Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
I was newly diagnosed with UC in Nov and a week after was in the hospital for 7 days getting my anemia and UC under control. (apparently ignoring UC for 6 months causes severe anemia).
I was given in the hospital a blood transfusion and 6 iron transfusions to get my HH up from a 7.3 and start having energy/strength again. Once the anemia was in check, I was put on 60 mg of prednisone and Lialda. I was feeling great minus the intense side effects of life on steroids (mood swings/sweats/joint pain/dizziness/wanting to crawl out of your skin) then they started tapering me off the prednisone and the bleeding and UC symptoms came back which I was told meant the Lialda isn't doing its job because it had its 8 weeks to kick in and didn't.
I learned from the ccfa.org website there are 5 levels of medicine they offer and I was already on 1 and 2 and they failed. Since prednisone isn't a long term cure the doctors and I needed to decide what I wanted to do next for treatment. I had the choice of immuno-blockers which take up to 3 months to kick in or remicade. I talked about probiotics and diet changes but that seemed to not be an answer just something that may help.
I decided to do Remicade because waiting three months to see if something worked is as all of you know I'm sure with UC is NOT an option that sounds appealing.
So after my first treatment of Remicade they said I would start feeling better in 2 days to 2 weeks. I still had a lot of pain in my stomach but it was a different kind of pain I chalked it up to side effects to all the different medicines I was currently on (prednisone- anti spasm meds- pain meds-etc) and i realized something else was different I wasn't going the bathroom... at all. I was so happy to not being going every second and didn't know what "normal bowl movements" were and didn't realize the new problem of not going the bathroom.
I finally call the Dr to say I'm not going the bathroom and they said I'm constipated (gee thanks) and should take a laxative to reengage my bowls. So four days of taking laxatives and I went the bathroom once (which was painful like full-blown colitis style). The pain became debilitating so I went to the ER got a xray and cat scan and they said nothing was new. Talked to the doctor in the morning and found out the laxative was causing the pain b/c the way it tries to make you go the bathroom is by creating stomach spasms and since it wasnt working the spasms kept intensifying with no results so I should stop taking that laxative and take Miralax which is a slower and gentler one. The doctor said this is all the UC and its just another way your intestines show inflammation
Im so confused because UC is going the bathroom all the time and now Im still in pain NOT going the bathroom. It feels like my lower bowls (maybe colon) is paralyzed- which the cat scan showed it isnt. Does this mean the remicade is working? Does UC cause you to stop going the bathroom too? Im so confused by this disease now because its done a 180 on me. Im better in the sense Im not going every second and not bleeding but Im not better in the sense that Im not completely focused/consumed by this condition.
Any insight would help you guys are the best source of information, this group is amazing.
I was given in the hospital a blood transfusion and 6 iron transfusions to get my HH up from a 7.3 and start having energy/strength again. Once the anemia was in check, I was put on 60 mg of prednisone and Lialda. I was feeling great minus the intense side effects of life on steroids (mood swings/sweats/joint pain/dizziness/wanting to crawl out of your skin) then they started tapering me off the prednisone and the bleeding and UC symptoms came back which I was told meant the Lialda isn't doing its job because it had its 8 weeks to kick in and didn't.
I learned from the ccfa.org website there are 5 levels of medicine they offer and I was already on 1 and 2 and they failed. Since prednisone isn't a long term cure the doctors and I needed to decide what I wanted to do next for treatment. I had the choice of immuno-blockers which take up to 3 months to kick in or remicade. I talked about probiotics and diet changes but that seemed to not be an answer just something that may help.
I decided to do Remicade because waiting three months to see if something worked is as all of you know I'm sure with UC is NOT an option that sounds appealing.
So after my first treatment of Remicade they said I would start feeling better in 2 days to 2 weeks. I still had a lot of pain in my stomach but it was a different kind of pain I chalked it up to side effects to all the different medicines I was currently on (prednisone- anti spasm meds- pain meds-etc) and i realized something else was different I wasn't going the bathroom... at all. I was so happy to not being going every second and didn't know what "normal bowl movements" were and didn't realize the new problem of not going the bathroom.
