Post # 1
I’ve seen a few threads about IBS, but I was wondering if anyone here has Ulcerative Colitis. I was diagnosed 8 years ago, and at the time ended up in the hospital for a month on TPN (Total Parenternal Nutrition), where I wasn’t even allowed to drink water, far less eat anything.
Over the years I have struggled on and off with many different flares, going in and out of remission for varying periods. Unfortunately, this week has marked an entire year that I have more or less had active colitis. I have gone into remission in the last year, but for brief periods. Dealing with my colitis was bad enough, but my doctor also had me on 60mg of prednisone which began to wreck havoc on my body.
I was wondering what some of you do to deal with this? I feel really drained and upset by the whole thing. I try really hard to stay positive, but I honestly feel like I really can’t handle it anymore. This past year has been extremely hard physically, mentally and emotionally.
Post # 3
I have Crohn’s which is different but in the IBD family. I have been on Remicade for 5.5 years and it has put me completely in remission. I was hospitalized 3 times in 3 months before starting Remicade and had to have the TPN which was soooo gross watching it go into my veins! It hurt too because I have tiny veins. And OMG don’t get me started on Prednisone! It’s my arch nemesis. I haven’t had to have it since I’ve been on Remicade though.
Anyways, Remicade is a lifesaver. I’ve gotten infusions at the same time as people with UC and they say that it has helped them tremendously and put them in remission as well. I’m actually confused as to why this hasn’t been recommended for you already? If you have any questions about Remicade, I would be happy to answer them for you. It’s seriously given me my life back and I can eat literally anything I want now. Actually I can’t eat raw celery but I’m pretty okay with that though I do miss ants on a log… It hasn’t healed the damage that is already there, my stomach will hurt for the rest of my life if you push on it in the wrong spot. But I don’t get flare ups anymore and that’s all that matters!
Post # 4
I was diagnosed with ulcerative colitis 8 months ago and it’s been hard. Fiance and I had just moved in together when I started really showing symptoms. I was nearly hospitalized when I lost 20lbs in once week. I was off work for 3.5 months and completely DRAINED and not myself for at least 6 of the last 8 months. I was put on two different oral medications which I ended up being allergic to (asacol & salofalk) so I was finally put on remicade. It seems to be helping, although I’ve only had 4 treatments so far so I have yet to see the full effect of it yet. It totally ruined my sex life for a while because I was so sick that my libido was shot, and this was difficult for Fiance to understand. Fiance thought it was going to be awesome finally living together and he ended up having to care for an extremely sick person, I feel so terrible about that. But I am finally on my way to remission and our relationship has improved a million times over. I can live an almost normal life with a modified diet, and the help of some OTC meds every once in a while when I’m having a bad day. Basically since the beginning my view on the whole thing has been, “this is not going to define me, this will not beat me”. I try not to allow it to limit my life and try and keep myself doing as normal activities as possible.
I know remicade is usally the last medication recommended because of the increased risk of cancers but maybe you should talk to your doctor about it? Mine preferred me to be on remicade over steroids because from what they can tell it’s actually less damaging to the body. It’s been a life saver and it’s worth a try! Just be warned it is expensive if you don’t have a drug plan/your pland doesn’t cover it ($4600 per treatment and you need treatment usually every 8 weeks). If you don’t have coverage or only partial coverage there is likely a foundation that will help you out depending on what province you are in. In Ontario it’s the trillium foundation that will “sponsor” you and help pay for it.
Post # 5
@MrsSawyer: Regarding the “increased risk of cancer” that is a myth that has stuck around since the studies on Remicade began over a decade ago. The increased cancer risk is so ridiculously low that you are correct, it is much much much worse for your body to be on long-term steroids than for your cancer risk to rise .016%. I don’t remember the exact numbers, but in some of the first studies of hundreds of people, 11 males and 1-2 females developed leukemia, I believe. They have found in subsequent research that when Remicade is taken with Imuran or other 6MP’s, the risk of cancer plummets and is really a non-issue. My original Remicade prescriber always told me about the cancer risk and my newest GI told me the info I just told you, that basically the risk is almost completely gone. My new GI is part of a practice that participates frequently in research and is very state-of-the-art and up to date in the latest research.
Post # 6
@LaurenK0105: Remicade actually has been recommended to me. I was nearly put on it back in September, but after having a colonoscopy my doctor said that the inflammation in my colon didn’t match the severe symptoms I was having, and for that reason she was hesitant to put me on Remicade until it was absolutely necessary. Currently I take Asacol and Salofalk enemas. 🙁 My doctor has said that my next step is trying Imuran, and then moving on to Remicade if that doesn’t work.
I’m glad to hear that it has really helped you and given you your life back. When I was first diagnosed with UC I was actually given a course of Remicade while I was in the hospital. This was before when they were using it as a “one-off” treatment for Ulcerative Colitis and before it was approved for use in UC patients.
