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Crohn's Disease Forum » General IBD Discussion » Can Andy Attain an African Adventure? (Long Story)


07-06-2010, 10:43 PM   #1
Andy
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Andy's African Adventure vs Autoimmune Adversity

This is a story in progress.
Apologies if it comes out as an extended discourse, but I don't keep a journal, and I need to get EVERYTHING out right now.
I don't even care if anyone reads this post, to be honest. I am simply frustrated, broken down, and for the first time in a long time, pretty darn depressed.
Quite frankly, if you're looking for something positive, you probably shouldn't read this...


------------------------

Hi all,

My wife and I've been together for nearly 10 years, and have been married for over 3. I'm 29, and she's 28. We've pretty much grown up together.
She's currently pursuing a Masters' degree in Public Health and is in Kenya for 4 months (May-Aug) and will be there again from January-June 2011. This is an opportunity of a lifetime for her; she'll be kept busy doing all sorts of fieldwork and helping to run a number of studies that will eventually be published.
This opportunity came about pretty quickly. There was only about 7 weeks between the time that it was presented to her and when I dropped her off at the airport.
I knew that I would miss her terribly, but I also knew that it was something that she would regret if she didn't do it. What little choice did I have but to say, "Go for it!".


It's at this point in the story that I have to pause and say that sometimes I can be naive for someone almost three decades old.

You see, I've had CD for a LONG time -- since I was 11. It's been largely under control for a LONG time, too. Aside from being shuffled around to different meds, knowing to avoid certain foods, and more or less consistent (but predictable) D, I live a regular and semi-charmed kind of life.... until recently.
My naive little brain didn't process the fact that CD can be unpredictable and carries with it other factors that don't always bubble to the surface in everyday life. It's been the crux of my breakdown.

That is to say, two things happened, right around the same time.:
  • CD rears its ugly head.
  • Immunosuppression + Africa = Bad Idea.


CD rears its ugly head.
About a month ago, I started to get itchy in the anal region. I would notice it most often when I went to wipe. I also noticed an occasional few flecks of blood on the TP. I didn't think much of it. I was extra diligent to wash with warm water in the shower and made sure to pat softly when wiping. I even went so far as to get some "better" (softer, 3-ply) TP. I figured it would go away.

Then about a week later, I noticed and felt a small, whitish, irritated bump along my midline, about 2.5" from my anus. That was a little concerning. I thought I would monitor it, and see if it went away. It did, thankfully.

But things didn't get back to normal. I still felt 'off' and started having some weird aching pains that felt like they were deep inside my rectal area.

I was concerned that I had the beginnings of an abscess or fistula; something I've never had before. I called my GI specialist and left a message. The answering machine said that they would call me back within 48h. I called again 3 days later and left another message. Still, no call. So I called my family Dr. and made an appointment.

The family Dr saw me for about 10 minutes and gave me a quick rectal exam. He pressed on each of the four sides of my cavity and asked if any side felt more painful than the last. (Nope.) He said that everything seemed ok, and to call him if things didn't get better.

I waited a few more days and decided to give my GI specialist one last try. I got through to the receptionist who said that she tried to call me back at the number that she had on file. I almost reached through the phone to strangle her because both times she disregarded the number I left on the message, and instead tried to call my old home phone number!

I made an appointment -- next available -- for July 8.

Things have definitely gotten worse in the couple weeks that I've been waiting for the appointment. My bowel habits have changed, and there generally feels like there's pressure on my rectum, which is alleviated by sitting on my porcelain friend. I've been extremely lethargic for the past 3 days, even after 10-12h sleep, I find that I have very little energy for doing anything.

So, counting down to July 8 for diagnosis and treatment.


Immunosuppression + Africa = Bad Idea.
One of the considerations that I had when encouraging my wonderful wife to travel to Kenya was that I would visit her towards the end of her first four month tour, and then when she returned there in January for another six months, I would visit at least once more.

Obviously, I was letting my naivety get the better of me. After some research, I realized that people that are in an immunocompromised state should have some serious reservations for travel to sub-Saharan Africa for any length of time:
  • Immunocompromised individuals are more susceptible to opportunistic infection -- both bacterial and viral.
  • There's lots of vectors for opportunistic infection -- mosquito (mainly malaria and yellow fever), food/water (too many pathogens to list), human/human contact (TB, different cold/flu strains than in North America).
  • Immunocompromised individuals are not able to receive a Yellow Fever (or other live) vaccine. Yellow Fever is untreatable and can be a terrible and often fatal virus for those that are unvaccinated and/or have compromised immune systems.

I learned all of this right around the same time that I started dealing with my new, and as of yet undiagnosed, CD issue. It was like getting punched in the chest... twice. My heart sank.

I tried explaining my recent anxiety and frustrations to my wife. I'm just not sure she gets it. She's very much "living in the moment" and enjoying all these new experiences. She feels like I'm looking too far into the future.

I feel like I'm living in stasis until we can be together again, and that my future with her is what I'm really looking forward to. I feel like she's dismissing our continued relationship as something unimportant.


The final blow -- she may very well have an opportunity to complete a PhD program in the same location in Kenya; an additional 2 years.
I asked her point blank -- if she was given the opportunity, would she'd take it?

She says, "Yes."

I feel completely torn apart inside.
For once, I feel limited by my disease.


