Hi everyone... I've been lurking these forums for months now, and I've finally decided to take the dive and join. I partly want to share my complicated journey with you all, and also maybe get some suggestions and insights. I write to you from bed, where I have more or less resided for a couple of months now. My situation is not so good. I've been diagnosed with ulcerative colitis in the last 12 inches of my bowel, more severe in the rectal area. I just want to note that the initial finding was patchy inflammation all along my colon, and since then I've had inflammation in my small intestine, stomach, and even my throat, so I suspect there is also undiagnosed Crohn's happening. I'm sure I don't have to tell you all the kind of hell this has been. It's my first flare and I have been struggling with it on all levels. It may interest you to know that I'm also a holistic health practitioner... I practice acupuncture, herbalism (western and eastern), and different modalities. With all my knowledge, I was not able to help myself as the acute phase set in. It just goes to show we always have things to learn about
At the beginning of this year my long term relationship ended, and the stress and grief of that did a number on my gut, so there is definitely an emotional component to this, one that I have been working on. Mid January I got a colonoscopy because for a couple of years now I've had low level inflammation symptoms in my rectum, like bleeding, urgency, etc. A few weeks later in February I ate some bad good and my first ever major flare began. I ended up in the emergency room and tests revealed it was a fulminating flare of ulcerative colitis, about
as extreme as it could get.
I spent a month in the hospital and my condition was horribly
mismanaged. I was given very high dose prednisone which didn't really resolve anything, along with mesalamines which caused massive bleeding even from my stomach. My food allergies were ignored and I was given energy shakes (Boost, Ensure) to give me quick calories, but they made my flare 10x worse. The hospital basically ignored all my dietary needs claiming that diet has nothing to do with colitis *eye roll*. I eventually received Remicade, but the hospital kept doing so many interventions that irritated my colon that it created the appearance the Remicade wasn't working, but it was. So they cut me off of it, to my despair. All the lying around in bed combined with high dose prednisone and lack of proper food made my weight drop from 175lbs (80kg) to my absolute survivable base weight of 128lbs (58kg), where I currently am at.
I live in Canada by the way, which is very pro-surgery for colitis because the chemotherapy drugs cost the system more over the long term than doing the immediate surgery. I was badgered daily to receive a colectomy, even though the MRI showed my bowel wall was in tact and there was no immediate thread of complications. It was very traumatic and frustrating on many levels.
The hospital eventually discharged me once I could take medications orally and keep food down, but they sent me home with no discharge plan. The first couple of weeks were hell. I had good friends come and live with me, and they were freaked out. The medical system has cut me off from all auxillary treatments and will only offer me surgery, even though I've made it crystal clear that at age 30 I do not want a colostomy, and all the research I've done indicates that a first time flare, if managed properly, is not the time to introduce surgery.
The last time I saw my GI doctor, he told me I would be dead within weeks. He was wrong, it's now been almost two months and I'm feeling better. My experience by and large with modern doctors is that they use fear to coerce people, and I did not appreciate it. It also just so happened that he had a personal friend who is a colorectal surgeon that he could refer me to *eye roll*. Gee, no bias there! Nonetheless, some of his concerns were valid. When he last saw me I was 128lbs, and my c-reactive protein was at 70 (normal is under 40), so my inflammation was off the scale. I suspect it's a lot better now, blood work is pending.
I've been at home mostly bed ridden for a couple of months. There has been very slow progress. I had HUGE hemorrhoids at the beginning that prevented me from sitting up. Due to having no butt cheeks anymore (all atrophied), when I sit I am sitting directly on my anus, which pushes hemorrhoid blood up into the rectum and triggers bloody BMs. The hemorrhoids are gone now though. I had to wear diapers when I first got home, now I don't... continence has returned. No food was working really. It was really bad back then.
Where I'm at now: my body weight is the same but it's because I've only been able to relearn how to walk recently. I'm able to go for walks around the block now with the help of a walking cane, and I can drive short distances in my car. I can eat a handful of certain foods. Most recently I've begun aspects of the GAPS diet, but it's been hard to be too restrictive. The thing that got me out of lying in bed all the time was one day I had a food rebellion and ordered gluten free pizza, and made gluten free pancakes, and bacon, and all sorts of "trigger" foods. I took big risks to get substantial calories. My bowels suffered, but my energy level increased greatly. Now I am more mobile, at least.
I despair because although I seem to be improving, I always go up and down. One day I'll feel on top of the world, another day I'll feel like my flare is returning. There is definitely a food relationship, but not always. All the alternative health people I've seen feel this is an infection or dysbiosis (gut flora imbalance), and I agree. During my initial flare, it reminded me of the dysentery I contracted when I was in India... same symptoms exactly.
