Please Read....I'm so Scared!

Hello Everyone, I haven't been on here in  while because everyone is always saying to stop reading everything on the computer because I get so nervous and then don't get help for the Crohn's. I feel that this forum is very helpful and not like others I hve been on so I don't care whaat the doctors and others say anymore.

Ok, so here is what has been going on. I believe its been about 4 years now since I have found out I had crohn's disease. It's been almost 4 years of constant D and I haven't had a formed stool at all. I have been in the hospital a few times but never put on steroids or anything except Asacol (which I have been taking for almost 4 years). A GI doctor prescribed entocort a couple of years ago but in my opinion it just made the D worse so was taken off. In May and June I was admitted into the hospital to get seton drains put in. The one that was put in in May i didn't have any problems or pain but the one put in June caused me to run a fever after surgery and since then it drains alot and bleeds and I'm uncomfortable . I was suppose to start Humira in July (I believe) but when I went to the GI clinic they found out about some heart issues so they said I needed clearence from cardiologist. It was a long summer with all my kids being out of school and to be honest I was scared so I wasn't rushing.

Well, I ended up in the hospital being admitted this Wednesday so they could have the cardiologist see me asap to start Humira because it takes months to get into the clinic. They did a echo and I was cleared to start medication. Then I find out that the hospital pharmacy doesn't have Humira so they wanted to start me on Remicaid . The GI doctor was pissing me off because he kept contridicting himself. He tells me they are the same meds but then turns around and says remicaid is better for the peri anal disease and fistula's but then says they both work the same so I got drustrated because I was already scared. They told me to decide what I want to do and came back later and I told them I prefer to start Humira so they said that was fine. They did a chest x-ray and blood work for hepititis and I was discharged at 9 p.m. last night. I was told to come to the clinic on Tuesday to get the presciption for Humira and they gave me a number to a humira nurse that I have to call after that so they can come to my home and show me how to inject myself.

I am freaking out because of this medication and stories I have read on the internet . I am very sensitive to medications and that also scares me. They didn't want me on steroids which I was shocked about because a lot of people say they feel so much better. Maybe because I already suffer from severe anxiety and panic attacks they feel it will make it much worse (i don't know).

Is there anyone out there that is on Humira and it has helped? After the injection did you have any side effects, if so can you tell me what they were?  Has anyone had peri anal disease from crohns and fistula's And Humira helped? I just want to start to live a normal life again and enjoy time with my kids and husband instead of being tired all the time and laying in my bed. I've been like this for so long that I forgot what enjoying life feels like. After I ws discharged from the hospital I started having such bad D and am running a loe grade temp again   . I feel like crap and was so excited to get home but now I'm wondering if I should have pushed to come home so bad. I just hate being in the hospital over the weekend because it's a wastge of time unless it's an emergency.

I also have other worries about being on Humira because I have 5 kids who still live at home. The younger ones are always getting sick(especially my 4 year old who is very sick now). Then the home that we live in is not kept up by landlord and we have bold problems etc.. My son's doctor said we need to move from here because since moving here 3 years ago him and my 14 year old daughter have been sick all the time and have developed very bad asthma and allergies. We live in a small bungalow right next to the beach and it's not insulated properly (if at all). When I tell people where I live they think it must be nice but believe me it's the total opposite. We can't afford to move so that is not an option at all (believe me I've been looking all summer). With the living conditions that I am in right now and with it getting cold and the kids getting sick will I be safe on Humira? I tried to speak to the doctors about 6mp but they said it won't help for peri anal disease or fistula's but also said being on Humira is not a definiate either .

I know there are people out there that are feeling way worse then me and going through way worse then me and I don't mean to sound like a big cry baby but I am so scared. They said 36 cm of my small intestines has been inflamed for almost 4 years and I have to do something. My other worry is that once the inflamation goes down won't I develop scar tissue being that it's been inflamed for so long and can't that cause me to have a blockage. When I ask the doctors they just try to ignore my question and say if I don't do anything at all it will cause a blockage eventually.

I know this is long and I always try to write everything so I can get all the answers I need (and support). I thank everyone in advance who takes the time to read all of this and can give me as much answers, advice, opinions, and support.

