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Newly diagnosed can't get remission

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Ulcerative Colitis
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Posted 4/11/2013 6:17 AM (GMT 0)
Hello, I am a little lost and wandering thru this new diagnosis. Started having blood in stool in nov 2012, progressed to bloody diarrhea (10-15) times per day and abdominal cramping. diagnosed jan 2013. Scope showed proctitis and small ulcer on left side. Started on lialda and Canasa, got some relief for 2 weeks with increAse energy and about 3-5 per day decrease blood, then diarrhea started up again and increased bm. Dr thought I was reacting to lialda so put me on asacol, which did not seem to help either. Started pred 40 mg about 2.5 weeks ago with no real improvement. Did second short scope disease does not appear to have progressed but is till same especially proctitis. Started steroid enema at night for almost week now. 24 hours after second scope had severe abdominal pain and large amount diarrhea, diarrhea has stopped but still not right.

Now I have had 1 small true stool, otherwise having about 15 bm of frank blood and mucous, strong pushing I can't seem to control for past 2 days. I do have hemroids, so blood may be from there also. Rectal pain and pressure keeping me up second night in row. I tried acupuncture today with pain and pressure relief for few hours, may be in my head but I felt really good for a little while.

I guess I would love some direction on where to go next. Calling my gi tomorrow can't keep staying up all night. We have tales about imuran and it terrifies me. With 2 small kids and them always sick from school and day are I don't know what I would do.

My dr said I am moderate since I am Not responding to the pred, but how much of this his hemroids pain now? What about a nutritionist to see if I can I'd triggers. I've cut out fiber whole grain dairy fruits and veggies. My dr seems to think a nutritionist can't help.

Thinking about heading to uic for second oppinion...sorry this is so long just starting to get desperate here, been reading this forum for couple of hours now and u all seems so nice and understanding. Thank you for your help and advice it has calmed me tonight
Posted 4/11/2013 6:26 AM (GMT 0)
The rectal meds should help pretty quickly. Maybe you are mesalamine intolerant. Also trying a good probiotic might help. I personally love VSL3DS. You need a Rx for it but your insurance may cover it. Sorry you are sick.
Posted 4/11/2013 12:25 PM (GMT 0)
You may be mesalamine intolerant. Lialda, Asacol, and Canasa are all mesalamines.
Posted 4/11/2013 12:36 PM (GMT 0)

Knich said...
We have tales about imuran and it terrifies me. With 2 small kids and them always sick from school and day are I don't know what I would do.

I've been on 6mp which is very similar to Imuran (just metabolized in a slightly different way) since January 2013 and I've had no side effects. I also haven't been sick despite all of the people who developed the flu, colds and so forth around the office. Imuran isn't as scary as you make it up to be. Yeah there is a statistically small chance of lymphoma, but the odds are about the same as death in a fatal car crash. And we all hop in and out of our cars each day without a worry.
Posted 4/11/2013 12:53 PM (GMT 0)
My doctor is thinking mesalamine intolerant...which I think stinks:)

I am worried because if pred isn't helping where to go from here...hmph. Will try probiotics again, tried them for couple weeks no improvement but they can't hurt so why not? Gonna try and find a nutritionist also

I think my biggest problem is hemroids right now, which I think the Canasa was helping more then hydrocortisone enema. So gonna ask for no mesalamine suppository maybe for daytime?
Posted 4/11/2013 1:52 PM (GMT 0)
i wouldn't waste the time or money on a nutritionist - most just quote out of a book - you can get far more useful info here -

unfortunately food choices probably won't change much right now - they will help you down the road -
Posted 4/11/2013 1:56 PM (GMT 0)
I wouldn't put much faith in either diet changes or probiotics taming your uc. As some people notice some improvement in symptoms with them, while others do not notice any improvement at all. Face the facts: you are going to need medication to tame your uc, and you are going to be taking a daily maintenance medication from this point forward. At this point it just a matter of finding the right one for you; something you are not allergic to.

