Ulcerative Colitis Tips


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New to Colitis – My Mind Can’t Stop Spinning in What If’s

ulcerative colitis patient Paula

a picture of Paula

Introduction:
My name is Paula. I am the mother of two beautiful children. I live in Virginia. I am 35 years old. I am currently working on my Wellness Practitioner degree focusing on nutrition. My husband and I own a mosaic tile art business.

New to Ulcerative Colitis:

I have always turned to nutritional supplements, herbs, and healthy food in times of healing. So when I was diagnosed with UC, you can imagine what I must of felt with all these pharmaceutical pills I had to take. I was diagnosed with IBS about a year ago. At the time, the gastroentrologist said that I may have some slight inflammation in my transverse colon but he wasn’t sure if this was from the laxative I had to drink to prep for the colonoscopy.

I was under some major stress last spring. I seriously think I may of had a slight mental breakdown. So I wonder if this caused a flare up?? I am new to UC, so I am really not sure.

I started to have bloody stools that just got worse.

It got to the point where I was rushing my family out of the bathroom so I could get in and go. The first week in December 2011, I started to develp naseau along with a fever. I went to my family doctor and she said it was my IBS and just take ImmodiumD. Later on that evening after I left the doctors office, my fever shot up to 106.

It sucked, because no one really believed I was sick.

I finally said to just call an ambulance if no one could give me a ride. So people took me seriously.

I went to the hospital and next thing I know I am taking a poop in front of all sorts of people on my own little toilet which I would be using for the next week in the hospital. They gave me two IVs in each hand and sent me in for a Cat scan for my stomach and a chest X-ray. I was really scared. I kept asking the doctors if I would be ok and no one would really comfort me. They would just say “Well at least we got the antibiotics going in you system now”.

It was the first time I have been sick

and not had reassurance that I was going to be ok.

They did stool samples and said they tested me for tons and tons of different things, but couldn’t figure it out. The gastroentrologist came in the next day and said my stomach was too inflamed for a colonoscopy so I had to wait. They suspected at this point I may have colitis. Everything was a big blur though. They were pumping me full of steroids and giving me morphine. At one point I woke up with some nurse yelling at me. I was scared because I didn’t know who she was or why I was there. She said she was going to get me evaluated and I begged for her to call every neurologist in because I was very scared. She ended up getting in trouble for scaring me, apologized and was told to leave her shift. It took me a few minutes, but I was able to remember why I was there. That was so terrifying for me to not know where I was. The doctors said it was the steroids and other meds and that there was no need for concern. I am still shaken up by that though.

My potassium levels were dropping extremely low, so I was given potassium. Then I needed a blood transfusion. I was put in ICU. Just writing this sends tears to my eyes because I was really afraid for my life.

After a really rough night, I woke up and had my colonoscopy. The gastroentologist I had said some really pervy things about me. He didn’t know I wasn’t sedated. The ansteologist (sp?) said Dr. she is not sedated and is fully awake. Next thing I know I can see my bottom on this big screen and I looked at the anastealogist and begged her to put me under because I did not want to see or hear what was going on during the colonoscopy. I was diagnosed with ulcerative colitis. I have pancolitis which if you don’t already know means affects the whole colon instead of just the left side.

After the blood transfusion, iron, and potassium, I started to feel a little better. After a blurry week at the hospital, the gastroenterologist came in very early in the morning and told me I needed to go home. Kinda creepy. I had another doctor there that was caring for me who I really liked. She came in a released me after my week long stay.

So I have been home since Dec. 9th 2011. I decided to meet with a Naturopathic Doctor to try and find a way to heal my colitis without all of the prescription meds. She is very confident that I will be able to come off of the meds and just use nutritional supplements, healthy diet, and relaxation techniques. It has been a couple weeks since I have seen her and I have been feeling better.

However, I just finished my prednisone. I was tapered off slowly by my doctors. They want me to go on Remicade in the next 4 weeks or so. Now that I am off of my prednisone, I am having a fever and my stools are not formed. I am having a lot of cramping and back pain.

I am really worried.

I do not want to take Remicade!!!!

I am also switching from the pervy gastroenterologist

to a new one,

so I am not sure what they are going to suggest.

I don’t really want to get out of bed and I have only left the house maybe 3 times since I got home from the hospital. My husband is becoming irritated with me, because he is overwhelmed at all of the new responsibilities he has taken on.

I am scared about so many things. About the complications that come with UC. Colon Cancer scares me. And I am sorry for bringing that up, because I don’t want to upset any of you dealing with this. I am just new to this and don’t really understand UC completely.

Being a Natrual Health Care Practitioner, I am really upset about the possibility of being on meds for life. I am frustrated because I live about an hour outside of the city and there are certain foods I need I just can’t find here.

My mind can’t stop spinning in what if’s.

I am grateful that it is me that has this and not a loved one. I would be worried sick about them more so than myself. I think my main worry at this point is lack of knowledge about what UC is all about. I have just been one to avoid Dr’s and take natural medicine for so long. Now my life seems full of Dr. appointments and calls to the ER to make sure I am ok.

