Humira started while I have abscess, scared & need advice

[powerless]

Hello. I recently relocated to Palm Springs, CA from Columbus, OH and came to the hospital with severe pain & fever when they found an abscess. That was 12 days ago that I was admitted. Not much has happened. I just turned 25 and this is my first experience in the hospital without my parents around to ask questions for me.

Their approach to treatment here has been IV antibiotics, pain medicine, and anti-nausea medicine. I recently had a 2nd cat scan which revealed that the abscess is walled off but still the same size and not changing at all.

In the midst of me being sick & in a lot of pain a GI came to see me and told me that he suggested I go on Humira without addressing ANY other treatment options for my Crohn's. He didn't even mention that it was a high risk medication. I had briefly saw that it worked really well for some people on here and that was it. I was so sick I just went with it because it sounded like Remicade which did REALLY well for me. On Christmas Eve I was given my loading dose. The day before that I had horrible fevers and nausea all day - so obviously my body was still in infection mode.

Now that I have felt somewhat better I have decided to do further research and the patient reviews I'm seeing are not great. Yes, some people are very happy with the results while others have had quite sad experiences. The number one thing I keep running into is that it says if you have an abscess or active infection do not start this med. So, today I asked my GI A) why did he not tell me about the high risk involved or counsel me on them and b) Why has he put me on this medicine while I have an abscess?

His sorry answer to the first question went like this, "Well you had to be put on something. We couldn't just have you without treatment for your Crohn's." No answer AT ALL basically to my question.

Second answer: "Your abscess is walled off and your infection is contained."

So, in that case - despite the fact that my body does in fact have an infection, does that mean Humira won't hurt it? When I was on Remicade I was in a study to get it FDA approved for youth, so, I was counseled quite intensely on the seriousness of it and given boat loads of paperwork on it. I have NOTHING on Humira and was told NOTHING by the doctor, other than it is made with human protein rather than mouse protein.

I am so frustrated. I don't feel I am being heard at all and I feel taken advantage of. To top it all off, I have been here going on two weeks and I haven't even had a colonoscopy. I asked the GP on my case why and she just said, "We already know you have crohn's. Why would we do that?" to which I told her it's long overdue that I have one.


If you have any advice, please share it with me. I am at my wits end and I feel taken advantage of because I'm young. I'm really scared because I have never been in this situation. I was diagnosed 10 years ago today and finally have entered a stage of acceptance only to be tested with all of this. Please, please share whatever wisdom or just words you can with me. Thank you.

 

[beth]

Have you read anything in this part of the forum including this particular thread?

So, you need to ask the doc's why they have started you on Humira whilst having an infection and explain to you why it's a good thing. Write down the questions you have so you don't forget them when you have a doc's attention. If the answers you get aren't sufficient, say so and ask for better information. No-one here is your doctor, only your doctor has the direct answers.

If you read through some the thread and section I posted links to above you'll probably come up with many of the answers yourself.

As to the unethical behaviour of people looking for payment in the American hospital system I'm afraid I lack sympathy entirely.

 

[powerless]

I wasn't looking for sympathy. I may be American but I am not responsible for the hospital system or the government for that matter. I have spent the majority of my life in and out of hospitals and while I'd like to have an effect on politics, that has not had a place in my life just yet.

Yes, I had questions which may have answers elsewhere in this forum but I was mainly voicing my frustrations. I wasn't looking for sympathy so much as someone who understands. Perhaps I didn't put it quite so eloquently. I was diagnosed when I was 15 and went awhile without needing hospitalization. Now that I am 25, this is my first time on my own in a new city and I am having trouble being my own advocate in this setting. I wasn't looking for answers that only my doctor could answer so much as advice or understanding from other people with similar experiences that they once had to overcome. Lots of things related to Crohn's or a diagnosis don't always have an answer, but when you finally decide to take that step and open up to others, that itself can be the answer or a road to the solution.

...
I've been in the hospital 13 days now. How would you feel? You might have a rant of your own if you were in a similar situation, so, how would you feel if you got that kind of response from someone? I'm sorry if I posted it in the wrong area of the forum. This is only my second time posting to this forum and I'm quite nervous as I have never really opened up to anyone about my illness. I am a very shy person anyway, so getting a response such as the one given makes me feel rejected and closes me off even more. No, that's not your fault - obviously it's something I have to work on.

