Ulcerative Colitis Tips


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Amanda’s Colitis Questions

Introduction:

Hi I’m Amanda. I’m a 22 year old college senior and was diagnosed with severe ulcerative proctitis 2 months ago. I was given this diagnosis after a colonoscopy and a biopsy from different spots of my large intestine. I’m sure my symptoms are nothing in comparison to someone with severe ulcerative colitis, but I have to say this disease was taking control of my life for a while and there are still many times where I feel like that today. I have had a TERRIBLE experience with my doctors and have felt like they weren’t there for me. I feel very alone in this situation and have no idea what steps to take to get healthy. That’s why I’m here.

Some more about me:

I’m currently a broke social work student who works and goes to school full-time. My stress levels are very high and I worry it could be making my ulcerative proctitis symptoms worse.

Symptoms:

Before going on medications I would have EXTREME emergency urges to have a bowel movement. These urges would force me to literally run to the bathroom or drive at very high speeds to get home and into a bathroom. There were also occasions where I would have accidents and also wake up during the night with an urgent need to have a bowel movement. At this time I am always very gassy and will have several bowel movements in a day. I will almost always have stomach cramps after eating and sometimes have blood in my stool.

My Story:

I am really starting at the beginning with this whole thing so any information I gain will help me. Here are a few questions….

  • What is a proper diet for someone with this illness? There seem to be a lot of miracle diets out there but I am confused figuring out where to begin.
  • What foods should I definitely stay away from? Will I ever be able to drink coffee or alcohol again?
  • How do you explain your illness to new people that come into your life?
  • How has this illness changed your life?
  • Is there any hope for a better future?
  • Have you been able to find a good doctor? The doctors I have seen so far seem to have very little time for me and will walk out of their office before I am able to ask questions.
  • Did you ever feel alone in fighting your illness? Right now I am the only person I know with ulcerative proctitis, colitis, or crohn’s. I hadn’t even heard of the illness until I started experiencing symptoms.
  • Is it uncomfortable for you to talk about with people? It has been really hard for me to be around people when I am experiencing pain. When people ask me if I’m alright it is very hard to tell them there is something wrong with my colon. It is always taboo to talk about feces and the colon. I always try to not make people uncomfortable. However, I think I would feel a little better if I were able to talk about this openly. Is there anyone else who understands what I mean?
  • Do you tell your employer about your UC? As someone who is about the enter the professional working world this is a growing concern of mine.
  • Has having UC ever kept someone from being hired?

Medications:

Canasa- This was the first medication I was put on. It wasn’t fun inserting something into my rectum every night but it worked wonders for me at first. However, it eventually stopped working after the first month and many of my original symptoms came back.
Apriso- I currently take 3 apriso at .375gm per day. This has helped me significantly but symptoms will come and go. I will have blood in my stool on occasion and will sometimes have painful and intense urges to have a bowel movement.

written by Amanda

submitted in the colitis venting area




6 Responses to Amanda’s Colitis Questions

  1. J April 27, 2013 at 8:25 am #

    Hi Amanda,

    Regarding your questions about working when you have colitis, I would give you a few suggestions: 1) Look at the Americans With Disabilities Act. If you don’t know about it, it’s a federal law designed to prevent discrimination in hiring against people with all types of disabilities. Basically, the ADA says that you cannot lose your job (and cannot be denied being hired, I think) because of a disability if you are able to do your job with the help of reasonable accommodations. The colitis you have may or may not qualify as a “disability” under the ADA and federal guidelines, though. 2) I would meet with your college’s special needs/special services coordinators and talk with them about the Americans With Disabilities Act and about your concerns about working with colitis if you feel comfortable talking with them about it. Those special needs/special services people at colleges are there to help students who have disabilities or conditions (like colitis) to perform better and have a better college experience despite the problems caused by the disability, medical condition, etc. that they have. 3) I might also talk to your college’s career services director about your concerns about work if you feel comfortable doing that. They also may be able to answer some of your questions.

    Best wishes to you and hope that you start feeling better soon.

