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Ulcerative Colitis
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Posted 7/31/2009 2:29 AM (GMT 0)
I don't know what to do. I am having the worst flare up I have ever had. I am 33 and was diagnosed with UC in 1995 and have had periods of remission and flares but this time it is worse. It started April 18 (one month after I go married) and has just not got any better. I was hospitalized in May and test results showed I had c diff. My doctor thought this was what was causing my flare up more than the UC. I took flagyl and vancomycin and started to get a little better. June 16 I had a sigmoid done and the biopsies from that tested negative for c diff.

My doctor put be back on 40 mg of prednisone and I have been on that ever since. I still have soreness in my abdominal region and I haven't had a solid stool since April. I am going to the bathroom 10 to 15 times a day. I noticed some bleeding but not much. I have sores in my mouth which I haven't had in years. I am scared because prednisone has alway got my flare ups under control before, but now it isn't.

My doctor has suggested surgery. He wants me to consider it. He also wants me to consider Remicade.

I don't have a huge support group of people who understand. I got married in March and my husband doesn't understand the disease at all. Neither does his parents. I feel that they think I just have diarrhea. No big deal, right.

My mother in law thinks I should just take aloe vera (AMP FLoracel-If any of you have taken it let me know). She thinks this should help me. Her pastor's wife takes it for her colitis. She is also very against me having surgery because she has heard that people have had bad results with the surgery. She also has read all the side effects on Remicade and the lymphoma factor has made her against that. My own mother died 11 years ago, my father died in 2001, I am an only child and my uncle who always looked out for me died a year and a half ago. So my husband's family is the closes family I have and I just feel that I will not have their support if I choose surgery or Remicade.

I took my husband to the doctor with me 2 weeks ago so that he might understand my condition a little more. He debated the doctor on what causes uc and told the doctor that all I needed to do is take vitamin E.

I had an appointment with my doctor and a research nurse this past Monday and I took my mother in law. When they started talking about the side effects of Remicade and the study drug she told me if I was her daughter she would have snatched me up and left right then. My doctor explained that UC is a chronic disease and problems it can lead to, but I don't think it helped.

My doctor also mentioned surgery again Monday. He said I needed to make a decision on what route I want to take. Remicade, research or surgery. I don't want to do the research because I might not get real medicine. I will have to get a loan if I do Remicade. I am not sure if I am ready for surgery.

I am scared of Remicade's side effects because I am on Imuran and the risk of lymphoma goes up with both medications. Do any on you have any suggestions for me? I am tired of being sick, not being able to do anything and hurting all the time. It is not fair to me, my son or my husband. I just need words of wisdom from someone who knows what I am going through.

