Mental illness and steroids.

I have a long history of mental illness, carrying multiple diagnoses including bipolar, eating disorder, OCD, and PTSD. I have had my fair share of experiences with psychiatrist visits and even inpatient mental institutions. I am not ashamed of these facts. But the diagnoses I carry are hefty and cause extreme turmoil in my life.

I have spent many years in therapy, working through past traumas and the altered thinking I sustained because of those events. I had made incredible progress and was off my anti-anxiety medications and only required two mood stabilizers. I felt confident in myself and in my thought processes. I finally felt stable and that I had reached a place of “normalcy.”

Then three months ago my adrenal glands shut down and stopped producing the natural steroids your body makes to keep you functioning. This required me to start an oral steroid regiment twice daily.

It is heavily documented that corticosteroids cause mental health issues to develop or worsen. According to leading research, symptoms of hypomania, mania, depression, and psychosis can occur during corticosteroid therapy, as can cognitive changes, particularly deficits in verbal or declarative memory.

The full list of possible side effects that are related is daunting:

• Difficulty sleeping

• Increased appetite, weight gain

• Nervousness, restlessness

• Anxiety, depression

• Sudden mood swings

• Avoidance of social situations

And I am unlucky enough to be suffering from all of the above. I cry for no reason — just an intense and overwhelming need to cry multiple times a day. I can fluctuate from fine, to irritable and cranky, to completely sad within the hour. I am trying to find joy in my daily life and focus on the moments of happiness and clarity, but then this intense fog comes over me and I am left helpless.

The steady weight increase from steroid use has also been very stressful. I have a history of anorexia and bulimia, and while I have not acted on those urges in a long time, I still have the loud thoughts telling me I am a failure because of the weight. I try and exercise a little or eat healthy, but I am so fatigued and depressed that just getting out of bed is a true feat of strength; therefore working out or cooking meals is too daunting.

What is really upsetting is when I compare myself to where I was just a year ago realize I am broken now. This makes me sad. I’ve exhausted every effort to stop the disruptive thoughts. But the healthy coping strategies I developed over the years do not have the same effects they used to.

I have a terrific support system, including a loving husband and nurturing parents, not to mention a kick-ass psychiatrist/therapist who helps me immensely. BUT I NEED MORE HELP. And that’s where you come in! If you have experience with depression or mania due to corticosteroids and have advice I would love to hear it. Drop a comment on this post or contact me privately through my contact page. I am in need of support, guidance, and advice.

Sex with a chronic illness.

Lots of things change when you have a chronic illness; everyday activities like having sex with your partner may become overwhelming, difficult, or painful. With a chronic illness, sex often involves a complicated mix of feelings, emotions, and practical considerations. For some, the challenge of accepting a diagnosis can reduce sex. For others, sex is difficult because of the lowered self-esteem that comes with being sick. Some may have less energy or desire for sex. Merely the act of can be painful, too. Whatever the reason for the decrease, there can be physiological and psychological turmoil from it. Sex is not just for fun, but an important biological component that can be vital for comfort, pleasure, and intimacy. It is also hugely important in a relationship so when the future of their intimate lives becomes uncertain, both partners can feel that loss.

Things you can do to combat the issues include talking to your doctor regarding pain, erectile dysfunction, and other direct causes of your sexual function. Some medicines diminish sex drive or inhibit sexual function by causing changes in your nervous system. Drugs may also affect blood flow and hormones, which are two important factors in sexual response. Talking to your partner is also very important. Expressing what you need and your desires in a neutral setting often accomplishes a lot. Experts note that using sentences that begin with “I” instead of “you” are more effective – for example, stating “I feel loved and cared for when we have sex” will garner a better response than “you don’t have sex with me anymore.”

Communicating with your partner about what you feel and what you need is important, however, sometimes just talking can’t fix the underlying issues and problems need to be addressed from multiple angles. Before I had my ileostomy surgery me and my husband (Will) talked about how things would change for a time after the procedure. We maturely talked about, and agreed, that sex would be painful and potentially damaging for a while. What I didn’t plan for was that almost a year out from surgery it would still be such a challenge for us. With my adrenal failure and my continued rectal pain, sex can be damaging and has to be avoided regularly.

What’s frustrating is that most of the time I want to have sex. And many times I try to have sex. But Will stops my advances because he is worried it will be hazardous to my health. While he still finds me sexually attractive after my illness, he fears sex will be detrimental and therefore avoids it.

