Trans, undiagnosed, but living well

Hi, my name is Asa, I'm living in the Bay Area, and I am a trans, nonbinary undiagnosed Crohnie(?). Super excited to see this group! I just joined the forum a couple weeks ago and haven't poked around yet. I currently think a lot about how chronically ill and disabled transgender people feel about their bodies, experiences, and the medical systems that have so often been inaccessible and uncomfortable. So to plug a project, I like writing about disability, gender, and intersectional thinking, which I'm slowly compiling here:
nonbinarythinking .tumblr. com

Anywho, here's "my story"

The pain and cramping started when I was ten. My mom, who was a doctor, would push her fingers into the pain in search of ovarian cysts, or tell me I had mittelschmertz (even though I was premenstrual). When I was twelve, in 7th grade health class, we were learning about flu and virus symptoms and I vividly remember my teacher using the phrase, "If you have diarrhea, something is wrong." This struck me, I didn't think that what I'd been chronically experiencing was something to worry about. It got worse in high school, I had diarrhea about every day, and the stress, discomfort, fatigue, and the way I felt about my gender and sexuality made me averse to eating and sleeping, and I was very underweight. I was deeply depressed and suicide was always on my mind. I didn't want to be open about anything to do with my body for the last twelve years.

In college I healed a bit, until my senior year when the symptoms became the most severe. I still get sudden cramping, sweating, and faintness, BMs after nearly every meal, and even when there's nothing to move. I can't stay out of the house very long, fatigue currently prevents me from working, and I'm facing a lot of shame from the fatigue, depression, and my gender presentation, but I am considerably more psychologically well than I was as a teenager. I am now 22 years old, 20 lbs heavier, done with my degree, and living a life I want to live. I'm an artist and model, I am going to get a dog sometime soon, and I have an unbelievably supportive partner. I've sought counseling and therapy, and though it's hard, I'm slowly coming out to myself and my family. I am still going undiagnosed for IBD until treatment is necessary, since for now I'm fairly comfortable.

Thank you for reading! I'm excited to see what this forum can do for me and how I can contribute

Hi Asa, so glad to have you join us! You are very brave for being true to who you are and can hold the badge of being a special minority since there probably aren't too many transgender people with IBD out there.

Are you currently on any medications for Crohn's? Are you also doing HRT and are doctors concerned about any interactons? There was another user here who posted about her trans daughter and the fear that IBD treatment might be complicated by transition: http://www.crohnsforum.com/showthread.php?t=22292

I can't imagine what it must be like to be disabled and transgender as I know trans friends who were refused treatment. It must be better in the Bay Area though no? Please don't feel shame about your gender presentation, you are beautiful the way you are and your partner reaffirms that. Who cares what anyone else thinks? As long as you stay true to yourself you are on the right track.

I think it's important for you to gain weight, especially since you feel fatigued. I'm a very skinny guy and have such severe fatigue I can barely move sometimes and it's probably in large part due to malnutrition.

It makes me happy to hear that you are feeling better now and have a supportive partner. Are you going to undergo any tests by a GI to be placed on maintenance therapy?

Thank you for welcoming me

What I'd like to treat most is the fatigue and depression. I was given Lexapro but it made me nauseous, so after about a year I stopped and felt much better. I am going to first work on my exercise/diet to see how much I can improve, since school is over for me now. The BM and pain symptoms have been very chronic and tiring, but mild enough to live with, and I'm unsure if I have Crohn's or something like severe IBS. I've never had blockage and only a few incidences when I might have seen bleeding. My sister has UC (she takes Asacol and sometimes prednisone) and she is honest that the diagnosis is tough and might only be useful in the midst of a flare up. This might be only true in UC, but I don't know anyone else with IBD (which is why I'm here!). I've seen a GI and he told me it was unlikely that he'd find anything with a colonoscopy. But if diet and exercise are less effective than I want (or if the fatigue prevents it) I will probably see the GI again in a few months.

I am not on HRT and I'm dealing with a lot of anxiety about medically transitioning. If I ever choose to go on Testosterone I will definitely share how it affects my symptoms or any medications, especially if other trans people join the forum or want to know how trans IBDers do it. I have a lot of trans friends who have disabilities and it is helpful to have people around to talk about similar things, but it's a sore subject sometimes.

I have very severe fatigue too, to the point where I can barely walk to get a drink sometimes. I don't have a social life or job now and I wish the doctors could figure out what's causing such weakness. I was on Prozac for anxiety and depression but switched to Lexapro recently. I hope that will help me. I'm sorry Lexapro made you feel sick but maybe you can try another drug like Celexa which is like Lexapro but maybe won't make you nauseous. There are a number of options out there and I'm sure you can find one that won't make you feel sick.