I finally call the Dr to say I'm not going the bathroom and they said I'm constipated (gee thanks) and should take a laxative to reengage my bowls. So four days of taking laxatives and I went the bathroom once (which was painful like full-blown colitis style). The pain became debilitating so I went to the ER got a xray and cat scan and they said nothing was new. Talked to the doctor in the morning and found out the laxative was causing the pain b/c the way it tries to make you go the bathroom is by creating stomach spasms and since it wasnt working the spasms kept intensifying with no results so I should stop taking that laxative and take Miralax which is a slower and gentler one. The doctor said this is all the UC and its just another way your intestines show inflammation
Im so confused because UC is going the bathroom all the time and now Im still in pain NOT going the bathroom. It feels like my lower bowls (maybe colon) is paralyzed- which the cat scan showed it isnt. Does this mean the remicade is working? Does UC cause you to stop going the bathroom too? Im so confused by this disease now because its done a 180 on me. Im better in the sense Im not going every second and not bleeding but Im not better in the sense that Im not completely focused/consumed by this condition.
Any insight would help you guys are the best source of information, this group is amazing.
Have you made any changes to your diet after starting the remicade? Have you added probiotics? Lots of doctors say that these changes are secondary to treatment but for some of us, these changes over a period of time have helped us avoid using remicade or other biological meds.
Of course the issue with Remicade is that once you start, you have to stay on it forever/until it stops working and then that option is crossed off the list - that's why they recommend you wait to see if other things can kick it.
The bottom line: you have to do what is best for you.
I get so angry when I hear doctors "outside of the GI bubble" give dumb advice to us - take laxatives. You have to be effing kidding me. I had a doctor tell me to take iron pills and after protesting and not knowing what else to do I did, and bled for four days and blew out my j pouch.
So what I've learned in 22 years of fun is you are your own best friend. you have to make your own decisions, do your own research (sounds like you do) and go with your gut - pardon the pun.
I didn't have that experience on Remicade so I can't help you with that, but I have heard of the constipation thing.
Have you gotten a second opinion?
I have made diet changes since being diagnosed with UC, no veggies except mashed, gluten-free, low fiber seems to be the best situation. I call it the plain and protein diet because that seems to be all I am able to eat. But I have my moments of weakness which I pay for (ate garlic bread yesterday).
Zorah what do you mean probiotics? Like eating yogurt?
I'm getting bummed I started Remicade and I'm only 24, I feel like i might have used up my only life line too young b/c when I want to have kids I have to go off it and might not ever be able to go back on if I built up the antibodies to it.
This disease is too stressful. Too many big decisions on medicine have to be made so soon. I feel completed consumed and overwhelmed by the whole situation...
Anyway, the easiest to answer issue you bring up is probiotics; some yogurts have probiotics, but most of us are apparently on supplements. I use something called Florastor, myself. I use it daily. I'm not sure if it does much because I am on prednisone and remicade (well, tapering prednisone) but I am taking it on faith that it works because so many other people with a lot more experience swear by it.
Don't stress the second infusion of remicade, the reactions are extremely rare. I also wouldn't stress the kids thing or the idea that UC changes your life completely. I mean, I suppose I've just been diagnosed, as of five or six months ago, and it was right in the middle of a career change -- my life went on hold totally for this, and I nearly died, but I know that I'll be back in culinary school and back in the kitchen.
You gotta figure out what you're gonna live for here. If you want to do kids, there is a price to pay. There's always a price to pay anyway, and I guess UC/Crohn's people know that the Piper doesn't charge everyone equally.
I am a little surprised they didn't get you back on the prednisone as soon as you started bleeding again. Why didn't they get you on the prednisone in the meantime to get you back on your feet at least? How long were you on it the first time? I know prednisone is an evil, evil drug, but in the short term, it does the job very effectively -- it gives things like Remicade the time to do their work without you suffering. Unfortunately, when you're in pain, it's easy to start thinking the worst.
Have you expressed any of this to your doctor? Have you considered writing out what you're thinking and talking to the doc about it? The doc should know that you are currently bleeding, they need to be aware of the details of the bowel movements, even if it's embarrassing to tell another living being about what you do on your toilet.
Anyway, good luck with it all. I'm recently diagnosed myself, I'm going through a lot of the same. Though I'm not, obviously, worried about going off remicade to have kids.