First 36 cm is about 14.5 inches, so just a little more then a foot, which is kinda good news because they could probably do it laposcopically.  Which means less pain and recovery time.

Second, I think you might want to exhaust all medications before surgery.  But that is just what I am doing.  A lot of people have had really good results from humira, and so it really might be worth it to try. 

I think fevers have a tendency to go up at night, so I would consider taking some tylenol. But keep a really good eye on it. But that is just what I would do with my own situation.  Not giving advice just sharing what I would do.

Hope it helps, sorry so brief.

 

Yes, the steroids can make emotions a bit more exaggerated...so to speak...steroids, though effective, have so many bad side effects, but it is a drug we know, so we are not as scared...

Humira and Remicade are VERY similar meds...the Humira does not have mouse proteins (it's a derived antibody)... but yes, in peer reviewed journals and studies, Remicade is a bit more effective(for fistulizing crohns, and some perianal applications) than the Humira...it might be because the Remicade is delivered IV as opposed to the sub cutaneous route of the Humira...

There are a lot of us that are on many of these medications, some of us have even gone though the whole series (I'm on Cimzia now)

As to the posting...you only posted your first response a couple of hours ago...it does take awhile to get a response...

And I'm with Navy on the surgery vs. meds...there is MUCH more that could go wrong with surgery...I know it feels like you just want to yank out all your guts and be done with them, but that rarely is ever the answer (I had anal surgery, and I still can't sit right, and it's been near 3 years...it takes a lot longer to heal from surgery)

There ARE reactions to medications, but even aspirin, if you read the bad reactions (see Reye's syndrome) can be pretty serious...it's just they want to make sure you are aware of any possible reactions...

Post Edited (Becoming undone) : 10/17/2010 8:59:32 AM (GMT-6)

Thank everyone who wrote, I'm sorry for wanting answers so fast it's just that I am so anxious and dont feel well right now. I didn't have a temp in the hospital at all and now that I am home I feel horrible:-(

@ Navy...My surgeon doesn't want to do surgery even though I suggested it because I just want to feel better. I guess because she feels that I am young she doesn't want to start removing any of my intestines without first seeing if the medication will work. I'm worried now though because I have read that Humira will cause scar tissue and I have had the inflamation in the same spot for 4 years straight. Maybe I should have started the remicaid in the hospital so if anything went wrong I was already admitted but I got scared because I was told most people have side effects from Remi after taking it and some people have serious side effects when they are on about their 3rd infusion (just stuff I have read on the internet). Sigh....I hope I made the right decision by picking Humira because of the perianal disease and rectal fistula's. I took some tylenol so I hope I will feel better soon and thank you.

@ Stef....Thank you so much for taking the time to read everything and writing me. I'm glad you was able to read through all my typo's. I have so much going through my head that I typed and didn't reread it for typo's until I posted it :-(. Thank you for your support and understanding how anxious I am feeling. It hurts me so much for my kids to see me always running into the bathroom and feeling so weak. It makes me cry when my 4 & 5 year old come into my room and ask me "mommy do you feel better" and I have to lie and say yes so they don't worry. What you wrote about being a middle school teacher and having your own kids while being on these medications and not getting more sick then a person who is not makes me feel a little better to know. I just wish my 14 year old and 4 year old didn't get sick so much because they touch everything and I don't want to pick up anything from them while being on the medication. When I came home last night from the hospital the two of them were sick and running a temp :-(. I truly believe the mold problem in here is really making us all sick and I mentioned to the doctors but they don't care about anything except getting me on medication. Since I have found out about me having crohn's I stopped eating a lot of stuff (fried food, spicy foods, corn, etc...) and unfortunatly ended up losing over 50 pounds. I can't afford to lose anymore weight at all right now. I never hears of the diets you mentioned, maybe I should look it up. All this just feels so overwhelming :-(. Did you have side effects after Humira injection and if so would you mind telling me what they were?

