Can't get out of a severe flare

I was diagnosed with UC in 2010 and went into my first flare which is very severe and ongoing since last November.  I lost about 30 pounds in the hospital in a week, down to 95, and 5'6".  I have had 10 blood transfusions.  Tried the Makers Diet but decided the SCD seems better for ulcerative colitis.  I cannot gain weight and my doctor wants me to have surgery because the bleeding just won't let up and I think the ER is sick of me showing up begging for blood.  I want to get well and never have surgery but cannot stop the bleeding and diarrhea no matter what I do.  I currently take remacade 10mg, 40mg predinisone daily, and began imuron about 2 weeks ago.  Anyone out there with this severe of a problem that could offer any help on how to get any weight to stick, even just a few pounds would be amazing.  How long in a severe case does it take for the SCD diet to start to work?  Anyone had imuron work in a 6 week period like I have heard?  Remacade is not working either.  Desperate for help-  thanks

Yes why are you so against surgery? Just from what I read, if I were you I'd be begging for surgery. But I hope you get better with meds if that is what you really want! Sorry I don't have any advice for you. Get well soon!

HOw long have you been flaring? Can you check into a hospital? Maybe they can put you on total parenteral nutrition and give you IV steroids. This is life threatening what you are going through.

I agree, the SCD is not a fast cure. It probably would be depending on your state of health and well-being, but I wouldn't rely on it predominantly to get you to remission. It sounds like your case, there is a lot of damage to your colon. It's going to take some time to heal that. In my case, my flare was severe enough to warrant a visit to the ER for fluids and because the prednisone was not working for two weeks and I was still going 15-20x/day. I really wanted to be admitted to the hospital for IV steroids to get it under control, but no such luck. They sent me home. I just had to stick to the diet stubbornly, and take my meds. I'm currently taking medical leave from my job as a pharmacist, so that's helps. I'm off the prednisone now, but admittedly I still have some cramping every time I have a bowel movement. The good news is my bowel movements are formed, but I still see blood from time to time. There is improvement but this is after 4 weeks. I still have some more healing to go.

I too like you want to keep my colon, and live a productive life. I wish you well.

thank you so much for all of your replies. I am going to give you all my details next so if you see something that you can add a suggestion you have all the information. I am against surgery because I want my life, my whole life. I am suffering but hopefully I can succeed at restoring my life like so many of you.

I starting into the severe flare mid-November 2010. I have been in and out of the hospital 6 times since then and am going to the hospital today because my blood is too low and I am within a day or two of a remacaide infusion. I have had 10 units of blood receiving 4 blood transfusions. Today will be number 5.

I am 5'6' and lost about 30 pounds in the hospital at the beginning of the flare. I am around 95 pounds and have been around this since the flare began but am worried that losing more will send me into the hospital since I am wasting in size. Here are the drugs I am taking;

Remacaide infusion 10mg every 4 weeks
Started imuron now but only 1 1/2 weeks ago--- the doctor says minimum 6 weeks to see any change, so we continue with the Remacaide to try to stop the flare with 2 more infusions
40mg predisone daily-- when hospitalized they give me an IV of 160mg for a day or two
12-20 stools per day, all runny all bloody, sometimes more blood than others but not normal
Developing a mild fever, I think from the remaicade, which I have to take 500mg tylenol once daily maybe twice, then it goes away for 24 hours
I use 325 mg percocet 1 to 3 times a day for pain and a nausea pill zofran-

As for diet and supplements, this is my list
Started the vitamin E enema a week ago and up to 8000 IU with 1 1/2 tablespoon aloe vera gel each day-- try to hold it as long as possible
Fish oil, glutamine, NAG, Vitamin A, GI caps- Roberts Formula, stopped VSL #3 and now use the 24-30 hour yogurt now and then throughout the day-- used primal defense ultra- no difference. Yogurt seems as good as anything and I use it all the time made from organic 1/2 and 1/2 cow milk. Goat milk has no calories and I really need the calories desperately. I also take ALA, goldenseal in 7 day runs stop a week or two and repeat. I drink tea made of mullein leaf, rosehips, rooibos, peppermint, and chamomile.

Diet- eat all I can using only the SCD diet as of 1 1/2 weeks or 2 ago. I am not in a phase since the intro is not good for me although I did that too and now just go easy eating only easier foods for the most part. I use the yogurt in smoothies and add some raw almond butter. I eat a soup made with range fed cow bones and some vegetables and use this once each day. I also make it with range chicken. I eat salmon, perch and shrimp once in a while. I do not eat any grains of any kinds, not even gluten free-- none. I am gluten free but was all along for the last 4 years. I have made the 24 whipped cream yogurt and whipped it, add blueberries or strawberries blended, over the top like a desert once a day. I use small amounts of honey only, sometime stevia. I eat organic eggs with the yogurt, and hard boiled eggs using Spectrum mao made with flaxseed oil and organic. For meat I have eaten lamb rarely, a little hamburger, but mostly salmon. My main vegetables are zucchini, spinach, green beans, and bell pepper. I make juice and drink it twice to four times a day using this combination

red cabbage 4 oz., add kale, spinach, celery, cucumber, ginger root, parsley, cilantro- about 8 oz. each glass between eating

I also use the ultraInflamax protein 2-3 times daily, spice flavor is good. This predigested although it has rice protein, it is broken down and also contains all the nutrients for ulcerative colitis. I went off of it for a week. No difference except I lost 3 pounds. Because it is pre-digested I think makes it ok either way.

