Introduction:
I’m Jamie, I’m 17 and from Dublin, Ireland. I was diagnosed with Ulcerative Colitis in September of this year. I was also diagnosed with A-typical Autism the same month as UC, which makes it harder for me to cope with my condition (I have hypersensitivity, so I don’t like being touched or examined, and I have a huge phobia of needles, so routine bloods are not so routine with me!) HOWEVER! I’m not extremely disabled, as someone might imagine when they hear Autism being mentioned.
My Current Ulcerative Colitis Story:
This is my 3rd post here, I really need to find somewhere else to vent! lol
The last time I posted, things were sorta looking up, I had remission in sight and everything was starting to get well again, but unfortunately all good things come to an end!
About a week ago I changed medications from Pentasa (3 times daily medication) to Salofalk (a once a day medication), up to this point I’d been experiencing no symptoms of U.C apart from stomach pains and blood on the tissue (and sometimes in the bowl, but not a lot).
I seriously thought it was a miracle, but I was finding it hard to take pentasa 3 times a day and to try get my life back, I didn’t want to have to take medication in the middle of the city! I’d tried it a few times, but I felt it would be best to try a once daily medication instead.
The first day after taking Salofalk was a complete miracle!
I had absolutely no pains, no cramps, no symptoms at all! not even blood! and completely formed bowel movements!
The taste of the granules made me feel sick at first, but I decided I’d continue to take them, but the loss of symptoms was to be short lived :(
The next day I had absolutely no bm’s, but a lot of cramping and pains, I also developed a huge infection on my tooth and jaw (probably due to the prednisone)
I continued to have no bm’s for 4 days!, but I was starting to pass small amounts of mucus and blood so obviously something was wrong…
Eventually, I started to have bm’s again, but they were no longer formed and had blood in them, it sucks so much to think you’re finally well and then BOOM you’re back to square one.
Next step is Imuran, but I’ve decided I’m going to try the natural alternatives before I go on anything that will affect my immune system, I know that many people have had great success with products such as aloe elite and serovera, so i’m willing to give them a try!
I’m pretty damn scared of the effects that drugs like Imuran can have, I love going to huge social gatherings (like concerts and festivals) and pretty much always catch something after being to one, so if my immune system was further weakened, I’d be afraid I’d catch something much worse!
But things have not been ALL bad for me lately! I wanna point out that there is life after Ulcerative Colitis!
I’ve started taking my social life back, I went to the cinema with my friend and even bought popcorn! That would have been a serious no-no a few short months ago, I’ve also got plans for this weekend to go to a live Q+A with Phillip Defranco (sxephil from youtube) with a few friends from school (who I haven’t seen since April, when I had to drop out! but I’ll be going back in Early November!)
Also, I’ve started planning a trip for next year when I turn 18, I’ll be travelling around mainland Europe for 3 weeks! Colitis won’t get in the way, no matter how hard it tries, even if i’m poopin’ all the way down the streets of Rome!
My life at the moment is totally looking up, I know that I’ll beat this flare eventually and I’ll be able to do whatever I want, It’s just gonna take some time.
If anyone is currently taking aloe elite or serovera, i’d like to hear from you especially, if you could let me know how it worked for you!
Oh, and Adam, I’d like to see you put in a good word for them, seeing as though they have an advertisement spot on your website :P if you don’t think serovera will work though, i’d like to know before I waste a lot of money on it!
Medications:
Current medications: Salofalk Granules 3000mg once daily, Caltrate (calcium + vitamin D) 600mg + 400U twice daily, Acidophilus 2 capsules once daily, Prednisone 10mg once daily (tapering 5mg a week from 40mg)
Past medications: Pentasa Granules 1000mg 3 times daily (worked well, but wasn’t convenient)
Submitted by “Jaime” in the Colitis Venting Area
I’m From Dublin, Ireland
Back in November 2010, I noticed some changes to my bowel habits.
Before this, my bowel motions were pretty much once a day, normal motions, but on November 5th I started to get looser motions, which became more frequent, at the start I thought this was absolutely nothing to worry about, and within 2 weeks it sort of returned to normal.
Hey Jaime, that’s too bad that the salofalk didn’t continue giving you some success for longer. I know there’s been quite a few people from the website who have had some great success with it. As for your question about serovera, I myself have NOT tried it, so I don’t have any first hand experience with it, but there are many people who have had good results. I really can’t give you any further advice than that because i myself have not used it yet. Hopefully you will get some other opinions from others here. (Please take some pictures when you do make it to Rome, I want to see them!)
Hey Jaime,
I have been in a vicious flare since June 2011. It started in June with some blood every once in a while. Then picked up to going to the bathroom between 15-25 times a day. I’m still fully in this shitty flare, but I’m hoping that the last two days have not been a fluke. The last two days the number of times I went to the bathroom was 12 and 10 (and today I’m at 12 again already dammit), but that’s actually kind of good for me. I have noticed a little less blood than normal and my stools seemed to be more formed, although they are often accompanied by the squirts. Anyway, the reason Im telling you this beautiful story is because I have been taking AMP Floracel for the last 12 days. I believe AMP Floracel and Aloe Elite are the same thing. I’ve read that the owners used to be together, they had a nasty breakup and each one kept selling their product under different names. Anyway, I bought AMP floracel, they send you a packet full of information regarding diet, diarrhea and all kinds of stuff. The diet is similar to SCD, but it allows other things like rice and potatoes. I talked to a guy from one of the testimonials on the AMP website and he told me it took 2 months for it to work for him, so it does take some time so I’m not to worried about my small successes at this point. The stuff is expensive, but so is the hospital, doctor visits and all the medications that come with this bastard of a disease. My advice to you, do it. Don’t wait any longer. Read all the testimonials on the AMP website, I’m sure you’ll find some that hit home. I truly think this is the one thing that might be helping me, because the prednisone I’ve been on for 3 months and the Asacol sure aren’t doing shit. I also just started taking a probiotic after my dumb ass doctor finally suggested taking it (after me asking him several times) after seeing his dumbass since February (sorry, hate my doctor right now). It’s like I have to come up with everything before he’ll talk about it. I’m switching doctors. Anyway, I hope I can report more good news within the coming weeks cause I want my life back and I’m sick and tired of pooping. Also, can’t tell the difference between farts and poops anymore (haven’t been able to for months now). I feel like I could cut back atleast 5 trips a day if it weren’t for my poo/fart ability being completely gone. Good luck, order that stuff now!
