Hi Everyone, I’m a 51 yo female and was diagnosed with UC when I was 34. Like you all, I’ve had many ups and downs with the disease.
Ulcerative Colitis Symptoms Right Now:
Currently coming out of a flare.
Have had bleeding, loose stools, gas, cramping, bloating
I never thought I’d write but I feel I need to let others know about something that SEEMS to be working for me.
I have moderate left sided UC with proctitis. I haven’t had a flare in about 4-5 years. My flares are usually stress related which leads me to eat poorly, which leads to bad places with my UC.
My current flare started to show up with mucus in the stool- always the first sign for me – in February 2017. By the middle of June the flare was in full swing. I take Apriso daily as my maintenance med, my GI. put me on Budesonide, Canasa suppositories and Proctofoam. Nothing was working.
My MO is to usually to not eat too much when all this is going on…but that only lasts so long till I start to feel like I’m going to pass out. I know I have a problem when I consider it a victory that I ate a hard boiled egg and two saltines!
I have tried all kinds of alternative diets, and treatments, some helped some didn’t. Because I hadn’t had a flare in a while I had honestly forgotten how terrible they can be, and this one was making up for lost time!
I had had a colonoscopy in May and my GI said it was only my rectum that was inflamed. Well this was one unhappy rectum – cramping, nausea, bloody loose stool, urgency – the whole deal.
In the beginning of June my GI put me on predisone. Started at 60mg From my previous times taking it I seemed to remember it not making me feel that bad, in fact I seem to remember prednisone giving me lots of energy and feeling OK -besides the moon face…well not this time….it’s been awful.
After 2- 3 week of tapering down on the prednisone, still bloody stools, still feeling bad, urgency etc.
I started considering the aloe plant I have and whether I could just get some of that great healing stuff right into the rectum…I also thought about vitamin E…could I put a vitamin E gel tab up there? I had no idea so after quite a while searching for info. I did come across some of the vitamin E info that I’ve seen on this website and others. I was skeptical but it seemed to make sense…the inflammation is right there in the rectum..let’s get to the specific area! I read the posts from the “Sheldon guy” at curezone but was hesitant because it honestly looked a little strange.
Anyhow, I sent my hubby out for vit E- just regular ol’ NatureMade brand. I also got one of the nasal aspirator bulbs that you use to clear out a baby’s nose, and distilled water and I tried it. I followed his instructions on the curezone website of using 1 and half tlbsp of distilled water and the first night I squeezed 2 vit gel tabs into the water, sucked it into the the aspirator and inserted in my rectum. I am still on the Canasa suppositories so I also squeezed out another vit E tab on to my suppository and inserted the vit E covered suppository into the rectum. (kinda messy but I kept a towel handy). I was able to hold it all night.
Next morning, my very soft stools were BROWN. They had very little blood on them, no blood on the toilet paper.
Had the predinose suddenly started to really kick in after 3 weeks? Maybe….but the only thing that changed in my rectum’s life was the injection of the vit E at bedtime. I was amazed.
I have been using the vit E at bedtime every night for the past month….and I have gradually increased my amount to 5 tabs in the water – each gel tab is (1000 IU) and one gel tab squeezed onto the suppository. My stools have become normal sized, brown, no urgency, no cramping and down from 5-8 bathroom visits to 1-2 for the day (normal for me). There are still a few tiny streaks of blood on the stool occasionally but I am so excited at the progress I am seeing.
I have not been doing the diet on the curezone, just eating what works for me and also I don’t even think I’m taking the “best” vitamin E- I’m using the dl-alpha version which I’ve read is the synthetic Vit E and I think on the curezone website they recommend the all natural Vit E not synthetic. I didn’t buy the enema he recommended either.
The reason for pointing this out is to let others know that even though I didn’t really follow the procedures 100% I have seen really promising results.
I’m headed in for a follow up with my GI next week and I will be telling him about this, I’ll be interested to hear what he thinks.
I hope this info has been helpful to someone. I was feeling discouraged and getting concerned I’d have to go on even worse meds than prednisone.
It’s a small investment and actually kind of a pain to be doing it every night, but I’m hopeful there is really good healing going on.
I hope this helps someone else!
When I’m in non flare mode my daily med is Apriso.
I also take B Complex, iron, Vit D3 4000IU, Omega 3’s, Probiotics, Intestinew, Metamucil 2x/day
Currently coming out of a flare I am also on 15 mg prednisone, Canasa suppository at night, and Procotofoam in morning
written by Liz
submitted in the colitis venting area
I love nature, reading, spending time with my family. I’m a Christian and my faith in Jesus is my strength in the good times and the bad!
Thank you for this information! I am 59 and have had UC for 8 years. I have done well with Apriso and the SCD diet. I am dealing with a family member with sudden mental illness and the stress has been over the top. I have been in a flare up for several months and can’t get better. Usceris has worked in the past, but not this time. I went on Immuran which I have avoided for years successfully and it is not working. I am heading for the bigger drugs and want to avoid them at all costs. I have done everything naturally in the past and it has worked. Supplements, FMT and nicotine patches. My doctor doesn’t want to put me on predizone because of the later in life side effects. Also, he says if I have to go to a hospital that is what they will put me on very high doses.