Reading over my post I am now second guessing myself and realizing that I probably appear to be a bitchy, immature person. That's just how it came out in the midst of my frustration. The main thing I was trying to get across is that I don't feel like I'm being heard. I came here to be heard. I'm sorry I came to the wrong place.

 

[DustyKat]

Hi powerless and :welcome:

It can and often is such a shock to the system to go from paediatric care to adult care and one of the main problems is exactly what you are experiencing...not being heard and lack of information. You have gone from having your Mum and Dad there and a system that is geared around keeping everyone informed and in the loop to something so totally different, it's no wonder you feel the way you do...:hug:...I understand what you are going through as I saw the same differences myself when my son was admitted to an adult hospital the year. The differences can be hard to take.

My children have never been on a biologic but you are right to question its use when you have active infection as it is normally contraindicated under these circumstances. Ultimately the decision to prescribe it under these circumstances rests with your GI and it can be prescribed when infection is present. The reason for not prescribing is it will suppress your immune response to infection. You have every right to expect a better explanation to the one you received, it was condescending, to say the least, on the GI's part.

I hope you can get things sorted with the team hun. You will develop advocacy skills, yes, you are young and it does take time BUT you will get there! Good luck and let us know how you get on.

On second thought the team sound pretty blasé, any chance of a second opinion?

Dusty. xxx

 

[Danielleinmoncton]

New member here. This is the first thread I ever opened and I am shocked at Beth's insensitiveness and condescending attitude...

Yikes! I hope this doesn't reflect the rest of this website....

 

[David]

I wasn't looking for sympathy.

You may not have been looking for sympathy, but you sure as heck get it from me :hug:

I am so sorry you're going through this, you poor thing. It must be really scary My heart aches for you.

I'm sorry if I posted it in the wrong area of the forum. This is only my second time posting to this forum and I'm quite nervous as I have never really opened up to anyone about my illness. I am a very shy person anyway, so getting a response such as the one given makes me feel rejected and closes me off even more. No, that's not your fault - obviously it's something I have to work on.

You're doing great, I salute you. Sometimes when we make ourselves vulnerable we get hurt. Our choice is to then close back up or feel the hurt and resolve to open ourselves up even more to the world. It's something I constantly work on as well. Our society sure gives me lots of chances...

Reading over my post I am now second guessing myself and realizing that I probably appear to be a bitchy, immature person. That's just how it came out in the midst of my frustration. The main thing I was trying to get across is that I don't feel like I'm being heard. I came here to be heard. I'm sorry I came to the wrong place.

You're not bitchy. And if you're immature, I should be in diapers

We really are here for you. We're on your side. And most of us here have IBD and our own troubles. We all have bad days and we all are human and hurting.

Don't close off. Open your heart. Make yourself vulnerable. In my opinion, it's part of the healing process.

*hugs*

 

[tiloah]

Well I'm not a GI but I can imagine if your doctor put you on a biologic while you had an abscess, he probably really thought you needed it. Whenever a doctor prescribes a drug, but especially when biologics are concerned, they will weigh the risks versus the benefits. Biologics are used in moderate to severe cases of disease, and are especially good at healing fistulizing (similar to abscess) disease, which may be why that is what he thought you should take. Humira is a really good drug, and it has helped a lot of people. It may be scary to take it, but uncontrolled Crohn's is even scarier (at least in my opinion). Humira may be a "strong" drug, but if you've been in the hospital for 13 days there's obviously a reason to treat with it. For what it's worth, it can take months to reach effectiveness with Humira (all the reason to start it sooner), so your doctor might have been hedging on your abscess healing before it affects your immune system.

As I said, I'm not a GI so I'm just throwing out ideas. I just hope you will not have a bias against Humira just because this doctor gave it to you without educating you fully first. It is of course your choice to discontinue treatment with it at any time, but I hope that you'll give it a chance. I definitely do feel like your GI has some 'splainin to do. I know they think they are too busy to answer questions, but if you have them he should take the time to answer them.

