help me with my colitis!

Hi, and welcome to the forum!

A lot of us have "been there" - !

First off, I suggest you check out MyUC's recent posts - he's been put into a lovely remission by Imuran (an aza med.)

But some suggestions/questions - have you tried rectal meds? - either Rowasa, the 5-ASA retention enemas, or the steroid enemas (not nearly as bad, systemically, as prednsione, which your doc is obviously avoiding)......
Have you tried probiotics?

My son had a flare last spring and came out of it by doing a 2 week course of Flagyl, then adding a probiotic and some Metamucil....

We all seem to be different in what helps us, so the best we can do is try things. What had you tried in the natural" category....?

Again, welcome, and hang in there.

One thing I can definitely suggest that has given me great relief has been the VSL#3 DS probiotic. It is available in powder form through prescription only and has really worked wonders. Although it does not relieve all of my symptoms like abdominal pain, it does help with frequency as well as overall stomach wellness. I have noticed that the days I accidentally forget to take the probiotic, my insides tend to be upset more than usual. I currently take 2 packets of the probiotic a day. Usually I mix it in applesauce, Italian ice or Peptamen which is a formula that is made by Nestle. It's ridiculously expensive but is available through a patient assistance program. If you are unable to tolerate solid foods as I am sometimes unable to do, contact Nestle and they will email you an application form you bring to your doctor to fill out and fax back to them. If approved, they will send you 1-2 cases a month (24 cans in a case) for up to a year and then you reapply if you are still ill. For a while, I was buying the cases at $150/case. It just got to be way too expensive for me so thankfully I found out about the patient assistance program and was approved. Peptamen for those who don't know what it is, is a formula that is partially digested and is sort of a meal replacement. It's for people who are GI-Compromised like us UC sufferers and those with Crohn's Disease. I have found that when my insides are upset, if I mix the probiotic with the Peptamen it tends to soothe things. HOWEVER....there are those who have tried Peptamen and have had no luck with it because of it being dairy. So be cautious if you try it...everyone is different. If dairy bothers you, I would stay away from it altogether.

I have never been on ASA's due to the fact that for whatever reason, my doctors just couldn't figure out the right combination of things. I have always been on Asacol and this is the second round of Prednisone for me which I am weening off of completely now because steroids for me are useless. As a matter of fact, I went from one flare to improving and then just getting horrifically worse with a second flare. Once I had my second colonoscopy, things were so bad that the GI could only see 30% of my colon and had to withdraw for fear of rupture or perforation because the tissue of my colon was just flaking away. Needless to say she wasn't about to wait for my biopsy results or anything and scheduled an appointment with me for the very next day and she decided to do aggressive Remicade treatments. I go for my second infusion this Friday, Sept 17. As scary as the infusions are and knowing what they are and what they can cause, I had IMMEDIATE results. I went from having 7+ horrific bathroom trips a day that were totally filled with blood and mucus to NO BLOOD OR MUCUS the VERY NEXT DAY and having 1-2 NORMAL bowel movements. I do sometimes have to take Colace because I have noticed my insides tend to hold everything in now that I am on the Remicade but the improvements have been AMAZING. I am just hoping that the pain is the next thing to disappear. Hang in there and good luck! We are all here for you if you have any questions and you have all our support!!!!

Did you start at 15 mg of pred.....?

aza - azathioprine, the class of drugs which would include 6-MP and Imuran.
The thing about azathioprine is that is can take several months to kick in, and it would be good to get you feeling better quicker than that!

I'm thinking you are in the US...? In which case the foam would have been a steroid foam. The "and stuff" - suppositories...?
Rowasa is a 5-ASA enema, medicine like Lialda, Asacol, etc and helps a lot of folks. You don't think they've helped you at all - ? There are some folks here in that same boat; hopefully they'll chime in.

What probiotic have you taken - if it hasn't helped, there are others out there that might be better......

Have you figured out foods that make you feel worse....? I subscribe to the "food doesn't cause my flares but can make me feel worse when I'm flaring" philosophy, and I know some foods make me feel worse.....Have you kept a journal to figure out what those things might be....?

I feel for you, wanting to graduate without losing time...... but first you need to be feeling better.
I'm not sure I've been any help.... but this is a great place to ask the questions.