I think I rather try a little predizone than have to to Ramicade or Humria. This vitamin D sounds intreging. I know that vitamin D in the past helps heal blisters more quickly so what the heck?
Correction Vitamin E.
Hi: I’ve had UC since I was 18. I am 56 now. Was on drugs of all sorts for years. Finally one day the doc says I should probably have my colon removed because of the higher possibility of colon cancer. I said no way and began my search for alternatives. About 15 years ago I started the SCD diet strictly which kept me in remission for many years. I began to cheat a little here and there and then started having flares occasionally. My last flare lasted 6 months because I didn’t have insurance and couldn’t afford the meds…….I’m sure you’ve heard of Dr. Axe and he recommends l-glutamine powder for gut health and ulcers. I gave it a try and within 5 days my bleeding stopped! I’ve been taking that daily for the last year with no problems at all!
Hope this works. Let me know.
That is so crazy! I, too, tried the nicotine patches. Reminded of when I started smoking for the first time nearly 40 years ago. Nauseated, dizzy, etc. I only smoked for about a year, btw. But yeah, I thought I had a lightbulb moment. You know, so many people say they started having problems after they stopped smoking, so I thought that might be the answer. Sadly, no. And I stopped after two weeks. What I have found that works: A banana, hard boiled eggs, yellow squash with the skin peeled, raw apples without the skin, baked chicken with the skin removed after cooking, salmon, cod, halibut is really good. NO: dairy, beef, legumes, nuts, lettuce, tomatoes. Grilled chicken breast. AND they make dairy free yogurt now, but I still have to stay away from blueberries, but strawberries are ok. And no watermelon. :^( I have lost 45 pounds in the past 1-1/2 years, but I wish I could have lost it another way. STRESS is the WORST, so try to do things to keep it together, and avoid it as much as possible. I’m still dealing with the after-effects of Hurricane Harvey, I have lost 20 pounds just from that. I would have to say that I’m in remission right now, had a scare right after the hurricane bc I had strained my back. I knew not to take ibuprofen, but was always told Tylenol was ok. Well, it is, but I was taking extra strength Tylenol, 2 caps twice a day. No Bueno. I got very very sick, thought for sure that I was going to wind up in the hospital. My UC doc is fantastic, she was really worried, I got tested for every GI disease under the sun (20+) because I had been exposed to the toxic water during Harvey -(I had to be evacuated via airboat from our home)- 100% clean. Then I remembered about the ES Tylenol. I stopped taking it immediately and the next day I was sooooo much better! My UC doc prescribed me Celebrex if I need something like that, I don’t normally need anything, but glad that I have it if I need it. Hard lesson learned, for sure! Still taking Lialda- 2 tablets, twice a day, Uceris 9 mg, and VSL#3, an OTC probiotic (refrigerated, so you have to go to the pharmacist to get it- I take the caps- about $49.99 for 60, and I take about 3-4 a day. No prednisone for the past 6 months after taking it for over a year, started at 30mg and weaned down very slowly to 5mg, then had to start again at 10mg and all the way down to 2.5mg for about 2 weeks. It is a fantastic drug, but a double edged sword. I’m incredibly sensitive to it, all UC symptoms disappear and everything is normal with just a very small dose, but I am really wired on it, restless, just could not stand the way it made me feel. Such a shame.
That, and the list of side effects is literally as long as your arm.
Liz…very interesting about the vitamin E. you mention you use cortifoam…why not just use that syringe for the Vitamin E insertion? It has to be easier than an aspirator,
Good luck to you! Glad to hear you are on the upswing. Hope the doctor visit goes well
This is very interesting! I’m 59 and have had UC since 1984. I am seriously considering trying the vitamin E method… if/when I do, I’ll report back. Thanks for sharing, Liz.
Sorry, forgot to say that I’m on Sulfasalazine, with occasional use of Pentasa Suppositories when I have a Flare.
Thanks lots for info. I’m 56 and have had uc since my late 20s I have tried so many diets and get so discouraged when I work so hard and they dont work. But if I limit carbs that helps. No energy though. I’m on Pentasa 2,4xday-canasa 1xday And mercapepurine 3xday. Hospitalized once for 3 weeks. Terrible. Flare every time weather changes more than stressful situations. Also hate to say but I smoke and have quit so many times which quitting also leads to flare. Currently the inflammation is in and little above rectum. Just ordered vit e supp. And hoping they work. Praying they work. So tired of this as I’m sure we all are.
Thanks for the post. While I have had symptoms of ulcerative colitis, it was not until a routine colonoscopy age 50 was very abnormal that spurred testing for the diagnosis. That was about four months ago. I am in the process of putting together a team of doctors, educating myself, and making major dietary changes. I started taking Spirulina, following “Wahl’s Protocol” abput six weeks ago and that triggered a major flareup and I am now recovering. I have had so much pain in my anus and the diagnosing GI doctor prescribed Canasa. I have used it on a couple of occasions but it burns, horribly, and it does not feel like it is the right medication for the inflamed tissue at my anus. I had on my own found vitamin E suppositories and they give so much relief I just have not known if they actually were going to lead toward healing and have been worried about negative impact. I have use neither consistently. I just know that vitamin E is soothing and the Canasa leaves me in burning pain. Thank you. I’m going to share this information with my new doctor.
Ask for cortifoam enemas….has cortisone in it and is a foam so very light and healing