VIcki was just diagnosed, lets help her out!
HI, my names Vicki and I’m 28 years old and have just been diagnosed with Ulcerative Colitis although they are still running tests.
I have to go for an endoscopy in 2 weeks time. Ive been suffering for years with bowel problems but after passing out and losing a lot of blood my hubby made me go to the docs! Ive had a colonoscopy and biopsies taken. Week after xmas i was still feeling really ill and passing blood and the most horrific stomach pains so went back to the docs where she told me the results had come back and i have UC. She gave me 2 weeks worth of Asacol to try said in that time i should see the consultant at the hospital. Im still on the Asacol and only just got an appointment thru which isnt till April!!
I’ve had no info from the Docs on what it is, whether I’m too avoid certain foods , all she said was im going to be on medication for rest of my life!
Feeling rather fed up now as this has been going on for a really long time! Can’t remember the last time i actually felt well and i’m sure people think im making it up especially work, as ive had to have a few odd days off after feeling really poorly!
I suppose what im looking for is just some advice as i feel like im in the dark about it!
Any help would be greatly appreciated!
Thanks Vicki x
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com
Hey Vicki,
Firstly my condolences, and secondly welcome to the club! I was diagnosed 6 years ago and when I’m having a flare up it is completely debilitating, I get all the symptoms you have described and I very often can’t leave the house. I get anxiety attacks and lots of friends and family just think i’m being silly or that it is no big deal. They are wrong and don’t worry about what people at work think. I was also concerned that no advice was given about diet. when i left hospital after being diagnosed and having a blood transfusion i was only allowed clear fluids and nothing was mentioned about where to go with food from there. I learned what i could handle no corn, no red meat etc (it is different for everyone i think) eventually i decided to go vegan because doing so irritated my stomach the least. Last year i had a big flare up that lasted months, i lost a lot of weight and was very anemic. I also couldn’t face eating anything but weirdly got cravings for eggs. I listened to my body and eventually as i got better (with the help of some steroids) i broadened my diet and now i eat what i feel like eating but that rarely involves meat. I take Asacol and Azathyoprine and have regular check ups. When you flare up it feels like it will never be fixed but when i’m good, i’m really good, i can hardly believe the agony war really as bad as i remember.
At least now you know what is wrong and you are on the road to getting it fixed!
Good luck and just go with what feels right and works for you!!!!
Hi Vicki
Thankyou for sharing! I know how you feel, the first few doctors then apparent bowel specialists haunted me with the cancer word each time i visited them and saying that drugs were the only way. When i asked what foods to avoid and any ting else i could do to help myself and things to avoid the only reply i got was not to have a curry feast. I then thankfully found this group ….. *breaths out in a long sigh* Finally some people i could openly talk to and get a variety of help and sdvice from.
My one big bit of advice – push and push till you find a consultant that specialises in UC, not just bowels. I’ve found one now, and it’s so nice for them to ask me if i have this symptom or feel like this or that! Last load would take all my symtoms down, and justify that they might not be because of the UC or the drugs for them. I felt like they weren’t listening to me, but now i’ve found this one that does and i have so much more hope.
No doubt, the bathroom will be your santuary for a while, but there is light and not blood at the end of the tunnel!
Take care, keep a note of things you feel make you flare up.
Fay x
Hi Vicki. One thing I have learned by reading other people’s stories is that UC is a complex disease and treatment needs to be individualized to the unique needs of each person since we all react to flares, meds, etc.. I’m infuriated that they aren’t seeing you again until April, as this is similar to what happened to me. If you are still concerned and having symptoms, I would try asserting myself, and if that doesn’t work, think about shopping around for a new doc if that is an option. My biggest regret is that I didn’t take that advice – my 1st gastroenterologist didn’t have time for me in the beginning, and he didn’t have time for me when I would get sick. The only time he courted me was when it was time for a procedure. I’m in a completely different situation now where I can even email my doc directly and get a response within a business day! It makes all the difference in the world to have a medical provider who will listen and work with you.