I am venting. I am doing my best not to feel sorry for myself. There could be so many other things that are way worse than this I could be dealing with. I am grateful for my life. I feel blessed for my beautiful family! I am just scared and a little pissed right now. So please forgive me if I come across as negative. I just had to get it out and I thought this would be the right place to do it.
Thanks for listening!! I am hoping this website will help me to find a little inner peace.




10 Responses to New to Colitis – My Mind Can’t Stop Spinning in What If’s

  1. nanda January 2, 2012 at 8:12 am #

    hi paula,

    Please dont be scared, u have come to the right place, we are all in similar situations. i am 20 years old and i have had colitis for 3 years. i have been in remission for 2 years now and i take no medication, i just control my diet and use ayurvedic medicine to control my UC. maybe you should check it out it helped me so much. There are things that you can do like taking tapioca flour mixed in warm water which ALOT of people find helps them into quick remission.
    Another thing i have tried is taking Ground Cinnamon in some warm water first thing every morning, this will help bring your inflammation down.

    If you want to ask any questions please don’t hesistate to ask. my email is nandap12@hotmail.com or you can add me on facebook using the same email address.

    Hope you feel better soon and i know exactly how you feel being stuck at home not being able to go out, its very depressing but you will get through it dont worry

    Nanda xx

    • Paula
      Paula January 3, 2012 at 7:56 pm #

      Hi Nanda,
      Thank you so much for your kind response. This website has given me such great support. I am very intersted in Ayurvedic medicine. I once had a pediatritian for my children who said he was going back to India to study Ayurvedic medicine. He said there wasn’t talk of disease, only health.

      Could you give me more information on how much tapioca to use? Also, does it matter how much cinnamon that I use in my water?

      I really appreciate you sharing with me how you understand. Hopefully I will feel better soon enough to get out of the house. I tried to find you on facebook, but couldn’t. I entered the email address you gave me but for some reason it didn’t work. I would love to keep in touch with you!
      Paula xx

  2. Matt January 2, 2012 at 4:38 pm #

    Hey there. I have had UC since i was a kid, diagnosed at 15 years old, you can only imagine how much fun school can be while dealing with this illness! haha….At any rate…I want to share with you some of my life up until now..
    Yes UC sucks, do i wish it wasn;t me who got caught up with it? of course….but…it hasn’t been that bad..really
    I have had periods off and on in life where i had such bad flair ups i couldnt leave the couch for almost 2 months, constant bathroom issues, fear, etc etc….i have also been healthy enough to have played live music since i was 17, booked my own tours around the usa playing music in coffee shops, bars, houses, etc 12 times so far, I have released 6 albums of original music on my own…i have lived in new york city, busked for change to pay rent as i couch surfed…stil managed to get my meds and take them on time…i have done a lot, i am grateful…i also look better than 75 percent of people i went to high school with since i havn’t been able to spend my 20s drinking beer every night…(and i still get to have a drink and party once in a while when im feeling good (: ….
    I have been on many meds, never had remicade….i was close though! They were about to give it to me…then i went to a new doctor…she has me on azathioprine, lialda, and when i need them rowasa enemas…( they reaally have helped me) i have not had a flair up in almost 2 and a half years, a small one a year ago, itdidnt get out of control, they threw me on prednisone for a month and it cleared right up!. look into the benefits of marijuana….i have heard stories about nicotine and smoking and how it helps UC…(i dont endorse it, but invvestigate and look for yourself) what else…hmmm…all in all these new meds i am on have done the trick, and i have had many bad flair ups all through my early 20s…bad ones….and now im ok…its still got me, we are buds for life unfortunatly…but it is being chill…and i thank it for that…you will be ok…yes there can be varying degrees of the illness i believe, but stay calm, try and relaxe, and STAY UNSTRESSED as much as possible…also try acupuncture…..that is really helpful as well…i hope i helped ya out a bit…it sucks, i know, im the last person to not be negative about it. but when i stop and think, it hasnt been the worst life….you will be ok (:
    and think of this….everyone is at risk of colan cancer, its life, we are at higher risk, so we get checked regularly , the rest of the world does not….so, it kind of evens out, they check it enough, they will catch it in time, and everything will be ok! people who never have reason to check it, it can sneak up on them and then its got them and its too late….dont fear the reaper! you got a jump on him if you take care of yourself! rock on and good luck to you!
    if you have any questions, feel free to ask !

    • Paula
      Paula January 3, 2012 at 8:06 pm #

      Hi Matt,
      Thanks for responding to me :) It must of been tough to have UC for so long, at such a young age, and through high school. I am happy to hear that your life has turned out to be great though. I was a singer for a few bands before I had my two children. I have been really interested in getting back into the music scene again. I feel it will be a good outlet for me to express the negative feelings I am feeling over UC. I think it is awesome that you have had such success with your music career. Music is so healing for me. I have heard of the nicotene for UC, but never cannabis. I can see cannabis would help with the nauseau, cramping, and appetite. I live in a state where the laws suck though. I am also not big into smoking, but edibles could be an option. Maybe one day I can move to a state where it is legal. Thanks for the reassurance I will be ok, it brought a smile to my face :) I just need to relax more. I think you rock!! Thanks again for you reply!!
      Paula

  3. Bev January 3, 2012 at 7:46 am #

    Hi Paula,

    I am so sorry to ‘welcome’ yet another UC sufferer. I understand all about sometimes feeling sorry for yourself. Believe me, I’ve been there. Sometimes, I still go there. I have had UC for 13 years, and it is now pancolitis as well. It’s normal to feel everything that you are feeling.