Why does the GI think a colonoscopy won't be helpful? There are also some imaging tests and blood tests that can be helpful in trying to find a diagnosis. Obviously something isn't right with your symptoms and if your sister has UC there is likely a genetic predisposition.

What is your anxiety about transition? Are you getting support from a medical professional? Is HRT something you hope to do?

From what I read about whether testosterone is safe while you have other medical conditions this is what I came across:

"Basically, almost any pre-existing medical problem could be affected one way or another by use of hormones. However, you should definitely not use male hormones if you have a history of liver or kidney disorders, heart disease, high blood pressure, some types of cancer, diabetes, or are smoking, pregnant, or still exploring. This is why you should consult a physician and have regular medical evaluations." Http://www.tgsf.org (Transgender San Francisco).

It sounds like GI disorders are not one of the potential issues but I know some IBD drugs may interact with hormones.

Also, I'm not sure if you are familiar or involved but it might be helpful to join your local LGBT community center, a trans meetup group or learn more at websites for FTM's like FTM International. Let me know if you want me to provide some links to some resources in your area. I'd also recommend you check out the Welcome & Resources listing at the top of the LGBT forum that lists many great resources.

When I went to the GI doc, my mother did the talking for me. My sister had just been diagnosed and my mom knew there was potential for me to have IBD, but she and the doctor paid me no mind. Her exact words were "I don't want to be a bad mom, so we just wanted to get her checked out." Saw the GI for ten minutes, and he said I had IBS and to come back when it gets worse (but isn't 10 years of chronic illness already bad?). We also had just switched to COBRA so premiums were probably a factor, too.
I've always been quiet and uncomfortable and afraid to look for help, and this particular example might be why I kind of see my needs as an afterthought.

A lot of my friends are transitioning and it's scary to see them become homeless, or jobless, or losing the people who they need to love or support them. While I don't think I'll lose everything, I am so dependent on my family and friends due to my health I can't risk losing whatever support I might need. But ironically, I'm afraid to tap into that support now! It's a big mess. I will be moving out of my parents house in a few days and maybe start at a trans-specific clinic in San Francisco soon and see what my options are. Hopefully they can treat the trans-me and the IBD-me as a whole.

What an inspiring story! So glad to see you are staying strong. It's nice to see people who can stay positive in light of some heavier topics of life. I'm very excited for you to get a dog, I know you will enjoy that. They are such pleasure to have in your life. Just a quick question (and sorry if this sounds misguided), how has living in the Bay Area affected the way you've lived your life? I'm curious to see how the Bay Area culture may or may not be pervasive in your every day experiences.

Jabocs said:

What an inspiring story! So glad to see you are staying strong. It's nice to see people who can stay positive in light of some heavier topics of life. I'm very excited for you to get a dog, I know you will enjoy that. They are such pleasure to have in your life. Just a quick question (and sorry if this sounds misguided), how has living in the Bay Area affected the way you've lived your life? I'm curious to see how the Bay Area culture may or may not be pervasive in your every day experiences.

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It's a fun place. Lots of colleges, young people and people I can relate to, artists, queer people. I am originally from a wealthy part of LA, which is sleepy, conservative, and full of bad memories. I think it's the move into independence that is really helping me. I can now breathe and take things at my own pace without fear of how people think of me. If I'm going to be weird everywhere I go, I'd rather be somewhere that weirdness is celebrated instead of hushed and laughed at.

Hi Asa! Welcome to the forum. I think once you are settled in your own place, it might be worth considering going to a GI of your choosing and talk to the GI about your history and current symptoms. Have you been checked for anemia, B12 deficiency, or vit d deficiency? Those are all very common in IBDers and can cause fatigue.

Hi Asa did you move into your new place and find a trans friendly clinic? They may be good for overall care but probably don't specialize in things like IBD. Can they refer you to an LGBT or LGBT friendly gastroenterologist to pursue what's going on? If your sister has crohn's and you have these symptoms there is a chance since there is thought to be a genetic component.

I haven't seen anyone where I live now. I am almost sure that though the clinics would try their hardest, they wouldn't find much that is specifically lgbt friendly or supportive to survivors of sexual assault. But I'll never know if I don't ask. I'm taking an unorthodox (and probably foolish) route and starting a corticosteroid without any testing or scopes. I've been in a lot of pain recently and needed to start some sort of treatment in order to eat regularly again (Generally I'm eating less than a meal a day). No GI, no insurance, and a bit of danger if I have an unchecked fistula/obstruction causing the pain...a doctor family member is helping me out so I doubt anything will go terribly wrong. I'll try to get into one of the clinics I know.

I applaud your courage and strength! I will keep you in my thoughts, try drinking boost, it taste better than ensure and make sure it is nice and cold as it taste much better! It helped me gain some weight back and give me a bit more strength! All the best to you, please keep us posted. Stay strong!!!!! And be true to you~

Michele