Remicade vs. Surgery

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/15/2008 1:05 PM (GMT -6)   
So I got not-so-great side effects from 6MP and had to be hospitalized. They gave me a Remicade infusion yesterday. I haven't had any blood in my stools today, which is awesome.
 
But I still can't help but to consider surgery. From what I understand, we do not know what the long-term side effects are and that freaks me out. The GI on-call yesterday said that they would probably continue Remicade for a few years straight. Remicade is the only option left and will it be something I'll be able to use for the rest of my life? And since it is an immunosuppressant, I have to be really careful about not being around sick people, which will be difficult when I go back to college in August. And who knows how long Remicade will even work on me--I haven't had much luck w/ all these meds.
 
I'm thinking about using Remicade to get me healthy enough to have surgery, although I still need to discuss all this w/ my GI.
Anyone in this position? Any thoughts?
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (1st infusion 06/08)


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 6/15/2008 2:10 PM (GMT -6)   
Hi there. Sorry to hear that the 6MP didn't work for you. Such quick improvement on the Remicade sounds very exciting, though.

What does your doctor say about surgery? Do you feel that you are in a rush to decide? You are young and I'm sure that there will be great improvements in UC treatment during the next 20 years. (OK, I don't KNOW that for sure, but I am optimistic.) I'm also thinking that my first flare was one of my worst and then I had a number of pretty decent years when I was able to live with my symptoms very well. All this to say that you shouldn't feel rushed into deciding. Take your time.

From my own point of view, I spent 9 years going through nearly every 5ASA drug. Each one seemed to work for a bit and then stopped. When I switched to 6MP, I felt comfortable with it because I knew I had exhausted the other options. I would want to feel the same way about surgery: that I had looked at everything else and decided this was the way to go.

For me the other options to consider would be alternative medicine and lifestyle changes. I know that when you are in college it's a whole lot more difficult to control your diet, your stress, etc. So I really appreciate that you might not have time nor energy to deal with that during the school year.

about being around sick people: I had the same fears with 6MP. Perhaps it's more extreme with Remicade, I don't know. But I've always been very susceptible to colds, etc, and I have not had ANY increase in my colds or other illnesses since being on 6MP. In fact, I took a lot of public transportation, worked in a closed in office with people, etc. and still was able not to get sick with others did. There's a lot to be said for washing your hands! :)

I'm sure others will weigh in with other more specific info. I just wanted to encourage you to take your time.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/15/2008 2:25 PM (GMT -6)   
Remicade can be long term. I met a woman who has been on it for over ten years with no side effects. Most of the time the docs say that remicade should start working after the second or third (sometimes longer) infusion so having results right away is fantastic!! I really didn't notice a difference until after the third infusion. I am sitting here eatinga bowl of cherries because of remicade which i haven't been able to do in two years!

Surgery is a good thing to look into. Even if you decide to continue remicade you will know what your options are down the road.

about being on remicade and at school.; It really shouldn't be a problem. i am a middle school teacher and was very worried about it too. My Gi says that what you really need to worry about are things like TB. Getting a cold or the flu really shouldn't be that different. Illness may last a few extra days. My whole family is sick right now and I seem to be the only one who hasn't caught their cold. I wash my hands a lot and carry antibacterial stuff everywhere.

I am planning on staying on remicade until it stops working. I have looked into surgery and at least have that knowledge for if i flare again so i won't feel backed into a corner.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 6/15/2008 2:35 PM (GMT -6)   
It's great if Remicade is working for you. I know they say it is better to go into surgery if you are healthier. It would be wonderful if you stay in remission with remicade. Bratcat tried remicade. She's had 3 infusions. It's hard to say if it is working or if it is the prednisone or something else. She has been feeling better but I'm not sure it is a wonder drug. We've seen her go into remission several times but we are always waiting for the other shoe to drop. And when it drops it makes a big thud!! And then what? That is why we are at the surgery point. Believe me we are freaking out about that and there are many, many doubts. There is no easy answer.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/15/2008 3:24 PM (GMT -6)   
i went to the dr asking for surgery, and he said try remicade. And it helped, for a few months, but then it quit, but even when it was working, like Bennie said, I was always waiting for it to quit, always worried about how much worse it was gonna be when it did quit working, and it did quit working and it was bad! and then, i felt like i had just wasted all that time trying remicade, when i could have already had the surgery and been healthy.
Personally, i didn't go through lots of drugs like most people, because i didn't want to waste time and money and get all the side effects from something that may or may not work.
THat being said, when the remicade was working, it was great, and i didnt' have any short term side effects from it.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/15/2008 5:01 PM (GMT -6)   
Remicade seems to work for about half of us, according to the research. I haven't seen any research on this, but I'm inclined to think if one anti-TNF drug doesn't work the others probably won't. If so, that means right now the end of the road after a TNF-blocker is surgery. I knew going in that if it didn't work I'd be looking at surgery.

