Ulcerative colitis
Somebody close to me has ulcerative colitis and I just want somebody to talk to who understands what I am going through.
I dont think people realize that when somebody has something like that it can affect family members too.
Ineedtovent There are about a dozen of us in the local area that I know of that have IBD. (Crohns or UC) That includes several well known posters here. There had been meetings of the CCFA over in Washington but the group has become a much more informal set of people that talk privately and infrequently.
If there is anything you need, just let me know. Believe me, when you go through it yourself, you understand EXACTLY how it can affect others.
GC I have ulcerative colitis, and I know, especially on rough days, it can be hard on those close to us. Without experiencing it, there's no way in the world to understand what someone with active IBD goes through on a daily basis.
Localchef Localchef - it's really good that you used the phrase "active IBD" because it's one of the things that's very tough for a person who does not have the disease to understand.
Modern medications today can often make a dramatic impact. I spent a whole 8 years in complete remission because of it. That makes it seem like the disease doesn't even exist. Yet a flare up comes along after all that time and all of a sudden you're on the bathroom floor in pain its so bad. That change can come within a week or two.
I completely get what he dealing with, he hass been dealing with it for a long time now. Just frustrated me when hes not having issues he still won't help around the house. I feel like a maid sometimes. I'm afraid to say anything in fear of upsetting him bc maybe he is having a bad flare day and he just isn't saying anything.
GC, I was diagnosed in February, and so far, I've been on 2 medications, Lialda and Humira, both with very mixed results. My body has outright rejected the Humira, and the Lialda, for the most parts, keeps my symptoms moderate to minimum.
Ineedtovent...have you asked him how his UC is? Does he always use it as an excuse as to why he doesn't do things? I don't necessarily let people know when I'm having a rough stretch, and try to get along as if all is normal, but hard. I don't know your situation, but is it possible that he does things that you don't help with as well, andpossibly sees things as even Steven?
The NIH has this to say about IBD treatment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5193087/
Or a recent article in Newsweek: https://www.newsweek.com/cannabis-could-treat-colitis-and-crohns-disease-study-mice-suggests-1067458
And info on a current clinical trial (again from an NIH website): https://clinicaltrials.gov/ct2/show/NCT01037322
RAD I have UC and have been diagnosed with it maybe 8 years ago. For several years before going to a Doctor, my life was taken over with making sure I was near a bathroom anywhere I went. The thing with UC is that when you have to go it is Immediate not to mention the pain and cramps, which finally made me go to a Dr.. I was hospitalized at one point and afterwards I was prescribed Sulfazalazine (spelling) which I have been on ever since along with folic acid. I was told just recently by the Doc to cut back on the meds since I seem to be in remission now. I do have occasional mild flareups which are usually gone after a day or two. I know its always there and it can be an issue at times but all and all I live a fairly normal life now and am able to take long road trips etc. without issue. Its important to keep up with your Dr. appointments and the occasional colonoscopy.
Boobalaa Localchef - Lialda/pentasa/ASACOL/mesalamine/etc. are all maintenance drugs and I think most of us take those even if on other meds. You and Boobalaa are both lucky if that's all you need to keep it at bay. From my experience the few times you do get a little worse they supplement a bit of steroid as needed. I know when I was still waiting for clearance of a drug I had to do that temporarily. It surprises me that they tried Humira without going through other drugs. I was on 6MP for my 8 years of solid remission and that has way less complications and costs next to nothing. I was told that's usually the step after occasional steroids isn't enough. It takes 6MP (or Imuran) a while to build up, but then it's very effective.
Boobalaa - so right about visits and being proactive. It's so easy to be in remission today, let it go, and all of a sudden end up in a flare just by the nature of the on again off again disease.