I take prednisone in the evening instead of the morning otherwise I am up all night with diarrhea once the daytime predisone wears off. Lack of sleep did me in more than anything in the beginning. I'm concerned about
my prednisone taper. Once I get to 20mg or lower my flare could come back. On the other hand, I find that it's hard to fully gauge my body's responses to things because it's suppressing symptoms. I find prednisone really evil... it has caused gastritis, severe mood swings, and makes it hard to gain weight. I have the opposite reaction to it of most people... it makes me lose weight, and it helps me sleep. And please don't call me "lucky". I'm a bone rack right now, you can see my ribs and spine and everything. For someone who used to be athletic and have a muscular build, this has been quite devastating.
Here is a list of some stuff I've done. My memory is awful right now so I'll probably not remember it all.
Prednisone (still on it, tapered from 60mg down to 25mg at this time -- taper continues)
Morphine (no longer taking)
Immodium (not currently taking)
- I react badly to pretty much all pharmaceuticals they tried on me. I'd really love to try the off label use of Naltrexone but no doctor here will do it.
Colloidal silver (off and on -- probiotics sometimes cause inflammation)
Daily herbal infusions of licorice root, calendula, nettle, and chamomile
CBD oil (legal where I live, I've had mixed results)
Hemp leaf juice (same as above)
Parasite cleanse consisting of black walnut, clove, wormwood (wreaked havoc with no improvement)
Olive leaf extract (an anti-microbial a naturopath gave me; helped initially then stopped working)
Food grade essential oils of cinnamon, frankinense and chamomile, taken internally (no effect)
Slippery elm and marshmallow root as overnight infusions (helps sooth the lining, but caused massive diarrhea too)
Various TCM herbs, some beneficial effect but nothing substantial
Yunnan Baiyao, a TCM hemostatic remedy that stops bleeding but resolves potential clotting
Bee pollen (ok)
Cherry juice (anti-inflammatory but did not stop the diarrhea)
Bone broth (works well)
Fermented cod liver oil (massive painful, bloody diarrhea, the worst from any supplement)
Supplementary gelatin and collagen (can't tell)
Home brewed kefir (first culture in progress, will see)
Home made sauerkraut (take some of the juice before every meal, helps)
Apple cider vinegar (first thing in the morning with sauerkrat or kefir, helps with low stomach acidity)
Fresh pressed beet, cabbage, carrot, spinach, and carrot juices in various combos and quantities (diarrhea, pain, generally bad results)
Coconut milk with turmeric (painful, bloody diarrhea, though the milk was canned and not home made)
Sublingual B12 (I have injectable form on the way in the mail)
To reiterate... I seem to be improving gradually. The thing that is helping the most right now is bone broths with ferments mixed in (once the broth has cooled a bit). The past couple of days I've been having more symptoms than usual, and even a return of some hemorrhoids, but it's because I tried cooking with ghee and I was using canned coconut milk as a cereal milk. One of them did not sit right.
I adamantly do not want surgery. I know that people can get good results from it, but I just don't want it. So my journey of personal healing continues. This has been such a rollercoaster. The part of this that affects me the most is that it feels like I've been given a big timeout from life. Summer is here and I'm stuck inside, watching the world go by, and hearing about
all my friends' fun adventures that I'm missing out on. Not to mention, the pain, the diarrhea, the weakness, the boredom... it's a lot to handle. I have good determination but even I get down some days. It's been months, after all.
I've read that flares, especially first time flares, can last a very long time. But I read on here people talking about
going to work every day during a flare, or vacationing, or exercising and playing sports. I just don't relate. My severe weight loss combined with the continued inflammation just makes all that seem farcical to me.
The current approach I'm trying is healing the gut lining and taking a lot of home made probiotics. I find commercial ones pretty useless, and found out just a few days ago and they usually consist of separate bacteria powders that have been combined together. The bacteria in the supplements weren't raised together so they have no communal interaction. Also, the weird number you see beside each strain mentioned on the label? That means it's a lab-created bacteria. Companies tend to modify them to survive stomach acid, or perform other functions, but as a result they will never reproduce in your bowel for long. So you have to keep taking them. Home made ferments have no such restrictions. But I digress... I'm following the GAPS theory of the gut, that no particular food or supplement is going to work as long as the lining itself is damaged. And no probiotic bacteria will adhere to it for very long for the same reason. So, seal the gut, repopulate, and the food sensitivities eventually go away. I am SO HOPING this works because I am running out of options!
Thank you for reading. I don't know what I'm really asking for here. Maybe suggestions? I know some of you are going to gasp and say omg please consider surgery? But I never will. Besides, if there's Crohn's as well, the surgery would not spare me future episodes. So I'd like to ask that suggestions be anything but that. I believe my body can heal with the right assistance. Right now I'm looking at fecal transplants. I met three survivors in town recently whose colitis went into permanent remission after getting that done. I've also had an interesting offer to try a hyperbaric chamber, which I might give a go.
The plus side to being in the healing profession is that you're connected to a lot of other healers who have healing approaches from the ridiculous to the sublime. So I get a chance to experiment with many things low cost. As I journey through different approaches I'd love to share the results with you! Fingers crossed :)
Post Edited (Chiron) : 6/11/2015 5:18:25 PM (GMT-6)