Does anyone here suffer from Ulcerative Colitis?

[auntAgonist]

Other than prednisone and sulfasalazine what medications if any have worked for you?
I found a study in the JAMA a while back that said VSL#3, a pro-biotic was doing well in the treatment of Crohns and UC.
So far it's really seeming to help my husband. Any one else familiar with it?

[movonne]

1. I don't have it, but a dear friend of mine was just diagnosed with

it about two months ago...she was bleeding...the doctor put her on assacol pills and medicated enemys...this has caused her lots more trouble and is beside herself and getting worse...We are going to try
aloe m.p. plus which is being shipped to her..will look up vsl#3 and see what that has to say...thanks for your thread as would like to talk to someone about this that is suffering from the same thing.

[auntAgonist]

2. The flare ups are horrible

And the blood loss is very frightening. He's in a flare up right now and refuses to go on the prednisone. It's a double edged sword. The UC is bad, but the prednisone is almost worse. It causes headaches, sleeplessness and irritablity. Not to mention bloating which makes the UC worse!

He says taking the vsl3 is keeping it manageable. If he were on the pred right now he'd been in worse shape.

http://www.vsl3.com/VSL3/default.asp

[REP]

3. Crohn's in the Terminal Ilieum

A lot different than UC with many of the same symptoms. In addition to Lomotil and pain relief, I follow a low-residue diet which helps tremendously. (I can't take the anti-inflammatories due to kidney failure.)

[WestHoustonDem]

4. I have Crohn's and had great success with

Remicade infusuions several years ago. I also take immuran to suppress the immune system.

[SCRUBDASHRUB]

5. I do; diagnosed with UC in 1990. I've been on sulfasalazine since then.

Thank G-d for that medication. Haven't tried any of the newer meds (if it ain't broke...).

[Ms. Toad]

6. I haven't checked into it in a while

but when my daughter was diagnosed 10 years ago (age 5) the alt.support.chrons-colitis group was a lifesaver.

Lots of folks on traditional medications, non-traditional medications, and sharing whole body understandings of the diseases. GI docs tend to focus solely on the gut - so it is very helpful to get a broader perspective. For my daughter, Pentasa was still allowing breakthrough flare-ups until I followed up on the suggestion of someone in the group that food allergies seemed to trigger flare-ups. We tested her, discovered she was mildly allergic to chicken, took it out of her diet and she's been in remission virtually the entire time since then. (All flare-ups since then can be traced to either inadvertent poultry consumption or attempts to wean her from her maintenance meds.)

I just checked - there were 6 posts in the group today, so it is still alive and well. PM me if you want me to try to dredge up how to join it.

[WestHoustonDem]

7. That group saved my life after I was diagnosed with Crohn's in

97. When I found it, I stayed up all night reading and crying.

[Ms. Toad]

8. It was an absolutely fantastic resource for me as a parent

of a not quite five year old just diagnosed with ulcerative colitis. We went overnight from being ridiculed by my daughter's doctor for making a mountain out of a molehill to being diagnosed (with the ulceration of the entire colon verified by colonoscopy), and being on steroids (without being warned of ANY side effects). At least she wasn't headed to kindergarten in diapers!

The specialist had his own quirks - he liked to dole out information a bit at a time (hence no warning about the really nasty side effects of pred my daughter experienced), at the pace he thought parents could handle it. I don't work that way. The group fed me the information I needed to ask sensible questions. I walked in to his office at the next visit, handed him a stack of information I found through ASC-C and informed him that we were talking. He's keeping my daughter healthy, and I keep him honest by reminding him that parents and kids have a right to participate in their treatment - and that sometimes GI illnesses are related to things outside the GI system. Mostly his interactions with us are much better - but he occasionally he needs a reminder - usually when he is trailing a baby doc...

I certainly was a lot healthier, emotionally, because of that group - and my daughter has been in nearly complete remission for 10+ years because I was able to use what I learned in that group to get a better wholistic understanding of her illness. Her 10 year colonoscopy was clean - only microscopic inflammation showed up in the biopsies!