I spoke to him in length about our sex life and he said to me that what’s most frustrating to him is when he has to say no to me and I get disappointed. He pointed out that with my adrenal insufficiency and POTS he is concerned about my heart rate getting too high and causing issues. Of course consent from both parties is important, so I respect when he says no. However, it has led to self-esteem issues. I already feel worthless due to my pain leaving me physically scarred, under-employed, and unable to contribute at home as much. That, mixed with reduced physical intimacy, has led me to feel unattractive and undesirable.

My intention for writing this post is to help you, but also to help me and my husband with our issues. We are still seeking answers ourselves, so if you have any suggestions please comment or message me on the contact page.

In conclusion, there are definite things you can do to improve the situation, so don’t give up! The closeness you feel during lovemaking can help you feel stronger and better able to cope with your chronic pain.

  1. Communicate honestly about the problem.
  2. Reconnect emotionally by spending quality time together.
  3. Try masturbation and oral sex if penetration hurts.
  4. Utilize massages and touch.
  5. Talk to your doctor if problems persist.

My inpatient hospital guide.

As someone who spends a great deal of time in the hospital, I like to have certain items I always bring with me that make the trip easier. I thought I would share my list with you and ask you to comment with any suggestions of products you use!

Notebook for all health related information

Most important to me is my “healthcare notebook.” I carry this book with me daily so I can access the information at any time and so if there is an emergency others can know the medicines I am on and what doctors treat me. I organize it into different topic areas such as “doctors appointments”, “medical purchase receipts”, “vitals log”, “medication list”, “home health information”, and “questions to ask physician.” Anyone dealing with an illness could benefit from this sort of note-taking system. Doctors run on data, so having an accurate log of vitals, ostomy output amount, and other important symptoms is the easiest way for them to make appropriate decisions. I jot down any question that comes into my head throughout the day, ensuring the 5-10 minutes a day I spend with the physician are productive and I don’t forget what I wanted to say. I also write down their answers, because processing that information and retaining it can be difficult – especially if on sedating medication. This particular notebook was gifted to me by my mother in law. It reads “just a girl boss building her empire.” It makes me happy every time I look at it! So have fun with the cover and get whichever size feels most useful for you.

Deep V-neck shirts to access Portabella (my port.)

I always pack comfortable clothing that can access my port, which helps me avoid wearing a terrible/oversized gown during my stay. I actually leave a small duffle bag packed with a few v-neck shirts, coordinating pajama pants or sweatpants, fuzzy socks with grips on the bottom, comfy underwear, and a robe in my room just in case. It might seem excessive to have this packed prematurely, but it saves so much time when trying to get to an emergency room.

It is important you wear clothes in which the nurses can easily access your port and that doctors can evaluate your ostomy without interference. Because I am conscious about what the staff will need access to, I have never been told I have to use a gown instead! This is a big deal for me, because my OCD flares when I am inpatient. I can control so little about the situation, that being able to control my clothes is helpful. It also feels more relaxing and simulates the feeling of comfort I receive at home.

Purchased on Amazon (see hyperlink)

Next, when I am in the hospital I always want my heated blanket. I am unreasonably cold all the time due to my adrenal failure, so the freezing hospital rooms are very harsh. It also helps relieve some of my pain, by relaxing my muscles. The blanket helps bring a pop of color to the room and allows it to not feel so white-washed. The particular blanket I purchased is great because it doubles as a wearable cape. There is a large slit in the center of the fabric that allows you to drape it around your body. I highly recommend it!

Eye-mask and earplugs.

Sleep can be difficult to obtain during a hospital stay. With nurses interrupting it to get vitals and doctors coming in early in the morning, it can be challenging to get restful sleep. I help combat this with earplugs and an eye-mask. The eye-mask allows me to sleep during the day if nighttime rest was unsuccessful and the earplugs are useful all the time, especially with beeping monitors, loud patients, and overhead alerts.

For entertainment I bring a selection of books (this time a comic book), magazines, and playing cards. It can be lonely in a hospital room so having things to do by yourself is super important. I love to learn new Solitaire games. Did you know there was more than just one way to play? In fact, there is over 1,000 known variations!

Ways to entertain myself in the hospital.

