Intro:
57 year old female diagnosed with mild case of UC in 1996, have had regular colonoscopies for the last 10 years, every 1 to 3 years that always show some minor inflammation even when in remission.
Some more about me:
I live on a 5 acre property on an island. Have a grown son in college. Married 33 years. My mom lives in our household with us. I love to garden, landscape and vegetables. I think others would say that I’m a perfectionist, what I do I try to do well. I have really wonderful friends that understand my illness and feel very lucky to have them. People probably wouldn’t describe me as an introvert but I am by definition, enjoy my time alone, cooking, knitting, gardening.
Symptoms:
Currently in remission but just had a flare in September.
New to Eating SCD
I think that UC has made my life less adventurous. Travel becomes difficult as I have limited parameters of comfort, need my own toilet and prefer eating at home over restaurants. I’ve had two GI doctors, not fond of either really. Am now beginning with a third doctor and have hopes that he will be willing to discuss diet and that he is staying informed about current research in fecal transplant. Am following the research presently being done in Canada on UC patients with fecal transplant. Living in the Seattle area I was sad and angry to find that UW Hospital had attempted research just this year and been stopped by the FDA. My family and friends are great and though they may not fully understand how it is to have this terrible illness I feel their support. I suppose that I most worry that the illness will progress or that my health insurance situation could change. I have also been diagnosed with osteoporosis.
New to eating SCD. Seems like a common sense diet and enjoy the learning curve, it does make it more difficult to travel and eat at other peoples homes and restaurants and so I’m struggling a little with that aspect, becoming that person who is difficult, I’ve always eaten healthfully but have never been too fussy and was happy about that. Coffee is the hardest thing to give up, tell me who wants a weak cup of coffee! I haven’t noticed a big difference in my poops yet which aren’t ever well formed and haven’t been since being diagnosed but I plan to try this for two years and see where it gets me with colonoscopy findings, I always have some inflammation since the onset.
I plan to look into the timing of this with my doctor, but I took a lot of antibiotics with sinus infection followed by surgery and I’m not sure how long but shortly after is when I began showing symptoms of UC. When I think about my childhood I may always have had weird gut flora, lots of constipation and stress related diarrhea, IBS? I did consult doctors several times but they were never helpful, just told me to take stool softeners and/or fiber and never mentioned IBS to me.
Medications / Supplements:
Asacol HD 800 mg 3X2 times a day. Rowasa enemas during flares are very helpful. Multi vitamin, calcium with magnesium, vit c, vit d, probiotics by yogourmet, fish oil capsule, estrogen, progesterone.
written by Donna G
submitted in the colitis venting area
57 year old female diagnosed with mild case of UC in 1996, have had regular colonoscopies for the last 10 years
Hi Donna,
Once again, as with many of our stories on the site, antibiotics played a part in your UC. Same here. Also, what you say about having ‘weird’ gut flora for a long time rings true in probably a lot of us. Like you, I also forego travel and going out to eat too much. I like my own bathroom!
I am also eagerly awaiting some positive results with FTs…my doctor just told me on Friday that they only use FTs on c-diff and that there was no research being done on UC…that just shows his lack of knowledge. In the next breath he was telling me that synthetic FTs without the ‘yuk’ factor are also on the horizon…I wonder if he knows that he is talking out both sides of his mouth??
I am not under any false hope that FTs may only work for awhile, and will need to be re administered as necessary, but I am so okay with that. I would rather go all natural than to take any of the meds used for UC…any day!
Cheers, and thank you for your post. It was fab!!
:)
Hi Bev,
Thank you for your post. I would like to ask you a couple of questions. I began eating SCD about 2 months ago and would like to stop medication, as I said I am in remission. Do you remember how long you waited to stop your medication? I am only on asacol which I know isn’t a drug with a lot of side affects but I still want off and I know my doctor will be discouraging of that so I wanted to ask others about their experience. Also I think I have seen your name in alternative drugs, can you tell me what you are currently taking and which probiotic you are using?
Yes you would think that GI doctors would want to stay current on research being done on UC. There is currently a research project on FT being done in Canada with 120 UC patients, preliminary results will be published in February and the project will culminate one year from this January.
Donna
I basically just stopped it…I was on 12 asacol per day. When the probiotic kicked in (which really took less than a week), I felt so good that I figured I’d just stop taking one asacol per day until I was down to nothing, but after a few days, I just stopped it…with NO bad effects at all. Quite the opposite, actually! The asacol was making me feel worse, instead of better in any way. 13 straight years on that stuff, and I wasn’t aware that whole time that it was the asacol, and not the UC itself that was making me so much more ill.
I use ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. Big thing is, it matters when and how you take it. I take it first think upon waking in the morning with water on a completely empty stomach, and then no eating or drinking anything other than water for at least half an hour…I go more than an hour because I exercise in the morning before I eat anything
As for the FTs…I will be the first in line…even if I have to do them monthly, weekly, or daily!