As far as food goes, it seems to vary from person to person, but I found that along with the UC that I developed a gluten intolerance. Cutting out gluten is tricky, but it certainly helped me get my symptoms much better under control. Some people have (at least temporary) lactose intolerance as well. I’ve found when I’m sick that I have to stay away from most starchy foods (even non-gluten), dairy, and definitely coffee and alcohol (I’ve actually stopped drinking too since alcohol induced a bad flare this past summer).
Know that you may go through a mourning-type stage of adjusting to a chronic condition, even if you get it under control. If you feel overwhelmed by it, I highly recommend talking to a counselor. I saw a therapist last summer before moving, and it was a HUGE help in adjusting, self esteem, body image, etc..
Even if none of the above is much help, I encourage you to continue to hang around here and the FB page as there are a lot of great people with a lot of collective wisdom to share, and I think it helps just knowing that you are not alone with this nasty disease!
Wishing you the best,
Stephen
Hi,
My last posting may be help to you (ignore the title!)
https://ihaveuc.com/sex-and-uc/
My advice to you is not to worry too much at this stage. My sister had only the one flare and that was it. She’s fine just taking Pentasa. My brother has it too and is sweet on the meds. It is easy to see worst case examples when searching the net, but in my experience, most people don’t develop the most severe symptoms so there really is no point worry about what may never happen.
When I get a flare I take Prednisone (40mg) and it knocks it on the head pretty fast. It might be an idea to talk to your doctor (or seek a specialist) about getting a script for this. You will hear of some side effects that you may or may not get to varying degrees. I would also recommend talking about a regular blood screen. I am regularly tested for the following:
*Liver group
*Creatinine
*Electrolytes
*Glucose
*Full Blood Count, CRP and ESR
These tests can provide information on the state of inflammation in your bowel (trends) and your immune response. They have served me as as early warning for a flare and enabled me to get onto it before it becomes full-blown. The tests started as weekly when I was first diagnosed, then monthly and now (as I’m in good nick) every 3 months or so. Insist that a copy of the results are CC’ed to you – you will easily be able to interpret the results yourself after a while. This sceening is very important if you are put on Azathioprine (insist on it!). It is also a great tool for when to ween of Prednisone.
As you live with UC you get a handle on what is going on and to some degree you become self-medicating and learn to manage the disease yourself.
I have gone gluten free with great results. I didn’t (don’t) find it at all difficult where I live and even if it doesn’t help you so much with the colitis it has an indirect benefit of stopping you eating rubbish foods to some extent and rteplacing them with better fodder.
I’m not a doctor but this is what my situation involves – I definately recommend you talk to your doctor about these things.
She’ll be right, mate,
Peter
HI Vicki!
Lots of great advice on this page so far… I know how you feel – when I was first diagnosed (June 2009) I had to wait four months after my colonscopy to see a gastro doctor. I found that the American Crohn’s and Colitis Foundation is a good resource (http://www.ccfa.org/). I also picked up a couple of pretty good books: Crohn’s and Colitis Diet Guide and Crohn’s and Colitis – Understanding and Managing IBD. Check out this page for a good list of books: http://www.ccfc.ca/English/info/books.html.
As for diet – the best thing you can do is keep a food journal. When I was first diagnosed I went on a low residue/low fiber diet. This helped. I still do this whenever I flare. I just finished a terrible flare where for the one week in hospital and week afterwards I ate chicken broth, white bread and jam. Not appetizing but it helped.
Be careful with searching in Google – some of the websites you will find are very depressing and can make you feel worse. So far I’ve found this site to be the best resource.
I’m currently taking Imuran, Pentassa (similar to Asacol) and VSL #3. I’ve tried steroids but these make my colitis worse.
A lot of people on this site follow the Specific Carbohydrate Diet – if this suits your lifestyle it might be worth looking into.
