Dr. wanting me to begin Remicade and Overwhelmed...

[lisadc1]

Hi...I am new to this forum and am overwhelmed. I was diagnosed with Crohn's and Ulcerative Colitis back in October so I am still trying to figure all this medicine stuff out. I have had symptoms most my life, but no one ever put it altogether until I began a flare in June 13. I cannot seem to get out of it. Was sent to a GI & after testing - endoscopy, pill cam, and colonoscopy as well as many blood tests, I have been put on Pentasa (8 per day) but switched to Lialda, have been on Entocort for 8 months at 9 mg, have been on the Canasa suppositories off and on and the cortisone enemas...I also take lomintil and bentyl as needed - especially when I go to work (teach first grade). The extreme symptoms of D have kept my potassium levels low enough to have doubled my potassium meds and on occasion have to go to er to get refueled when I get dehydrated as well as put on the potassium drip. Went through the bleeding stage recently, but now that part has cleared up. My GI dr. as well as my pcp is still not satisfied and wants me to begin Remicade next week, but I am terrified of all the side effects and testimonials I have seen out there and I am wondering if it is worth the risks. Initially I lost 24 lbs, but with all the steroids I have been on I have gained all that back and then some, despite my D of several times a day. I know this is a lot of info, but I feel so alone in this journey and just need advice. I do have a thorough GI dr. or so it seems, as well as a wonderful hubby, but I try not to overwhelm him with the details of this mess.

Trying to stay strong, but losing the battle...

 

[nogutsnoglory]

I know it's all overwhelming and scary, it's like learning a new language. One we gotta learn quickly to understand what's going on and how to get the best care. You are in the right place for answers and support.

Personally I would be much more afraid on the steroids any longer than necessary. The steroids have much more common problems than drugs like Remicade. Yes, remicade has scary side effects that can result in cancer etc but it's so rare that it's worth the risk if you have moderate to severe crohns. Keep in mind all drugs including Tylenol can be lethal.

 

[DJW]

Hi lisacd1. Welcome to the forum. I'm also starting remicade soon. My crohns never responded to meds which has resulted in a lot of surgery. I heard great things about remicade. Personally I'd take the risk over uncontrolled crohns.
You're in a tough place. Recently diagnosed and a lot of major decisions regarding meds. Questions about the unknown.

Sending you and your husband my support and best wishes.
I hope this treatment leaves you feeling like a new person.

 

[theOcean]

Remicade honestly isn't that bad. I've been on it, as well as immunosuppressants and Humira, and basically all the big medication. I haven't gotten any side-effects or anything bad from any of it. It's probably saved my life, honestly.

Untreated/badly-treated Crohn's can be far more dangerous than any of the treatments for it can be. There can be complications caused by Crohn's, cancers you're prone to, not to mention the damage it's doing internally.

I have a friend of mine who has been on Remicade for 9 years and hasn't had a single problem. I was on it briefly, but was unfortunately allergic to it and switched to Humira, which has done wonders for me. Now I'm in remission, and I don't have any problems. My colon has healed so well my GI said he couldn't even tell I had IBD at all.

 

[Daisy123]

A recent study showed no increased risk of cancer with Remicade and people have been really well on it. Steroids are no better, I now have osteoporosis as a result of high levels when younger. Uncontrolled Crohn's is much worse.

 

[valleysangel92]

Hello, welcome to the forum!

I totally understand your fears regarding the remicade. I know its a big, scary drug and the list of potential side effects seems endless. Honestly though, the risks of under treated crohns are so much worse. I don't want to scare you, but a lot of the small risks with remicade exist with untreated crohns too, but at a higher level.

The thing to remember is that generally people who are doing well won't comment or write about it, they are too busy enjoying their health. Its often the people who are struggling or having a bad experience that feel the need to write in the papers or online about their difficulties, which leaves a disproportionate number of bad stories compared to good. There are many people who say remicade was their 'miracle' drug because it was/is the only thing that's given them proper relief.

It isn't a cure, and it isn't a guarantee of remission, but it is a very good shot at it and it is much better than under managed disease.

Every drug has risks if they aren't used correctly or if the patient doesn't get proper monitoring. Your medical team will keep a very close eye on you and will address any issues as soon as they are able. Remember that side effects are only a potential, they are not guaranteed, they have to tell us because it can happen, not because it definitely will.

 

[lisadc1]

Thanks for the information and encouragement. It has seemed like a never-ending battle since last summer and so overwhelming at times. I have never been this fatigued or down with this for such a long time period and I feel like it takes a toll on my family as well, like I am more of a burden than a wife and mother. So hopefully this is the answer.

I noticed some of you have multiple issues. I was diagnosed with diabetes last June, just before the big flare up that won't go away. And they are now looking at fibromyalgia as well, with a few other problems they are look at. I seemed so much healthier just over a year ago. Are all these issues interconnected?

 

[valleysangel92]

You aren't a burden *hugs* . I know it's easy to feel that way, I've been there, we all have at some point, but your family love you and I'm sure they just want you to feel better.

Some conditions can be linked together yes. For example, if you have one condition involving the immune system you are far more likely to have another.

My rhuemy told me it's quite common for people with chronic conditions such as crohns to develop issues like fibromyalgia, they aren't really sure why, but he says it's probably something to do with the way that chronic illnesses cause pain over a long time and sort of activate the other nerves.

