Need your input on the effectiveness of time

[AniBlue]

Hello everyone,

I just registered to the forum because I need some advice from people who have direct experience with IBD. So your help would be greatly appreciated.

I suffer from ulcerative colitis. I've been diagnosed about 5 years ago. I've had to take Prednisone on different occasions (when my symptoms were out of control). Right now, I'm tapering off and I should be done in about 2 weeks. As you may guess, I'm really looking forward to it because of all the side effects associated with this drug.

Unfortunately, this time around, Prednisone hasn't worked as well as it usually does. I'm feeling a bit better than a couple of months ago but my symptoms are still difficult to deal with. Which is unusual because the other times I took Prednisone, my symptoms were a lot better at the end of the treatment (but still present - I've never been in complete remission so far). I'm worried about having to go back on full doses of Prednisone since all I want is to be done with it!

My doctor has previously told me that inflammation NEVER goes away on its own. That once your symptoms gets severe, you absolutely need to take Prednisone (or other medications such as infliximab) because time in itself will not help.

My question to you: I would like to know what has been your experience? Have you seen your symptoms getting considerably worst and then, improving over time without the help of any medication? Can patience be enough, sometimes?

N.B. This is a very short summary of my situation. Otherwise, my message would have been way too long. ... But just so you know: I've taken drugs like remicade and purinethol before. And not only did they not work, they made me sicker. So this isn't an option for me.

 

[AniBlue]

Anyone? :sign0085:

 

[Lady Organic]

Hi I have UC-like Crohns, meanining my disease is mostly UC. My personal experience is that my flares always gets worse as days go by. In no way it could retract and return to better state naturally. Without medication intervention, the way my flares go, my intestine would be dead already!!! I need a 50mg course of prednisone to really calm things down and bring to full remission. Whintins days, I am in full remission (like a miracle), except last flare it took about 2 weeks for prednisone to kick in and that was pretty scary. Even if pred brings me to remission, weeks after, my disease return, so I absolutely need another maintenance drug.

its not impossible for people to see their disease go naturally in remission, but this has never occurred to me (sadly!). If you have been struggleling for 5 years since diagnosis, It seems its more than time you explore other pharmaceutical avenues with your GI. You should not accept to struggle on a yearly basis. Ongoing chronic inflammation even if minimal is really to be managed entirely in order to avoid increased risks of future complications including colon cancer. have you ever taken mesalamine (5-ASA) pills or suppositories?

 

[InkyStinky]

Hi! Welcome!

From my own experience and from hearing other's stories, it sounds like nearly every case of IBD needs treatment. What the "treatment" is differs widely - med(s)/surgeries/drug trials/elimination diets/"alternative" treatments/some combination of these things/etc.

I've heard stories of people who are able to reduce their meds when they find the diet/nutritional plan/lifestyle that works for them. Have you tried anything specific like SCD, IBD-AID, auto immune paleo, etc? (with very well cooked maybe even pureed veggies). If you search the forum you can find more threads on those.

Also, have you ever tried a liquid elemental diet? If I understand correctly, in some cases it's comparable to steroids in effectiveness in getting inflammation under control, though once you stop inflammation/symptoms usually occur quickly if there is no other effective management treatment in place.

IBD is so diverse I try never to say "Never" about anything :lol2:

But inflammation does damage and it is something to aggressively get under control asap. How you get it under control is the issue.

Guess my two cents is: treatment can take time, but if you have active inflammation time alone is highly unlikely to resolve anything, and there's too much risk of damage/escalating disease/etc.

:ghug:

PS: Have you had your vit D levels checked?

 

[AniBlue]

Thank you so much for your replies.

To Lady_Organic: I wish Prednisone was that good for me. I also start at 50 mg and it certainly helps but it doesn't entirely fix the problem. Usually, I'd say my condition improves at 80% but this time, maybe 60%. Which is weird because I've had crisis more intense than this one.