tina
33 year old female
imuran 200mg
prednisone 40 mg
levsin
multivitamin
AMP Floracel
Flax Oil
Probiotic
Posted 7/31/2009 2:49 AM (GMT 0)
I would try Remicade and if you don't get solid relief from it for at least 6-8 months and if you still flair and it can't be quelled by prednisone in a month or less I'd probably go with surgery. You can also try Humira after that as well, going to a weekly dose if you need to and see how that works. I don't think remicade/humira are worth it unless you can get something like at least 8 months of remission from them without having to take prednisone.
Posted 7/31/2009 3:48 AM (GMT 0)
I'm so sorry you are having such a rough time. A good support system is critical. I don't really have a great support system from my husband - he thinks UC is all in my head. Pfft!! Anyway, I would hate to have to take out a loan to get Remicade when it may or may not work and if it does work you will have to take it forever and that would cost a lot. I would say your best bet is surgery. Do what is best for you, don't listen to you IL's. Good luck to you. And remember, you can always get support here!
Posted 7/31/2009 4:08 AM (GMT 0)
i went in to my GI in august, 2006 asking for surgery, he talked me into remi. By January, 2007 remi had failed me, and in april 2007 i had surgery, i sooo wish i hadnt wasted all that time on remicade.
BUT remi works wonders for some people. However i dont think i would take out a loan for it, will your insurance not cover it?
Posted 7/31/2009 4:11 AM (GMT 0)
oh and btw dont listen to your mother in law about this, im sure she means well but she is uninformed about the situation. Have your husband talk to some people who have either had surgery or been successful with remi. that way he can see that those things help your life!
Posted 7/31/2009 9:47 AM (GMT 0)
I am so sorry that you are having such a rough time. I am in somewhat of a similar situation. I am currently in a flare up but only for the past few weeks. I take 6MP and have taken Remicaide in the past. The first time I took it I felt great and thought this is truly a miracle medication. However, that only lasted a couple of months and it was time for my next dose. Unfortunately, I had a bad reaction to it and broke out in hives, my throat swelled and I felt like I couldn't breathe- it was awful. The nurse gave me Benadryl IV which stopped the reaction but that was the end of my Remicaide infusions. My doctor just put me back on Prednisone and wants me to consider the other biologic drugs like Humira or Cimzia (spelling?) because they do not cross react with Remicaide. I am truly considering surgery and have an appointment with a new surgeon next week. I know how you feel because I am debating between the IV meds or surgery. To be honest with you, if the dr says I am a candidate and leaves it up to me, I am leaning towards surgery because I have heard a lot of successful stories on this site and from others. I am sick of being sick and cannot imagine continuing to take these harmful drugs forever. I was also terrified of the lymphoma factor with Remicaide and 6MP. We need to get ourselves healthy for our husbands and children- I have 2 daughters. Sorry, you don't have much of a support system but this site is great for encouraging words. Maybe have your mother in law or husband read some of these posts so they realize how serious UC is and what people actually go through...
Posted 7/31/2009 2:12 PM (GMT 0)
I feel like I don't have support either.  My husband is kind of supportive but there are days I feel like crap and no one understands.  I love how people say.  Oh watch what you eat, do this do that.  They don't understand how much this affects your life.  I have three kids and I miss alot.  I tried remi a week ago and had a reaction(chest pain, joint pain).  They want me to try one more time on wed.  I don't know what to do if it doesn't work.  I'm on pred and man am I moody.  My poor kids and husband.  Good Luck!

Posted 7/31/2009 2:21 PM (GMT 0)
gosh, im sorry to hear about your situation...i am newly married too, but my wife reads up on the disease just as much as i do...and she has also learned alot on these posts... i am in a mild flare right now, about 10 times a day with blood and pain...i have been worse,,,i finally told my GI i will consider surg and we are going next week to talk about it and get a refferal to a surgeon. i also asked to get back on remicade for now while we decide, since my wife is 15 weeks pregnant with our first baby, i figure its safe to get back on it...let me know if u need any help with anything...
Posted 7/31/2009 3:42 PM (GMT 0)
I'm so sorry to hear about your lack of support from your husband and his family. Why don't you look on the CCFA website (www.ccfa.org) and see if they have any materials for your family to read. They also have a patient support line that you could contact as well. Or, just come on here and we'll all support you. ((hugs)) You can also send your family on here and we'll all give them a piece of our minds!

At any rate, you could ask your doc about increasing your prednisone dose to 60mg and see if that helps. My GI said it sometimes takes that high of a dose to kick someone into remission. Also, can you not tolerate mesalamine drugs? I'd definitely consider rectal meds as well.

Personally, I'd rather try remicade before resorting to surgery, but I feel that's a pretty personal decision.
Posted 7/31/2009 3:55 PM (GMT 0)
I'm sorry your husband and his family are being pricks. =(

My parents are the same sometimes, I'll feel sick after going to the bathroom and NEED to lay down but my parents will keep asking me to do stuff for them. Luckily my boyfriend is pretty understanding.

I'm sorry I can't help you very much with your question, though. I've only ever been on 5-ASAs and pred.
Posted 7/31/2009 6:55 PM (GMT 0)
Remicade is super expensive so you should definitely mention to your Dr. if you are having to take out a loan to do that. For me it is $25,000/year but FORTUNATELY is covered by my insurance.
Would surgery be covered by your insurance?
Also, it is my understanding that the imuran/remicade/lymphoma link has been weakened with further study. I am on both right now.
I would give up on having your husband's family understand. They sound like anti-drug people who have never known serious illness. I would recommend fruitgirl's suggestion that you try to meet some other people with UC, like on this board or in a local support group (CCFA).
And for what it's worth, I usually have to take 60 mg pred to get out of a flare. Maybe that's what you need too.
Good luck.
Posted 7/31/2009 9:55 PM (GMT 0)
oh when i was on remicade i was doing this thing through access one and i think they offer assitance if your insurace doesnt pay.
Posted 7/31/2009 9:57 PM (GMT 0)
Thank you all for your comments. It is so good to know there are people who understand. My husband and inlaws mean well they just don't understand.

