Intro:
Had UC for 27 years, cope quite well but now always have grumblings, bad days and good days. Have taken prednisone many times, azathioprine for 4 years & asacol among but a few. I have tried eliminating food stuffs don’t eat meat at all or milk and many dairy. I don’t feel healthy most of the time & now I am experiencing bad eczema on my face which is getting worse by the week, docs just say moisturise! Great help they are, you feel a pest if you keep going back, so you suffer. Low energy most of the time not sure what to do for the best. Any advise would be appreciated. Thank you for listening.
Some more about Rhonda:
We have recently relocated to Dorset that’s England to a beautiful Victorian villa, needs loads of work but feel happier. I like walking and discovering nature. I like up cycling old furniture and decorating, gardening and reading. Entertaining my family too, but I also like me time when I can switch off and relax with a good book.
Symptoms:
At this moment in time I discribe my symptoms as grumbling. Mornings are worse 3 or 4 visits to the loo in the first hour, then 0 to 2 or 3 visits during the day. Anxiousness prevails when I make myself go out, but I tell myself I don’t need to “go” @ I know where all the loos are! So get up and go out.
Rhonda D’s Story:
I have taken steroids a number of times and they work less and less quickly each time I use them, I am also worried about the long term effects they have on your body. I currently take pentasa ( mesalazine) 2000mg twice daily and pred. Enemas nightly if needed.
My husband is great and understands completely my dilemmas, he is very patient, on many occasions we have been ready to walk out the door and I have rushed to the loo, he never says a word just waits patiently.
UC has changed me to a less confident person who has become quite shy and keeps myself to myself. I have 4 very close a good friends who understand, they show their concerns on occasion when they see it’s needed. I love them all.
I have got used to being examined, colonoscopy could save my life, that’s what I tell myself, my father has been diagnosed with bowel cancer and my grandfather died from it, so in my book it’s a must!
My biggest concerns are the drugs I take and have taken, will they shorten my life along with this bloody illness, how are the drugs affecting my body. Sometimes I want to know and then I think what will be will be.
Not sure about diet, never been advised apart from don’t eat high fibre stuff, well I think that makes it worse. I do generally steer away from highly spiced foods and not too many beans, although I do like them, and I am also a vegetarian as I have never liked meat but I don’t think it helps at all. I don’t have cows milk or very much dairy. I used to have soya milk and yoghurt but then found out that soya is so good after all so I now have oat milk, but that doesn’t help either, but I still drink it as I like it. Any thoughts on diet would be appreciated. Thank you.
Medications:
Meds, pentasa 2000mg twice daily and pred enema nightly if required
written by Rhonda D
submitted in the colitis venting area
Had UC for 27 years
My goodness, Rhonda…you’re almost a ‘lifer’! 27 years and colon still intact. Good on you.
I myself am nearing (or perhaps I have passed…not too sure) the 20 year mark with the good old UC. I have had the best five years of UC, these last five. I had to get off of all of the meds to do it. 15 years on them, and they really just made things worse. I think that MY body does not tolerate drugs well at all. Just like you, I wonder what, if any, the long term effects might be.
I fear that the eczema could be your body rejecting the meds, if only on that small way.
I take an excellent probiotic (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE) and fermented L-glutamine. They have seemed to be my miracle, keeping me in remission for about 5 years now.
Cheers
Hi Bev,
Thank you for taking the time and trouble to read my story, it’s a great comfort to converse with people who really understand. It’s weird as it makes you realise you don’t want sympathy just understanding from people who really know what you are experiencing.
I have bought myself some good probiotics, I have been using them now for only 3 days and already there is a change, albeit slight so I shall be persevering with them and I will keep you posted.
Thank you again
All the best to you Rhonda.
:)
Hi,
Well done on managing this bastard so well.
For the face you could consider using Metronidazole topical gel. Likely it will need to be prescribed by GP. It appears that, like many drugs, “they” are not sure how it works but it seems to work for facial skin problems e.g. Rosacea.