Remicade can have some scary side effects; the fact that they're pretty rare makes it worth the risk for some of us and not for others. One benefit of surgery is that you won't have to worry anymore about whether the next new treatment will work for you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


sirpenguin45
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 6/15/2008 6:26 PM (GMT -6)   
hey there. I am in a similar boat as you. I'll be a senior in college and have been on remicade for a couple of years. I go back home (2.5 hours away from school) to get my infusions. Sometimes it works out well when I am home for Christmas or Spring Break and I have to get my infusion. It's really not too bad. Remicade has really helped me a lot. I am hoping to get off of it (either voluntarily, or involuntary once I am off my parents insurance). I have not considered surgery. I am hopeful that there will be a lot more advancements in the next 5-10 years, so I am hoping to deal with the symptoms until there is a long term solution. Please let me know if you have any questions!
21 Year Old College Student
Diagnosed UC December 2002
Remicade since December 2006
Colozal, Imuran, Prednisone


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 6/15/2008 7:24 PM (GMT -6)   
My GI has a good way of looking at surgery (in my opinion!). He says that it's always good to keep that as an option, but to go there only when you're completely ready and have exhausted other options. His reasoning is that with each passing year, the surgery options for us just get better and more advanced. Makes sense to me, but I hear you about the fear of Remicade. So many people here do seem to have such good results with it, though. Good luck with your decision!
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Asacol (4 pills 3x a day)
Canasa
Prilosec
Calcium, multivitamin, Metamucil


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/15/2008 8:19 PM (GMT -6)   

Surgery should be a last resort but quality of life has to be a part of the decision.  If you find that UC rules your life; dictates your social or work schedule, prevents you from doing the activities you love, then surgery should be considered.  If you can live a full life while controlling your UC then by all means do not consider surgery.  If you find yourself giving up too much of your life and can't stand living that way anymore then surgery might be an option. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 6/16/2008 3:43 AM (GMT -6)   
What if Remicade has no effect - does that mean that Surgery is inevitable?

What about an interim solution... Anyone herd or tried a procedure called Apheresis?

What are the success rates for this?


G

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 6/16/2008 6:09 AM (GMT -6)   
Suebear writes this:
" If you find that UC rules your life; dictates your social or work schedule, prevents you from doing the activities you love, then surgery should be considered."

I wonder if that is a bit too broad a statement. At some time during flares, I'm sure that UC prevents all/most of us from feeling like we can do exactly what we want. I think when considering surgery, one might want to think about whether UC has ruled one's life for a long period of time without any break.

ComedyDork, Have you spoken with a psychologist or psychiatrist about this at all? The reason I ask is that you will always get some kind of bias or opinion from the people in your life when you discuss this. With someone who is trained to listen, you may be able to make a better decision on your own. You want to be sure that you aren't influenced by anything other than medical information and what you feel is best for you.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 6/16/2008 6:56 AM (GMT -6)   

ComedyDork, Remicade was first approved for Crohn’s over 10 years ago and many people have been on it even longer. The longer people have been on it the more they learn. If it works for you I would continue to use it indefinably. Unfortunately it didn’t work for me and I am now considering surgery. If it stops working for you as a result of the development of antibodies then other TNF blockers such as Humira and others that are currently being tested may work for you as well. I wouldn’t worry too much about getting sick from other people. The immune system is very complicated with many different components. Remicade only acts on one of those components and shouldn’t affect the rest.