I am seriously leaning toward Remicade right now. Not 100% sure. I would just like to try it before surgery.

My insurance isn't great. The newspaper I work for was bought last year and my insurance has changed to a PPO from Blue Cross Blue Shield. I have to pay $687 copay for each infusion. But I have an out of pocket maximum and after that is met I will not have to pay anything. I lack about $2000 reaching my out of pocket. What I understand from speaking with my doctors office I have to pay all the $2000 at once. I don't understand that totally.

I have been approved for Remistart which will reimburse most of my medicine cost. It's just hard coming up with a huge chuck at once. If I get a loan I can use the Remistart reimbursements to pay it back, I guess.
Posted 8/20/2009 9:27 PM (GMT 0)
I was reading ur post and I thought it was one of mine!  I was recently married and got sick 3 days after we got home back in Nov.  I became violently ill (I was pretty much normal until this point).  Several months later after 3 colonoscopies, 2 GI drs., and  several medications later we came to find out I had Cdiff and Crohns.  GREAT!  How exciting right!  Well by the time they figured out it was Cdiff, the crohns was out of control and I had severely damaged my colon.  Prednisone did not work.  Antibiotics did not work.  Dr. said REMICADE and do it now!  UC is different though.  Me and my husband researched it.  He didn't like it but he could tell I needed something powerful and quick.  I brought him to the Dr and we all agreed, Remicade was the right way to go.  I thank god for that second opinion now.   It can't hurt if you are just looking for advice.  Good luck! Oh and my husband's fam. does not like to talk about health problems either.  But you will have an outlet here.  Oh Remicade worked very well for me.
Posted 8/20/2009 9:49 PM (GMT 0)
I have done great on Remicade. What do YOU want to do? It is your choice.

Sorry you are having to deal with family who don't understand. That's one reason why I don't tell anyone about it and don't discuss it with anyone, not even family. Your husband and his family's response would be a dealbreaker in a marriage for me. I hope he is worth it! When we were dating, I told my husband that peace to deal with this disease was always going to be more important to me than any man.
Posted 8/20/2009 9:50 PM (GMT 0)
I feel your pain. It is difficult when well meaning people tell you that if you just ate...whatever, you would be cured, or if you just avoided stress. Lots of misconceptions out there, even inside a family. I think it's perpetuated by those who have had an "episode" , and called it UC, not the folks on this site...who know the biological differences. Some effort in education might work, if not, just smile and ignore the commentary.
Anyway, Remicade was/is a fab. drug for my daughter. I think it is worth a try. The Lymphoma fear is quite unlikely. It is not consistent with your profile(it was adolescent males on both 6mp and Remi, and still very rare). We also have BC BS PPO, and the out of pockets costs are high, but so would the surgery's cost. Perhaps it/Remi will buy time....time to perfect an imperfect surgery, and get your arms around the life altering change that it would be. Maybe even the health care system will change in time to help you. My daughter is enjoying all the foods that were taboo, has energy, color back in her cheeks, and her biggest BM day is a 4( around her period). Most other days she has a regular stool, once or twice.
Good luck with whatever youdecide.
Posted 8/20/2009 10:09 PM (GMT 0)

sickofitall said...
I was reading ur post and I thought it was one of mine! I was recently married and got sick 3 days after we got home back in Nov. I became violently ill (I was pretty much normal until this point). Several months later after 3 colonoscopies, 2 GI drs., and several medications later we came to find out I had Cdiff and Crohns. GREAT! How exciting right! Well by the time they figured out it was Cdiff, the crohns was out of control and I had severely damaged my colon. Prednisone did not work. Antibiotics did not work. Dr. said REMICADE and do it now! UC is different though. Me and my husband researched it. He didn't like it but he could tell I needed something powerful and quick. I brought him to the Dr and we all agreed, Remicade was the right way to go. I thank god for that second opinion now. It can't hurt if you are just looking for advice. Good luck! Oh and my husband's fam. does not like to talk about health problems either. But you will have an outlet here. Oh Remicade worked very well for me.

