Ulcerative Colitis Tips


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24 Questions from Ness – Diagnosed with UC December 16, 2014

Intro:

I am a single mother and I just turned 25. I was born with congenital hypothyroidism and I was diagnosed with Ulcerative Colitis yesterday (December 16,2014) actually , and I have a tonne of things and un-answered questions running through my mind. Figured this was the best place to start.

I am currently in school (getting sick has kind of put a break on it a bit) working towards my bachelors in nutrition and food. The end goal is a registered dietician. At the same time I have taken up becoming a personal trainer while I complete my schooling, therefore I can support my son and I during the course of it.

Some more about Ness:

I’m from Toronto, Ontario, Canada. I’m quite active. Always enjoyed; running, swimming, ballet, rock climbing, yoga and I just picked up martial arts about a month ago after having a serious problem with my thyroid supplements which was helping with weight loss and stress a lot.

Current Colitis Symptoms:

About 4 weeks ago it started with the urgent need to go to the bathroom, along with mucus, and blood. Two weeks ago it got really bad, when a fever started and it was constant bouts of watery BM’s, gas, tonnes of blood and pain in my left, lower and right abdominal areas, which would shot up to my right ribcage. and these lasted all day and night. As of now, after yesterdays colonoscopy/diagnosis, minimal blood, minimal cramping still can’t stray away from the bathroom too far, and headache (not sure if this is a symptom or broken sleep)

Super New to Ulcerative Colitis:

Well, the doctor really didn’t say much so, lets start there? (sorry if this is really long, but I am extremely confused and upset and rather irritated physically and emotionally)

I went in for my first colonoscopy to see why parts of me that shouldn’t be bleeding are, the prep sucked..a lot. Never met this doctor before, waited an hour and a half on a cot in a hallway waiting to get sedated and have a camera put up my rectum. The nurse was nice. 4 minute introduction to Dr’s and nurses, and they knock me out. Next thing I know I’m getting woken up in a new ward being asked if I work in a hospital or medical clinic (no I don’t.) Nurse (nice one) looks like she has seen a ghost and another nurse is telling people “this area in now in quarentine (C.difficile that I have some how contracted) and I’m still really out of it. My parents showed up, we waited for the doctor for about 20 minutes. He finally graces us with his presence, he mentiones the C. Difficile, said colitis then he wrote the name (ulcerative colitis) on a piece of paper when my mom asked for more information. Checked my stomach, then told us his secretary woul d contact me, gave me discharge papers and then he was gone, in fairness I was getting my IV taken out and I was a bit disorientated so I missed a bit of the conversation on meds.

I got home with my parents ( Son and I moved in after the separation.) and just passed out and been having a heck of a time sleeping since and not stressing over whatever I have now.

My Main Concerns:

  1. The horror stories about it taking years to get a handle on it is probably what concerns me the most
  2. will my son get it
  3. I feel like I’m letting him down
  4. Can I still become a personal trainer?
  5. Can I go back to sports ideally the martial arts or will that be too hard on me? (I’m not saying right away)
  6. What do I eat now? (this one really confuses me)
  7. meal replacement shakes? No? Yes?
  8. why are the meds so ******* expensive?
  9. did anyone else cry when they found out?
  10. how did you come to terms with it?
  11. am I now going to be single forever?
  12. how often are the colonoscopies
    • do I get drugged every time?
  13. is it the same symptoms every time there is a flare, or is it like a bowel moment wheel of fortune?
  14. pain killers. can I use?
  15. anti-depressants, can I use?
  16. if it lasts longer then a few months should I go on disability
  17. will i have to get surgery down the line?
  18. wouldn’t it be better to do it now if that’s the case?
  19. how often can medication change?
  20. do I stay on medication, more so the suppositories for life?
  21. should I get a second opinion?
  22. did your doctor leave you in limbo with information?
  23. should I be looking for another doctor?
  24. am i overreacting?

I’m a little pissed off with this…

I think that’s it for now…..

The doctor started me on 4 mezavant horse pills in the morning and salofalk at night. I’m just about to take my first doses of that so I honestly have no idea what to expect.

My family has been treating it calmly and helping with my son. My dad had to ask his gastro (we have different diseases) what colitis was so I know my surgeon/self-proclaimed doctor obviously did not explain it well. For obvious reasons he(dads gastro) can’t give me advice without seeing me or knowing full details.

Honestly, I just want some piece of mind until January (when my scheduled appointment is with doctor that should have explained himself a little better) or I can get an appointment with another gastro. Just something.

written by Ness

submitted in the colitis venting area




c difficile

14 Responses to 24 Questions from Ness – Diagnosed with UC December 16, 2014

  1. Amanda December 24, 2014 at 4:59 am #

    Hey Ness, here you go.