I don't think your doctor was trying to "take advantage" of you. It's possible they weren't aware of how vulnerable you were/are or felt. Oftentimes doctors either think you can't understand or can't be bothered to explain, and thus will be dismissive about questions.

You should know for the future that you and your doctor decide your plan together, and you cannot be given treatment without consenting. That may not be useful when you're desperate and sick in the hospital feeling awful, but that's when it's good to trust your doctor to make the right decision for you. Is it possible for you to bring an advocate with you to help make decisions the next time you are in a situation like that?

I hope you find a treatment that is effective for you and that you are comfortable taking. I'll be sending positive healing thoughts your direction.

 

[powerless]

I think the problem is that the abscess is tiny. So tiny that they don't want to do per-cutaneous drainage or risk surgery, so we are playin the wait and see game. The antibiotics are not reaching it, so now they are wanting to see if it will just get smaller on its own. We're gonna do another cat scan tomorrow or the next day, I believe. & depending on the results I may stay or look for another place to go. It just doesn't feel like there is any progress being made and that's whats frustrating me. The whole Humira thing was icing on the cake after all the frustrations of being here for so long. My doctor went on vacation and had a fill in who didn't really know much about Crohn's. I had to wait about a week until she came back and during that week I was on about 3 different antibiotics.

I just wish I'd get better :/ I am willing to give Humira a try as I've already taken the loading dose, but I really wish he would have mentioned something to me about the risks. I am especially scared about the increased cancer risk. I've always been someone who has infections constantly. My earliest memories are health related, in the hospital, and having multiple infections all the time. So, it scares me. I realize a lot of drugs for Crohn's do in fact suppress your immune system, but I get the feeling it's at a whole new level with biologics? Maybe I'm wrong, but having a history of so many infections on a yearly basis my decision to go on Humira may have been slightly different had he warned me about this.

It does help that there are other people that understand, though. It's nice not to feel so alone, though that is a double-edged sword because I wish you guys didn't have to suffer or know family members who suffer with this awful disease! But yeah, thank you guys for your warm words... they are greatly needed right now.

 

[powerless]

You should know for the future that you and your doctor decide your plan together, and you cannot be given treatment without consenting. That may not be useful when you're desperate and sick in the hospital feeling awful, but that's when it's good to trust your doctor to make the right decision for you. Is it possible for you to bring an advocate with you to help make decisions the next time you are in a situation like that?

I did consent, but my consent was given without being counselled on risk factors involved. & I don't think I have anyone like that here to help with that. I just relocated out here by myself. Everything here is completely new to me! I have family in San Diego, but none that I want to burden with this (that's another problem I'm learning to deal with - not feeling like a burden for asking for help). I do have a good support system, so, I might try looking into someone that can help next time. I think maybe if I came up with a standard list of questions to ask when put on new treatment that might even help.

I also would have felt more comfortable had they consulted my GI like I asked instead of sending me over a new one. I had only seen him one time, but he has experience and some expertise in dealing with IBD. The one on the case now does not :/ & they're telling me they can't consult my GI because they already have a GI handling it which sounds slightly ridiculous.

 

[DustyKat]

I think it may be a good idea to have someone with you as you have mentioned. You will never be a burden hun, believe me, you won't...:hug:...and I am saying that from a Mum's perspective. Take a look at this...

http://www.crohnsforum.com/showthread.php?t=12000

And this...

http://www.crohnsforum.com/showthread.php?t=22520

When you are ill and frustrated as you are it can be hard to take in all that is happening around you and it is easy to forget the questions you want to ask, so it's always good to have that extra set of ears and eyes.

Unfortunately the waiting game is all too common when it comes to this disease and as hard as it is at times it can be beneficial. It happened with my son earlier this year when he did have an abscess drained and he had to leave in the drain in for 3 months in the lead up to surgery. Knowing why it was there didn't necessarily make the time it was in any easier in many ways but at least we did know there was a means to an end.