I hope you never have a hospital stay, but if you do, these items can greatly improve your stay! Comment with what you bring that helps you the most!

Women in pain.

UAB ER (Current admission), 2019

Welcome to Chronically Juliann! I use this handle because I suffer from multiple chronic conditions, some of which interact and interfere with the others. Stress absolutely makes my adrenal failure worse, and therefore more dangerous. But bipolar disorder is stress inducing. As is colitis, which can flare without warning. Any one of these diseases can land me in the hospital, but when they work against each other it becomes clear that I will require a long hospitalization.

Current admission UAB, 2019

I am currently admitted to UAB for a myriad of symptoms and a cocktail of issues: Abdominal pain, check! Stomal swelling, check! Rectal bleeding, check! Low immune response, check! Tachycardia, check!

While I am grateful to be admitted and receiving IV fluids, pain medication, and frequent vitals checks, it is unbelievably stressful and aggravating to be here again. I feel like the doctors do not listen to me or take my opinion into consideration. I began to get scared and feel terribly bad for the patients that can’t advocate for themselves because they don’t have a medical background. Then I realized they may have an advantage, because when I speak medical jargon and specify names of sensitive tests, I truly believe the doctors think I google symptoms and webmd info to “get what I want.” When in actuality, I have worked in the medical field for 8 years and have suffered from chronic illness for almost 15 years. Therefore, my knowledge is from a lived experience and high level training.

Also, I watch the doctors (especially male doctors) take my husband’s opinion more seriously than my own. I can tell them about my pain and bleeding and they don’t seem to care, or come up with a plan to evaluate. But when Will mentions the same issues, suddenly new tests are ordered or consultations for different doctors are finally being placed.

I decided to look into this more and found some disturbing statistics. Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. For example, women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We women wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes. In regards to the issue of chronic pain, women account for 70% of the people diagnosed, and yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. The exact reason for this is still unknown, and more studies are warranted. However, as previously noted, research on female pain remains limited and therefore likely will not be completed.

Research indicates we are not listened to and feel our needs are subordinate to that of the “system” (which includes the insurance companies and hospital administrators.) It is increasingly apparent that hospital staff (nurses and doctors) are unable to be sufficiently patient focused because they are beholden more to shareholders and administrators than they are to their patients. This may not be a fault of the individual, but rather a systemic problem that is perpetuated by profit margins and lobbyists. However, it is the patient that suffers because of it.

While this all feels seriously discouraging, I am going to continue to advocate for myself. As stated in my previous blogs, I as a patient know more about my body than physicians. Today when my team of doctors come in to round, I am going to be firm in expressing my concerns and desires. I want to know where my bleeding is coming from. And I would like my pain better controlled. Not because I am hysterical, but because I am experiencing real pain.

DCH ER (previous admission), 2018

Success.

Work headshot, 2018

Today I scrolled through Instagram and saw friends and colleagues from college celebrating milestones at their job and posting about their successes. (All of them well-deserved of course!) I felt proud to be from the same program as these brilliant professionals, but then I felt a serious ping of jealousy because I want to be in their shoes. I want to be succeeding in the field I am so passionate about and advancing in my career. However, I had to exit my dream career almost a year ago to allow myself to heal. It wasn’t a decision I made lightly, or one I even really made for myself. My health was spinning out of control and I began missing weeks of work for hospital admissions. I lost my ability to manage both a high-stress job and high-stress medical issues. Even though I loved the work and felt satisfied in my position, I had to accept that my health was more important.

Work attire, 2018

I left my job mid-September 2018. It broke my heart. I felt like a failure for being unable to keep up with all the work assigned to me. Through therapy and self-reflection I accepted that it was not because of a lack of intellect or will power, but merely the byproduct of being nutritionally depleted and horrifically ill. My last weeks of work was concurrent with the worst colitis flare of my life – I was experiencing such severe and frequent diarrhea that I required the bathroom 8-12 times a day. I could eat 5 foods total, knowing any deviation from that strict diet would increase that first number to 15 or 20. I was losing all my nutrients through my GI tract, therefore lost normal brain function. It was hard to hold my head up because I was so weak and it was difficult to find the words I wanted because my brain was foggy. My disease at this point was debilitating. So exactly one month later, I had my colon removed (November 13, 2018.) I knew when I couldn’t do the thing I loved the most -working in community health care management and development – I had to make a change.

