17-y/o just diagnosed yesterday

Yeah, I didn't learn about VSL#3 until I was already in remission, but should I flare again, it's definitely well up there on the list of things to try! I'll do the "easier" stuff first, which is mainly upping my enemas to nightly, as I know that worked well for me in my first flare. Then I guess it's probably switching from my current probiotic to VSL#3.

You need to take charge on your own. Each of us has our own unique way to manage this disease. Many veterans of this disease eventually discover that doctors are not infallible. And it won't be long before they eventually learn that alternative gurus such as SCD's Elaine Gottschall and Jordan Rubin of the Maker's diet do not have all the answers either.

I try to eat healthy by choosing grass-fed meat and wild caught fish, but that has nothing to do with my ulcerative colitis. That is just me trying to have a healthy lifestyle. Some foods do trigger flairs for me but many of these problem foods are all legal under SCD, Paleo, and Maker’s Diet. And many of the illegal foods are perfectly compatible with my body chemistry.

I suggest keeping a food diary to isolate any triggers. Gluten and dairy are the usual suspects. My triggers are in my signature. But also realize that there are many UCers here on this forum who say that food does not affect their IBD at all.

Most of us have our favorite supplements and anti-inflammatories. For example I take probiotics every day and triple the dose along with psyllium seed to calm things down after eating something bad.

But the almost universal remedy on this forum for flares are rectal meds and retention enemas. Lucky for me (I think) I am allergic to mesalamines so I never tried them; but members of this forum swear by them. The bad news is trying to convince an adolescent teenager to take them.

Probiotics are very effective but their main drawback is that they do not permanently colonize in your gut. So I have to take them every day. There are some people here who have found relief thru fecal transplants (yuck! But if it works then it works).

FT bacteria seem to be more successful at colonizing so that therapy is closer to a more permanent remission. And of course different brands and strains of probiotics work differently depending on the individual.

Colbran,

My pleasure to help.

Did you make sure to ask your insurance whether they would cover VSL #3 DS ( not VSL#3)?

The reason I ask is that there is a distinction, and if they do cover it, it would be the DS not the regular kind.

As for the liquid D, I would suggest you try l-glutamine amino acid powder, 1 teaspoon in a little water on an empty stomach can work wonders. IMO L-glutamine amino acid powder should be a part of the regimen anyway, for long term colonic repair. And then there is L-Threonine amino acid powder which helps with intestinal mucosal barrier as well.

I know it's overwhelming at  first, but unfortunately most really good info you won't get from your doctors, you'll have to rely on the forums.

Let me know how else I can help.

 

I pay $50 for 60 capsules plus shipping, which is expensive due to the refrigeration.

Hi, I'm a 17 year old senior, I was diagnosed in March when I was 16 and in my junior year. I've missed almost all of school in the last six months, but I know what your son is going through.
I just returned home from an ibd ceremony and from what my doctor and other doctors have told me, it is caused by a combination of 3 things. Environmental: antibiotic use, stress, smoking, etc. predisposition: 20-25% of ibd patients have a direct relationship to someone else with ibd and the third is over activity of the immune system. I personally believe mine was derived from stress, big standardized tests, ap and honors classes, sports, dance, nhs, work, it's a lot, but your sons case could be partially caused by the antibiotics, but there's no saying that for a fact.

Lialda is a terrible drug, if he gets worse with diherrea and bleeding stop immediately, I was allergic too it which mocked a flare.

Best of luck!

Thanks for your posts, AbigailRose....this forum has been awesome. I'm gathering more and more info, which is what my goal was. DS has no side effects from the Lialda so far, other than that post colonoscopy on Monday, his diarrhea hasn't slowed at all. However, he may be on too low a dose, which the dr. did say and I've also ready from this site. Biopsies to return Monday, so we'll go from there I guess. Thanks again!

Isn't that the truth Orchids787? You're absolutely right....I'm a college graduate, I do medical transcription for a living, and for whatever reason, I failed to give him probiotics when he took those antibiotics, even though I take them myself with antibiotics and I'm fully aware of how necessary they are? Really???? How could I have been so stupid to think that he wouldn't need them? It was because he's never had problems taking them the very few times before that he has, and it never crossed my mind. I was more concerned about saving fingers and keeping my eye on them for infection, etc. I blame myself no matter what, you're right. There is no question he went through a point after surgery where he wasn't right....very tired (more so than he should have been), sweats, wearing a sweatshirt and sweatpants to bed because he was so cold, etc. I know, I know...shouldn't blame myself, it would have happened sooner or later. I'd rather it be me in a heartbeat than him!

I did get in touch with the school yesterday and the accommodations are being made. It is in a 504, that I know. Up until this point, there are no issues with anyone there except the first class of the day where the teacher has to constantly remind him that he's late. It's not every day, but it's a lot of days...Good God, he knows. He doesn't try to have uncontrollable diarrhea, he doesn't try to make himself late, I can't explain how many times he's had to pull off the side of the road and escape into a field to go to the bathroom before he even gets to school (we live about 10 miles from school). Heck, just last week it was dark and he pulled into a gate hole, and the police stopped and yelled into the field to ask him what was going on!! How embarrassing....he had to explain that he had this stomach problem and he wasn't doing anything in the field he wasn't supposed to be and had a procedure coming up. Wow, for this teacher, just try for a day to go through what he has. Honestly, have a little compassion right?

I'll check that website out and see what it says. Thanks for the heads up!

@Orchids787, I wasn't sure if they were looking for Crohn's or if they were looking for colon cancer. I'll go with your Crohn's! You're right....focus on the now, now on the past. Thanks for that!

Okay, so I'm confused...GI office called and said, "Chronic inflammation of the colon with mild activity." C-diff negative. Help me out?

We have two members of the family with colitis and both have done well with stopping the flare using enemas - my husband with Rowasa and daughter with steriod enemas. Can't say whether it could help your son, but I had to ask for this instead of prednisone for my daughter because the doctor assumed she wouldn't want to do it. She would have tried anything at point!

He's got the be discouraged and physically drained! Was the outcome of the testing that he has Ulcerative Colitis or is it something else?

When you go back, talk to the GI about enemas. the medication goes straight there and works very fast if it's going to work.

In the mean time, we do lots of distractions. We set up the bathroom so that it's a nice, pleasant place to be and there are things to do in there: read, watch a video, listen to music. This might sound silly, but she was getting almost a bathroom phobia. It also became "her" bathroom so that she didn't have to worry someone was already going to be in there. Anyway, now she doesn't dread going in there anymore.

Diet-wise, the natural healing books recommend bananas, melon, and other non-acidic fruits as the least damaging. They also say lots of sleep to allow the colon to heal.

I so feel for you. Hang in there.

I'd be irritated at a GI who won't see him more quickly, to be honest. When I was first diagnosed, I was at my GI's office every 7-10 days (at HIS suggestion) to track progress and make changes.

I was on Asacol alone for like a week, then added the Rowasa. I'd noticed a tiny bit of improvement with the Asacol, but not much. When I added the enemas, I improved a lot quite quickly.