything out doors and traveling! This disease makes living the life I want to very difficult. I was diagnosed in 2011 while away at college. Lord knows this is an awful, awful disease that we have no control over! I’ve been on Lialda and prednisone on and off since my diagnosis. Prednisone is amazing but just like you I go into a flare once I come off. My doctor is currently wanting me to start biologics since I can’t stay on steroids forever and the Lialda just isn’t enough on its own! I’m so nervous about both the Remicade and Humira (the two my doc is currently debating on). But I will say what has helped for me personally is a high dose of probiotics and no dairy. I also limit my wheat in take. I noticed big difference when limiting those items. I have not tried the full SCD diet, but have heard great succes stories on it. That I will start fully here soon, I recently purchased a book all about it! I can totally relate to what your going through. I also have to remind myself each day that I don’t have it as bad as some and it could always be worse (but that doesn’t make it any easier!). Wish I could be of more help to you! But just know you aren’t the only one battling this! Best of luck to you! I really hope and pray that you can find something that works for you!

    • Kelsey B
      Kelsey November 10, 2014 at 9:46 am #

      Hey Blair! It seems as though we have a good bit in common! I prefer the Humira to the Remicade. The Humira is a much cleaner drug then the Remicade (you actually have to have the Remicade filtered during an infusion before it can enter your body). With the Humira I can give the injections to myself verses having to go to the infusion center and get a 3-4 hour infusion with the Remicade, and the Humira is sooo much cheaper!!! But the way my Doc explained it to me is, you have to try the Remicade first and if that doesn’t work then go to the Humira, because most insurance companies won’t approve the Humira unless you have already tried the Remicade. I think I am making slow progress with the Humira, and I am experimenting with diets to try and figure out what works best for me. I have been looking into taking probiotics, but there are so many different kinds and doses I really don’t know where to start. What works best for you? I hope that you and your GI can get a good treatment plan going, and it’ll be something that will work for you! If you have any questions about getting started on the Remicade or Humira I’ll sure be glad to help you if I can!!

      • Blair November 10, 2014 at 11:21 am #

        Thank you so much for the help Kelsey! I am currently taking VSL#3 probiotic. My GI doctor gave me a two month supply sample to see how it worked (since it is on the pricier side). It is a high potency probiotic, I take 4 capsules a day and really seems to help me. Mind you, I am also still on prednisone so it is hard to say which it really doing the helping. But since I have heard many success stories with probiotics I will continue to use them! I would definitely suggest them, I know when I am an remission if I go a long length of time without the probiotics I would almost immediately notice a different. I am really leaning towards the Humira, my doctor said the choice was mine. But of course I really have to clear it with my insurance company first. So we will see! Did you have any sort of reaction to the Humira or side effects? Thanks again for you help :)

        • Kelsey B
          Kelsey November 10, 2014 at 1:05 pm #

          So far I have not had any side effects or reactions to the Humira. I have noticed an increased amount of migraines since I have been taking it, but it is also that time of year when my sinuses really act up so I don’t really know if the Humira or my sinuses are to blame, hopefully the latter. When I was taking Remicade I would be overwhelmingly tired and moody for about the first week after my infusion, and eventually my body built up antibodies to the Remicade and I had a skin reaction. So far though, I haven’t had anything of that nature with the Humira. BUT I was on Remicade for about 6 months before my body began to reject it, so we are kind of playing a wait and see game with the Humira.

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