Office Management, 2018

I took a part-time position at the company my husband is employed at. They needed help in the mornings and that gave me the opportunity to rest, heal, and follow up with doctors after surgery in the afternoons. I started slow, only working 12 hours a week, and gradually grew to being there 20 hours. The work was interesting and I felt good about what I was accomplishing, but it wasn’t in the health field and I actively longed to be involved in medicine again.

Only problem was that I still was not strong enough to enter the field in the same capacity. So I went back to something I am skilled at, medical scribing. I was a medical scribe all through undergrad and continued during my masters degree. Scribing offers incredible access to working with physicians and I grew a lot during college in those positions. However, it’s not what I thought I would be doing, but it’s something I am good at. The company I chose to work for has great benefits, like working from home. That helps me when I am exhausted and sick, because I just have to move one room over and I am at work. But even this job, that I am well prepared for and trained in, is too much for me. I can barely handle the small hours I am scheduled for now.

I have been off work for over a month because of my recent hospitalizations. My company has been more than gracious in allowing me the time off, but I can’t shake the feeling that I am not even healthy enough for this job right now. That thought carries further and then I fear I will never be healthy enough to get back to the type of work I dream of doing. I look at job postings for jobs I would love to do and would be well qualified for, if it wasn’t for the fact I can’t stay healthy long enough to be out of the hospital each month. It truly is a depressing thought that everything I worked so hard for and studied so long for could remain out of reach because of my health.

Society has conditioned us to believe our worth as a person is directly tied to the work we do. I admit I think this way too sometimes. Especially about myself. I felt important and fulfilled because of the work I was doing for under-represented communities in healthcare. Now that I am barely working and may require disability, I have lost my sense of purpose. I feel deep sadness and despair thinking back to the life I could have right now if I wasn’t plagued with being sick. It makes me want to revolt against my body. Sometimes I think “if I push harder, I can accomplish more.” But honestly I am pushing myself damn hard just to have enough energy to get to my doctors appointments and do small tasks around the house. I am actively battling my body and my brain to feel better, but healing is a long, arduous process.

I am trying to shift my prospective as to what “success” is. I am playing with what it looks like for me. It cannot, and will not, be a high-powered job with multiple meetings and strategic development anymore… But it could be this blog post. It could be showering tomorrow. The stability of my marriage. The joy I find in cooking. The little things that I used to not have time to notice or enjoy. And it definitely will be continuing to fight for my health to return to a state of normality.

Success tonight… getting fluids and laying in bed writing this blog post, 2019

Ostomy Supplies: ordering and my daily bag.

Ordering ostomy supplies can be really overwhelming. There are so many different companies, styles, and products to chose from. Luckily most companies will send you free samples of their products for you to try – but putting in a real order can be stressful if you are not confident you’ve found the right products. I personally have changed what type of bag I use multiple times and ordered products I never used again because they didn’t work well with my skin, or some other issue. To help you have a better working knowledge of the products at your disposal, I thought I would share an in depth look at what I use. I am going to highlight both my stock orders and what I keep in my daily bag that travels everywhere with me.

As I previously mentioned companies want to work with you to help in the transition period after surgery (or any other time you have an issue, such as skin irritation or leaks.) I talk to my case manager at my supplier Edgepark regularly when I need an overnight sample. Convatec and Coloplast also have incredible support lines and have even shipped products to a vacation address when I ran low on a trip! Utilize these services and take advantage of the high quality, free samples they have.

When I first had my bag placed I was told to use flat wafers, but I suffered from miserable leaks for weeks! I suffered over a month of terrible skin irritation, pain, and embarrassing bag changes in public. It wasn’t until a Coloplast ostomy nurse talked to me about convex wafers that I found success. I then ordered a selection of samples from each of the top three companies (Convatec, Coloplast, and Hollister) in order to find my perfect pouch.

What do I order?

OSTOMY POUCHES

Which leads me to my first product review…. ostomy pouches! This is probably what I struggled with the most, and honestly still fool around with new bags when companies release new lines. Like I said before, I didn’t realize the source of my leaks was from wearing the wrong type of pouch. So let’s break down all the different kinds available.