-- Andy

Last edited by Andy; 07-06-2010 at 10:56 PM.
07-07-2010, 05:25 PM   #2
ameslouise
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Hi Andy - I can feel your heart breaking as I read your story. You are selfless - being encouraging to your wife for this great opportunity, you didn't think about yourself for one second. This is admirable and very generous.

You've been together a long time - hopefully your marriage is strong enough to withstand a 7 month separation. Better to withstand the separation than risk your health travelling to a place that is not safe for the immunosuppressed.

Perhaps can you meet in the middle in a country that is safer for your condition?

Try not to stress too much about the 2 year PhD program - cross that bridge when and if you get to it.

Hang in there - I hope you start feeling better soon. Good luck with your appt tomorrow.

- Amy
07-07-2010, 05:41 PM   #3
MapleLeafGirl
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Andy, I really feel for you. I can't imagine being in this situation. I can offer nothing in terms of advice other than what Amy has already said. Keep us updated on everything and good luck with the appointment. We will be thinking of you.
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07-07-2010, 05:48 PM   #4
ThanksP
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Join Date: Mar 2010
Location: Costa Rica
that's a great idea about meeting somewhere closer. South Africa would be a great place to meet if feasible. Don't count yourself out yet. My husband spent two years in Afghanistan. Obviously I could not go see him in a combat zone, but I was able to fly and meet him in Kuwait on numerous occasions. It was a welcome break for him, for us, and it was an incredibly fun adventure. Those two years were a huge sacrifice for us, but we are closer than ever now. I went through some serious illness while he was away. But I relied on his love and strength to get me through it, even though he was 7000 miles away. YOu can do this. You can. Start thinking of places in that region you could meet her. Maybe it'll take your mind off the bad and give you something to look forward to.

Hang in there. You can do this.


Edited to ask... I know this sounds silly, but what is it that makes you immuno-compromised? Are you on meds that have lowered your immune system? I take Cimzia which lowers the immune system but my doctor has given me the okay to travel to India this December. It never hurts to ask the doc about it. Maybe he can work your meds around it too.
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Last edited by ThanksP; 07-07-2010 at 06:06 PM.
08-19-2010, 09:50 PM   #5
Andy
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Thanks all for the kind words.

I had my appointment in July. After both an MRI and ultrasound, I was diagnosed with a pair of high-rectal abscesses. Both are too small to drain, so I was taken off Humira and put on cipro/flagyl for 28 days, along with budesonide and imuran. It looks like the antibiotics haven't helped to heal the abscesses, so I'm now waiting for an consultation appointment with a GI surgeon. (*crossing fingers*)

As for the situation with my wife -- well, she's back in 2 weeks. While I'm happy to have her close, I'm still apprehensive about our future. I've decided that it's best to deal with the short-term for now, and take some solace in knowing that at least I will have some direction before she returns to Africa in January -- she has to apply for her PhD before then and should know how long she would be "on the ground" to do research for it. (By the way, I found out the program is actually 3-4y, not 2y)

In retrospect, I think the hardest part about the last few months has simply been the apprehension and anxiety caused by not knowing what the future holds, and the juxtaposition of her 'experience of a lifetime' while I am feeling pretty lousy and tormenting myself by brooding over the future. After a lot of reflection, I've started to come to terms with the ideals of love and the reality of loss, and I am beginning to feel like I can deal with whichever way that road forks.

It's taken a lot of effort and a lot of help from close family, friends (and even your kind words) to help shine some perspective on things, and while I know that I'm not quite over the hump, I do know that I have people looking out for me!


To answer your comments and suggestions --

@ameslouise/ThanksP: We discussed meeting in Europe instead of Kenya, but since she's a student and has only enough funding for her travel to Kenya and next semester's tuition, it just wasn't financially feasible. Instead, we may travel within Canada (Banff/Jasper) for 5-6 days -- neither of us has seen this part of the country before.

@ThanksP: Most drugs for CD are based on immunosuppression, including TNFα inhibitors like Humira and Cimzia. The degree of immunosuppression is definitely something that is open for debate, but the general consensus is that the therapies that are generally prescribed for CD put the patient at higher risk of infection or even activation of latent infection (which is why patients are always screened for TB before starting Humira/Cimzia/Remicade). My understanding is that although an immunocompromised person has antibodies for a lot of common viruses/bacteria simply due to exposure over a lifetime, when you consider that the pathogens that a person would encounter elsewhere (like Africa) are unlike anything your body has ever seen, the immune response may not be as strong or quick, which can lead to more serious illness, especially when the onset is quick and/or an attenuated live vaccine cannot be given (as is the case with Yellow Fever). Regardless, I will absolutely be discussing my medication and travel options (with both my specialist and a good travel doctor) as soon as I get my current health situation under control.

@ThanksP: Good luck in India! I've been to Bangalore (for about 2 weeks), though my experience was decidedly "westernized" (e.g. It was for work so had a driver, a 4-star hotel, per-diem account for meals, etc). Watch out for the vindaloo!

-Andy
08-19-2010, 11:54 PM   #6
DustyKat
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Oh wow Andy, it's great to hear that you are reaching a point where you are able to feel in control again, good on you and I hope the journey continues to a place that brings you peace and acceptance.


'cause you're doing a great job!

Dusty.
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