Unfortunately many of these conditions aren't very well understood, hopefully they'll get a break through in the near future and things will become clearer for us all.

I'm newly diagnosed with fibromyalgia myself so if you ever need to chat to someone or have any questions about the diagnostic process feel free to message me

 

[momofthree]

Hi lisadc1,
I've just started Remicade myself. When my GI DR first started talking to me about it a couple of years ago, it was too scary to think about. Then I had my first resection in 2012, and went without meds for a year and a half, then unfortunately had to have a second resection a few months ago. When faced with my CD getting out of control..Remicade was no question. I just had my second loading dose this past week - so far so good. I've also started Imuran, and they say that the 2 together when a patient hasn't been exposed to either, the results are great. Hang in there - it's alot to absorb. I've been diagnosed since 98, and would rather be taking these drugs than steriods. All the best.

 

[lisadc1]

Mom of Three, do you have any side effects with Remicade? Any fatigue or D still? I lost part of my colon when I had to have an emergency hysterectomy in 1999. I had severe endometriosis and when they went in my ovaries were "glued" to the colon. I had been having many problems for many years with all this and that made it worse. I lost nearly a foot then. I stay so fatigued trying to teach first graders with all these meds and not the relief I was expecting...Oh, I was diagnosed as diabetic right before this major flare last summer and the steroids are pushing my numbers in all directions. I hope this works for you!

Thanks everyone for the information. I guess I am just trying to wrap my mind around something I never expected without letting it impact my family. Not doing such a great job.

 

[Lisa]

I've been on remicade since the fall of 2005, and wouldn't go back to other meds of I could help it. I have been able to live a full life, really not limited on anything except for every 8 weeks when I get my infusion....much less restricting in my opinion.

I've had a few issues here and there, but nothing worth stopping remicade as the potential issues stopping it outweigh the positives I get from it.

 

[momofthree]

Mom of Three, do you have any side effects with Remicade? Any fatigue or D still? I lost part of my colon when I had to have an emergency hysterectomy in 1999. I had severe endometriosis and when they went in my ovaries were "glued" to the colon. I had been having many problems for many years with all this and that made it worse. I lost nearly a foot then. I stay so fatigued trying to teach first graders with all these meds and not the relief I was expecting...Oh, I was diagnosed as diabetic right before this major flare last summer and the steroids are pushing my numbers in all directions. I hope this works for you!

Thanks everyone for the information. I guess I am just trying to wrap my mind around something I never expected without letting it impact my family. Not doing such a great job.

I do feel fatigued the day of the infusion and the day after, but other than that I feel pretty good. Since starting these two drugs I've been having quite "normal" bm's. (Which is a miracle because over the past couple of years I've dealt wit horrible constipation due to partial blockages) I tried to eat a few raw veggies the other day but my gut was not happy about it! I'm hoping after the third loading dose, I'll feel "normal" and be able to eat raw.

 

[xmdmom]

I am surprised that you received the diagnosis of ulcerative colitis and Crohn's. While I've heard it's possible, it's extremely rare. It's most likely one or the other. I would clarify this with your doctor if you are not sure because the treatments are different.

It certainly isn't easy going through what you've been dealing with and having to make these decisions. I wonder if it would be easier if you share the details with your husband so you have someone to discuss it all with. Can you talk to him about your concerns of overwhelming him? Sending healing thoughts and hugs. You are not alone.


In terms of the fatigue -->My son has Crohn's on entocort and LDN and although he doesn't have other symptoms now, he still has fatigue -- i've read posts from people on Remicade who seem to feel normal.

(and yes steroids do make diabetes quite difficult to control)

 

[lisadc1]

Xmdmom, I had endoscopy, the pill cam, and colonscopy...he explained where each, crohn's and colitis were. I wish it were neither. Praying for your son! I am ready for some normal, although not sure what that is.

 

[xmdmom]

Yes wishing you "some normal."!

 

[aburns]

I was on Remicade for seven years and achieved remission. I had to switch to Humira because the nurses could not find my veins any more. I had a reaction to the Remicade but with a dose of Benadryl I was fine. Good luck

 

[amyh]

I was on Remicade until I became immune to it. But I think all the other drugs you tried would have worse side effects than Remicade. I couldn't handle the Imuran, too many side effects, but I was fine on Remicade. The 3 hour sessions were kind of nice and relaxing.

 

[lisadc1]

Rough day today...stress of my oldest daughter's wedding this Saturday, upcoming hs graduation of my youngest in 2 weeks, lots of company, closing out another school year with state testing beginning tomorrow, and a colon that has a life form of its own. I really want to get off this horrible roller coaster ride. Crohns & fatigue & a messy house are winning this battle...

 

[DJW]

Rough day today...stress of my oldest daughter's wedding this Saturday, upcoming hs graduation of my youngest in 2 weeks, lots of company, closing out another school year with state testing beginning tomorrow, and a colon that has a life form of its own. I really want to get off this horrible roller coaster ride. Crohns & fatigue & a messy house are winning this battle...

Keep fighting - you're going to win the war!

 

[lisadc1]

Still waiting on the call about the Remicade...in the meantime, my colon feels like it is doing jumping jacks. I can watch it bounce around. With this much movement, you would think I could at least have a baby in there!

-Exhausted and just want my life back...