    1. Unfortunately I cant comment on this one too much. Its been 3 years for me, still not in remission. I take it one day at a time.
    2. Your son will not necessarily get it just because you have it.
    3. You’re not letting your son down. You didn’t do this intentionally. Just do the best you can!
    4. Of course you can still become a personal trainer!
    5. I don’t do sports because I don’t like them. You will learn to read your own body. You can still do them, just know when its too much and take a break. You may be a little weak depending on the severity, meds, etc.
    6. Again, listen to your body. You can try following the SCD diet if you’d like. I know now what I cant eat… oily potato chips (like Lays), tomatoes, gluten, dairy
    7. I tried meal replacement shakes because I had lost a lot of weight and I used them to try and… bulk me up. Unfortunately they had too much dairy for me and I could stomach the texture of powdered drinks
    8. I wish I knew why the meds were so expensive. If it wasn’t for my benefits, I would pay $800 a month!!!!
    9. I didn’t cry when I found out because I didn’t really know what it meant. Ive cried MANY times since.
    10. I still haven’t come to terms with it but I work on it all the time. Mycrohnsandcolitisteam is a great website to meet other people dealing with similar issues. Eventually, the poo jokes are funny too!
    11. Single forever? Not unless you want to be.
    12. Ive only ever had 1 colonoscopy in 3 years. I’ve had about 6 flexible sigs though (like a baby colonoscopy)
    1. For a colonoscopy, probably. Flexible sig, I never do (but it can be quite painful depending how far they go)
    13. I haven’t been out of a flare for me its more ebb and flow. I tend to get the same symptoms though. First blood, then a bit of mucus, then I start feeling tired, then more mucus, lots of cramping, etc, then I lose weight… I also recommend taking iron supplements, helped me a lot.
    14. Pain killers… I use em!
    15. anti-depressants… don’t get ahead of yourself unless this is something you are already dealing with. In which case, I have no idea, might depend on the kind of meds you’re on.
    16. I’ve been in it for 3 years and don’t need disability. I do call in sick and take unpaid days more than I like, but my employer knows the situation (which helps). This would depend on severity.
    17. Surgery is usually a last resort.
    18. ^
    19. I change my meds every 3-6 months or so. But I have finally found something that works for me. And hopefully you do too!
    20. Depends on how you and your condition reacts to the meds.
    21. My doctor encourages me to get a second opinion if I don’t feel good about something. I considered it when he wanted to put me on immunosuppressives but we went a different route instead with my meds.
    22. My doctor did tell me to go online and do some research.
    23. What’s wrong with the doctor you have now?
    24. Not overreacting but try and take it one thing at a time. Stress wont help make it better. It is normal to think all of these things. It is a lot to take in.

    My colonoscopy was VERY similar experience to yours (hmm, I live in Toronto too, maybe it was the same place)!! After the general surgeon (or whoever he was) gave me a prescription for prednisone that worked short term, I was referred to GI at St. Mikes hospital downtown. As I said, I have had symptoms now for 3 years. One thing I can tell you, EVERYONE is different! Mine has been very aggressive but not “severe”. I would say, if you’re not seeing a GI now, request it.
    I hope this has been of some help to you. If you want, shoot me an email and we can talk! amanda_049@live.com Maybe even meet up sometime soon.

    I’m not a doctor, I can only base my answers on my experiences. Hope this helps!

    • Ness December 24, 2014 at 1:35 pm #

      Thank you all so much! I have since calmed down a little bit but this just made me feel 10 x better ( also reading Adam’s book and seeing my gp who had explained it a little more yesterday.) I am finding it hard not to get emotional with the antibiotic they have me on for the c-diffissil. They have not put me on steroids yet because of the c diffissil ( which is smart roids may make it worse.) My goodness it knocks you down a bit energy wise. I am very glad i can retun to sports eventually I would still like a change of doctors just be cause of over all comfort. I found his clinic very unwelcomeing when I called to set up the colonoscopy in the first place ( he was able to do it on the fly in my area which Is why he did it) and has felt that way since. He may very well be a great doctor but first impression made me uneasy and having met my fathers, omg such a nice guy, I think it’s the best for all parties. I would love to email you Amanda! Thank you again

      • Adam
        Adam December 25, 2014 at 1:36 am #

        Hi Ness,

        If you’re not happy (and comfortable) with your current doc, for sure look into a different one. I once was set to meet “the Best GI doc in the Bay Area”, and is sometimes the case with any type of doc, I was not at all impressed. He had me feeling uncomfortable, uninterested in me, and I just plain and simple didn’t like him.