Your basic choices are:
1.) Sulfazine
2.) Some form of oral or rectal Meslamine (Asacol HD, Lialda, Rowasa Enema, Cansa, etc.)
3.) Oral or rectal steriods (Pred, hydrocortisone enema, Uceris, etc.) which are for temporary use.
4.) Immunosuppressants (imuran, 6mp, etc.) which take 6-8 weeks to take full-effect.
5.) Biologics (Remicade, Humira, etc.) which take affect quicker than Imuran.
Posted 4/11/2013 2:16 PM (GMT 0)
Knich, 40 mg pred didn't help me either. I kept bleeding ect. I had to up it to 60 mg to finally see something.

I'm taking Imuran and I have no side effects. Do you normally get sick often when your kids catch it?

I wonder if you would be intolerant to Colazal as well when you're Mesalazine intolerant.
Posted 4/11/2013 4:30 PM (GMT 0)
Knich: Which probiotics did you take? People have very different reactions to different probiotics. The very same one can make one much better and another much worse. Most probiotics you buy at regular stores are woefully low in the doses needed to make UC better. It is like a drop of water compared to a 64ounce drink. VSL was formulated specifically for UC and many have found it to help. The VSL dosage is hundreds or even thousands of billions of cultures. Some people make the mistake of trying a probiotic and if it doesn't help, or even makes things worse, then they say they have tried probiotics and it didn't work, not knowing that a different probiotic could have made a world of difference.
Posted 4/11/2013 4:47 PM (GMT 0)
You should see how 60 of pred does for you. Otherwise could be time to try Remicade or Humira. Hope you get better.

Welcome to the forum!
Posted 4/11/2013 5:33 PM (GMT 0)
You guys are awesome, it is calming just hearing from people that are in the same place. Although I wish none of us were here.

I have a call into my dr, waiting for call back. Thank you for advice, nutritionist didn't sound that great anyway, and any money i can save at this point is great. Will ask about higher dose pred or something.
Posted 4/11/2013 5:42 PM (GMT 0)
I have been lucky so far staying healthy with the kids this past winter but illness cycles thru the house repeatedly at times, daycare Petrie dish

Haven't heard back from dr yet, took one Tylenol and feel much better with rectal pain pressure, so I'm hopeful it is the hemroids.

Found Vsl on amazon, thank you for the recommendation. I'm will to try, had a prescription one from dr, forget name of course.
Posted 4/11/2013 6:20 PM (GMT 0)
Don't be afraid of the "big guns:" 6MP/azathioprine or Remicade/Humira. I am not mesalamine intolerant, but my inflammation eventually got too severe for mesalamine to help. I do not take steroids, so my doctor got me onto Remicade. It hasn't magically put me in remission, but I'm definitely on my way there now, instead of constantly getting worse.

I am on Remi and 6MP and besides a couple of short colds the first week I was on Remi, I've been 100% fine. 6MP might be giving me bad fatigue, though, so I might request to stop taking it.
Posted 4/11/2013 10:51 PM (GMT 0)
Knich: I am newly diagnosed with ulcerative proctitis and joined this site today. Your syptoms are very similar to mine and I can second your frustration. I'm not sure why this developed...and now I am wondering why I can't get the inflammation to settle down.

My symptoms are: urgency, straining, multiple small bms with blood, virtually no formed stools and much worse in the morning and seems to ease up in the evening a bit. Like you, this has had a major impact on my life and can be very frustrating. It's kind of hard for me to believe my ass has this much control over my life! :) I really want to take control back though.

I've tried: mesalamine suppository 2x/day...seemed to help, then got worse, hard to say, but no remiss
steroid supp 2x/day...also seemed to help, then got worse....
oral steroids 20mg/day...no change then increased to 40mg/day and maybe a slight improvement
I am scheduled for a repeat colonoscopy in a week or so

Over the last month I've given up caffeine and I used to LOVE coffee!
I've decided to committ to gluten free and I hope that helps.

What I don't understand is if this is an inflammatory disease then why wouldn't steroids cure it? I wonder if I am putting something in my body that is promoting inflammatio, which is why I am trying gluten free. I am desparate as you are as this is affecting my family life, my job, and my self perception. Hang in there and please if others have words of encouragement (like "yes, one day you in the future you will not poop blood") then please share. :)
Posted 4/12/2013 1:31 AM (GMT 0)
Bennyplay: I'm so sorry seems we have nonreceptive to steroids uc in common. Just talked to dr tonight, he is unsure of what to do with me and getting a consult with another dr about what next. He did switch me to proctifoam so hopefully can stay in colon all night as I am having trouble keeping in the enemas in. Also getting bently for cramping.