  2. Tara April 27, 2013 at 9:04 am #

    Amanda,

    Everything you said rings a bell with me. I was 20 years old and in college when I was diagnosed. I am now almost 30. College was hard for me because if it. I wouldn’t go out very much, skip class, or if I did go to class I would have anxiety about having to run out. To answer some of your questions, I would definitely find a doctor you are comfortable talking to. It is very important to have a good relationship with them so that you can get proper help. I don’t follow any kind of diet and drink coffee, sofa, alcohol, but when I have a flair, sometime I have to cut caffeine out until I am better. I used to be shy about talking about my colitis with others, but have found that letting some close co-workers know about it helps them understand me better. Lucky for me my dad has colitis, so my family understands and my husband’s family is familiar with it, so they also understand and all are supportive. I would say to tell people when necessary. If I have to explain it to somebody I’m not familiar with, I just say I get ulcers in my intestines (sounds better than colon), so that causes me get stomach pain/nausea. Hope this helps a little. If you haven’t already, find support groups online or in your community.

  3. KimberlyHI
    Kimberly April 27, 2013 at 10:58 am #

    Amanda,

    I was also about 22 when I was first diagnosed and am 35 now. Regarding your diet questions…some foods are ok for one person with UC but not others, for example some can do a bland rice diet when they are flaring but others cannot eat rice at all! Many people have success eating using the SCD which completely eliminates all rice, breads, pasta, most dairy, and all sugar. So basically what you have to do (which this is hard and takes a lot of time) is figure out what foods irritate you. A lot of people keep a food log to figure this out but this is hard for someone who has a busy life! Many people have issues eating dairy, chocolate, alcohol, coffee, sodas, and definately processed food and fast foods are bad for us UCers. Many people try a diet like SCD and find is helps a lot so they stick to it. There is a lot of info on this site and on teh web about the SCD.

    Doctors, I have had good ones and bad ones! Having a good one makes a huge difference so if you can look around. Try to find one who is understanding and listens to you, and is open to your concerns, not just pushing meds in your face.
    Working with this disease-I never told anyone I had the disease at the time of being hired. One time I had just started a job and 3 weeks into it I got really sick. I had to miss 3 weeks of work which is hard when you just started! I was able to provide my boss with paperwork from the doctors and luckily she was understanding and allowed me to continue working there.
    It is very hard discussing this disease with others. I have been married 13 years and still find it embaressing telling my husband what is going on with me. And while it is helpful talking to him he doesn’t really understand like other UCers would which is why this site is very helpful. I know where I live there are monthly meetings held by the crohns and colitis foundation, you can meet other UCers and they have doctors there on site you can talk to. You can look online to see if they offer that in your area.
    Lastly, UC has definately changed my life and I have definately felt alone many times. I don’t know anyone with UC either. My life is affected by UC in that I always know where a bathroom is! And I have to hold back on certain things, like when I am flaring I can’t do much, I try to stay healthy and in shape but during a flare I can’t exercise and don’t even want to leave the house for fear I will be away from my bathroom. The only thing I can really do is try as hard as possible to stay in remission, I have had points in my life where I was in remission for years at a time.
    I have always achieved remission using medications, I have recently had to switch to stronger meds. I was on asacol and canasa for many years to maintain remission but after I kept getting flares I had to switch and ended up on a drug called remicade, one of the stronger drugs. I don’t like the drugs but I do like not being sick! Good luck and hope you feel better soon!

  4. Caroline
    Caroline April 28, 2013 at 4:54 am #

    Hi Amanda – sorry to hear of your diagnosis. I was just diagnosed in January after a few months of awfulness – things will definitely get better! Everyone has to figure out what works for them – it’s different for everyone, it seems. I will share what I know so far and what has worked for me – this site is a great resource.