        Long story short, yeah, I am a big believer in people like us taking some extra time and effort to find docs we like. The disease doesn’t go away after a visit or two, and there is going to be a need to have a longtime partner in the doctor world for UC’ers.

        Best of luck with finding a GI you’re happy with.

        • Krista March 2, 2015 at 7:16 am #

          Have you came across anyone with UC, FM and IBS? I am desperately searching for someone to help me understand my combined conditions. Unfortunately my doctor isn’t being thorough or helpful. I can switch doctors because I don’t have any in my area. I already drive 50 minutes to get to my GI.

  2. John H December 24, 2014 at 8:25 am #

    I would highly recommend reading the Genotype Diet by Dr. D’Adamo. It has worked for me without any meds for a year.

    I would say that it is very important to set small achievable goals to reduce your stress quickly and easily. Stress is THE enemy. Setting up some sort of structure/schedule will do you a lot of good. I am a martial arts instructor, and have had no problems from working out. I go on long rucks (basically a hike carrying 50+ pounds), etc, all with UC, so yes it is possible. In fact, I do it for the stress reduction. Basically everything I do is intended to reduce my stress any more. If you start feeling stressed, DO NOT EAT. I have gotten to the point where I actually have a hard time getting angry when something bad happens, and because of that, I feel happier than I have in years.

    Just know, first and foremost, UC is NOT the end of the world. It is controllable, and can live a great life.

    • Ness December 24, 2014 at 11:57 pm #

      Thank you :) I do feel better now that I know it’s doable.

  3. Debs December 24, 2014 at 8:36 am #

    Hi Ness
    I think Amanda has done a fantastic job answering your questions. I live in the UK and drugs are supplied irrelevant of the costs. I often feel for all my international sufferers as you have the added worry of how you finance your medications as well as the illness!!
    I have recently been diagnosed UC (15th Nov 14) and Although my brother has the same disease which resulted in him losing his large bowel and rectum it was a massive shock for me to be hit with the same disease! They say thunder doesnt hit twice well it has in my family. I felt devastated, I cried immediately in front of the doctor and my family who were there with me getting my results of seigmoid scope and biopsies. I was put on IV steriods for 1week and then sent home from hospital a couple days after on a 16 week tapering of prednislone with Asacol 800 mg hd. I have the UC in my ascending large bowel and . i will have a full colonscopy when finished with preds to see if it is any further into my descending bowel. If steriod dependant they are talking of putting me on Aza immuno suppressant drugs but I dont want to go that route thats why Im SCD diet immediately after diagnosis. Seen what those drugs did to my poor brother!!
    Like you the hardest part for me is the sport. Up until 6 weeks to my hospitalization I competed in Trialthlons tough events and was an age group competitor /finisher. I am an active cyclist and compete in many events both ultra distance events to local time trails. I love running and have been involved in so many events locally and love hilly terrains. I regularly swim in the open water lakes as i live in the most beautiful part of Britain in Wales and my playground is the National Park of Snowdonia. The progress i have made to date is Im back on my bike on my daily commute to work ( 25 mile round trip and 1800ft off ups and downs thrown in) im not back on my Sunday cycling club runs yet as they ride a good 70 miles in the mountains this time of year but it is on the cards for January. I havent started running yet as i know this is hoing to be my greatest test but again I will give it a go mid january slowly but with determination. I am back swimming in my local pool a couple of lunch times a week and thats going real well. In the early days after coming out of hospital I walked 4 miles every day which i believed kept my legs moving and strong.
    What i am trying to show you is that its not all over you can carry on to become a personal trainer you just have to go with your body know it and know when its tired and when it needs rest. I dont know at this stage whether i will be able to kick out a hilly 10 k run in 49 mins again but hell I wont give up trying. Can i cycle a hilly 135 miles at 16 mph non stop again That remains to be seen but maybe with a few rest stops thrown in!! . Will I ever compete in a Trialthlon again ? I hope so and I am already paid up for two main events in May and June 2015 and I havent cancelled them as yet.
    I now follow the SCD and have been on it for 7 weeks it is helping me to regain my health back try it what have you lose – only the horrible D & B and the P. it is hard at times to be so disciplined on it but I look back to my darkest hour whilst in isolation in a room in hospital with a commode strapped to my arse!! The tears and loneliness I felt that night was awful the humiliation of not being able to empty it myself as not allowed outside because of potential C Diff is enough to keep me on track. Trapped in a room stinking because staff too busy to come in and take it away…..never want to be there again.
    I wish you luck on your journey back to health and yes I think you will acheive everything you put your mind too. Debs

  4. Paul Willoughby December 24, 2014 at 10:32 am #

    I hope you get over the C-diff without complications. You should feel better then. As for martial arts: keep training once you’re out of the hospital.