Ineedtovent - No matter what the situation, don't let it stop you communicating. There's no substitute for that. My experience is also that it's either active or not, and it's either bad or its not. And when it's bad, it doesn't go away quickly. I don't think it would affect house work so much unless it's so bad to be in the hospital. Constant quick off to the bathroom suddenly for sure. Just like Boobalaa said. If you want a quick way to know how he's doing, it's what the doctor asks me every single visit - how many times a day are you going to the bathroom? If it's 2-3 then you're good. Going 8-9 and you know you're not.
Contact us off line if you want.
GC...I was hospitalized back in February, due to anemia from the colitis, and was immediately put on a very high dose of Lialda. It worked wonders until it didn't. Dr. gave me prednisone, which did not help, so in an effort to treat aggressively and try to get me into remission, he went straight to Humira. The Humira didnt work, so I was put back on Lialda, which worked wonders again until it didn't, and now symptoms are returning. I have a phone call into the doctor to see what the next prescribed course of action will be. I think they will go to a different biologic.
Fortunately, I have not dealt with the pain that I've heard about from others...discomfort, yes, but not pain.
I have had a couple of flare ups over the last say 6 years and was prescribed a drug I have to take for two weeks which gets everything back on track. Didn't mean to make it sound like it was cured. I don't think there is a cure. but it is very manageable right now.
Localchef - That sounds very similar to my case where it was 9 years ago now where I ended up in the hospital but it was much worse than just discomfort or cramping. Horrible on the floor type pain. Prednisone didn't help me either, and was told they could try Remicade but the results were often not that great as a "rescue" situation. I've also been told Humira is similar to that - a long term drug not a short term one.
I went on cyclosporine for a month which is what I told had a 20% better out come than Remicade in that situation. And it kicked the UC straight back into remission within 48 hours. And it stayed that way for 8 years. They can't use 6MP as a short term either because its not strong enough and it takes a few weeks to build up gradually. So after the cyclosporine did its job, they gradually lowered that and built up the 6MP. I have to say it sounds exactly like something they would have tried in your case. But the caveat is you have to be in a bigger hospital on cyclsporine because you need in house testing of levels so you get results back within 24 hrs. You need care willing to transfer you, which luckily I had.
By the way - I don't know if one of the new ones like Simponi or even Stelera (more common for RA) would be a next step. I think those are about the same level as Humira. If they go for more powerful then I think it's Remicade that I'm on. I may end up seeing you at the infusion center if that's the case. ;-)
Good luck to all of you out there. There are a number of others around too if anyone needs to talk. Just click on the envelope by my name.
I got a call from my doctor, and the next step will be taking xeljanz(if my insurance will cover it) in conjunction with the Lialda. Xeljanz is the one of the newest biologic approved for UC treatment and I think the only one in pill form....they really are trying to stay away from steroid treatment. Fingers crossed...
I've heard on the message boards that Xeljanz was being tested on IBD just like Stelera. Both RA approved for a while, but approval for UC must be very very new. They're definitely doing you a favor by getting away from prednisone. But it also wouldn't surprise me if insurance made you try some less expensive options first. It's like some of the statins - they want you to try generics first before going to the brand name only ones. But then again if they already approved Humira instead of the cheaper ones, you may get approved. Most likely you'll end up at the biologics eventually anyway.
You called it GC, I got denied xeljanz because I have not yet tried a horizon Blue approved treatment and failed(Simponi in this particular case). Until something is figured out, looks like I may be going the way of prednisone for the time being, as the lialda is just not effective enough.
Many of these drugs cost more than a mortgage on a moderate house. My heart bleeds for those of you who are unable to get health insurance and medications you need in what is supposed to be the best country in the world. Martin Shkreli types rule here.
Good luck to you all. I hope you are all able to get the help you need.
Dodgebaal Thanks Dodgebaal, I understand that big pharma needs to make their money back for R&D, but 20 year patents on drugs allows them to charge ludicrous amounts of money... I just picked up my Lialda today(generic form), and if my medical expenses for the year weren't maxed out already, it would have cost me $700 for a month's supply. Cash price for one month was $1,005. People are often faced with the dilemma of whether or not they can take medicine purely based on cost, and that is a horrible decision to have to make...I've had to myself.
