Severe ulcerative colitis not being helped by steroids

Hi Everyone.

I'm here on behalf of my husband who spends no time on the web. He calls me his research assistant. I hope no one minds.

Anyway, my husband was diagnosed with ulcerative colitis 5 years ago. As far as I know, it involves the entire colon. At his first flare up and diagnosis he was given sulfasalazine and responded well.

His second flare up occurred a year later and he was given Prednisone 40 mg a day for 14 days with a 5-mg taper each week. This worked well and he went into remission. He was switched at that time to Asacol (he didn't like taking sulfasalazine 4 times a day.)

He had another minor flare up not treated with steroids 9 months later.

Now, a little over a year after the minor flare up he's having a major one. He was given Flagyl for 7 days and Prednisone 40 mg a day for 14 days with a taper of 5 mg each week. He's had no improvement whatsoever with the steroids this time. In fact, his flare up has gotten worse. He also has bronchitis now which his doctor says he can't have antibiotics. He's covered in a rash, but it's apparently ringworm and not the type that's consistent with Crohn's (his GI has seen it twice and started him on a medication for fungus but I can't remember the name.)

Anyway, my question to all of you is, if steroids aren't working at all, what are his options? Also, his flare up is really getting bad (at least from what I can see - meaning he's going 20 times a day and has a lot of red blood) and he's getting really tired. His tummy is very sore and he's also nauseous. Is this normal.. the nausea? When should I send him to the ER? I know these are a lot of questions but when I look at Google I find terrifying things like toxic megacolon and cancer and I'd rather just ask other folks who have the disease.

Thanks in advance

Sarah

Oh wow, your husband is JUST I was 5 years ago ... Ringworm and all (also had athlete's foot, ringworm in scalp, and lung infection that spread to my pericardium/heart, yuck). I was on 5ASAs, Flagyl, Prednisone (60mg, then 40mg for a while until tapering), some other UC drug (which I now forget since I was so delirious from blood loss at the time), and multiple drugs for the ringworm ... Nizoral/Ketoconazole and Diflucan were the oral drugs I remember, the creams did nothing.

After the drugs stopped working and the bloody D continued at 20-30X per day, the doctors wanted to remove my colon. I decided I was finished with the doctors after they refused to consider the benefits of alternative treatments or diet modifications. I didn't step foot into a G.I. office after that for 5 years, fathered 2 kids, got promoted at work, started running, and never felt better. Here's was my approach:


Immediately (the day I last left the doctor's office):

- Slept/rested. A LOT

- Went on a water-only fast for first 4 days ... I felt that my body was rejecting food, not itself. It's hard to poop 20X a day if you're not eating. This gave my colon a rest, and I mostly slept. My heart infection made it easier to perform the fast since I was already laid up and off work. I had given up on Docs, so I didn't discuss this with mine. While difficult, it was IMMENSELY helpful ... the first day is the toughest, after that I felt a bit out of it, but very in touch with my surroundings. Almost a spiritual experience. After I came off the fast, I still had D, but the blood had subsided and the frequency was about 5-10/day (which at the time was a miracle for me). Once I started implementing other diet changes, things got even better


For next few years:

- Cut all gluten and most dairy from my diet, started eating more low carb cooked veggies

- Added a sugar-free psyllium-based fiber supplement to my diet (initially pure powdered psyllium fiber from the internet)

- Cut back on sugars/carbs (but did not eliminate them entirely)

- Added a good probiotic (Culturelle worked well for me) and took 9 1200mg fish oil capsules daily

- Fast for 24-48 hours every month or two.


This approach worked really well for 5 years, although near the end of the 5 years (this past November), I found that I needed to eliminate almost all carbs to retain the same results. Also, within the first year my ringworm slowly cleared up on its own, I had 2-3 solid bathroom trips per day, and no stomach pain.


Now, here's what I found interesting ... I decided to get a colonoscopy 2 months ago to make sure I didn't have any growths or other issues (it had been over 5 years). The doctor said my colon still showed signs of inflammation, although it was much better than before. He recommended that I restart drugs to see if that would allow me to expand my diet. I figured "why not", and told him I'd try for 12 weeks (I'm not at 6 weeks). I have followed his recommendations of Asacol and now Entocort while eating more carbs/sugars (but no wheat and little dairy). The interesting part is that the drugs seem to be doing nothing as my D has come back (~10X per day) ... and so has my long-thought-gone Ringworm!!!

Pred used to work wonders for me too, then it stopped, I was only ever on it a handful of times and the times were well spread out from one another and yet pred just stopped working it's magic on me all together...it was the only med I could take that worked (and I was one of the rare cases that suffered little to no side effects from it so it was a real bummer that it stopped working for me)...because I'm either allergic or non-responsive to all other IBD meds, I had to put my skeptisism aside and go the natural route and lucky for me it's been working fairly decent for the last 5 yrs, I also altered my diet (no junk, refined sugar/artificial sweetners, processed foods/beverages, animal fats, caffeine) and exercise daily.

As I mentioned in another post this is what I take...

bee propolis
omegas 3-6-9
fibre supplements
chamomile tea
primadophilus reuteri probiotic made by natures way
vitamin C and vitamin A

A healthy diet (no refined sugar/artificial sweetners, processed foods/beverages, caffeine, animal fats) regular daily exercise.

And I went from having 30+ bloddy BM's/day with lots of lower back pain and mucus, excessive gas and bloating to an average of 5 formed BM's/day, no bleeding, mucus, lower back pain, bloating and very little gas all on a daily basis.

Full remission for me would be one formed BM/day with no freuency *hence the 5/day average that I presently have been having since finding the above regiment to help me*, my other main issue I still have is urgency but with my complications (as mentioned above) I'm still doing better than I was before adding those supplements, altering diet and adding daily exercise.

Just know that what works for some doesn't work for all and combinations of things usually work better than just one thing (like only taking a probiotic and nothing eles).

:)

There are still a LOT of medication options out there. I'd go to www.ccfa.org to look. They've got a lot of great medication information. Hope you find something that works soon!

The best that I can suggest is that you google each to find out indepth info on them all, I end up writing book-long post when I go into detail on them each and I still end up forgetting to put all the pertinant info down LOL.

:)

I agree with bluclassring about the emergency room. I ended up hospitalized by going 20to 40 times a day. I was dehydrated and vomiting and everything. Personally I wouldn't try any diet besides what he can handle at this point. If hospitalized, you may want to try a diet after he gets out.