@MrsSawyer: I actually live quite close to you in Waterloo and have heard of the Trillium Foundation. My doctor gave me a bunch of information about Remicade back in September when she was thinking of starting me on it, before she decided that it wasn’t necessary yet.
I can completely sympathize with your situation with your Fiance. Although my Fiance and I have been together for 4 years, this is the first full blown, big flare that I’ve ever had while we’ve been together. He’s so supportive, and understands what I’m going through, but it has ultimately taken quite a toll on our relationship over the past year. Like you said with your sex life, I just don’t really have any desire and even on days when I’m feeling “better”, I’m still aware that I am sick and unhealthy, if you know what I mean. Better just feels like a relative term. My Fiance has found this particularly hard to understand, but we have spoken about it a lot and he has always been really supportive. I just feel bad, even though he doesn’t make me feel that way. It almost feels as though having it be a strain on our relationship, on top of actually being sick is like getting kicked while you’re already down!
P.S. So glad to hear from both of you! It’s been a rough few days and it’s nice to hear from others who have similar experiences. I don’t know anyone in my personal life who has UC or Crohn’s.
Post # 7
I don’t have Ulcerative Colitis, but I have nasty Crohn’s! I wanted to chime in because originally I was diagnosed with UC but that has changed.
Back in 1997 when I was 11, I had my first Crohn’s flare up, but at that time Crohn’s wasn’t thought to reside in the large intestine. The doctors were like “That is SO strange. It looks like you have Crohn’s…. in you large intestine! Hahahaha, but that doesn’t happen! It’s just really bad UC.”
I was put on a butt ton of prednisone but it literally did nothing but give me terrible skin and moon face.
Fast forward to 2010 I began having horrible health problems again and now have been diagnosed with Crohn’s. My blood work shows that I have never produced an antibody for UC. I’ve never had UC, it’s just been Crohn’s this whole time.
I’m currently on a butt ton of pentasa and a continuous antibiotic and it’s barely helping. Sometimes it seems like it is, most of the time it seems useless. Next month I will most likely be getting more serious treatment.
I can’t really give you advice on how to help your UC since you are probably doing all the obvious things like diet, and when the doctors treated me for UC it was a mistake on their part. I do want to say that I sympathize and I really hope you find a way to help your health. There is a lot of promising science that I hope will help all of us auto immune sufferers someday.
Post # 8
@LaurenK0105: I know the increase is extremely low, my doctor told me that but it is still something that people should be aware of I guess which is why I shared it. Honestly cancer can happen to anyone, and it happens to many people so I would assume it’s hard for them to peg the cancer that remicade users got was actually due to the remicade because these people could have got it remicade or not.. it’s hard to know right. All I know is the tiny tiny risk is definitely worth it to live a “normal” life again.
@alwayslove: I totally know what you mean about not being into it even on a “better” day and I went through that too, but once you start getting “better” days more and more often, you will find yourself being in the mood more often just hang in there and be patient! Honestly, all of our FI’s are amazing because it’s not easy to live with someone who has colitis or crohn’s. Like when you’re out shopping or something and have to drop everything for a washroom break, my Fiance has NOT EVER been annoyed by that and I can’t say that I wouldn’t be if the roles were reversed, I am so thankful I have him to support me.
Post # 9
Have you considered having surgery? My sister finally went through the ostomy process a couple years ago (after HORRIBLE, life-destroying UC) and she is 150% happier.
Post # 10
@MrsSawyer: That’s how I’ve always felt, I’d rather take the minisculest chance of cancer (that I already know I’m going to get at some point in my life because really, who doesn’t these days?) than live life the way I was living it.
I’m really shocked that there are still doctors out there who look at Remicade as a last resort. It was a “last resort” when I first got on it, but now it’s so researched and so just amazing that I’m actually pretty enraged that @alwayslove:‘s doctor is treating it like it’s this dangerous drug when it really isn’t. It’s completely approved to take even while you’re pregnant. If it’s safe for a fetus then there is no reason that it should be a last resort. I would consider finding a second opinion and trying out Remicade. It’s saved so many peoples’ lives. It’s a hassle getting it every 8 weeks, but at this point that I’ve been getting it for over half a decade, I’ve really gotten used to having a little me time set in stone every 2 months. 🙂 I’m really pissed you’re not on it already. You’re symptoms sound “severe enough” (ugh!!! so mad!!) that you should have been on it for good years ago.
Fun side fact: I can literally hear Remicade working in the days following a treatment! My intestines gurgle all crazy and I can hear things moving around and chilling out.
Post # 11
I have Crohn’s. I have had it since I was 9 or 10. I also on Remicade, and while I still have problems with blockages and anemia, it has made a huge difference. I have been on pretty much every drug for it and none of them, except for the evil predisone, have worked. The only problem with Remicade is that it can stop working (we have already had to increase my doseage).
LaurenK0105, I totally know what you mean, I can feel moving and relaxing after Remicade too.