Gargamel said...

What about an interim solution... Anyone herd or tried a procedure called Apheresis?

What are the success rates for this?


G
Gargamel, are you referring to Adacolumn Apheresis? It is approved in both Japan and Europe for Ulcerative Colitis. A few years ago I was in a clinical study for North America and it did not work for me. My first round of treatments turned out to be the placebo but I then had another 1 ½ rounds of treatment with the real thing and it had no effect on my symptoms. I was told that the results of the study were not very promising and it probably would not be approved for UC in Canada or the US based on that study.

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/16/2008 7:01 AM (GMT -6)   
I think I would opt for surgery.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/16/2008 7:40 AM (GMT -6)   
One of the reasons i decided to wait for surgery was that I had heard that childbirth was more difficult. Luckily remicade started working for me. My goal is to wait until after i have kids to have my colon removed.

Make sure you talk to a surgeon about how not having a colon may impact other parts of your life.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/16/2008 9:06 AM (GMT -6)   
my personal feelings about my own situation, I can't put my colon back in, there is no reversing the surgery, so at this time I would try remicade and humira if neccesary/possible. Prior to electing surgery, however, I also want to be prepared mentally to accept surgery as my last resort.

For me personally, I just cannot live my life flaring like I have been. I need to take action and move on.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/16/2008 2:47 PM (GMT -6)   
julee--20 years for a cure?! I don't think I can wait that long--I was think maybe 10 years if Remicade works! One of the GIs told me that they're not really working on a cure for IBD, just treatments...I haven't spoken to a psychologist about it b/c we don't have money right now for one--my medical bills this past year have been ridiculous!
 
Bennie--I know what you mean--I feel like I'm just waiting around for this to fail. And when/if that happens, I'll be furious that I didn't get surgery earlier!
 
summerstorm--I can't remember, did you get a j-pouch? Are you able to anything and everything with a j-pouch? (I really miss spicy foods sad )
 
suebear--I do feel like my life's controlled by UC. I'm tired even when I'm in remission, I'm stuck in the house during a flare (as in I'm so tired I can't even go to the grocery store), I don't know what career to pursue b/c I don't what I could handle if I was in a flare, etc. etc.
 
Paul L--good luck w/ considering surgery!
 
kb5--When I first starting researching surgery, the infertility rate after surgery really scared me (48%)! But it could be another 10-15 years (or never) until I have kids, so I don't know if I want to wait that long! I do wonder if laparscopic surgery would make a difference in in/fertility rate.
 
Beth--Yeah, the whole no reversing surgery part is a bit scary. Have you decided what treatment you're going to try next?
 
I think I just need to make a long pro/con list before my next appt.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/16/2008 3:05 PM (GMT -6)   

I made a short pro/con list for myself recently as well... Here's mine if you're interested in knowing my reasons for considering! I can't remember if I ever posted it here or not.

REASONS TO HAVE SURGERY

 

 

1)       No more worrying about where every bathroom is when I go out and being able to enjoy outings without them being ruined by multiple bathroom trips

2)       Being able to enjoy social gatherings instead of staying at home because I don’t want to use their bathroom

3)       Not having to worry about whether everything I eat is going to make me sick

4)       Can’t have colon cancer without a colon! Even if it’s a small risk now, it’s still there

5)       Finally be able to feel healthy and young again

6)       No more taking handfuls of questionable medications with questionable long term effects

7)       Seems like pregnancy would be easier without colitis, assuming the surgery doesn’t effect my fertility. I’d rather have surgery, get healthy, and then try for kids, instead of trying to carry a fetus and then raise the newborn in a UC flare

8)       No point in wasting what life I do have left feeling sick and waiting for a cure that may never come. Life is too short and these are supposed to be my best years!

9)       Tired of wondering when the next flare will be, when this one will end, what this food will do, etc.

10)    Even if I don’t get colon cancer, I could end up with cancer or other illness from any of the various treatments, especially ones like prednisone!

11)    If the J-Pouch doesn’t work out for me, I could always revert to the BCIR, which is performed very close by and seems like it would be a great alternative.

12)    Most of the things on the after-surgery diet restriction list I don’t eat anyway!