I haven't run into any adverse side effects thankfully. During the infusion treatments, everyone reacts differently. Here's how the infusion went for me...firstly, I receive them at Hershey Cancer Center in Hershey, PA which is about an hour and a half from home for me. It's definitely worth the trip because the doctors are amazing. My internist was very thorough and gave me a print out of all the side effects. Pretty much they are required to warn you that it can cause lymphoma, tuberculosis (which they require u to get a test done PRIOR to your first infusion and it MUST be negative), they send you for blood work prior as well as recommend you get the H1N1 and flu shot combination as well. I am scheduled to get that done early next week because they actually put a shot aside for me due to the Remicade treatments. Remicade suppresses your immune system so it's IMPERATIVE that you pay attention to your body and stay away from people who are sick. This is what has my concern as I work with the public daily and handle money and phones etc. Also, I have 3 stepchildren who are all still in school and always sick so I feel like I need to be Bubble Boy. Remicade also causes terrible infections which can be deadly if left untreated. So again it's imperative you pay attention to your body...chills, fever...ANYTHING...you have to let them know RIGHT AWAY. They set me up in a separate room with a recliner and a TV and they put the IV in your arm. I have to admit it's uncomfortable. They have you take 2 tylenol to try and take away some of the discomfort (sorry but for me it didn't help) and by discomfort I mean it burns a bit...at least it does for me....it pretty much feels like you have a small fire in your vein. I don't know if this happens to everyone but it did for me....they also gave me a full bag of Benadryl and will continue to do so for each treatment as this is supposed to really cut back on allergic reactions. So for the first half hour you are on saline and Benadryl drip and after the first half hour, then they add the Remicade. They start the drip off slow and then increase the drip every half hour and then every 15 minutes after they take your vitals. It's annoying but necessary. I am sensitive to the Remicade...it makes my blood pressure drop so they go a bit slower with the drip with me and it takes longer but if they don't do it slow, I'll pass out. I got very very tired but once they slowed the drip my blood pressure went back up and I was fine. You're very tired afterward and feel "weird" for lack of a better term. I felt "weird" for a few days and then it went away. It really wasn't bad. I just wish it wasn't as painful getting hooked up in the arm or getting it removed. The nurses had a hard time with my vein with the insertion and then upon removal the other nurse I had thought it was removed and when she put pressure on the infusion area, I nearly hit the ceiling because the fiber-optic was still inside so needless to say that was honestly the worst part...even the burning sensation wasn't too bad...once you've sat there for 4 hours you tend to force yourself to get used to it.

Overall, Remicade is super scary to me but necessary as I really have no other options at this point due to the fact my condition seems to be worsening exponentially. It was explained to me that Remicade is in fact a form of chemotherapy (which it in fact is) and it's definitely not something to be taken lightly and will have its side effects but again you have to weigh out the options at that point. For me, it was either Remicade or give up life because my UC has completely taken over everything...home, work, friends...everything. I was also informed from my GI that usually people don't see results until after the 3rd infusion treatment. Because of how severe my condition has been, I had IMMEDIATE visual results. I am definitely not where I should be which should be in remission but this is as close to normal as I have been in 2 years and I have to admit, it's absolute BLISS. Any other questions, don't hesitate to ask. I'm here for ya!

Have you used sulfasalazine? Some end up going back to that original one as it works best for them.

I use probiotics and l-glutamine.

And I stick with non-residue foods when I'm as bad as you describe. I eat scrambled eggs, sourdough bread/toast, white rice, baked fish or chicken, only cooked veggies or canned fruits, no fruit juices. I steer away from spicy foods, fried foods, beans, salads, raw fruits/veggies, or anything with cooked tomato sauce, creamy sauces, etc.

I've also recently added amitripyline which slows down the bowels. It's a first generation anti-depressant that helps the bowel when used in small amounts. Helps with sleeping and pain too.

Hi Reed -
Are you getting more info than you'd bargained for? lol
If you haven't already, check our ccfa.org for basic info about UC. You can find a webcast archived there about medications, too, which will describe the "ladder" of mildest to strongest meds.
Generally, the ladder is, from the bottom up, 5-ASAs (sulfasalazine, Asacol, Lialda, Pentasa, Apriso, Rowasa and canasa (rectals) etc; then (this is controversial where it should go because of the potential side effects, but it seems in common practice that this would be next) steroids - prednisone, cortenemas; then 6-MP, Imuran, etc (aza), then the biologicals, Remicade, Humira.
(I'm sure I've forgotten things and other folks will jump in to help.)
Although traditionally docs have started at the "bottom" of the ladder and have gone up if or as necessary, there is a school of thought right now to start at the top and just KICK it and possibly change the long-term course of how the disease develops. (My recent GI appointment turned into a medical lecture and I learned this.) As with most things UC, the jury is still out as to which is the better approach.

If you're doing VSL and it's helping, I don't if you have prescription coverage? but some of us have found that if the GI prescribes the Double Strength version (prescription only) the cost is at least partly covered. I'm taking the equivalent of what you're taking - 2 packets of the DS version each day.

Re food... yeah, your list looks like mine, lol. I'd add to the trouble foods "scratchy" things like corn, popcorn, and gassy things. When not flaring, I can eat normally. So there's hope.

Do you have IBD in your family....? Or take Accutane.....? Some of us have actually figured out what triggered it. (I haven't - it was too long ago and I didn't ask the question then.)

Keep us posted!