Flat wafers are exactly as the sound, the whole mechanism that attaches to your skin is flat. Most ostomates do well with such wafers. The rule is that if your stoma sticks out from the skin 1″ or greater, a flat wafer will be just fine. The wafer and pouch are generally attached to each other, so we call this a “1-piece system.” There are endless amounts of different types to try. Each company has at least three different style options (and some have even more.) 1-piece systems require a stoma ring, which I will discuss further down.

Remember when I said most ostomates do ok with a flat wafer? Well, I am one of the interesting ostomates that does have a 1″ stoma tall stoma, but I also have a small opening at the base of my stoma that releases output. I am therefore in need of a more specialized wafer, called a “convex wafer.” As you can see in the photo, it has a sort of hump that helps with this problem. Ostomates with shorter stomas or prolapsed stomas often require convexity as well.

Coloplast SenSura Mio Convex 2-Piece and 1-Piece Pouching Systems

Convex bags come in two forms – 1-piece or 2-piece systems. I order both types and interchange them as needed. I will give you a perfect example of why you may need more than one option. As you can see in the photo, the 2-piece has a pre-cut hole that measures my standard stoma size (1″ in diameter) and the 1-piece system is a cut-to-fit, meaning I measure my stoma and it accommodates size variation. Right after surgery I had frequent fluctuation in the diameter of my stoma, but since then it has been uniform in size for months. I had all but thought to stop ordering cut-to-fit bags… but luckily I had a few left over because yesterday my stoma began swelling. I had to take off the bag I had on and replace it with a larger hole because the 1″ pre-cut hole was actually cutting into the stoma. So I learned a valuable lesson, that I am now sharing with you now, ALWAYS carry a cut-to-fit in case of emergencies.

Coloplast SenSura Mio Light Convex Cut-To-Fit 1-Piece System

The cut-to-fit bags I order are also translucent (or see-through), which means you can see the output and stoma very clearly. While this may sound “gross” or freak some people out, I have found it very useful whenever I am not feeling well, at a doctor appointment, or in the hospital. It allows myself, nurses, and physicians to get an accurate depiction of my health. I order opaque (or covered) 2-piece pouches and wear these when I am doing well and don’t want to observe my poop.

Coloplast SenSura Mio Convex Light 2-Piece System

A great function of the 2-piece system is that you can replace the bag without removing the wafer from your skin. This allows for longer wafer wear and less skin irritation. There are two ways a 2-piece system can attach. One, through a “click” method and other a “stick” method. I feel more comfortable and secure with the click, but it really is personal preference. Like most ostomy supplies!

Leakage cONTROL/SKIN PREP

Hollister Adapt CeraRing Slim

I quickly mentioned 1-piece systems need a stoma ring to help contain leaks. You can also use stoma paste instead of a ring, but I personally do not like it. I find the paste difficult to mold. (But as I will say again and again, it’s all trial and error when it comes to personal preference.) I have tried almost every ring available from the different companies and different widths within them. Overall I am the most impressed with the leakage control of the Hollister Adapt CeraRing. Some rings have latex in them which is dangerous for me, and actually causes my skin to burn away. Luckily this line does not and instead is infused with ceramide which feels very comfortable next to the skin. The slim design is my favorite because it allows the wafer to be close to the skin.

Cololplast Brava Elastic Barrier Strips

My holy grail of products I found is the Brava Elastic Barrier Strips. I use two each bag change to place around the edge of my wafer. It extends how large an area is covered and keeps the edges of the wafer secured to my skin. Since using these strips, in conjunction with the convex wafers, I have not had an uncontrollable leak. 20 come in a box, but since I use two with each bag change I order them fairly frequently.

Skin Tac Adhesive Barrier Wipes

To assist in the overall success of a bag sticking to my skin I use an adhesive barrier. I prefer to use a SkinTac wipe prior to attaching my wafer. I will warn that it is very good at its job and can make your fingers sticky if you put it on without gloves. But simply washing your hands will remove the residue. It can also burn if the skin is irritated or raw. Other barrier wipes and sprays claim to be “sting-free”, but I find those don’t usually assist in sticking as well. So I suffer through the few seconds of stinging, then place the wafer on and I am usually ok. I would avoid this if the skin is broken in anyway though.