13)    I want to have surgery on my own time when I’m young and in a slightly healthier state than I would be if I waited until it was an emergency.

14)    I could finally start exercising again and going to yoga classes instead of worrying about having to jump out of a pose and run to the bathroom, which is very embarrassing.

15)    Even though it’s a little scary, I believe it would be a large change for the better in my quality of life, even though it’s not as bad at the moment as it used to be but it could and probably would be again.

16)    The biggest reason- NO MORE ULCERATIVE COLITIS!

 

REASONS TO BE HESITANT about (OR NOT HAVE) SURGERY

1)       Surgery scars and stoma/ostomy… I already have some self-esteem issues- how will this effect me mentally? Although, laparoscopic scars are much smaller and less noticeable than open scars.

2)       After J-pouch surgery it says most people go to the bathroom 6-10 times a day for awhile, which is how I am with a bad UC flare! But with UC it’s painful and urgent, hopefully with the J-pouch at least that would be alleviated.

3)       Curious about the cost of ostomy supplies and how much is covered by insurance… I haven’t found much info on it online but I’m assuming it’s probably cheaper than half the UC meds.

4)       I have fears that my boyfriend will find me unattractive after surgery, even though he says he wouldn’t. But then again, he finds me attractive with a “pooping disease” so what’s a few scars compared to that?

5)       What if I have the surgery and feel worse than before and regret it? There’s no going back once it’s done.

6)       I understand there is a risk of infertility which does really scare me, but at the same time with UC I don’t feel I would be able to be pregnant and raise a child. I have spoken with many women also that have had successful pregnancies after surgery and I feel with a good surgeon who takes care not to thrash up my insides and create excessive scar tissue that I should be okay.

 I don't plan on waiting 20 years for a cure/better medication either. By that point I'll be 43 and will have wasted most of my life waiting!!! I'm in a bit of a flare now and I can feel it getting worse in that I am soooo exhausted, I just sit around and yawn all day and I can't get up the energy to do anything. And people at work are always talking about how they can't stay up late or party and they're like "Wait till you're older, you'll really feel it then, I can't even stay up past 10pm" and I'm thinking 'Are you kidding me?? It's 2pm now and I'm falling asleep at my desk. I think I'm feeling it now.'

I know there's the fertility risk but when I think about it... I'd rather have surgery first and risk it being harder to get pregnant, than get pregnant with UC and worry the whole time what the medications are doing, whether I'm going to flare, whether the flare will cause me to miscarry. At least with surgery I would be med-free and healthy which is the ideal state to be in before trying to carry a child.

 

Sorry to hear you had to be hospitalized :( What do you think of Remicade so far? Did you notice any instant improvements?


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/16/2008 3:06 PM (GMT -6)   
ComedyDork,

I have decided to get a 2nd opinion before trying a new drug. I kind of feel like if I try remicade and it does not work and I can't get Humira, then I am stuck w/prednisone..........which I do not want to be on, so surgery would be my only option, I really need to prepare myself for remicade not working. I know it sounds so pessimistic, but I think of it being realistic. I don't want to feel like I am just thrown into surgery, I want to really think about everything.

Also, I worry about pregnancy too, i'll have to ask that when I go for my 2nd opinion. I really want to be a Mom!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/16/2008 7:20 PM (GMT -6)   
i have a permanent ileo, but i still eat whatever. Most people with ileos or j-pouchs can eat whatever, there are a few things that are warned against, popcorn, nuts, seeds. Those things are hard for all people to digest. but i eat plenty of spicy foods!

Beth,EdieKristen-i can tell you that having a baby with an ileo is much easier than havign one with UC. My son was almost two when i had my surgery and before that it was so hard to take care of him, hte poor kid spent more time playing in the bathroom than anywhere else in the house, i was too tired to take him outside, and i couldn't take him places cause what would i do with him if my stomach started acting up while i was out with just him.
After surgery we go places all the time, we play in the yard, he never has to play in the bathroom, and i finally have enough energy to attempt to keep up with him. I can assure that no matter what you never have enough energy to keep up with a toddler!