@ becoming undone.....I should have your name because that is how I feel right now. Thank you so much for the information you gave me. I am really starting to feel that I should have taken the remi while I was admitted in the hospital. I'm feeling a little nervous that the Humira won't help with the perianal disease and rectal fistulas. I really wish when they told me 4 years ago that I had crohn's I would have listened and took the steroid and 6mp but I was in such a denial that I wanted a 2nd and 3rd opinion. I feel if I would have done wht the first GI doctore suggested I wouldnt have never got the perianal disease and rectal fistulas and theres nobody to blame but myself. You are very right about side effects with everything, I take extra strength tylenol and Im sure if I read the side effects I would be freaked out. I guess it's just that I dont know anyone that has crohn's and taking these medications and its so scarey for me. people keep telling me tht you won't die from crohns disease but when reading the side effects to these meds it sounds like it can give you severe peoblems and even death :-(. I don't want to be negative and I do pray and want to be positive that Humira will help me. I hope I will be able to put a post up saying how great I feel soon.

at this point in time I think Humira might one of those hoops you need to jump thru, because it might really help you. I have had the lupus like reaction to both remi and humira, and it is super rare. Basically it hurt to move. But the thing of it is this medication could be a wonderful drug for you and really help you live. Do not let the risk of side effects keep you from really living your life.

I understand the fear of starting humira and i am about to start it this week. i have come to terms with the possible side effects and risks and have weighed them against the problems i have without the humira.... so i have decided to try humira and see what happens. Many many people have great results. It is a good idea, in my opinion, to exhaust the meds before u go to cutting and surgeries. I wasnt offerred remicade because it is not available in my area. I have no choice but use Humira... so I can't help u there, but I think Humira is pretty much the same as Rem in regards to positive results.

I understand your nervousness because I feel it too. I also feel alone because I don't know anyone personally who has this disease (my brother has UC but he had the surgery years ago and is perfectly healthy and hardly talks about it). I am trying to use positive thinking "it will work it will work" right up to the day i have my first injection. Maybe that will help.

In the end, at least we have tried it and if it doesn't work then I guess we have to tackle the idea of surgery. Either way the crohns can't be left untreated- in my experience it just gets worse and worse and worse without proper attention.

Know u r not alone in this concern and I am quite anxious and worried as is my hubbie and family/friends. However I have decided that I have got to try it. You may be able to get to this place of assuredness after some time thinking and talking about it with famly, friend, this forum etc.

I hope it helps u to know u r not alone in this struggle. This forum has really been important for me in the last few weeks... chronic illness is not fun but when u have the knowledge of being a part of a larger group, it can be more bearable.

I live in an area with a high incidence of TB... so I do understand your concerns about the risk of infection... like others have said, we have to be more diligent in hand washing, etc etc and hopefully we will be ok. It is very rare that anyone gets sick with an infection to the point of severe illness due to Humira. I watched a presentation online about it ... it was informative. someone had posted the link on this forum..... i will look for the link for you. It is very detailed and takes an hour but for me it was what i needed to work through the risks/benefits of taking humira.



Best of luck

B

I've been reading your follow up posts and I wanted to tell you that if you're re-thinking the humira thing and you want to try remicade, then you should. Don't feel like you've been pigeon-holed into it just because that's what you told the doctor you would do. You can easily call your GI and talk to him and tell him that you'd like to the remi instead. It is a little less convenient because it's an i.v. infusion, but the tb tests and chest x-ray won't have been a waste of time because you need them before you start remicade anyway.

A stricture is spot where there is a narrowing of your intestines. It can pretty much occur anywhere in your GI tract. If the narrowing continues it can cause serious problems and you might need to have the narrowing stretched surgically. I've had two strictures for years and no worsening trouble with them, but that is not the case for everyone.

You should make a list of questions that you have and then call your GI or make an appointment to see him. Don't leave until you have all of your questions answered. Ask about whether or not he thinks you should get a colonoscopy before starting the meds. Ask about the remicade helping fistulizing crohn's, but humira not helping it as much. Ask him which one he would recommend and why. Ask him about the mold. Ask him about the tb test and chest x-ray. Ask him anything you want. For some (most) of these doctors they get so jaded they forget they're taking care of actual people. It's ridiculous and unacceptable. The sad truth is that if you don't advocate for yourself, no one else is going to. That's the part that sucks, because when you are sick it's hard to fight. You feel like you have no fight left in you. But you have to push because if you don't you will just get bumped around and fall through the cracks. The squeaky wheel gets the oil - that's for sure as far as being a patient goes.