Cololpast Brava Powder and Brava Adhesive Remover Wipes

Speaking of broken skin… every ostomate should have stoma powder. It is not something used with every bag change, but when you need it you will be very unhappy if you are out. Granted I have had my ostomy for 10 months and I am still on my first bottle. It takes a little to go a long way. The best advice I received on how to use the powder is to apply a fine layer on the broken stomal skin, dab with a wet cloth, and then two more layers, each time dabbing with a wet rag between layers. You create a sort of crust that should even out the damaged skin to the level of the healthy skin around it.

In the photo above you will see my chosen adhesive remover method. I love these wipes because they truly work! They take all the residue and built up gunk from around you bag attachment and are actually sting-free. I even use them to remove the adhesive build up after EKG tests, IV sites, or port covers. A single wipe does the job in most cases. Some ostomates use the sprays, but I prefer the little wipes.

What’s in my daily ostomy bag?

I carry an ostomy bag with the essentials for a bag change everywhere I go. While it is mostly made up of a sample of the previously discussed products, there are other necessities.

What’s in my carry along ostomy bag

I carry 4-5 ostomy pouching systems with me. Some 2-piece and at least two 1-piece cut-to-fit. I fit enough stoma rings to match how many bags I have. I never leave without a bottle of stoma powder, my different prep/removal wipes, and the extenders.

I find it important to also have things in case you are doing a bag change in public. A simple zip lock bag to hold the old pouch and disinfectant body wipes are a must! The brands aren’t important, just whichever form you use make sure it doesn’t irritate your skin.

Stoma guide, scissors, and permanent marker

In order to accurately measure your stoma, you will need a stoma size guide. My stoma nurse gave me one when I first had surgery, but I am sure you can order them through your supplier if you need a replacement. Simply place the guide around your stoma until you find the best fit. Then use a permanent marker to trace it out over your cut-to-fit bag. Lastly, use surgical scissors to carefully and smoothly cut out the hole.

Full contents of my bag packed neatly and tightly.

I hope this break-down has been useful to you. Remember, utilize samples before putting in a full order, there is use for different types of bags at different times, and trial and error is the best way to determine what works for your body!

Good luck and happy shopping.

The long journey home.

After 20 days in the hospital, I am finally home. I have mostly been sleeping, since sleep in a hospital is rare and interrupted. At least four times a night a nurse or patient care tech [PCT] comes in to give medicines or check vitals. Plus mid-morning (aka 3am) blood draws makes it impossible to sleep through the night. It feels counterintuitive to healing, since sleep and rest are so important to the body restoring itself. But I also understand the need for consistent, continuous data. It’s strange, but I actually have found myself waking up and needing breakfast at 6am, just like while I was hospitalized. I’ve fought my body to just keep laying there, with no success. I guess I developed a habit.

While in the hospital I had a slew of medications added to try and slow down the output from my ostomy. On my worst day I emptied my bag enough to amount to 9L! A normal ostomy should only put out 500mL-1L per day. A “high-output ostomy” as defined as anything greater than 1L… so 9L is very dangerous. My blood pressure was unstable every time I stood, at worst dropping to 77/40. It took continuous fluids to keep me hydrated. It took well over a week to have any improvement at all. After two things started to improve and I had closer to 4L of output daily. At discharge it was still over 3L, which would be out of control for most ostomates, but the doctors all believe this is my new “normal.”

Some of the daily medicines I am using to slow my output include Lomotil, Imodium, and Octreotide. They are all anti-movement agents in the GI tract. Octreotide is an injectable medication that has to be administered three times a day. While it is painful, and mildly frustrating, to receive it so often it has really helped in slowing my motility.

I also have home health now that administers fluids via a mediport. The port was placed on 7/23/19 and has been life changing! No more fruitless IV sticks, no peripheral blood draws, just accessing my port. It is painful when it is originally accessed (which has to be done weekly while receiving medicines) kind of like a swift kick to the chest. But once the needle is inserted there is no pain. And no limit to what can be given/how much blood can be taken. The fluid infusions do take quite a bit of time, requiring at least eight hours of stationary activity to complete. I require the infusions twice a week at this point, but as the output lessens I won’t need as much help.

I received my medical alert bracelet today and I really love it. It is delicate and dainty, but still provides all the necessary information. While I would prefer not to be suffering from a life threatening condition, it is great that there is some joy in the process. I love jewelry, so I searched for a long time to find the right manufacturer to complete my order. I ended up using CodeBlueJewelry on Etsy. They have an assortment of options and even the alert sign/font are customizable. I would recommend them to you if you are in need of a med alert bracelet.