[WestHoustonDem]

9. My gastro doctor finally realized how long it's been since my

first and only colonoscopy because I've been in remission for so many years. I'm going Friday. At least this one won't hurt as much - the ulcer's in my small intestine have all turned to scar tissue.

[Ms. Toad]

10. Good Luck!

Since the cancer risk is so high for UC I've been keeping careful track. I figure I only get a couple of chances to help her build up good habits (scope every other year) while she's still under my wings. This one went very smoothly.

It sounds like you've been pretty lucky - a friend of ours has Crohns. Near as I can tell he's never been in complete remission.

I was hanging out in ASC-C 1995-1998, and dropped back in winter/spring 2004. Any overlap with your time there?

[WestHoustonDem]

11. Thanks. Looks like we did overlap...

I joined in spring of 1997 and stuck around for about a year. After a while, certain people who tended to dominate got a little heavy handed and I got tired of it.

I've been very lucky after a rough start. I never needed surgery but I was on the evil prednisone for 18 months after being sick for 3 years and not being willing to go to the doctor, then going to the wrong one. He prescribed Asacol when he should have prescribed Pentasa. I'm down to 4 pentasas a day and one immuran, plus nexium. Now I get maybe 2 or 3 bad flare-ups a year and they only last 2 or 3 days. I can eat just about everything except soy and can travel again. I took a six hour road trip a couple of weekends ago by myself!

BTW - I have a 16 year old daughter and I'm a single mom. She drives me nuts, but I'm grateful to be the one with Crohn's - I can't imagine what you go through! :hug:

[Feli]

12. Over there

I was Lavendrnan (she says, cringing lest she was one who tended to dominate and got heavy handed!). My activity was probably waning by the time you joined - my daughter's UC was pretty well under control by then.

The mystery extra-GI ailments are a pain, but we've only had one extended bout with cellulitis/vasculitis/erythema nodosum/some other possibility they haven't discovered yet. When we thought it was cellulitis she got to go to school with an IV port in her wrist since she could only tolerate IV antibiotics. Got her a lot of sympathy! She realized during that bout how serious UC is, since the really bad gut time (thankfully) predates any of clear memories. Probably a good thing, in the long run, to have had something while she was still living with us to remind her that she needs to care for her UC.

The roughest part about having a daughter with UC is thinking about her prospects after she leaves the nest. She will be uninsurable, except through work, once she reaches 21 - and a lot of "just out of college" jobs don't provide insurance. Her meds cost about $255 a month. Even if she remains in remission she needs a checkup every six months and a colonoscopy every 2 years to keep cancer at bay. It's terrifying to think she might not be able to afford it and/or might "forget" to keep up with the regular monitoring and miss cancer while it is curable.

[Ms. Toad]

13. Oops - Feli is actually

my 15 year old daughter :blush: She was logged into her account to vote in the photo contest: http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=105x5052179 (Her photo is of herself kissing the fish). I didn't notice that she hadn't logged out before I went surfing...and posting. Good thing we claim each other in public :)

[WestHoustonDem]

14. I'm sure you weren't one of the ones I was referring to LOL

The people I remember had UC or Crohn's themselves. That was a long time ago, so I don't remember details other than that the group stopped being the source of support it had been and moving on.

My only extra-GI problem has been fibromyalgia, which is also in relative remission now. For a while, I was a prednisone bloated beach ball hobbling around with a cane. Very pathetic.

I was 39 when I was diagnosed and nearly lost my health care several times. I always managed to find something just when Cobra was running out. But as a single mom, I've had to depend on my parents financially during the times I either couldn't work or couldn't find work.

Let's hope that by the time your daughter reaches 21, the real Democratics are in power and we have universal health care.

Meanwhile, I'm in the middle of the prep for tomorrow's colonoscopy. I hope I'm clean enough because I'm not drinking ay more of that shit tonight.