I’d use a moisturised suncream and only a gentle cleanser, no soap.
Good luck and let us know how you get on. the gel might take a few weeks to work.
Cheers,
Peter
Hi Peter,
Thank you for reading my story. It’s a great help and comfort to get advise from people who are experiencing the same as me.
I will consider your advise, but I have been looking into the benefits of Argan oil. It seems to be good for healing of most things. I have been using it lavishly on my face for the last 3 or 4 days and there is a marked change for the better so I will persevere with this option for a few weeks and see what happens.
Thank you kindly once again.
Rhonda
Hi Rhonda
You sound so similar to me. I live in West Sussex UK and and have had UC for 27 years as well. I’m 50.
I have had a lot of problems with the meds and have reached the end of the road trying to gain remission. I am having my colon taken out in 6 weeks time. The main reason I am having it removed is not because of my symptoms, I have managed to create a life around them, but because of the risk of bowel cancer. Several different doctors have told me now that my colon is so scarred and has so many inflammatory polyps that it’s now impossible to see during colonoscopy if anything untoward is happening. They can’t biopsy every single area so a cancer could easily go undetected, so I am told.
I have had kidney cancer, 5 years ago, and had my right kidney removed.
So not only will I remove the bowel cancer risk but I am hoping I will feel better and have more energy and be able to socialise and get out more.
I have tried many different elimination diets and taking probiotics and other supplements but nothing has really helped. Had way too many steroids over the years.
I hope you find something that makes you feel better. Have you not been advised to have surgery given your relations win bowel cancer?
Best wishes
Helen
Hi Helen,
Thank You for reading my story.
Yours is a very sad and strong account. I do feel for you, I expect, like me, the frustration is overwhelming at not being able to find a satisfactory solution.
I sincerely hope that after your op. you find the relief you seek along with a better quality of life too.
I have not yet got the stage you have, requiring the surgery that you will be having, as I am. still exploring diet changes, and probiotics. I know that my flare ups are linked strongly to stress and anxiety so I am trying to train myself to let go of stressful situations. I have a couple of relaxation CDs which do help.
My other problem is low energy levels and very bad joint pains with weakness in my arms. Now I don’t know if this is down to my past and present drug regimes or age as I am now 57. I am hoping that the diet thing will start to make a difference.
Please keep me posted on your developments and any further discussion would be greatly appreciated.
You Are not so far away from me as I am in North Dorset in Gillingham, maybe we could meet up in the future, I would so like to meet fellow UC fighters and have a good chin wag over coffee.
My thoughts will be with you. Good luck.
Regards
Rhonda
Hey Rhonda…I am just ahead of you…a lifer! Symptoms forever and finally diagnosed by 15 and now am 47. Everything Bev said…I use Rx VSL and a few other things. I had to finally resort to SCD as I became allergic and intolerant to all meds and just restricting my diet was not enough. You really need to read the book by Elaine Gottschall, Breaking the Vicious Cycle, to fully understand and it is no picnic for sure. There are many sites in addition to this awesome Adam/UC site that can help…this is the greatest site of sharing from real UC’ers!
Keep us posted. Best, Shelly
Hi Shelly,
Thanks for your reply to my story, greatly appreciated.
I had a very scary “introduction” to this disease, I was about 3 months pregnant with my 3rd child when I started with pain, blood loss, loss of appetite and weight. I kept on telling my GP something was wrong, but she wouldn’t acknowledge my concerns. I was loosing a lot of weight and what seemed to be loads of blood, I was getting weaker and looked awful but still she would not listen to me. When I reached 5 months pregnant I weighed a stone less than when I started! She still wouldn’t take any notice of me. My neighbours thought I had lost my baby because I was so thin and gaunt. I was convinced I had bowel cancer and was going to die along with my unborn child. I finally walked out of her surgery one day and took myself along to another doctors surgery. They were shocked at my story and got me into see a doctor within half an hour. He listened to me, examined me and immediately sent me down to the local hospital as my dilemma was serious. The specialist that saw me instantly admitted me and started me on the necessary treatment. I was in hospital for 3 weeks, had a blood transfusion, 3 pints, and masses of drugs, including steroids by mouth and enemas,which scared me witless because of my baby. I was put on a space man diet, what they called predigested food, which was mush and disgusting.