Blake
http://ampfloracel.com/html/testimonials-colitis.html
Hey Blake, thanks for the reply!
I’m gonna order them asap, I’ve been taking 20g of aloe vera supplements lately and noticed a difference in the short time, not a vast difference, but a small improvement, and this AMP stuff seems to be a lot higher concentrate and a lot higher dose, so it seems like it could be of benefit! :D I’m gonna give it a try, you can’t lose if you dont try, right?
I hope things get better for you soon, I know how much this disease sucks and I was the exact same only a few weeks ago, I’m so afraid of getting that sick again!
Oh, and Adam, most people have success with the salofalk enemas, the problem is I have pancolitis, so enema treatment would be unaffective according to my doctor, so he has me on Salofalk gastro-resistant delayed release granules, but all they seem to be doing is making my hair fall out!
and I will definately be taking pictures in Rome! :P
I started AMP about a month and half ago with great results…I have tried many natural products along the way and the AMP has made the most healing change with me. I also started the Vit E cure last week with postive results. I have no urgency, no blood.down to one or none bm per day…YAY!!!fingers and toes crossed…amp is expensive but to me worth every penny if it keeps me under control without meds..I have NEVER taken meds for my UC and will fight this disease tooth and nail to win.
Thanks Jamie,
I just have more positive news. I hate to say anything cause I’m always afraid of tomorrow, but it’s 8:22 pm right now, and I’ve only been to the pot 5 times today, which is way lower than any day the last 3 or 4 months. I was actually able to keep an hydrocortisone enema in last night the whole night through which I think helped me out today, but I think the only reason I was able to keep it in was because of the AMP working it’s magic. Definately order that stuff and good luck. I was surprised to not hear so much about AMP on this website, a lot of people don’t know what we’re talking about. I’m hoping to give it a nice endorsement after I really can confirm that it works so I can spread the news. It’s nice to see Erica’s comment about it, that just gives me more hope. Take care.
Blake
I have studied all of the natural options to avoid having to take any drugs more potent than mesalamine. I have not taken Aloe but here is what I have learned about the others:
a) Fish Oil – I take a teaspoon of a product made by Pharmax two to three times a day and this definitely helps.
b) Probiotics – I used to take a product made by Ortho Biotics (about 5 billion per dose) but did not notice any benefit. Then, I was given another product by Pharmax that is about 30 billion per dose. Noticed some improvement but not significant. I did some research on probiotics and found out that the strain and dosage is key. The only clinical evidence (I am a fan of evidence if available) I could find to support probiotics effectiveness is a product called VSL3. The strains are formulated specifically for UC and the dosage is 450 billion per dose. While I was not flaring when I started it, I have now been taking it for two weeks and it feels like I upped my dosage of drugs as I feel even better than I did before. In the United States, you do not need a prescription for it and if you look on the company’s website, you can find where you can buy it. The drugstore where I normally go does not stock it but can order it for delivery the next day (go to the pharmacy) which I suspect will be true at all pharmacies because the product does have a shelf life. As an FYI, the cost is about $80 USD per month.
While I have not taken Aloe, I did find a link to some articles about Aloe in medical journals that you might find helpful:
http://mymedicalfinder.com/ulcerative-colitis/treatment-options/alternative/supplements/aloe
William
Hey William, that sounds really promising about your VSL#3 use! Hey, I wanted to know how much of it you take each day? Any idea as to how many pills you take of it daily or weekly?
Hi Adam,
It comes in a sachet so you have to blend it with water. It does not taste very good but I hear there is a flavored version which I may try next. That said, it’s not too bad and better than swallowing lots of pills. Maybe I should do a post in a few weeks with results?
William
Hey William and Adam! :P sorry to butt in here
I was actually going to try VSL#3! I’ve been onto their Irish representative company (Ferring for anyone irish who may stumble upon this) and they told me that 30 sachets would set me back €88!(including VAT and Fedex next day delivery, that’s probably about $130)
It’s a bit expensive, and to be honest, i’d rather have a pill form of VSL#3, but they don’t distribute them here (it would be easier, I’m already swallowing 14 pills a day, another 2 wouldn’t make a difference!)
let me know if it’s doing any use, I might buy it and put it in milk or something to disguise the flavour!
Hi,
I have put a note on my calendar to update you in two weeks and let you know how I am feeling but so far I am optimistic. Like I said, I have not noticed a big improvement with probiotics but this is different.
That is too bad they are charging you shipping. The local drug store is not charging me for the overnight shipping.
William
Well, it’s coming up on 4.5 years since this conversation. I’m considering trying amp floracel. Did it work for you guys?