Since I've been diagnosed, my health condition has oscillated between "very bad", "bad" and "meh". To give you an idea of what that means... At my worst, I was going to the toilet 20-25 times daily (lots of pain, blood and mucus). And at my best, I was going to the toilet around 3-4 times daily (some pain, some mucus and some "urgency" - meaning I have to find a bathroom in the next 2 minutes or else...).

I had been in that state (at my "best") for about two years. But last January, I've experienced a lot of stress and got pretty sick again.

Now, to answer your question... I'm on Asacol. 6 X 800mg, which I think is close to the maximum dose. I've been taking it for the last 5 years but honestly, it doesn't seem to do much. My doctor still insists that I take it (just in case) so I'm sticking to it.

I also take Cortifoam, on and off (partial success for me as well). I've tried mesalamine through enemas but I just can't tolerate it. As for suppositories, my doctor told me it wasn't worth it.

As I said, I've also tried Remicade and Purinethol... Didn't work either. My doctor would like me to try other immunosuppressants but I'm very reluctant. Last time I did, I got very ill and had to take strong antibiotics for a whole year before I got better.

So maybe you can see why I feel like I'm in a dead-end.

To InkyStinky: yes, I've noticed the same thing. So many different things work for so many different people!

I've tried the SCD. Twice. Each time for about 2 months. I followed it religiously. But there was little improvement so I didn't continue. Maybe I should have been more perseverant?

Right now, I'd say I'm doing a mix between SCD and paleo (for example: I eat sweet potatoes so I'm not completely SCD and I eat cheese so I'm not completely paleo!). I'm 100% gluten and refined sugar free. Everything I eat is homemade. I eat a bit of dairy but it's all low-lactose.

I haven't tried auto immune paleo. Maybe I should. I've also thought about trying FODMAP. I've never heard of IBD-AID but I will definitely look into it. I see that Lady_Organic has a link in her signature so I will check it out. I haven't heard of the liquid elemental diet either. Sounds interesting! I will google it.

No, I haven't had my vit D checked but I'm taking calcium + vitamin D supplements while I'm on Prednisone.

Last but not least... I agree with both of you: ongoing inflammation is risky and worrisome. But unfortunately, for 5 years now, the inflammation seems to always be present. It goes from mild to severe (and vice-versa) but it never leaves entirely.

 

[Lady Organic]

sorry to read your struggles. when you started purinethol, did you use it alone? what dose? are you sure it is purinethol and not remicade or the combo thereapy that caused you serious side effects?

there is Methotrexate weekly injections I have tried (but failed) which you could try. I encourage you to pursue pharma avenues. i believe the risks of complications from untreated UC are more important than risks from medications. you gave some good trials to diet without convincing improuvement. Thats my case too, Im still not giving up on diet and continue on it, but I know i need maintenance meds. have been on diets since a good 4 years now. Enteral liquid diet has only been shown to be effective in Crohns disease only, and not for UC unfortunately.

there are also several clinical trials of fecal transplants going on in the world. You could enroll into one if that interests you. There is a thread on the forum about it. i tried to enroll into one when i flared last time, but I was finally discarted from the research.

 

[AniBlue]

First of all, sorry for making a typo with your name! I just realized it's Lady Organic, not Lady_Organic.

I was prescribed Purinethol when I first got sick. Because I was severely ill and they were considering removing my colon. So even though I had just been diagnosed, they took out the big guns right away.

So first, I took Prednisone. Then, a few days later, I started Purinethol. And maybe a week later, I started Remicade. So basically, it all happened almost at the same time. With all this heavy medication, my immune system was out of whack. And that's how I caught intestinal histoplasmosis (on top of my ulcerative colitis!). Which made me really sick. But that's not the worst part. Histoplasmosis is most likely deadly for people that are immunosuppressed. So I was extremely lucky that specialists found out about this in time. I immediately started taking Sporanox. A year later, I was cured. But that was super scary.

Anyway. In other words, I'm not sure what caused me to be vulnerable to intestinal histoplasmosis (a very rare disease. My doctor was almost excited to have a patient with this!). Most likely the combination of those different drugs but we'll never know for sure.