    I always try to put myself in my husband’s shoes. I know he loves me, but I always feel that it is asking alot for him to have to put up with my disease, too. If it were him with the disease, I would still love him, but I guess it’s difficult for a spouse to accept at first. Not only is your life changed, but the spouse’s will be as well. It’s just not fair for anybody, right? It just takes awhile to accept that this disease is not going anywhere, and is here to stay. At least, until there is hopefully a cure, or some really good effective natural medication available!

    Anyway, kepp on going. This journey isn’t exactly a fun one, but hopefully, it will be a short one in all of our lives. I hope, every day, that a cure is going to be found, and we can all live happily and normally again!!

    All my best to you and your family,
    Bev

    • Paula
      Paula January 3, 2012 at 8:14 pm #

      Hi Bev,
      I appreciate your response. I am trying my best not to feel sorry for myself. I am trying so hard to try to think of the positive reasons that I have colitis. I know that sounds silly, but I always had my doctors telling me to loose weight or I could get diabetes. So, now I have lost the weight. I am seeing a Naturapathic Dr. to help me with UC and I am on a diet that will keep my weight down.

      I am glad you gave me your perspective of how my husband may feels. To be honest, I would be going crazy if I was trying to take care of him and he was sick. I can see he feels guilty that he can’t make me all better and then it turns into frustration. I also pray for a cure!! Thanks so much for your support.
      Paula :))

  4. Sabina January 3, 2012 at 8:42 am #

    Dear Paula,
    I have mild UC from May 2010. Just like you I bealiv in alternative medicine.I use to teach Energy Yoga people with mental illnesses.Right now I am in process of opening healing studio.I am sertifide energy healing practitioner.I bealiv that Energy healing can help you. If you can not find Energy healer close to your home you can buy very simple to understand and apllay energy healing book ( Pranic Healing from Choa Kok Sui ) and your husband can do simple energy healing techniques on you,or you can do it yourself.All the time sweeping my body with my own hands help me to release pain from my body.When my husband is available he is doing energy healing on me and halp me big deal.If you have any concern or questions you can conctact me at , eneryg_yoga@ yahoo.ca ,or we can talk on phone.Love Sabina.

    • Paula
      Paula January 3, 2012 at 8:21 pm #

      Hi Sabina,
      I am happy to meet someone else that into alternative medicine. I also honor you for your work with people that have mental illnesses. That is such a beautiful thing for you to do.. I have never really heard a lot about energy healing yoga. I am becoming a Wellness Practitoner right now. My main focus is Holistic Nutrition, but I am required to take classes in hypnotherapy. There are a lot of classes at my school that deal with energy healing such as Reiki.

      I am going to see if I can find the book that you recommended. There is not a lot of alternative medicine or energy healing where I live. At one time I worked at a center that had healing touch and acupuncture, but they closed down. Thanks so much for replying to me. I am so glad for our connection. Let’s keep in touch.
      Love,
      Paula

  5. Sophie January 6, 2012 at 6:04 am #

    Hey Paula,

    Great story but also sad at the same time. I can relate to your story and it was only until I was diagnosed that people would take me seriously. I was diagnosed April 2011 and haven’t achieved remission yet but here’s hoping! Maybe you could tell me some helpful herbs… I love the fact that you are trying herbal remedies because Prednisolone (UK again haha) isn’t the best thing to have if i’m totally honest.

    If you want to chat then you can probably find me on the IHaveUC facebook page… I post and reply a lot!

    Get well soon,
    Sophie xxx

  6. Scott January 7, 2012 at 6:41 pm #

    Paula,

    For those of us who have spent time in the hospital it is scary and will make your head swim for a while.Do not try to absorb all the information at once, it will take time to know what will work for you and to come to grips with this awful disease.I spent 47 days in the hospital I was lucky enough to cdiff with the colitis.I was very scared after that to come home. There was not a nurse that I could push a button for at home. There are alot of natural things to try but you will have to try and see what works for you.I lost over 60 lbs in the hospital and January 12th will be my 2 years that I have been home and just got back to the 50 lbs of the 60+ I lost. It will take time and there will be bad and good days then in about 6 months the good days will be more than the bad,the body is amazing and will heal given time and nutrients. Look in to chia seeds if you can eat fiber, not everyone can.Remember what works for some people will not work for you, you need to find what your body will tolerate. I too hate drugs and tried alot of naturals before i found the diet and routine that works for me.please try to stay calm things will work out. I was told that sometimes it is 3 steps forward and 4 back. That will subside. For a while I ate the same thing every day for 2 months yes the same thing everyday and the trips to the bathroom would chang along with the bms.Hang in there I have been in remission for about 15 months now. There IS LIFE with UC.

    Scott

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