Severe ulcerative colitis not being helped by steroids

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help4hubby
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/30/2009 10:51 PM (GMT -6)   
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

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/30/2009 11:10 PM (GMT -6)   
If he's going that often.. and losing so much blood... that's not good at all.. is he ON steroids right now? If he is and he's still having that much trouble.. I'd definitely get help.

Is he eating or drinking anything? I know when I was that sick I couldn't keep anything down.. if that's the case or if he's simply not eating or drinking enough and losing that much fluid... the ER is a good idea.

Don't wait for it to get worse to get help.

Toxic Megacolon would be where he wasn't passing gas or going to the bathroom at all.. his stomach would be distended because everything would be building up in the colon.

I'm sorry he's having such a tough time. OH and don't worry... tons of people are on here just researching and supporting their family members or friends with UC
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 7/31/2009 12:00 AM (GMT -6)   
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!!!
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/31/2009 12:08 AM (GMT -6)   
It's hard to poop 20X a day if you're not eating. I guess that's true, but I was still doin it somehow LOL.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/31/2009 12:28 AM (GMT -6)   
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).
 
:)


My bum is broken....there's a big crack down the middle of it! LOL :)

Post Edited (pb4) : 7/30/2009 11:31:36 PM (GMT-6)


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/31/2009 2:49 AM (GMT -6)   
did he ever try remicade? anyhow, i'm a strong advocate for colon removal...no sense in suffering.
line 1. UC
line 2. Surgery
line 3. Ileostomy
line 4. Stoma
line 5. Anxiety
line 6. Depression
line 7. Comedian
line 8. Frequent forum flyer
line 9. Know it all
line 10. J pouch


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/31/2009 10:57 AM (GMT -6)   
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!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


help4hubby
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/31/2009 7:46 PM (GMT -6)   
Thank you for the responses! He's grateful to know that others out there failed with steroids, too.
 
Mikeman: He hasn't had Remicade yet. He's having a colonoscopy on Tuesday so his doctor can 'see what's going on.' He's also going to undergo some genetic testing to see if he can tolerate another medication. Don't know what that is, but I will be at the appt on Tuesday to talk with the doctor myself.
 
He is resistant to colectomy right now. (His grandfather had colon cancer, a bag and then reversal.) I don't know why he's resistant. Personally, I could care less and will support him, but I do know it's a personal decision.
 
Fruitgirl: Thank you for the web site
 
Pb4: With the supplements you are taking - can you point me to some info regarding those?
 
Luckylindy: You guys sound pretty much the same. His skin is loads better and after some Mucinex his cough is getting much better. I just wish he had some more energy.
 
Sweetmelody: He's getting lots of fluids and foods. He says his desire to eat is really low because he knows what will happen when he eats but at least for now he's eating and drinking. He's off all sugar and soda so it's mostly water and tea.
 
On the vitamin front - would you guys suggest liquid over pill form or are do you all seem to do okay with the pills?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/1/2009 1:40 AM (GMT -6)   
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.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 8/1/2009 1:45 AM (GMT -6)   
It's time for your husband to go to the emergency room!!! He needs to be given IV prednisone to calm his system down, and to stop the inflammation. Yes, and cut out the complex carbohydrates. I suggest the SCD carrot soup recipe to get him some energy.
 
We have no way of knowing, but could his problems be due to a yeast problem.  I had ringworm on my face that since disappeared and I used apple cider vinegar to get rid of it.  You can check out the remedy at earthclinic.com. 

The sad thing is prednisone(a glucocorticoid) contributes to the growth of yeasts/fungi.  That's why you never put hydrocortisone on fungal infections.  It good food for them.....


Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.

Post Edited (blueclassring) : 8/1/2009 12:49:26 AM (GMT-6)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 8/1/2009 6:21 PM (GMT -6)   
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.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :(

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