Spondylitis Association of America
Posted By: Grace1234 Confused - 08/13/12 06:13 PM
Hey everyone.

Don,t really know how to go about this I do not have Ankylosing Spondylitis my bf does we have been together 3 years and living together for one year. For the first two years (AS) was never a problem yes he got stiff and sore and stuff but it never stopped him doing anything.

But this last year his health has been rapidly declining. And it's quite scary. He has started these injections called humaria or something which he told me this could affect his fertility and that we may not be able to have children and this children thing is a massive deal to me but he just shrugs as if whatever. I don't care. He will not talk to me about anything. Will not explain any of this to me at all.

The humira made him vomit a lot and blood coming out of his bum and stuff. He was hospitalised 3 times because of this issue in the space of 2 weeks constantly being In and out of AE . They stopped the humaria for a while there which made him slightly better just a lot more in pain even though he was In pain on the humira anyway. I don,t quite understand why he wants to go back on it not only that he now has suspected pericarditis. Which he tells me he was hospitalised with that before we meet and that it comes with the disease. We are lying in bed at night and I can literally feel his heart thump out of his chest so that's more visits to A&E. The docters just say there is nothing that the can really do for him that he has to just learn to live with it. That really pisses me off. And he like I said won,t talk to me about it.

Also this year he had a absecess he had to get removed on his bum . Which was painful and more surgery. He's constantly complaing that the humaria is making him sweat a extreme amounts. And also we do not have sex anymore we haven't in near 8 months and we finally did last week and im constantly trying so much. And dont,t no how much rejection i can take yes I no he has a lot going on and I no I don't understand the pain he's in or anything thats going on but this affects me to not just him. What's a relationship without intimacy I do not just mean sex I mean cuddling hugging wanting to be with one another even high five. When I talk to him he just says theres no point because I could never understand and that it's him that's sick not me.

For the life of me this man is going to be my husband surely this means his burden is my burden and I think I have been pretty patient with this whole thing. But according to him me talking to him about it is causeing me to stress him out which is causing his health to decline to I really don't no what to do I need help to no how to support him with this or how to understand because I really am losing it mentally
Posted By: iviary Re: Confused - 08/14/12 02:52 AM
The gastrointestinal side effects you describe have only occurred in less than 5% of Humira patients in studies. In all honesty, I had never heard of vomiting and bloody stools as a Humira side effect until I researched it to form my response. Are they sure that Humira was the cause, and not another autoimmune condition like Crohn's disease, which often occurs alongside spondylitis?

I'm not aware of any research supporting his statement that Humira can effect fertility. It certainly isn't a listed side effect or in the prescribing information anywhere that I can find. If he's taking Methotrexate along with the Humira (many patients do), that could be what he was talking about. Here's some more information about what they do and do not know about the effect of Methotrexate on male fertility (circa 2003; others may chime in with more recent information presuming he is indeed on methotrexate): http://www.motherisk.org/prof/updatesDetail.jsp?content_id=663 If he is on Methotrexate, it can also cause some of the gastrointestinal symptoms he is experiencing.

Sulfasalazine is another arthritis medication that can cause male infertility. Lyrica (pregabalin) is used to treat fibromyalgia and pain, and can also cause male fertility problems.

If he is indeed having so many side effects from Humira, there are other medications in the same class to try. I'm not sure what all he has access to wherever you are (I gather you're not in the USA by your use of the term A&E), but it's unlikely he'll experience the exact same side effects from another medicine like Enbrel, Simponi, or Remicade.

Not to be too callous, but as a woman who wants to have children someday, I've also made the decision to take several medications over the last few years that may decrease my fertility. I never really consulted with my husband about the decision either, but he supported me when I told him about the fertility side effects. Given my pain and the damage my inflammation can and will do to my body, it's a decision that makes sense for me (and for us). To be quite honest, your boyfriend may not care at this point, and while that isn't terribly sensitive to your feelings (and he absolutely needs to communicate with you about it), I don't really blame him. One mildly good thing is that the problem of male infertility is in many ways "solved" more easily than that of female infertility, in that using sperm donors is typically less expensive and far less complicated than options like in vitro fertilization or surrogacy. Sure, you may prefer to have a child that is 100% genetically the product of you and your significant other, and I don't know that he feels this way, but he wouldn't be alone if he has some misgivings about potentially passing AS along to his future kids.