On the bright side, I very recently made a complete career change in order to get the medical coverage I need. I can always cook at home, but cooking doesn't often provide the stability or availability of resources when medical needs arise.
Generic Lialda (mesalamine) should be more like $400. But it did used to be at $700 for the brand names Pentasa/Lialda/ASACOL/etc.
But that's cheap compared to the Humira range of drugs which are about $6500/mo without insurance. But even that is positively nothing compared to either Remicade or Entyvio - $29,000 per dose. It's every other month mind you, but still a whopping $14,500/mo.
The biggest part of the scam though is that those are numbers for people without insurance who can't pay. If you do have insurance, for absolutely no reason what so ever, that $29,000 bill goes down to $15,000. And out of it you pay $5. Yep, all of $5 because the drug makers reimburse your co-pay. They essentially give the health care provider a $3000 kick back, funneled through you. Crazy unfair to the rest of the world.
Localchef - Shouldn't be a big deal but you should be able to get on Simponi quickly since its their approved drug. Then if that doesn't work it'll be what ever alternative your doctor chooses. It'll be far better than the mood swings and food binges of prednisone.
Well, Simponi came, saw, and went with zero effect...I've been holding on with prednisone for the last couple months. New insurance finally kicked in, which approved the Xeljanz hassle free, started it yesterday...fingers crossed.
We are at a point at my new job where being outside for extended periods of time has become the norm, so fortunately the prednisone has been keeping symptoms somewhat at bay...
Look into keeping 100% away from all milk products, all gluten products and sugar.
Hackresident https://www.google.com/search?source=hp&ei=A4HyW5zrGYXp_QaHlqqoAg&q=no+milk++no+gluten+no+sugar+for+ulcerative+colitis&btnK=Google+Search&oq=no+milk++no+gluten+no+sugar+for+ulcerative+colitis&gs_l=psy-ab.3..33i299.9325.17791..18305...0.0..1.210.5559.25j24j1......0....1..gws-wiz.....0..0j0i131j0i22i30j33i22i29i30j33i160.COqNds8lRzw
a girl I know suffered with it for 20 years. did nothing but take those medications and stick with her 2 (stupid) doctors in the 2 states she lived in through the years. I forced her to go to a nutritionally, holistic healing, natural healing doctor, who did blood work on her for ALL foods, to show which foods showed INFLAMMATION (low/moderate/ or high). it showed what she was REACTING to w/ inflammation (regular doctors have no clue about these tests). after years of not listening to me, I actually found her a doctor in another state, and she got this and other tests, followed the diet, to include absolutely NO dairy, NO gluten and NO sugars. she was doing great with the bleeding disappearing and other issues gone, and 'the obstinate one' went back to her old w ays thinking she was "healed", and she went right back into bleeding and other issues. and I told her that if she didn't follow that diet for a lifetime, she will negatively lead down to the road of possible colon cancer.
I attached a Google link above. read many of the articles ! good luck (don't think it's b.s., it does work, but with time, months, 4-6 months, then it has to be stuck to).
Good Rx.com.....I thought it was crap. Recently found out that if a medication isn’t covered, this card takes off a lot! I needed medication, authorization expired (that can pop up unexpectedly, I was told no advanced authorization until it becomes rejected), my price would be $740. I couldn’t wait for authorization approval. I brought that “GoodRx” card in, dropped the price to $167. For many years, this medication was $7 or free, until “things changed”. Anyway, authorization finally went through, after an appeal (bless the doctors office). Pharmacist (bless his heart), called to let me know that he reversed the $167. This is bull. Doctors, office staff and pharmacists have been pulling their hair out, all year long, dealing with the healthcare greed, trying to do what’s best for their patients.