    As far as diet goes, that has made a huge improvement for me. Yes, it’s hard sometimes but the rewards have been well worth it for me. I started on the Paleo Autoimmune protocol – no grains, no dairy, no sugar, no processed foods, nuts/seeds, nightshades, alcohol or caffeine. Whew – that was a list. I also added in lots of bone broths and fermented foods. After about 4 months, I have added back nuts and seeds in small amounts, and 1-2 glasses of wine one time a week. That seems to work well for me – I do feel like I am better off with no alcohol, and that small amount is my threshold. Any more than that and I get symptoms again. But I also love wine! Some things you will find you can have in small amounts, very occasionally. When I started feeling better, giving up everything forever was something I was willing to do. I can say I am not going to risk eating gluten or dairy again – my reactions are just too severe and I can’t afford to do that again. A lot of people have great success with SCD, and I hear good things about GAPS as well. Give it a try and if you react favorably, you will know to continue.

    As far as telling new people in my life, for the most part I keep it to myself. My family knows, and some of my close friends. It’s kind of on a “needs to know” basis. The only person I know with UC is my aunt, and she’s a very delicate southern bell, and she’s not really very open to talking about it. Ha! I had started a new job when I was diagnosed and was really anxious about what to do there, and I just told my manager that I was having some GI issues that were likely autoimmune. He immediately asked if it was Crohns or UC, and I was so lucky that he used to be in pharma sales of those medications! So he knew what I was going through without me having to share that I was living in the bathroom and bleeding like a stuck pig. He lets me work remotely and never asks questions except if I am okay. I am really lucky there. If I was interviewing for jobs, I wouldn’t share it in my interview because I would want them to choose me/not choose me based on my experience. And as much as I feel like I talk about poop, I would not be interested in poop talk in an interview. And I work in HR. :) If you are hired for a position, and your UC becomes a problem, cross that bridge when you get there. Most employers want to do the right thing for good employees, and will work with you.

    Leading up to my diagnosis, yes, I felt so alone. I didn’t know what was going on with my body, I was terrified that I had cancer, I was so exhausted I couldn’t even really do anything about it. I would try to tell my husband, but let’s be honest – I don’t want him to know everything that does on in my bathroom life. I was diagnosed with severe pancolitis in January and was just relieved to know what it was. I definitely prefer more natural ways of treating illness, and my first GI doc was terrible. He told me that diet and stress weren’t a factor, and this whole thing was out of my control. I got a new doctor and he’s fantastic – so glad I found him. He’s supportive, open to trying different things, and understands my desire to be as natural as possible. I had to do the prednisone thing to jump me out of my flare, and am currently taking Apriso and VSL. After a year we will reevaluate and possibly start weaning me off of the Apriso. For me, a strong probiotic (VSL DS! It’s the jam!) has really helped – I was taking an over the counter one before and it helped a lot too. If you aren’t taking a probiotic, I recommend it for sure! I also take L-Glutamine powder, fish oil, Vit D, and astaxanthin. I feel fantastic and other than some continuing mucus, I am back to normal. I am back in the gym (YAY!) and have gained back the 20 lbs that I lost during my flare. And as I have healed, my perspective and attitude have improved as well – the time surrounding my illness were very scary and depressing.

    Whew! That was a book. :) Keep us posted on how you are doing – it’s a lot to take in!

  5. UC Family Boy
    Uc family boy April 29, 2013 at 4:52 am #

    What is a proper diet for someone with this illness? Everyone is different. I found on my second round of prednisone when I went onto the SCDiet it actually helped far more than just medication alone.

    What foods should I definitely stay away from? Will I ever be able to drink coffee or alcohol again? I stopped all alcohol, fizzy drinks and drink weak black coffee. If you look at diets like scd, paleo or gluten free based diets it explains the reasoning behind why to follow these diets. In that you will find the drive to stay away from certain food. Back on the limitated drinks, I actually now drink hazelnut and almond milks which are so good for you and asty.

    How do you explain your illness to new people that come into your life? Not really opened up to extended family, but to close friends I have. It was first hard to get around it myself but since than I been solely on curing myself. First I need to learn about the digestive system and although we are all different in dealing with UC, for me I need to learn a whole new area I knew little about previously. Allowing me to understand the system has allowed me to realise bulking up the mucus layer, fecal transplant and diets will effective work

    How has this illness changed your life? Massively as I have not really been able to do a lot of the stuff I did before. Mostly effected my plans to travel. But I think if you let it change your life, it will!