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/17/2008 11:58 AM (GMT -6)   
ediekristen--Thanks for th list--you saved me some time! If I think of anything else, I'll add it on here. I don't think the Remicade is really kicking in yet. I got it Saturday afternoon, and Sunday morning I was having very little blood and only had a couple of BM's, which was awesome. I also had HORRIBLE cramps (my cramps usually aren't that bad). Yesterday I had some bleeding, very little stool, and felt constipated. Today I'm back to my "normal" routines of multiple bloody BM's in the morning :( I guess it'll take a couple more infusions to make a difference.

*sigh* I'm just so confused about everything.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/17/2008 12:17 PM (GMT -6)   
No problem! :) Another thing I did one day when I was bored was write out a list of questions that I want to ask the surgeon if and when I do see one, so I don't forget anything. Things like "Do you perform this surgery laparoscopically" and "What steps, if any, do you take to protect female fertility?"

Well I hope the Remicade does start to work for you, if anything at least to give you some relief until you decide what to do next. It's frustrating when you have a good day and you're like "Hey, I feel normal, maybe I will be okay" and then it just goes right back downhill. Oddly enough, I've been constipated the past few days and have only been passing mucous for the most part, which is nice because I'm not running to the bathroom every half hour but I feel so bloated and feel like I've gained 10 pounds just because I'm not going to the bathroom! If it's not one extreme it's the other I guess!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/27/2008 7:54 AM (GMT -6)   

So, I had my GI appt. yesterday and my GI said that if Remicade doesn't kick in in 2 more weeks, then it's probably not going to work well as we go on with more infusions, and that I need to speak to a surgeon. He also told me that if Remicade does work, then I'll have to get it "indefinitely." I did ask him about a cure, and he said that I'm not going to have that option if Remicade doesn't work; he said that stem cell research has been promising for Crohn's but they have just begun trials for UC so it may be a while before it's approved (if it works).

I really hope Remi does work so I can decide when to have surgery. Remi hasn't worked its magic yet--there were a couple good days but I'm still loosing a lot of blood and feeling exhausted. I think I want to have surgery but I'm so scared about it! 


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/27/2008 8:14 AM (GMT -6)   
ComedyDork,

I hope that you will still see a surgeon soon so you have time to become comfortable with the idea of surgery. I will keep my fingers crossed that remi kicks in for you soon!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/27/2008 3:28 PM (GMT -6)   
Wow, that list that EdieKristen created seems to sum up the pros/cons that I weighed. I think that one thing that in making the decision that isn't fostered in us, especially by our health care providers, is how to cope with the decision and how to know all our options have been exhausted. I found that for me the idea of "hopelessness, and the sense that as long as I want somewhere else to be, or to be something else, I'll never hear myself in the present moment" - meaning, you can consider what the risks and complications may be, but at some point you have to reflect on what you know now as fact (what meds are/are not doing for you, and your quality of life).

I've been honest about my surgery process, and there was 3 years of deciding for surgery b/c of all our fears, worry of complications. Turns out not a single ONE of our early concerns has shown up.

I will say that for myself the surgery was the best decision made for me to regain my pre-UC quality of life. I wish I had gotten my life back sooner in my 20s, but I don't regret how long I took to decide because I have zero regrets about the decision I made and all the medicines I tried.

mark
http://ucstory.wordpress.com

neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 6/27/2008 8:23 PM (GMT -6)   
I know just how you feel! 6mp put me in the hospital as well, and I've stopped responding to prednisone. I go for a colonoscopy on Tuesday, and then I'll know more. I'm probably going to have to take Remicade as well which really freaks me out. Working and going to school definitely add to the stress of all this. Being in college with this disease is hard too, youre away from your family, everyone talks about going to parties, going abroad for semesters, and its not fair! I think about surgery as well, to be a normal college student would be so nice. I hope everything works out for you. :)
20. Female. California.
Diagnosed left sided Ulcerative Colitis at 15, first symptoms at age 11.

Flaring! :(
40mg prednisone daily.
(reduced to 30mg, got worse. now taking 40mg going on 4 weeks )
Prevacid, Multi Vitamin, Digestive Advantage Chrons and Colitis, Iron Supplement

Allergic to- 6mp (gave me pancreatitis), Asacol

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