Guilty-Remnant Localchef - You're the first person I know locally that's going to be on Xeljanz. I looked it up for the latest info and the approval was June of this year. It's NOT another one of the biologics like Simponi, Humira, Remicade, Cimzia, or Entyvio. It's not one of the immune modulators either. (6mp/Imuran) It's an enzyme blocker so a completely different type of med from the others. Hopefully that difference is the right ticket for you. Particularly while on prednisone if can be very difficult to keep positive. Hang in there and keep at it.
I think most of us who actually have the disease have heard any number of anecdotes. I know a guy in a software business that we partnered with for many years. I found out he has IBD when I told him my diagnosis. He never took any meds for over 20 years. And he had his go away after 4-6 months of doing nothing at all - no meds, no doctors, no diets, no treatment of any kind. That's one of the issues that makes all of the typical "one weird trick" type solutions so prevalent. The IBD related forums are always full of them. Eat this one cookie, never have a flare up again. Stop eating beans and you're cured. Eat only beans and you're cured.
In the end it's not a dietary disease. But I think a lot of us have also heard about the cases where people have been misdiagnosed. Celiac in particular can be an issue, and people on those gluten free diets turn out not to have had IBD in the first place.
There are links above that are not actually what the NIH says, but are in the NIH library because they're medical journals. They're good to keep up on, and the whole issue of CBD (one of the non-intoxicating components of hemp and marijuana) is something I'm sure we're all waiting to hear about. The one link that discusses how the chemistry behind digestion was very interesting. But as the study suggested they're not sure yet what the final results are going to be.
One of the other web sites pointed to this very good article about diet. It says what the IBD forums are full of. So many many people have tried diets and nothing has really worked to end the disease. And the article shows that with a review of a number of studies. But it also makes a very good point about not forgetting about diet. Low Vitamin D for example is something many IBD patients go through. But their conclusion is diets are generally more important with overall health instead of some kind of cure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4716043/
my firend doesn't have "celiac" , but gluten is INFLAMMATORY.
she took Natrexone LOW dose and that helped. and lose dose steroids and weined down to almost nothing.
my friend also takes high dose glutamine powder to heat the insides; and digestive enzymes and probiotics, just to name a few.
she even admitted to me that the foods that make her inflamed (via special blood work, not for "allergies" but for "inflammation"), which wound up being the ones that she eats a lot, to include wheat (especially!), rye, oats and barley, and especially anything containing Milk (!), and sugars that are inflammatory. hard to believe, but just look up on Google, "inflammatory foods" = isn't colitis and crohn's due to inflammation?
if anyone wants the name of the company that does this bloodwork, there are 2, i'll try to find them out.
Crohn's and UC are autoimmune. Not food reactions. IBD is caused by internal agents, not external. You can be on IV food and still have an IBD flare.
my friend was doing great with food eliminations, and she thought she was healed, and went back on the inflammatory foods that showed up in LEGITIMATE bloodwork (ones that regular internists do not do!) and started the bleeding again.
do a google search for "inflammatory foods with ulcerative colitis and crohn's" and see what comes up. there are doctors out there who deal with this, but they are nutritionally-oriented holistic, natural healing doctors.
is there milk and wheat in the IV food?
My doctor advises me of foods that may aggravate me more while in an active flare...but is pretty direct in saying certain foods will not either be the direct cause of a flare up or the other way around. While active, he encourages leaner meats, very well cooked vegetables, pasta, bread, yogurt, etc... I dont have any food intolerances, though raw fruits(for the most part) and vegetables are deal breakers at the moment. If and when remission is achieved, have at it he says...just to keep in mind to have a healthy, balanced diet like anyone should.
Hopefully the xeljanz helps...going rounds with medications with spurts of prednisone between is tiresome. I guess the target with the xeljanz is remission in approximately 8-10 weeks, so we shall see. Stelara hasn't been approved for UC yet(that I am aware), but doctor says that, as well as a couple others, may be something to look into before entyvio.
Commenting is no longer available.