It does sound like he is having some communication problems. There are definitely aspects of his health that you two *need* to communicate about. You're right that the burden of someone with AS is very much also the burden of the person who shares their life with them. Maybe some sort of couples therapy is in in order? He might benefit from therapy on his own too. Depression is unfortunately very, very common with chronic diseases and chronic pain.
Posted By: Grace1234 Re: Confused - 08/14/12 12:19 PM
What are the chances it can be passed on to our kids. I thought it was very rare and skipped generations as his parents and siblings and grand parents do not have this. Also would be able to describe me how the pain feels if that makes any sense i have heard people compare the pain to labour is this true. I don,t really no what else he is taking I no he's taken tramdol which he is loving at the moment as his old fav was omaperazole.

he is taking some diazepan which he rarely takes. He has so many it's hard to keep track. Yes I am not from the USA I'm Irish and we don't do that whole thearpy thing it's quit taboo here that only people with mental conditions and stuff go to. I did raise the issue of therapy before and he just laughed in my face but he is a typical man that ignores problems like they do not exist

And your right I do not no if I could bare seeing my children be in pain or like him in any way. I guess I was just spoilt in the first two years that he's condition never affected anything and now I'm dealing with the hard stuff and the mood swings that come with the pain. I have suggested he try sum thing other than Humira but he says he can,t be bothered going through all that fuss again. I really don't no what to do to help him. He obviously does nt want my help the pericarditis is the thing worrying me most at the moment.

There is so much to discuss its where to start and to get him to take me seriously and the docter defiantly said that the bloody stools where Humira because he got the cameras to look inside his intestines and stuff no ulcers nothing they said it was perfect and that's why he kept getting discharged.
Posted By: iviary Re: Confused - 08/15/12 05:23 AM
Well, the blood has to be coming from somewhere, whether it's Humira or another medication or disease causing the bleeding. Just because they didn't see the source of blood on a colonoscopy doesn't mean there isn't one. In fact, I'm pretty sure there has to be one. You don't just spontaneously start leaking blood into your GI tract. This may be more detail than he's shared with you, or than you care to discuss, but do you know what color blood it was? Generally speaking, the more black it is, the further up the GI tract it originated, and the brighter red, the closer to the anus. Most of the small intestine cannot be viewed with traditional endoscopies, whether upper (via the esophagus) or lower (colonscopy). Did he have a capsule endoscopy (also known as a "pill camera") performed? That's pretty well the only way to view the small intestine from inside. Small Bowel Follow-Throughs are also useful to some degree, but don't show nearly as much detail, as it's imaging from outside the body.

The chances are not extremely high (but not miniscule either) that a child will inherit it, and low enough that I'm willing to take that gamble. My grandmother is the closest known relative with an inflammatory arthritis. She had 5 children, 9 grandchildren, and 14 great-grandchildren, and so far, I'm the only one diagnosed with it. Several cousins and both of my uncles have psoriasis which is closely linked genetically, so I expect the arthritis will pop up somewhere else eventually, but it's not as if we all have it. As I see it, I'm still thrilled to be alive despite losing the genetic lottery, so I won't assume that a child would be better off not being born just because they might inherit my diseases. And if having a child in the normal way isn't in the cards for us or we decide against it down the road, my husband and I are both very open to adoption, and my sister has also already generously offered to be a surrogate for us if I'm unable or if pregnancy would be too difficult on my already strained body.

As for what it feels like, I can't compare it to labor as I've never been in labor, but yes, I've heard other women compare it to back labor. It's individual for all of us, dependent on the severity of our disease, how much it's currently flaring, and exactly how it effects us individually, but I guess I can speak for myself. I don't actually have Ankylosing Spondylitis, but I do have the Spondylitis presentation of a related disease, Psoriatic Arthritis (they're treated with almost all of the same medications, and short of me being less likely to experience joint fusion, there are not all that many differences between the two diseases). For me, there are days where the severity of my pain leaves me unable to function, but right now, those are thankfully not the norm. Even though I am able to go to work most days and generally present myself as an average person who doesn't "look sick", and despite the slew of medications I'm on, I am still in pain to some degree every moment of every day, and have been for about the last 3 years.

That never-ending pain wears on a person in a way that someone who hasn't experienced it really cannot understand. It doesn't make you a bad person that you can't and don't understand, but it's just the reality of it. I'm trying to think of a good analogy to describe what it's like. I guess think of the pain when you stub a toe or jam a finger. It's not the end of the world, but it hurts, and it's very distracting from whatever you're trying to do at the time. Now imagine that that pain is always there, and as far as you know, will never go away. And imagine it's always in your spine, making sitting, standing, laying, and yes, sex, all inherently painful. That pain is always there distracting you from your work, your social interactions, your sexual desires, your sleep, and everything else you do and think on a daily basis. And sometimes that pain is much, much worse, making all of those activities not only difficult, but impossible. And because you don't look like there's anything wrong with you, you feel social pressure to pretend there isn't, or be taken for a hypochondriac. In short, it's hard, both psychologically and physically.

Here's another explanation that gets used a lot around the chronic disease circles on the internet. Some of it doesn't pertain directly to what it's like to have spondylitis, but a whole lot of it does. It's a good introduction to what having a chronic disease (particularly one where pain and fatigue are involved) is like. The Spoon Theory: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Posted By: Grace1234 Re: Confused - 08/15/12 03:59 PM
That spoon theory was good. Helped a little so did your stubbed toe seriously is that stingy pain what him yourself and everyone go through daily. I can kinda of understand why he shouts at me sometimes and why he needs his alone time. I could never imagine living every day with that stingy pain

We kind of spook about things last night. He explained the reason he does not like talking to me about this is because it depresses him and the questions I have he's not ready to answer and apparently his mom is annoying him every day with questions about his pain. I don't like saying disease. I know pretending nothing is wrong is bad but maybe that's just what he needs at the moment.