When I finally returned home after 3 weeks I was still very weak and thin. When I finally gave birth I was still very weak and weighed 21pounds less than before I was pregnant. My son was small and started life in an incubator. This was all the fault of the vile doctor that I was registered with, she deserved to be reprimanded for her lack of care and compassion, but I neither had the energy or inclination to do anything about it.
It took me a good year to get back to any kind of normality.
My situation will never get as bad as that time and I thank my lucky stars.
Another part of my story, still makes me angry when I think about it, but I know there are many more story’s some worse no doubt.
Thank you for listening again
Very sincere regards
Rhonda
Hi Rhonda,
Sort to hear all that. Seems quite a few stories like that with pregnancy. Glad to hear of your progress…UC is a rollercoaster ride for sure.
Anyway, I hope you look into SCD. The pecanbread,com/stages site was a huge help. I also didn’t do it over night. Another thing is to remember how variable we UC’ers can be and what someone else can tolerate others may not. Keeping a food, etc. Journal is always helpful.
Healthy thoughts, Shelly
Dear Rhonda,
First I would just like to say thank you for your bravery and posting what you did on the site! Also thank you Adam for having the courage to take pictures with toilet paper to make it a little tongue-in-cheek so to speak and start this site. It has really been in many ways a great support for me. I was beside myself with grief(?) recently when I realized that I’ve been suffering with stomach problems for over 25 years. Technically since birth but I’m calculating since first diagnosis at 11. The lack of support from both my first and unfortunate my current husband has been devastating. I count my blessings daily however I always feel “sick” and I’ve grown so tired of it! In short I’ve been bleeding again since December 6. Nothing seems to work I’m taking everything, doing probiotics too and I’m vegetarian. Now I can no longer digest coffee which really sucks! UC, IBS, & GERD have made me nearly incontinent.
Thanks for having the courage-Rhonda, Adam, ALL OF YOU-to talk/post about UC. Despite my situation I’m greatly encouraged by your stories and because of them I feel less alone in this world. My heart truly goes out to everyone dealing with this mess. I wish you all good health, strength and support. Please keep posting and BE WELL!
Most sincerely yours,
Trina H
Hi Trina,
Thank You kindly and sincerely for reading my story.
I really do feel for you, your account is very disturbing that you have been suffering and coping for so long. It makes me so angry to hear of people who have no support from their spouses. That really sucks. Maybe if you let him read some of the story’s on this web site he may start to understand. I am really blessed and so fortunate that my husband try’s to understand, and is sympathetic when needed and extremely patient. I have cried many a time in his company and vented my frustration and anger at this disgusting disease. He always listens and also asks me nearly every day how my stomach and “bum” are. I can see that on occasion he is suffering too.
You really must go back to your doctor and insist they help you, as it seems from your story that you are not getting the medical support that you deserve and need.
I am always here to vent your frustrations and concerns, bounce ideas and rant if you need to. Just remember you are not alone coping with this vicious cycle of symptoms, ups and downs, lows and highs.
I sincerely feel for you.
Hugs and lots of soft loo roll!!
Rhonda
Hi Rhonda. I also have UC (11 years) and eczema. I decided to take curcumin to ease my joint pain. It seemed to help. Then I went back to the supplement store to replenish my supply, the employee told me I needed some type of oil to take with the curcumin, and he recommended coconut oil. I now take 1000 mg of coconut oil with my curcumin, and it seems to have really improved my eczema. Just taking the curcumin with fish oil had no effect, but adding the coconut oil seems to have made the difference. Something to consider!