So everybody- anyone see anything to add or try. Since I have recently changed my diet to the SCD a couple weeks ago maybe I can see something change in a while in some way--- any way would be good.

Oh yeh- I also see a chiropractor that is working on taking pressure off the nerve that goes directly to my colon 2-3 times a week as I am able to travel which isn't as often as I would want

You're right, your UC is severe. I was not even as sick as you, no blood transfusions, yet I opted for surgery. Why? Because I got to the point where I realized that medications and diet weren't going to improve my situation. I think you are in denial as to how sick you are. Don't worry, most UCers live in denial when symptoms are bad.

I had jpouch surgery 10 years ago. Best decision of my life. No more cycles of flares, no more restricted diets, no more medication. I hike and backpack and live a very full life. I have a whole life, I just don't have a colon. I wouldn't trade my life today with a jpouch for a life with a colon for anything. But I understand your concern, no one wants to have surgery and for a long time I didn't want it either.

Best of luck to you and I hope you can find that magic combination to go into remission.

Sue

Well living with my Jpouch now and comparing it to before dealing with UC I consider it a cure. Not everyone gets pouchitis. We always tend to hear the bad things about this surgery because the people talking about it are in need of help while the majority of people who have a J pouch are out enjoying life.

My sister and my uncle also had surgery...my sis 19 years ago and my uncle 10 years ago (yup seems to run in my family) and they have never even once had pouchitis or any problems for that matter.

If you truly have UC and not Crohns...remove the colon and you remove the problem. If you have Crohns, well that's a different story...this surgery is not a good option usually.

BTW, since starting the vitamin E enema a week ago and working up to 8000 IU, the stool number has gone from about 18-20 at worst to 8, just still bloody and all but decreasing and the remacaide infusion is in 3 days. Imuron? enema? who knows- anyone else have this happen to them?

NatWell,

You are wrong. Most of those that get chronic pouchitis really have Crohn's and not UC. Pouchitis onset has nothing to do with the severity of UC. I had severe UC and in 10 years have only had pouchitis once. Very much a non-event.

Oh, and I am cured. I have not had any other UC or auto-immune incidents since surgery 10 years ago.

Sue

Believe me, the severity of UC has nothing to do with if you get pouchitis or not. As Sue pointed out it's the folks that actually have Crohns, not UC, and have a J pouch that experience problems. Because Crohns effects the entire digestive system and as you already know, UC is just the colon. I made absolutly sure (tons of tests) before I had the surgery that I did indeed have UC and not Crohns. Like I said in my earlier post, for people with Crohns, surgery is not really a good option.

You will know when you are ready for surgery. It took me two years to come to terms with it and do it. You have to be ready and please don't be misinformed about it. If the time comes, talk to a reputable surgeon who has performed many J pouch surgeries. The expertise of the surgeon is key. Good luck.

Marianne

the mesalamine enemas did not work at all in the hospital over an 8 day period, also to get a prescrip for them is out of our price range and insurance is of no benefit since I only have major medical. Have tried the cortisone enemas and can tell no difference using them, that is why I am trying the vitamin e type--- anyone use these? any benefit that you found?

I am sorry to hear how you are suffering so much, no one will question your decision if you opt for surgery.

You have tried meds, diet, and supplements but there might be some changes you can still make. Your diet has been gluten-free but what if you are also allergic to dairy? Then your daily yogurt may not be helping you. And the SCD diet may not have all the answers either. My triggering foods included such SCD-legal foods as shellfish, kale, plums, and as I very recently discovered, hummus. Hummus is mashed chickpeas mixed with spices. Maybe it is the chickpeas or maybe the spices, but it is bad for me.

Maybe the Elemental Diet or perhaps the Elimination Diet might help to isolate any triggering foods for you, but I hate to recommend another diet since you have already lost so much weight.

There may be some options in the meds department also. Diet did not help end my flare but by blind, stupid luck I also developed a painful perianal abscess. The doctor prescribed Flagyl for it which miraculously put me into remission. It sounded ridiculous until I discovered antibiotics like Flagyl are a common treatment for Crohn’s. Search the threads by Hailey’s Letter and you will discover that others with UC have also benefited from antibiotics.

I feel unqualified to offer any advice to you since what you are going through is much worse than anything I have experienced.

Hi,

I was in the same position that you are in a few years ago. I didn't want the surgery, for me it was the pregnancy problems (many women have had problems getting pregnant who have had their colon taken out) I was 18 at the time and decided that I wanted kids, and didnt want problems conceiving.

What saved me was switching from Remicade to Humira. Humira for me was a last option next to the surgery and it work!!! Many doctors are reluctant to try Humira because it is a newer drug and there could be harmful side affects that are as of now unknown. Am still on the Humira, and can tell you I havent seen anything bad, as opposed to the Remicade which I got severe migraines from.

Another thing that you could try to stop the bleeding, which works for me when I flare is Cortifoam, which is rectal foam. Its a way to get the steriods to your infected areas quicker and fast, works great for me.

As for gaining weight I cant offer much help, um for me dairy really irritates my colon when I'm flaring so I usually try to stay away from dairy and hard fibers during a flare. A great dish that is really easy to cook and never irritates me is garlic pasta, which is basically just chopped garlic, olive oil, and pasta.

Hope some of this information helps
Jordan