I would not be surprised if he is keeping the servarity of what is going on with him at the moment from me. And I know your gi system does not bleed for no reason I said this to him as well. But the docters here just seem to be crap and no use at all. I really could not believe when we where there for pains in his chest and the docter telling him he had arthuritis and he had to learn to manage the pain. That was so rude. Epically because he had the pericartious. Thank you for taking the time to speak to me about this

As for the camera the used the pill one up his bottom to look around second time hospitalised they went the throat root down to cancel the upper part that they missed out on the first time round.
Posted By: sharpthings Re: Confused - 08/23/12 01:41 AM
I bet you feel like my husband does. I have recently been dx with AS and a year ago fibro. He feels helpless and I know its not his fault but I am in so much pain I get snappy with him for no reason, then I feel horrible about it. I almsot feel lime I shouldn't tell him too much because he truely wants to help and has no clue how. So we talked a few weeks ago and I told him that just having him sit with me and watch Tv or lay in his lap helps me feel close to him even though its difficult sometimes because of the pain I tryto put my best face forward. On bad days I justhave to tell him... "today is really bad I'm sorry if I'm snappy or don't show affection today... I just want u to know" he seems to be able to handle it better if I offer how I feel. Men maybe have a harder time doing this and as a woman I know u want to do anything u can for him. He may be depressed because of what his body is doing to him. I know I am. A supportive partner is very helpful and it sounds lime u are trying ur hardest. Just hold on to the hope that his Dr will find something that helps him. Good luck.
Posted By: luckypony Re: Confused - 10/05/13 11:05 PM
I am getting married to a wonderful man next month, but these past few months have not been very fun for both of us.

I suspect that I'm a lot like your bf. I am the one who doesn't want to talk about things and try to hide everything from everyone. My fiancÚ tries so hard to help me out, but it's just not natural for me to share everything. He really does do everything he can, but I'm just really hard to deal with sometimes!

We've worked it out so that I'll tell him every time I see him how I'm feeling. That way he knows what to expect. Like I'll say "My hips are really hurting today and I feel really nauseous so I'm just going to hang out on the couch tonight." Then he knows not to push me to hard to cuddle or be intimate because I'm too miserable.

He too felt like he was being rejected all of the time because I just felt so horrible. It was really hard on him. We went to my counselor together and she said the best thing for the two of us right now is to stay in communication.

I would really recommend going to see a counselor who specializes in people with chronic illness/pain. They at least know how hard it is for the partner with the disease.

I will tell you, that even though I'm with my fiancÚ all of the time, I still feel very alone sometimes. Just because even though he tries to understand how I'm feeling, he will never really be able to.
Posted By: avonldy Re: Confused - 10/10/13 11:15 PM
When you mentioned that he had abscesses pretty well described Crohns disease. That and the bloody stools are symptoms of Crohns. It goes along with AS. Many people with AS have another disease like Crohns or UC also.

I know its hard to see him hurting and not talk about it. We women like to talk about all our problems while men tend to keep things bottled up. Be patient, be there for him when he wants to talk and do try to see that he has the best doctors available.

Try to learn all you can about what he is going through, knowledge is a powerful tool.
Posted By: ASin9pain Re: Confused - 05/22/20 05:01 PM
Replying to really old thread, but figured since I was reading through it now, maybe someone else was too. In regards to the question about comparing AS pain to labor - I was just thinking about that this morning, so figured I'd share my thoughts.

I birthed two babies. Granted, they were both right around 6 lbs, but I'm little too. First one was over 30 hours of labor. The only medication I used was a dose of Nubain (a narcotic pain reliever that took the edge off and let me sleep for about half an hour mid-way through, but was completely worn off before time to push) and self-hypnosis.

Second birth was no pain reliever at all, only about 9 hours between water breaking and delivery which they were trying to stop because she was early.

I would prefer to get stung by wasps *while* giving birth naturally than experience some of the flares I've had.

Birthing is easier because generally:
- you know what to expect and what causes it
- you have doctors who can tell what is happening to you
- you have people waiting on you
- you have pain relief options that will probably work
- you can curse at, or be short with, anyone in the room and it's forgiven
- you are not expected to continue working, doing laundry, etc during contractions or while pushing
- you generally get short breaks between contractions
- you know it WILL end eventually
- you get these amazing endorphins afterward
- you're not terrified that you're: alone/dying of a heart attack/giving this disease to your children/going crazy/never going to be able to walk again/ . . .
- when it's over people will bring you gifts and help you around the house and you get to take time off work
- you also know that you won't go through it again for at least another 9 months :-)
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