Even with the Remicade I may need to have surgery to remove a few parts of my small intenstine. I find out whether I need surgery on the 28th, so wish me luck!
Post # 12
@Stormy: Oh I hope you don’t need surgery! I’m often scared for my future health and worried that one day it will come back to surgery. I really hope it doesn’t come to that for you.
Gods, remicade sounds so nice. lol Do you think when I see my doctor in a month if they suggest prednisone I tell them flat out “No.” Been there, done that, it didn’t do a damn thing and I was taking enough that the doctors were worried about long term organ damage!
Post # 13
@Stormy: Yes, that is the downside to Remicade, but at least it has worked for some time. I used to be terrified all the time that it would stop working, but then I made a decision to stop worrying about it and worry about it if/when that becomes an issue. I had a scare recently where I thought it was. I just don’t want to have to go to Humira, I don’t think I could handle giving myself injections weekly. I hope increasing the dosage works for you!!
@Tunacupcakes: I eventually had to tell my Dr. that I was just not ever going on Prednisone again and he’d better come up with something else. That’s when Captain Remicade saved the day. I would rather lose an arm than go back on prednisone! I may have told my Dr. that, I can’t really remember because it was such a visceral reaction!
Post # 14
@Magdalena: I have very briefly considered surgery, but it is always at a time when I am feeling my worst. The thing about surgery is that after you have it done, from what I understand, you have up to 7 small BM’s a day. I have been in remission for up to 2 years before, where I felt like I didn’t even have UC or anything wrong with me, so I feel hesitant to do the surgery. Also, the thought of the surgery scares me a lot. If it really came down to having surgery I would do it, but only if this was my only option left. Until then, I wouldn’t elect to do it.
@LaurenK0105: The reason my doctor is treating Remicade as a “last resort”, is because of the fact that you can build up a tolerance to it. She knows it works really well, so she wants to save it for when I can’t get relief from anything else. Also, when I was first diagnosed 8 years ago, I was treated with Remicade. They gave me a one-time treatment while I was in the hospital before doctors realized that treatment of Remicade has to be continuous. So as my doctor was explaining, I may have already built up some resistance to it, and to start it before it is absolutely necessary would not be a good idea.
@Stormy: Good luck! I really hope you don’t have to have surgery.
@Tunacupcakes: Yes, I think you could tell them no. I was on 60mg for quite awhile and combined with increasing and decreasing over the summer I was on prednisone for nearly 6 months by my one doctor. When I would start to decrease and my symptoms got worse he would just increase it again. I then went to a new doctor (the one I am seeing now) and she thought the whole thing was crazy! She told me that now if you do one course of prednisone and it doesn’t work for you doctor’s don’t usually repeat it because of all of the side effects of it and there are less dangerous drugs out there.
Over the summer when I was on it I had so many side effects that it just made me feel worse instead of better, aside from the fact that it wasn’t even working for me. I had joint pain so badly that I had to sleep with pillows under my side, between my legs etc, and I could barely sleep during the night. Also it messed up my bladder and I would have to pee up to 7-8 times a night, so that also left me with no sleep. A lot of days I could barely walk up a set of stairs without pain. On top of that I had the obvious weight gain, moon face, acne, increased hair growth, mood swings and depression. My new doctor has told me to never let another doctor put me on prednisone again, because after 6 months on it (which was wayyy to long) it definitely wasn’t working. (Sorry for the long response)
Post # 15
I have ulcerative colitis. I was diagnosed about 6 years ago. I don’t take remicade, but take imuran and asacol and seems to help…as long as I stay away from dairy…
@alwayslove: You said you are taking some enemas correct? Have you heard of cortenema? It’s basically prednizone in enema form–so without all the terrible side effects that predinizone has. I’ve taken the asacol enema and it never worked for me, but the cortenema did wonders! Ugh enemas 🙁 But if they work, they work. Maybe ask your doc if you can try this? Hopefully it’ll work for you.
Post # 16
I am so glad I found thiss!!!!!!!
I have UC. Had it for a TREAACHEROUS year before getting diagnosed on Febuary 2007, when I was in grade 12 (and just moved across the country, which sparked the whole thing)
At first the diagnosed me with IBS, and I kept saying for months, “I have abnormal symptoms!” But they wouldnt listen. Then it was celiac, lactose intolerance, parasites.
Then my grandpa called his friend, who happens to be a big time surgeon, and told him my symptoms. He said he wanted to see me, put me in a colonoscopy test that next week. But since I am in Canada, I would have had to wait for that test for like half a year.
But since I got diagnosed faiiiiirly quickly, my UC is okay. When I take my meds (Asacol) I am pretty much perfectly fine, just get those crampy feelings somedays. I eat whatever now.
I went through grade 12 being such a homebody because I was sick. But didn’t have any friends to confide in so I was friend-less the whole year. Anyways enough of that pity party…
I have never met anyone with UC, so I am glad to be here in this club!