Don’t give up hope – ulcerative colitis is not a death sentence. I wish you didn’t have this disease but please know that your life is not “over” and that you can still lead an active, outgoing and full life.
Keep posting on this site with any questions/concerns/thoughts you have – we are all here to help one another.
take care,
vicki
Hi Vicki, I had to write to let you know something that has really helped my husband, who is a fellow UC sufferer. He was diagnosed in September, but got worse while on the meds, so his GI doctor wanted to put him on worse meds.
Instead, we decided to try together the Specific Carbohydrate Diet. Within five days of adhering to this diet, my husband had zero UC symptoms. And he’s off all medications as well. It’s not the easiest thing to stick to, but it’s incredibly healthy. We’ve embraced this diet because it has worked so well. Many others with UC have had similar successes.
If you’re curious about the diet, check out the official website for the diet: http://www.breakingtheviciouscycle.info/. I hope you will also check out our blog. My husband and I are documenting our experience. http://thescd.wordpress.com/
Good luck! I hope you feel better soon.
Hi Vicki, I second Lindsay’s experience of SCD. I had about a year of symptoms with no relief from drugs apart from prednisone, whcih made me feel awful in so many other ways.
If you are interested in trying it out, I recommend reading the first (free) chapter of the SCD lifestyle book (http://www.scdlifestylebook.com) which gives a really easy to follow guide to starting the diet.
All the best,
Catherine
Hi all,
Thank you so much for the comments and advice! Feeling a lot better knowing that im not alone and it will get better!! My nan has bought me a couple of books to read up on and one with gluten free recipes to try!
Does anybody else get lower back pain when having a flare up?! When i asked the doc last time i went she just said its prob just a back prob but i only get it when having a flare! Seems to affect the left hand side more but travels down my bum into my leg! Also need to go to the toilet within minutes of eating anything.Ive stopped drinking any alcohol aswell as used to bring me out in like a blotchy rash on my chest neck and face!
One last think how do i find the facebook page…managed to find the one on twitter!1
Thanks again
Vicki x
Hi There Vicki,
Thanks to you for finding us, and thanks to everyone else who has left comments! that’s what its all about!!
the Facebook page is here: FACEBOOK PAGE
Also, the lower back pain/joint pain stuff/tendon pain…. heck yeah, I get that too. Its been a very strange thing, as it seems to come and go, and come and go etc… but usually the worst for me while in flares, and the worst first thing in the morning when getting out of bed. Tons of others have talked about these “back pain” type symptoms within this site and on the Facebook page, so again, you for sure are not alone with that stuff. if the doctor was a GI doc or seen alot of UC/Crohn’s patients, the doc would be able to put it together that the back pains are realted to your condition, but not all docs see enough UC’er type people to make that connection.(I personally think it is all related to the inflammation and our immune system going kookoo when UC symptoms arrive into town…) As for left hand and right hand stuff…. I too had that, but for me my right elbow and right shoulder seemed to be the worst spots, then the colar bone area etc…. weird… yes..
-Adam
Amazing comments all! Vicki, I had really severe arthritis (from Crohn’s, which is also an Inflammatory Bowel Disease/IBD, like ic), and I gave up wheat entirely–for starters–and within 3 days my back pain was better! I’ve been wheat-free for six years :)
Worth a try maybe–also gentle yoga helps, hot baths with Epsom salts (candles with lavender oil in tub help relieve stress on the colon, too). And someone said keep a food journal. That was a big help for me, especially at the beginning.
Adam is so right on about the flare causing joint inflammation–yikes! Good luck and keep us IBD support groupies posted.
Im 18 and i was diagnosed with colitis almost 6 years ago I was 98 pounds when I was first diagnosed I am 4’11 …. for the past two years I’ve been losing a lot of weight I really just want to get back to a hundred pounds again currently I am at 85 pounds or less …. just recently I lost 10 pounds in two and a half months I went from 95 pounds almost to my goal then I lost 10 pounds !! I drink two ensure a day I just don’t get why I can’t gain the 15 pounds I want !!