If I may ask... You say that you've been on diets for 4 years. What diets did you try? I used to think that I might be sensitive or intolerant to certain foods but after some experimentation, I doubt that's the problem. With everything that I've been reading lately, I'm more and more considering the possibility of bad bacterias in my gut. So my main goal is to fill my gut flora with good bacterias. I'm hoping choosing food wisely can achieve that but it may be a long and difficult road that could lead to nothing. But I'm willing to try anyway.

A fastest way to get there seems to be fecal transplants. I did hear about it but I thought they were not available in Canada (I'm in Quebec too, by the way). I didn't know we could enrol in clinical trials. I will absolutely check it out. Did you talk about it to your doctor or did you do your own thing online?

Thanks again for all the advice! It's much appreciated.

 

[InkyStinky]

Have you seen this thread on Fecal Transplants? Interesting stuff! http://www.crohnsforum.com/showthread.php?t=52400

 

[AniBlue]

Hello InkyStinky!

Yes, I saw that thread. But from what I understand, it's about self-administrated fecal therapy or did I get it wrong?

I'd like to participate in clinical trials but I wouldn't be brave enough to try it on my own.

 

[Lady Organic]

Bonjour AniBlue!

Ive been thinking about you I just read quickly on histoplasmosis and it seems very immuno-suppressed people are more at risk. The medical combo you were on seems like no coincidence. Taking these medication individually may not be as aggressive and possibly increase better tolerance. just my thoughts. It is sure that the more we add medications, the more we increase our risks of side effects. i was watching this medical show and the subject was about the important number of medical emergencies and problems caused by pharma medical treatments. I dont remember the exact numbers, but it was suprisingly elevated. your particular case seems pretty rare indeed, but other more common problems often happen too to need medical assistance.
my first GI never panicked with my case and always tried the minimalistic approach with very close monitoring eventhough he rated me several time III/III for severity on his reports. Thats the way I want to continue my medical journey, especially after I got an horrible experience with a rhuematologist and hand surgoens who wanted to operate me with wrong diagnosis...(but thats another long story!) (and BTW , I often read of patients being told at diagnosis that operation and removing of the colon is being considered and who finally live well after with minimal therapy.) after 2 years of ups and down with my initial colitis and evidence of minimalistic treatments failure, my GI decided to move on to purinethol, which worked perfectly on maximum dosage. initial dose was not enough. Took about 6 weeks to be effective. Full deep remission, perfect health for 7 years after. Flared when I stupidly decided to stop taking it.

On diet subject, I have tried several. I iniatilly started with Jean Seignalet diet which you may have heard of in Québec by author Jacqueline Lagacé. No luck, flare. Seignalet mentionned his diet was not effective with the 9 cases he had of UC. but it was very effective for his 78 or so CD patients. im trying anything because I am indeterminate colitis. then I tried IBD-AID and now I am mostly on a paleo diet including concept of IBD-AID such as increase in fermented veggies and prebiotic vegetables. I eat lots of nuts (raw almond butter +++), natural oils, fruits (not all) and vegetables and sometimes some cold water fish. nothing else at this moment, since about 6 months now. Im hoping to remain on lower dose of purinethol, which failed in the past and which my GI will refuse to increase due to past evidence of toxicity in my body. i combine with suppositories of 5-ASA, because my disease always starts in the rectum. next step would be biologics.

about clinical trials. yes you have to research them on your own. here is the site : https://clinicaltrials.gov/ct2/results?term=ulcerative+colitis+fecal+transplant&Search=Search

I provide you with a direct link with the Ulcerative colitis and fecal transplant trials going on. Theres none in quebec so travelling becomes obvious unfortunatelly. McGill university and GIs do a lot of trials, but unfortunately only on Biologics at this time. some doctors are open to trials, others will discourage patients. in either case, you dont need your doctor's approuval in order to get into a trial. The decision is solely on the researchers' side to include you or not depending on the criteria they are looking for. my GI was open when i talked to him about fecal transplant trial and was ready to collaborate and explain my case to the researchers if that could help me.