Very recently diagnosed, and stuck, feeling down, questions about meslamine and bloating

that is the problem, Matt, the docs always are just trying. It is tough to get a specific answer and there are plenty of non qualified people who will fill you with more advice than you ever want to process. I just posted that I will need surgery as my disease has gotten progressively worse. I have had UC for 16 years and you have made the most important step that I did not do, which is to ask for help as early as possible. Differences are incremental. If there was one piece of advice I would give you I would have you tighten your diet as much as possible. Read the Specific Carbohydrate diet. It is not the end all, be all, but it gets you to start to take action. Foods really are medicine and I did not take advantage of this early on.

To me, it sounds like nothing works for anyone... Really bums me out. I've overcome a lot in life but this disease seems like it's such an unknown there's no plan of attack. Just shooting in the dark and hoping something works. Ugh, really bummed out. Glad I finally got checked out though at least and know what's wrong with me.

Symptoms prior to medicines were chronic fatigue, feelings of dehydration, bloating, gas, 4-7 bowel movements per day, general feeling of uncomfortableness most days in my gut, caused me to always feel uncomfortable and anxious, hard to relax. Some blood but mostly mucus in stool.

After starting meslamine, about 5 weeks in now, 1 week into the doubling of my initial 4 week dosage. First 4 weeks saw no improvement, slight dizziness, increased bloating from usual, slightly increased pain, after the 1st week of double dosage, feeling pretty awful. Bloating is feeling severe, increased bowel movements, feeling dragged down. Next step Doc says is prednisone, which I really do not want to take and haven't heard many success stories for UC patients anyways. I'm a former personal trainer who has trouble staying in great shape due to some other old military injuries but now this kicking into high gear, and side effects from meslamine and the weight gain I'm sure that's going to happen from prednisone is really going to put me in a bad mood.

FSLondon,

Yea I'm actually looking at the SCD diet right now, thinking it's worth a shot. What was your experience with it?

I would say I have had mixed results with SCD. I have been in clinical remission for a few years, but have always had unformed stools (just 1 a day), which seems to me to be a sign of a problem. Initially SCD helped enormously with moving me toward more formed stools. But I travel a fair amount for work and find it very hard to follow when travelling. And it seems I've never gotten back to my initial success since my most recent work trip. Although I find it easy, if disruptive, to follow at home, it is hard it you're out and about. I have been to restaurants while travelling that had nothing on the menu that I could eat. Psychologically that can be a bit of a bummer. I am still following it and have no travel lined up for the next month so will see if it starts working again. If you're up for it and committed I'd definitely recommend trying it -- just to find out if it can help you. It is easier to do if you like to cook and like vegetables. I think someone who doesn't cook much from scratch would have a steep learning curve.

If the mesalamines and enemas don't work than you will most likely need steroids to get you out of your flare
I would maybe add an immunomodulator like imuran or 6mp at the same time you start your steroids
That way by the time you finish the steroid taker
The immunomodulator will be at a therapeutic level in your body
It's best to treat UC aggressively

I was given mesalamine in my first flare and it didn't really do anything for me- it took a round of pred to really get things under control. It wasn't fun but you get through it- I was just relieved to feel better. You won't necessarily gain weight either- in my first flare as well as my current one (which is coming to an end, thankfully) I didn't gain weight from pred. I stick mostly to a paleo diet but add in white rice as it's really soothing to me. I tried SCD but the dairy and nuts did not work for me.

This is a frustrating disease but with time and experimenting you will find things that help you. This board is a great resource! In the nearly 3 years since my diagnosis, I'm still learning and exploring. Good luck and keep us posted.

Matt, ulcerative colitis is a chronic, life-long illness characterized by periods of flares (what you're experiencing right now) and periods of remission (an absence of uc symptoms). I've been in remission for a year and I live normally without worrying about uc.

You're recently diagnosed, uc takes a good amount of trial and error to find the right combination of medications and doses to put your uc into remission. It can take a while, so patience and persistence are needed.

Keep in touch with your gastroenterologist and let him/her know if things aren't improving. The first medication tried is a daily 4.8 grams of oral meslamine (lialda, asacol hd, etc) plus 4 grams of meslamine enema (rowasa). If you've tried those and haven't found relief then prednisone and immunosuppressive medications (Imuran, 6mp, or aza) are next.

Many have different stories of what works for them, however, uc is very individual. You'll get many conflicting answers on what works for different folks. What matters most, is what works for you. That means more trial-and-error.

Thanks for the information and help everyone. Sorry if I sound like the dumb newbie.

Decided to start paleo today, see if that helps any.

Got crazy bloating again today though. Starting to really become both bothersome and worrisome. Never had bloating like this before mesalamine. Super, super uncomfortable and didn't eat too much today. Going to try and call my GI tomorrow.

Some basics. I don't have the experience as the old timers, but I like to analyze things.

1. This is a very individual disease. Others have said it. Can't be emphasized enough. What works for you will darn near kill someone else.

2. Bloating may be caused by something your body doesn't like anymore. Onions and peppers rip me a new one. Except for red onions for some reason. I really like onions and peppers...

3. Work with your doctor(s). If your doctor suddenly starts to suck, doesn't seem concerned, doesn't sound like they know what the hell they're doing, go find a new doctor. Loyalty should be granted to those who have you in their best interests.

4. Be afraid of some things, but don't be so afraid that you don't do what you need to do. Surgery will most likely not kill you. Enemas suck, but can be a game changer. Go to the hospital if you need to. You will most likely not get the side effects from the stronger medications.

4.5 That being said, do your research and make your decision logically, not emotionally. "OMG SURGERY NO I CAN'T I'LL DIE!!!" is not a good decision.

5. Live life. For most people this sucks, but it's not debilitating to the point you'll never leave your house again. Sometimes you won't be able to help it, but don't let the disease own you. It makes things worse.

6. If you definitely have UC, there is only one "cure". Your body is attacking your colon. Remove the colon, remove the disease. Otherwise, you can throw tons of money at everything from acupuncture to trying to make your own FMT. That doesn't mean don't try things, it just means be skeptical.

Hi Matt - been thinking about you prob because I was around the same age when I first got diagnosed. Did you see your GI? How's it going?

What are people's experiences with SCD and/or Paleo? More success with one over the other generally?

Neither was exactly right for my gut but Paleo was closer. My gut loves potatoes (see threads: resistant starch or RS) so Paleo plus RS. FODMAP diet is also a good diet mod. to check out.

1. Get an Rx script for Rowasa, mesalamine enema (not suppository). This can eliminate inflammation in the lowest area and start healing upward. Pills do not reach this area and suppositories are for maintenance and you need healing right now.

2. Add a good probiotic into your daily intake. There are many to choose from but find one your gut likes then keep adding because high amount of probiotics can help crowd out bad biotics, which may be cause of bloating. Start slowly because probiotics can cause gas too.

3. Eliminate fiber in your diet as much as possible so your wounded gut has less work. Yes fiber is good but in UC is can problems. Later, when bleeding is gone, try out different fiber pills and see which your gut likes.

4. If your oral pills have not helped in a couple of months it will be time to try another oral RX. Using a short term prednisone can help get you over the hump and allow the oral RX to maintain improvement.
As already said don't give up on the first oral RX too soon but 1-3 months should be enough time.

Good luck.