I have about 15cm proctitis with moderate to severe inflammation and dr hates to put me on the big guns for a small area, he wants to see what another dr suggests.

Ill tell ya how it goes!
Posted 4/12/2013 1:46 AM (GMT 0)
Benny: UC in a way is not really an inflammatory disease. It is an autoimmune disease where your body, for some unknown reason, either starts attacking your colon or something in your colon, which causes the inflammation. The steroids actually slow down your immune system so that it does not attack your colon as much. Unfortunately, unless you do another therapy with prednisone at the same time, prednisone only works while you are on it. Once you taper down or off your body resumes the immune attack all over again, causing you to be back to square one all over again. Hopefully the treatments you take with prednisone concurrently can keep you in remission once the pred is tapered down or off. None of this actually fixes the immune system problem though so you need to keep taking maintanence meds or treatments once in remission to stay in remission. If you quit everything once you attain remission, eventually your UC will come right back and often times future flares get harder and harder to treat. The goal is to attain remission and continue maintanence therapy to stay there. Don't ever stop.
Posted 4/12/2013 1:54 AM (GMT 0)
The probiotic I tried was florastor...
Posted 4/12/2013 3:32 AM (GMT 0)
I've had UC for 20 years but have kept it in remission using many, many things. Not drugs except when I have a flare up and can't heal. I've had a bad flare up since December, I'm on Uceris and Symtax Duotab, and supplements. Nothing's really helping. But, I just read about a probiotic enema and I did it last night and I can't tell you how much better I feel. I didn't wake up at 4am sick, I didn't have tons of blood or water and visits to the bathroom today, I ate a real meal and didn't get sick from it. I have energy like i haven't had in 3 months. I know I've only done it once (well, I did it again right after work), but I feel like it has to be the reason for my improvement.

Been reading about the fecal transplant and am slowly getting over the gross factor and plan on doing it as I've only read positive things from people who have resolved their UC. However, until I can get my donor tested and get up the nerve, this probiotic enema will suffice. It's much more effective than taking probiotics orally because it puts them right where they need to be.

You just boil some water or used distilled water. Let it cool, obviously. :) Add the contents of 2 or 3 probiotics, stir, and pour into some type of enema bottle. (I rinsed out my mesalamine ones and used that-it's just 60 ml.) It doesn't cause you any discomfort, you absorb it right away, and that's it. I did it last night, before bed, but I came home and did it again and was up running errands right afterwards.

Anyway, just wanted to share this because I've tried a zillion things to get this flare under control-eating restrictions, bone broth-totally disgusting, drinking clay water, aloe vera juice with other anti-inflammatory things in it, tons of supplements, homeopathy, etc. It's all about getting good bacteria back where it belongs. No type of food is going to do that. Anything I eat makes me sick because my body is so out of balance and the inflammation is out of control. I tell you, try this. It's easy, quick, cheap, and you're going to feel better, I bet. Plus, it's going to give your body a chance to heal since you won't be running to the bathroom all day and passing "stuff" so often. That's been the story of my life for 3 months. Good luck!

:)

jennifer
Posted 4/12/2013 1:16 PM (GMT 0)
Knich. There have been a few here, including me, who had bad reactions to Florastor. After just taking one dosage I began having a bad reaction with a lot of blood and diarrhea and frequency. It lasted about 3 days just off that one dosage. I threw it all away. For me I evntually discovered that I have a histamine intolerance and the yeast in florastor has a lot of histamine in it. This eventually led me to realize that the same thing happened to me when eating high histamine foods. I ordered the digestive enzyme DAO from Swanson and take it just before every meal, higher doses with high histamine meals, and I've haven't had any bad reactions since. I never took Florastor again though. You might want to investigate this angle.
Posted 4/12/2013 1:25 PM (GMT 0)
Thank you Gary for the information, there is so much I don't know! I am going to get my hands on some vsl#3. Couldn't find it in town yesterday, gonna have to buy online, thank god for amazon! Although right now it is hard to tell if anything is making worse, passing blood and only small amounts of stool, and pain. Scared to try new scared to not try.