[Ms. Toad]

15. Did things go ok today? n/t

[WestHoustonDem]

16. Actually they did - thanks for asking!

The prep sucked, but not as bad as when I was in the middle of a flare-up and I had it done at a little clinic. I was in at 9 and out by 11. I was totally out during the procedure (unlike last time). I'm so happy it's over!

There was a slight glitch when the friend giving me the ride couldn't leave work so I drove myself and she picked me up and took me to get the car later.

[Ms. Toad]

17. They seem to have changed

their anesthesia practices in the past 10 years. Don't know if anesthesia has gotten less risky, or they had problems with the versed. My daughter's doc had forgotten that they used versed, and was kind of surprised I didn't realize she'd be completely out.

Glad things went well.

I've got another vicarious one to go soon. My spouse was supposed to have her first over 50 colonoscopy 4 years ago. I argued for a dual colonoscopy last summer when our daughter had hers, but neither my spouse nor the pediatric GI would go for it. Finally made an appointment for next month. She's so bad about medical procedures I expect it to be much more difficult than our daughter's.

[WestHoustonDem]

20. In 1997, all they gave me was demerol, this time it

was a combo of fentanyl and versed. It worked much better for me.

If you can get your spouse's done at a clinic instead of a hospital, I'd recommend that. I checked in at 9 and was on my way home at 11. Amazing!

[Ms. Toad]

21. It's already scheduled

for a hospital. Given that it's taken 4 years to get it scheduled at all I'm not about to suggest any changes!

[WestHoustonDem]

23. I don't blame you a bit. When is it scheduled for? n/t

[Ms. Toad]

25. May 17, I think.

[REP]

18. What Anesthesia Did They Use?

I have the paradoxical reaction to Versed, and I refuse to have another colonscopy unless I'm actually out for it. I've heard of another anesthesia that starts with "p" but can't remember the rest of the name. My Crohn's is very mild and in the terminal ilieum (small bowel) so I can be imaged with CT and clear contrast, but I have the feeling they might want to mount another expedition up Mt Assmore soon.

[WestHoustonDem]

19. 100mcg Fentanyl, 7mg Versed

according to my release papers. They added it to my IV and then I woke up in recovery. I was tired but actually alert enough to have driven myself home if I'd had to or if they'd have let me.

My first colonoscopy they gave me Demerol, which didn't do anything for the pain, but then again I was in the middle of a huge flare-up. I wonder if demerol and fentanyl together wouldn't be good for you.

[REP]

28. Nope, Because of the Paradoxical Reaction to the Versed

I was given Fentanyl, Demerol and Versed for one; was concious the entire time (and screaming). Got Demerol and Versed for the others; was concious (and screaming). I don't sedate with opioids (another unusual reaction; they keep me awake) so in combo with the Versed, which also keeps me awake and alert ... well you can imagine. The prep puts me in a flare, too. Yay!

So, I'll just not have another one!

[WestHoustonDem]

29. That's what happened to me with my first one.

I think they gave me Demerol, but no Versed. That's why I waited 8 years to have my next one, then I got lucky. It really sucks that you have that reaction to the drugs.

That reminds me to call my doctor today. I was supposed to call yesterday to discuss the results.

[Ms. Toad]

22. For my daughter it was general anesthesia

this time. Administered through an IV - but I don't have more details than that about the specific anesthesia.

Given that they are still using Versed for adults, I'm surprised that they have moved to general for kids. I can't imagine that there's enough benefit associated with kids being completely out to overcome the additional trauma of the IV and the risks associated with general. I assumed they had decided Versed was not good, in general. Versed made the colonoscopy a non-event for my daughter - she chatted at them through the entire procedure (like the little "drunk" that she was temporarily), then after it was all done asked when they were going to look in her bottom. Hmm...

[WestHoustonDem]

24. LOL! She sounds like a great kid! n/t

[Ms. Toad]

26. She is.

And she really tolerates the medical stuff well - which is good, since her life will likely be filled with too much of it!

Here's a picture of her (without the mask and fish spoiling the view): http://photogroup.smugmug.com/gallery/681553/1/29767007.

[WestHoustonDem]

27. And she's beautiful too! Congratulations n/t