Hi Bev,
Okay, good to know. Do you eat exclusively SCD? How long have you been off of asacol? What symptoms of UC have you experienced since being off of your medication? Thank you for the probiotic recommendation, I will get some and use it like you are saying. I feel good on this diet, I often felt light headed when I was hungry and now that sensation is gone and my intestines feel more settled in general. I would like to see what it feels like to be off of the asacol. How did your GI doctor respond to your going off your meds? I will need to face that in February when I see my new GI.
Donna
Donna, I have never been on any ‘diet’. I am very fortunate that way. I eat whatever I want to.
I believe that UC has a nasty way of getting around everything we try to treat it with, whether it be meds or natural. I was completely in remission until I decided to get the flu shot this year and all hell broke loose again, UC-wise, namely blood, cramping, urgency, etc. I got it under control by doubling up on the probiotic, one in the am and one at bedtime, however, I have not been able to gain ‘complete’ remission again.
I do know this, however…meds do not agree with me. I felt much worse, and my ‘flares’ were much more intense in every way, while on meds. I have vowed never to take them again.
Whether I would still be 100% had I not gotten the flu shot is something that I do not know. Would the UC have ‘figured out’ how to get around the natural stuff too? Maybe. I do know that I am a stronger, more confident me in my UC, now that I am off the meds and trying to figure stuff out all on my own! I am no longer fearful or afraid of UC. It is a learning curve, all the time. I believe in myself and feel that I have more knowledge about UC than the doctors seem to!! That’s enough for me:)
Hi Bev,
Interesting, so you don’t think diet plays a role for you? I have experimented with eliminating foods in the past and I would have to say that strictly following SCD has removed my cravings for “bad foods” and made good food taste better to me. I do think I feel better in more of a general way even if it isn’t helping my UC directly. Do you use other natural products, anti-inflammatory things like turmeric or something else?
Thank you so much for the dialogue, nice to be connected with others in the same situation. I value your comments greatly. I too have lost my fear of the illness and that was a huge milestone for me.
Donna
Well, Donna, let me clarify…when I am in remission diet plays absolutely no role, FOR ME, at least. I can literally eat anything at all. When in a flare, however, certain things ‘hurt’ me more, for sure. Sugar, wheat…things like that make me bleed more and ‘go’ a lot faster!
I believe that diet plays a huge factor, in one way or another, for all of us:)
Oh, and yes, I also use L-glutamine (for tissue, or colon specifically, healing), astaxanthin (an anti inflammatory), and vitamin D.
Thank you Bev. I was thinking about the flu shot giving you a flare, taxing your immune system I suppose, that is too bad, hope you get back to normal very soon. Appreciate your input here.
Thank you Donna. I am trying like crazy to attain that wonderful place where I was before I got the immunization. If not, it certainly will not be the end of the world…not by a long shot! I’m just happy in the fact that I feel like I can deal with whatever comes.
Cheers:)
Donna,
I was part of the UW FMT trial. I did respond to the treatment and experienced a remission that lasted several months. Once I flared again I began at home FMT therapy and it has been mostly effective. It is one more arrow in our arsenal to combat this disease. It is not perfect or as effective a treatment as it is for C. diff.
I have had UC for 40 years and am a woman in my 60’s. I follow the SCD diet and have for years. I also take Rx medications and VSL#3.
You mentioned that you are in the Seattle area and I think you may be interested in a clinical trial that will take place at Virginia Mason using pig whipworms. They are currently recruiting volunteers:
http://www.clinicaltrials.gov/ct2/show/study/NCT01953354?term=ulcerative+colitis+and+seattle&rank=20
Wishing you better health.
Dear J,
Really glad to hear from you, I had read your story, that’s how I found out about the UC FMT research at UW. I’m sorry to hear that FT hasn’t been completely successful for you, for some people it does seem to be, what a mystery this illness is, don’t you think? I would like to know what medications you are currently taking and would love to hear a follow up to your experimentation with FT at home and how your health has been sense you began, how long you’ve been doing it, how often, if you think the probiotics and diet help you very much, anything you can tell me. I’m following SCD and beginning to wean off of my asacol. I’m taking the yogourmet probiotic but I’m researching the other products on the market to decide if I want to try another. Thanks again.
Donna
Dear J,
Oh and thank you for the information on the clinical trials being done at Virginia Mason, I have read about pig whip worm experimentation being done for several years. I wonder if they will take someone currently in remission, I guess I’ll give them a call.
Donna
Donna,
Donna,
Is there a way I can contact you privately to answer some of your questions? Who knows, we might be neighbors.
gagnerdonna@gmail.com, I’ll look forward to hearing from you!
i,ve tears in my eyes while reading ur story….i am 34….is my life be like ur,s ? isolated ,introvert?ppl really don’t understand this horrible illness.