Thanks for the comments. I am going to do Remicade. I am just working out the financial stuff now. I am just so tired of being sick and so tired of being on prednisone and it not stopping my symptoms. I am glad to here Remicade has worked for you. I hope I have good results with it.
Posted 8/20/2009 10:42 PM (GMT 0)
Macgirl -
I am certainly rooting for you and you can tell a lot of others are, too! I hope you can work out the cost thing and that the Remicade works.
My husband works in medical publishing, so he knows UC is "real" - but over the years other family members, etc, have not.
I don't talk about it much. But I have found the pamphlets from the CCFA to be very helpful.
Hang in there! You've got an online support system right here!
Posted 8/21/2009 12:00 AM (GMT 0)
Obviously your MIL means well, but is totally clueless and it's not really her place to give you advice about this. I have been on Remicade for a couple of years now and it worked GREAT for quite awhile. I was pretty afraid of it but my next door neighbor has been on it for years for her RA and she told me all about what to expect and how good it has been for her health. It is a pretty good medicine and fairly well tolerated by most people.

As its results aren't being as good anymore I consulted with a surgeon and am more than likely going to have the surgery this January when it will be better for me to shut down my business. I found a lot of useful information at www.j-pouch.org and www.j-pouch.net.

Also, this link, http://www.colorectalcare.org/ipaa.html has A LOT of extremely useful information, including an explanation of exactly what's going on inside with your UC or Crohns, why it causes the symptoms it does, and good details about the surgical options. If you can, have your MIL and husband read at least that information.

Where's your family in this? Are they supportive?
Many hospitals have support groups, if you're not getting the support you need at home you may want to try that route.

Meesh
Posted 8/21/2009 12:53 AM (GMT 0)

Meesh said...
Obviously your MIL means well, but is totally clueless and it's not really her place to give you advice about this. I have been on Remicade for a couple of years now and it worked GREAT for quite awhile. I was pretty afraid of it but my next door neighbor has been on it for years for her RA and she told me all about what to expect and how good it has been for her health. It is a pretty good medicine and fairly well tolerated by most people.

As its results aren't being as good anymore I consulted with a surgeon and am more than likely going to have the surgery this January when it will be better for me to shut down my business. I found a lot of useful information at www.j-pouch.org and www.j-pouch.net.

Also, this link, http://www.colorectalcare.org/ipaa.html has A LOT of extremely useful information, including an explanation of exactly what's going on inside with your UC or Crohns, why it causes the symptoms it does, and good details about the surgical options. If you can, have your MIL and husband read at least that information.

Where's your family in this? Are they supportive?
Many hospitals have support groups, if you're not getting the support you need at home you may want to try that route.

Meesh

Thanks for the links. I don't have a lot of support for surgery either. My MIL thinks that my GI is getting some type of kickback for sending people to UAB medical center for surgery because she knows several people he has sent there in the past several months.

My husband is just too wound up in his universe of pending doom to really understand any type of health problem, procedure or treatment that I might have. Plus, he still thinks all I need to do is eat avocados. I want to strangle him sometimes. I have stopped telling him anything.

I am trying to get my Remicade infusions set up now. I'll let ya'll know when I have a date for the first one.

I have come to the realization that surgery is in my future. I am just not ready right now. I have a lot of courage and confidence to build up before I can do it. Maybe Remicade will give me the time I need to prepare myself for the surgery. I'm hoping for the best.

Thanks again.
Posted 8/21/2009 5:22 AM (GMT 0)
You mentioned C-diff. Athough the latest results came in negative, you could still have an imbalance in your fecal flora. Have you tried fecal transplantation? It is quick, easy, and free if you do it in your own home. I did it three times over three days, and it put a really stubborn flare immediately into remission after the third try.

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