  5. Peter December 25, 2014 at 11:37 am #

    My responses:

    1. I have had UC for 43 years. I have not had surgery. Flare-ups have occurred every few years; they last from weeks to several months. Early in diagnosis, I used azulfidine, but during the last 30 years, I have used asacol (mesalamine). When active, I will also use Rowasa enema
    2. No one else in my family has UC (sibs, parents, children)
    3. I told my girlfriend (now my wife) after dating for 6 months; I explained that sometimes I get sick.
    4. I never let my disease dictate what I did in my life.
    5. Even when I have a flare up – I run (distance), bicycle, play volleyball, etc. If active, I use a restroom prior to the activity if needed.
    6. When flare up occurs, I avoid the following foods in my diet – spicy food (pepper, etc) nuts, corn, fruit with edible seeds, and milk (I am lactose intolerant). During recent years, I also cut back on gluten containing products. In general, I always eat yogurt and minimize fats and red meat in my diet. I don’t purchase ‘organic foods’ nor macrobiotic additives.
    7. See question 6
    8. Good question
    9. I was in my early teens, I only wanted to know how to manage my UC.
    10. Everyone has challenges, UC is not life-threatening.
    11. I explained to my wife my disease before marriage. I told her I managed it, and may need some small help (restricted diet)
    12. I get a colonoscopy every 2 years since age 35. Procedure itself is not an issue, prep is tough.
    13. I recognize when flare ups are close. Very similar
    14. I use no pain killers. I am curious about medical marijuana as an option during flare ups.
    15. No other meds.
    16. Unless you need surgery, best to manage within your lifestyle.
    17. 43 years – no surgery as yet.
    18. I don’t agree with surgery until all options explored
    19. No changes in years
    20. I take asacol even when not active, but at a reduced dosage. No known side effects from long term usage (at least with me)
    21. Yes
    22. Internet has lots of data to sift threw.
    23. Find someone to help you manage your disease.
    24. Hardest part is to accept diagnosis.

    Maybe I have been fortunate with my UC. Never taken anything more than mesalamine. Flare-ups occur more often now that I am > 50 (once a year for a few weeks). I believe stress is a factor with UC, but after flare up, one needs to address UC for physiological symptoms. Diet is my biggest focus. Also, remember that during flare-ups, colon is not working correctly, so I also increase my fluid intake.

    I hope this helps. Contact me if you want more info.

    • Amanda December 28, 2014 at 2:49 am #

      Marijuana has done nothing for me in terms of my colitis. Just thought i’d share that :)

  6. chris December 26, 2014 at 9:07 am #

    Just a heads up, fecal transplants have shown positive results for C.dif. In England it’s not on the NHS, but if I had C.dif UC I would be working out a way to do it myself :) anyways, might be worth a read! Good luck on your journey to recovery!

  7. Erin December 26, 2014 at 10:45 am #

    A few pointers to help you cope, take it one day at a time and if that is too much, take it one moment at a time. Yes it is okay to cry, I did a lot after I was diagnosed, and it is okay to be angry.
    no I don’t think you will be single for the rest of your life, things will change, but you will realize that not everyone will understand you,and that’s okay it will help you weed out the ones who are not suited for you.
    As far as eating goes, I think everyone is different, so try to eat small portions and maybe even use some of the information you’ve learned in your studies to put together meals.
    From what I’ve learned in having this disease is that it is better to not worry about things , It is normal for you to wonder and worry if you will pass this onto your son, or not be able to continue your studies. Take each day as it comes, and try to see the good things,in every day. Your son will look up to you as a wonderful role model, for being able to go through life with a disease. We all have something “wrong” with us, no one is perfect. Do the best you can, every day and be okay with that.
    I wish you peace and comfort, in this new chapter of your life.

  8. Brian Jackson December 27, 2014 at 3:55 pm #

    Sorry to hear about your story Ness. I was diagnosed back in July and I am 27. 2014 has been the roughest year of my life and a huge learning experience. My heart literally goes out to anyone developing this. Since July I have gone from 15 trips to the bathroom a day, blood, the big D, etc… and now only have one bowel movement per day :), no big D and no blood. There is hope in the future, don’t let it get you down. I am a workaholic and trust me, I got very depressed. If it wasn’t for my family’s full support (they live in a different state) I don’t know if I would have made it.

    Here are my answers to your questions.