    Is there any hope for a better future? I think so. I am fairly new to UC so others can tell you how info and medication has developed over the years. Once the understanding of how UC is caused will there be some definition about IBD however that might not still give a solution. I think possibly UC will be able to be categorised in the future and this will help with managementm of UC

    Have you been able to find a good doctor? My GPs has been pretty poor standard however a lot of them won’t be able to tell you too much about UC I feel. Saying that the other week I went to see a GP about random mid back pains and he was the first to opennly ask me what I have learnt about UC. The first doc to actually take an interest in UC so far. With my GI unfortunately he is taking force redundancy so isn’t to bothered in me and UC. If I didn’t take a lot of the learning myself and want to discover more about IBD myself than my GI would of really frustrated me with his lack of interest approach. Maybe due to him I took the route to learn about UC.

    Did you ever feel alone in fighting your illness? Other than my sister who has her symptoms arise for the first time in 8 years no one else around me really understands the problems we face. It is difficult but everyone is different and as long as you have good people around you I am sure if you can communicate your worries you can work together towards beating UC.

    Is it uncomfortable for you to talk about with people? I just don’t like being around people outside my comfort zone when I am flaring. As I am still fairly new to UC I feel I am still at the stage of working my way up towards getting back towards myself. I know when you are comfortable with UC you will be comfortable with UC and other people

    Do you tell your employer about your UC? I went through my symptoms whilst at work and was so freaked out the people at work saw me at my darkest hour. My sister was similar to you entering a new work environment when she was flaring. I advised her it was best to inform them of her IBD. As IBD is a long term journey it is important to have as many people around you that is on your side as possible.

    Has having UC ever kept someone from being hired? Not yet and it shouldn’t due to employment act. All job role depending mind you.

  6. Marcus June 2, 2013 at 7:12 pm #

    HI Amanda,

    Sorry to hear about your struggle. I found out when I was in my mid 20’s. I was actually I Nursing School for my second degree. I remember watching a video in my 2nd semester about U.C/Crohn’s disease and remember saying to myself, “I think I have that!” I had been having bad abdominal pain with cramping and frequent B.M.’s 6-12 times a day with blood! This went on for about 6 months before I finally had to get help. The girl I was dating at the time made me go to a Gastroenterologist. I got scoped and they determined my disease as Crohn’s vs.U.C.

    Since then life I had times when I felt completely normal and times where I felt like it was the end of the world! I am an Emergency Room RN and see many more young people with this disease. I am befuddled on why there is not more help out there..

    AS far as diet, I have completely eliminated dairy although I will eat Greek yogurt when I am not too flared. I try and avoid red meat and gamey meat. I eat more seafood, fish, scallops, shrimp, etc. Rice is always fine with me. Canned vegetables and heavily cooked vegetables are better most of the time for me. I can tolerated salads most of the time.

    I am lucky that my family is in medicine/healthcare and they have always been easy to talk with about my bowel problems. Although, I have been rather sick the last several months, I have lived an active and happy life the last 7 years or so since my Dx. I have traveled to Europe to see my sister twice. I have been to South Korea and Japan as well. I have lived and traveled with my job as a Travel RN all over the U.S. (Los Angeles, Greensboro N.C, Washington D.C, Orlando, Fort Lauderdale and many other cool places.

    AS far as Doctor’s go, I have seen many all over who have different approaches. I prefer the ones who are open minded about diet, alternative medicine and other forms of treatment besides pushing drugs!! My first MD wanted me on IV REMICADE after the first year of my Dx in 2005. I as able to get into remission and have avoided that drug until this year. You deserve a good MD, so do not feel bad about “Doctor shopping.” I just got a new MD here where I live, so I will see how he is. Hang in there and know that you can and will still live an happy life.. It is amazing what the mind and body can get use too.

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