Dr thought this would be a couple of weeks and I would be in remission and back to normal life, it has been since November it started and diagnosed jan/feb. I will get there!
Posted 4/12/2013 1:35 PM (GMT 0)
You can also buy VSL directly from the VSL.com website. I find it cheaper that way. There is also a DS (double strength) version requiring a prescription that is SOMETIMES covered by insurance. The regular strength does not need a prescription but is never covered by insurance. VSL is fairly expensive so if you can get it covered by insurance that helps. The VSL website has discounts for buying multiple items if it ever gets to the point where you want to buy more than one.
Posted 4/12/2013 2:35 PM (GMT 0)
Were you able to get more Canasa? Some of us use Canasa in the AM and a mesalamine enema before bed and that works really well for inflammation in the lower regions.

I think what you're going through is something we all deal with early on. It becomes frustrating when things don't work as you would hope they would but it will get better. You will find something that works for you and hopefully have a very long remission.
Posted 4/12/2013 5:59 PM (GMT 0)
Getting a script for cortifoam today, dr says I will probably be able to keep that in better then the regular enema, got some bentyl last night and got some sleep with Tylenol helping too.

Not doing Canasa right now, worried about sensitivity to mesalamine....although I don't know if that is only a problem taking orally? Have to ask my dr that one

Woke up not so great, went to acupuncture for the second time this am feel best I have in 2 days. I don't know if its psychological, but I don't care....took the edge off the pain and can function.

Ordered some vsl direct will be here next week!

My dr is calling another specialist to get his opinion on where to go next with treatment, which I love he is doing, I have a lot of respect for a doctor that says I don't know, and get another opinion.

You guys are awesome, just walked thru the grocery store searching posts for things okay to eat.

Thank you! Here's to a long remission full of good food, smiles and energy!
Posted 4/12/2013 9:07 PM (GMT 0)
First I want to thank all of you who have given your input as you understand that this is a scary thought that I might be on meds for the rest of my life! But I'm up for doing about anything that gets me into remission. I had no success with the mesalamine or steroid suppositories, but it sounds like some have had success with mesalamine ememas. The thought of being on steroids for the rest of my life is pretty daunting.

If this is autoimmune does anything believe that there is something in the environment that should be removed to reduce continued stimulation of the autoimmune reponse? Anyways...I'm gluten free for three days now as it seems like there might be something to that (reading Wheat Belly).

I also believe that I may have an anal fissure contributing to this as the bleeding has gotten heavier and I'm passing some smallish clots. That brings in some other treatment possibilities.

Thoughts anyone?
Posted 4/12/2013 10:51 PM (GMT 0)
The trouble is the immune system is very complicated. It creates "antibodies" to fight and attack hundreds or even thousands of different types of foreign invaders. Your immune system has like a computer memory to remember how to continue manufacturing all of these different antibodies. With an autoimmune disease your immune system is tricked into manufacturing antibodies to destroy something that it shouldn't actually be destroying. Lets just theorize that in UC your immune system has been tricked into destroying a "good" bacteria in your colon and the result of this attack is colon inflammation. Your immune system's memory remembers how to keep manufacturing this antibody and it does, continually attacking this good bacteria in your colon. In this example it might help to somehow remove this good bacteria from your colon so that your immune system does not attack it anymore. That would be a huge job since there are thousands and thousands of different types of good bacteria in your colon. Figuring out which good bacteria your immune system is actually attacking would be well, impossible to say the least. Assuming that you could actually figure out which good bacteria your immune system was actually attacking and you were able to successfully remove that bacteria from your system, you are still left with the fact that you are missing an important good bacteria from your colon which is actually supposed to be there, causing a microbial imbalance all by itself. There is no known way to untrick your immune system to stop making these antibodies against this good bacteria. Of course this is just one theory of how it all may be working but I think it shows that the whole process is so complicated that even the experts can't figure it out. Unfortunately, with an autoimmune disease, the solution is not so simple as just removing the environmental trigger causing the immune system to go haywire. You would have to actually figure out how to untrick the response from happening in the first place.
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