The side effects of so many of the IBD drugs are scary but the most serious of them, like cancer, are very rare indeed. When weighed up against untreated Crohn's then there are far more and just as serious side effects when nothing is done. This is a wonderful article that may help put things into perspective you...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

I think if it is possible ask the questions of as many people you can there, nail them down, the doctors and nurses and see if you can get satisfactory answers, demand them. You have a right to be informed and more often than not it is the squeaky wheel that gets the oil, it shouldn't be that way but unfortunately it is. If you are still unsatisfied then it is most likely the time to move on.

Good luck hun and keep us posted!

Dusty. :heart:

 

[Dexky]

I takes all kinds to make a true community

New member here. This is the first thread I ever opened and I am shocked at Beth's insensitiveness and condescending attitude...

Yikes! I hope this doesn't reflect the rest of this website....

I'm usually the water-off-the-duck's-back type but I couldn't let this go unaddressed. Having known Beth through this site for a while now, I find her tough-love, tell it like it is attitude quite refreshing. If you will note, the original post has been edited. We cannot know exactly what Beth was responding to. Please don't jump to conclusions w/o all the facts!

Powerless, I'm sorry for your troubles but if you find you stay on Humira, you too will find Beth to be a wealth of insight and info. Good luck!!

 

[tiloah]

It does help that there are other people that understand, though. It's nice not to feel so alone, though that is a double-edged sword because I wish you guys didn't have to suffer or know family members who suffer with this awful disease! But yeah, thank you guys for your warm words... they are greatly needed right now.

Oh yes, I understand. Did you say you had been on Remicade before? Maybe that's why they thought you knew about the risks? I dunno. I'm not excusing their behavior, but for your sake I think it would be good to try to accept what happened and try to move forward from there. Although I know that's hard to do when you're still sick in the hospital and dealing with the same people.

From what I understand, biologics increase your risk of specific infections, not lower your immune system all together as some of the other Crohn's drugs do (like methotrexate). They can be more serious, but that's why you are monitored for things like TB. There is an increased risk of cancer, but there is also an increased risk of cancer just having Crohn's, and increased inflammation in the body is also known to increase cancer risk.

I had an abscess a few months ago. I had already been on Humira for a long time, so I was kind of in a catch-22. I needed something that would treat the inflammation (Humira and Prednisone) but they kept the antibiotics from being as effective as they needed to be. In the end it just couldn't be treated with medications and I had surgery, but so far that has been the best choice in my treatment I think I have made.

I hope you start feeling better soon.

 

[powerless]

I'm usually the water-off-the-duck's-back type but I couldn't let this go unaddressed. Having known Beth through this site for a while now, I find her tough-love, tell it like it is attitude quite refreshing. If you will note, the original post has been edited. We cannot know exactly what Beth was responding to. Please don't jump to conclusions w/o all the facts!

Powerless, I'm sorry for your troubles but if you find you stay on Humira, you too will find Beth to be a wealth of insight and info. Good luck!!

Everyone has their bad days. I'm not going to hold it against anyone.

What I said that was erased was a complaint about the hospital staff coming in my room in an attempt to take a payment from me while I was really sick. I thought it was unethical. I wasn't looking for sympathy about that...

But I'm just gonna let it go. It ain't no thang.

 

[powerless]

catch-22

Oh yes, I understand. Did you say you had been on Remicade before? Maybe that's why they thought you knew about the risks? I dunno. I'm not excusing their behavior, but for your sake I think it would be good to try to accept what happened and try to move forward from there. Although I know that's hard to do when you're still sick in the hospital and dealing with the same people.

From what I understand, biologics increase your risk of specific infections, not lower your immune system all together as some of the other Crohn's drugs do (like methotrexate). They can be more serious, but that's why you are monitored for things like TB. There is an increased risk of cancer, but there is also an increased risk of cancer just having Crohn's, and increased inflammation in the body is also known to increase cancer risk.

I had an abscess a few months ago. I had already been on Humira for a long time, so I was kind of in a catch-22. I needed something that would treat the inflammation (Humira and Prednisone) but they kept the antibiotics from being as effective as they needed to be. In the end it just couldn't be treated with medications and I had surgery, but so far that has been the best choice in my treatment I think I have made.

I hope you start feeling better soon.