As for the diets - you can google them. I stumbled up on them when someone here mentioned the Specific Carbohydrate Diet in one of their posts. It can feel very ovewhelming when you're already worried about so much stuff. BUT it's actually not as overwhelming as it seems. The basic idea is that certain foods aren't digested properly by your body thus causing inflammation, diarrhea, etc. When you eliminate those foods from your diet and only eat the foods that your body CAN digest properly then you feel better, your guts heal and you get better nutrition. That is the very watered-down version. Since you have already tried eliminating certain foods from your diet, I don't think it would be difficult, but the diet is VERY strict. The Makers Diet allows for a lot more, but I am not familiar with that one, so maybe someone else can tell you about it. You can even search this site. There are LOTS of threads on SCD and The Maker's Diet. Even when I'm not on the diet but want to feel better I eliminate obviously sugary foods (soda, cookies, syrup, cake,) and try to eat only natural stuff (like no margarine, just butter - no white sugar, just honey) and it helps SO MUCH. Maybe you will find that a few small changes make a big difference. Anyway....

One more thing - I have never had a reaction to any of the meds (humira or remicade). The remicade caused me to have a VERY mild chronic sinusitis - I always had post nasal drip, but wasn't stuffy or runny. BUT, that was NOTHING compared to how much better it made me feel with the crohn's and my arthritis. And if you take the remicade, they make you take a benadryl beforehand so that you won't have a reaction to it. After a few years of taking it, I stopped taking the benadryl ahead of time. I have zero side effects from the humira, but it doesn't work as well as the remicade - but that could be because I already have some kind of immunity built up from the years of taking remicade.

Hang in there momma. You will get through this. I hope that you can get some peace of mind and make a decision you feel confident about regarding the meds.

Post Edited (Stef17) : 10/17/2010 10:33:07 AM (GMT-6)

@ Becktoria, Thank you so very much for that link. My husband and I just watched it and honestly it made me feel SO much better. The doctor was so helpful and the slideshows with the actual numbers were GREAT! It didn't increase my anxiety at all and actually made me feel a lot less worried about starting Humira. I am still a little nervous because although the risk for the serious side effects were 4 out of 10,000 (it was 4 right?) I can't help but think will I be one of the 4 but I have to stay positive . The problem I have is they didn't speak about rectal fistulas or perianal disease and Humira or remicaid helping for those problems and I am very curious to know if anyone has these problems and medication has helped them.

I can't tell you how much I appreciated this link and I am sending you a big (((hug))). I wish I could find a doctor like him that would take the time to explain things instead of the doctors who I have that really don't know about the medications :-/. I believe I mentioned above how I had to find out about the test that should be done before starting Humira and then they did them. The only thing I have to do now is tell my doctore about the flu shot because I really think I should get it before starting it after listening to the doctor on the website. Thank you so much and really hope things work out for you with Humira with little to no side effects. I hope we can stay in touch to see how each other is doing. When do you start Humira?

I am starting this week- have everything ready but just waiting for one call from the drug plan saying I can go ahead. So it could be tomorrow or it could be Wednesday. I will surely post when I have gone thru the experience to share what happens ok! Also I have a small child as well (grade 1), and so I have that risk of getting bugs/germs from her. As a result, my hubbie, my daughter and I all got the flu shot yesterday to help ward off the flu if at all possible. Everything we do to keep ourselves germ free is one more step to making the humira successful in my opinion. Also Stef17 made some really good points that may be helpful to you above- not sure if you saw the post yet... about writing your list for the dr and advocating for yourself with your drs. I can't comment on fistulas... at this time I do not have to deal with that issue.

We will surely keep in touch through this site as a lot of us are starting Humira this week and many more have tried it. As a social worker, I always believed that reaching out for suport and sharing ones experiences is a key part of healthy healing and recovery.

Best of luck!

B

@ orngie.....Thank you for writing and letting me know your experience. I am sorry my post are so long and I know it must be frustrating to read everything. I guess I write about as much as I talk and thats a LOT. I actually would write so much more but have to stop myself. I do feel a little less anxious after talking with everyone regarding starting the medication and I really hope I will feel better soon.

I'm thinking that since I know have some information about being on remi and Humira and the side effects I should start a new post regarding perianal disease and rectal fistulas because I don't think to many people are going to want to read these long post.

Thank you