    1. It won’t take years, but join the UC support groups on FB. Do your own research, don’t wait on doctors.

    2. Your son might have a chance to get it. For example, UC doesn’t run in my family, but auto-immune diseases do. My dad has bad RA and so I got lucky with UC. There is a chance, but think of it this way. You will figure out how to beat. And when you do, if your son ever has problems, you will be able to fully support him.

    3. Never let yourself feel like this.

    4. Yes, once you get your symptoms under control, in my opinion you can do whatever you want in life!

    5. See #4.

    6. The biggest thing that stopped my D and got my bowel movements back to normal was diet. It wasn’t medicine. I am now gluten-free, and low sugar.

    7. I don’t do shakes, but I fully believe in juicing. Watch the movie “Fat, Sick & Nearly Dead”. This guy and many others have cured their auto immune diseases with juicing. It isn’t UC, but same idea. You will feel so much better juicing and your body will get the nutrients it is probably lacking because of your condition.

    8. There are expensive meds and cheaper meds. Do your research. Don’t trust your docs on this. They put me on Lialda which was $750 a month after my insurance. I did my own research and found Colazal which was same thing and only $66 out of pocket. GI was fine switching me and it worked fine… the GI’s aren’t always putting you first, remember that. Get 2nd opinions, find a GI you can trust.

    9. I had days when I broke down crying. And I’m a dude that doesn’t cry lol. But it is overwhelming. Thankfully those days are behind me.

    10. My faith in God and the support from my family got me through it. My relationship with Jesus Christ is stronger than ever.

    11. I like being single so I can’t comment on this one :) Remember that work driven thing I mentioned before lol.

    12. I only had 1 back in July before diagnosis. I plan to get another one this July to check progress and then probably 1 every 2 years after that. If you aren’t in pain and have normal bowel movements you are probably ok. But just to be safe I would recommend getting them once in a while.

    13. Usually for me the symptoms are the same…. Unusual bowel movements, the big D, blood, etc.

    14. I don’t use pain killers.

    15. I have thought about this… but thankfully my faith has gotten me through the worst of it.

    16. The battle to get on disability might be worse or longer process than getting better. You will get better, never forget that!

    17. Possibly, I am not focusing on that. I am focusing on healing my colon :)

    18. No!

    19. I believe more in diet that meds…

    20. See #19.

    21. Definitely!

    22. Almost always. They don’t have UC. they don’t know what we are actually going through. Only what they have read in books.

    23. Possibly, I would find one you can trust and listens. Even if it means going through a couple

    24. Possibly, but we all did when we got UC. Remember, it will get better. Never doubt that.

    Here is what I am currently taking. Again everyone is different. But this is like 6 months of work for me to get to this combination.

    4x Colazal per day, 2x Klaire Labs probiotics per day, L-Glutamine, Aloe Vera (Inner leaf, not outer leaf), Multi-vitamin, Gluten-Free, Low Caffeine, Low Sugar.

    Hopefully that helps a little.

    I will be praying for you Ness! You will get through this.

  9. Liz December 30, 2014 at 7:16 am #

    I didn’t take time to read everyone’s lengthy responses, so I’m sorry if I’m redundant…

    Take a deep breath! yes, I cried when I was diagnosed. I still cry sometimes, this illness is very stressful sometimes. But life goes on! And you have a great chance for getting over this quicker than some of us – it is possible that you have C.Diff Colitis, and not actually normal Ulcerative colitis. What did the dr give you to treat the C.Diff? It’s usually either a course of Vancomycin or a combination of a few really strong antibiotics like Flagyl, which make you feel awful for a few weeks but in most cases can get rid of the C.Diff. Then you MIGHT feel all the way better! If you have resistent C.diff, definitely look into a fecal transplant, it’s hard to find a dr that will do them in the US (i dont know about canada), but they’ve been shown to be something like 90% effective in curing C.Diff, whereas the medicines are only something like 50% effective. And many people swear that fecal transplants (also called FMT if you want to google them, there was a great article recently in the New Yorker Magazine) cure ulcerative colitis too.

    If you still have colitis after the c.diff is taken care of, the good news is that there are lots of medicines to try. Some are expensive, others are not. If you don’t like your dr, find a new one asap! make an appointment with someone and feel free to interview them with these questions, as well as questions like “why did you decide to be a poop doctor”, so you can get a feeling for their attitude toward the subject. Good and highly recommended doctors tend to be very busy and hard to get appointments with, but any doctor who makes you feel like they’re giving you time and attention can be a “good” doctor. make appointments with several different doctors if your insurance will cover it, it can’t hurt! You could also try setting up a telephone interview with the drs rather than an office visit if cost is an issue.

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