True, they could have thought that since I was on Remicade I knew about the risks. When I was on Remicade, though, it was to get it FDA approved for youth so all the risks were not yet known (as they still may not be). & at the time I was under the guidance of my parents and not so thoughtful about those risks at that age. I guess becoming more aware of the risks is also part of my transition I'm dealing with here. I am just gonna let it go and accept it, though. Holding resentments hurts only myself at this point. I vented about it and it was nice to get it out, so, now I'm ready to breathe again

I can relate to the catch-22 thing. I've had a few cat scans now and nothing appears to be changing as far my abscess and that was before I was started on Humira. I had been on IV antibiotics and after the cat scan prior to Humira I was told that because the abscess is capsulated that the antibiotics can't reach it. So my main concern now is what will happen after A) the antibiotics can't get inside of the intestinal wall where it is and B) after starting Humira in addition to that. I think the problem is that the abscess is too small... Too small for the radiographer to want to put a drain in and too small for the surgeon to want to do anything about it. Catch-22, indeed!

Going on Remicade put me into remission for quite awhile, even after I stopped being treated with it so I don't regret that. I'm hoping it helps just as much

I hope everything is good for you in your disease process right now :rosette1:

 

[tiloah]

True, they could have thought that since I was on Remicade I knew about the risks. When I was on Remicade, though, it was to get it FDA approved for youth so all the risks were not yet known (as they still may not be). & at the time I was under the guidance of my parents and not so thoughtful about those risks at that age. I guess becoming more aware of the risks is also part of my transition I'm dealing with here. I am just gonna let it go and accept it, though. Holding resentments hurts only myself at this point. I vented about it and it was nice to get it out, so, now I'm ready to breathe again

Right but they didn't know any of that. So to them you're just a regular patient and they know your history of Remicade use, so they might assume (however appropriately) that you know what you're in for, essentially. They didn't have/couldn't appreciate your perspective.

If the antibiotics can't reach the abscess, Humira might do the trick. The purpose of the Humira is to reduce the inflammation that allows/encourages the abscess and infection to exist. Are you on steroids too? Steroids will suppress your immune system more than Humira, but they are more effective at treating acute inflammation in most cases.

Good luck with everything. Why did you stop taking the Remicade? Were you on a different maintenance medication? Were you on anything when this flare started?

 

[powerless]

Unfortunately the waiting game is all too common when it comes to this disease and as hard as it is at times it can be beneficial. It happened with my son earlier this year when he did have an abscess drained and he had to leave in the drain in for 3 months in the lead up to surgery. Knowing why it was there didn't necessarily make the time it was in any easier in many ways but at least we did know there was a means to an end.

The waiting game wouldn't be so bad if it weren't done in a hospital! I'm sick of it. I spent Christmas here and it looks like New Years, as well. Even when I was hospitalized to be diagnosed I spent New Years in the hospital. Ironically, I just realized why I've been going around saying I hate the month of December for about 7 years besides the holidays and my birthday: 10 years ago 2 days after Christmas I was diagnosed and hospitalized for an abscess much worse. I have finally gotten to this stage of acceptance only to be put back where I started. I guess I must be testing myself

 

[powerless]

So, I went home with a PICC line, but just before I left the hospital I started having a lot of stabbing pains where my appendix is. The doctor wanted me to come back in 10 days to get another CT scan anyway, so, she told me to wait until then to figure out what was going on. Sunday night I started having a lot of pain, vomiting, and chills... I went to the ER and found out that my appendix was inflamed and that it would need to come out. A surgeon came to talk to me and told me that normally that's what would happen. The only time that doesn't happen is in someone with Crohn's disease due to the high risk of complications such as fistulas developing in that area.

My doctor thinks it's time to just take out my Ileum since my body hasn't really responded to anything, so, now I am scheduled for surgery on Monday to get a bowel resection and appendectomy all at the same time. I am very nervous as I have never had surgery this extensive before. I just wanted to update everyone, though! I'm looking forward to the possibility of remission after all this is said and done, at least.

 

[tiloah]

I think when you have the surgery you are gonna be feeling a lot better. My surgery was for an abscess that wouldn't heal in the same area. When my appendix became inflamed I was in extreme pain every day and my life is so much better post op.

I hope you have the best possible outcome and start feeling better soon. Good luck.