I had my first follow up doctors appointment, with about six others scheduled in the next three weeks. It was with my colorectal surgeon who completed my ileostomy. We discussed options for my rectal pain and bleeding. Her recommendation was to remove the rectum when I am more stable/healed from this long hospital admission. She explained the scope of the surgery and the recovery process, plus the risks and ramifications, in great detail! So much so that I am hoping not to have the procedure and that the high doses of steroids I am on will heal the problem. This thought may be a long shot, however, since my last sigmoidoscopy showed inflammation despite medication. It makes me nervous to think about going into another surgery. The long recovery and high amount of pain are the main deterrents.

The appointment and travel took about four hours total. By the time I got home I was so exhausted I had to sleep immediately. I ended up sleeping for the same length of time as the appointment process! I am now still resting, although I was able to complete a load of dishes and switch the laundry. While that does not sound like a huge undertaking for a normal day, it was massive to me since I am still weak. I am grateful for this period of rest, but am frustrated by the length of time it will take to regain my strength.

Overall, I am improving. And I now have more tools to use to help in that process. But the journey will be long. With what feels like a marathon of a hospital stay behind me, I know it is only up from here.

Naming my medical devices improved recovery.

Diglett and Portabella Winfree

There are a multitude of changes that come with surgery, especially if a device is implanted or part of your body becomes exposed in a new way. I’ve had two such experiences, first with my stoma and then with placement of my mediport. On both occasions I spent a great deal of time researching the procedures and gaining knowledge related to their use after surgery. This process included reading all written information physicians gave to me, as well as combing Google for articles or blogs related. This phase of research was vital to acceptance of the changes for me. Multiple blogs I found from those in the ostomate community [ostomate = describes a person with an ostomy] spoke about naming their stoma.

Depiction of ileostomy stoma from Mayo Clinic

Before I get too far ahead of myself, a stoma is a small piece of intestine that is brought to the abdominal wall for stool (or “output” as its frequently called) to empty into an ostomy bag. It is done when someone has severe IBD or structural deficiencies in their digestive tract. Many people use the word “ostomy” when actually describing the “stoma.” I will try my best to be consistent and use the proper language throughout this blog. There are multiple types of ostomies; I have an ileostomy, which is high riding on the right side of my abdomen. (See photo.) Other types of ostomies include urostomy, for urine, and colostomy, to indicate opening in large intestine.

At first the concept seemed silly and unnecessary, since it already had a technical name (“stoma”.) But I mentioned the idea to my surgeon and she absolutely agreed. She explained in further detail that talking directly to the named stoma, like you would a baby in the womb, would connect you to it in a powerful way. Bonding to it, speaking to it, and nurturing it were all encouraged. I found that by naming it, the stoma took on a personality of its own. I yell at it directly if it is misbehaving, I laugh at it when it makes weird noises, and I refer to it in casual conversation without people getting grossed out by medical terms. It has been very liberating.

Diglett from Pokemon

My stoma is named “Diglett”, like the Pokemon (pictured.) My husband is the perfect level of nerdy and thought the stump of intestine looked a lot like this Pokemon from his childhood. I agreed! From then on we have lovingly referred to him as Diglett. His name being a little silly has actually prompted a lot of conversations about him that may not have happened without it. There are many people who shy away from discussing a topic if it is deemed “gross” or “too personal.” By having a funny, cute name it breakdowns the barrier of the stoma seeming too “medical” or “sterile.” When I look at my body and see my stoma, it feels more like a friend than an alien species. It made the stoma much easier to accept and live with. It truly has become a part of the family!

My first experience seeing Diglett

Recovering from a surgery as big as a colectomy is daunting. Directly after surgery I was only allowed to lift five pounds total. I quickly realized that nearly everything weighs that amount- even blankets! I also had a strict diet to follow that took time and planning to achieve. My skin was raw and painful from output and adjusting to ostomy bag adhesives. The hardest part of all was that I experienced body dysmorphia because my stomach had a foreign object on it that messed with my self-esteem. But because of the relationship I had developed with Diglett prior to the surgery, I was able to talk directly to it (and about it to others) until I felt better. As time went on I became more comfortable with Diglett and my confidence actually increased as a whole!

My mediport came seven months after Diglett, but we knew it was probably going to be placed for several weeks. This gave me more time to come to terms with the change my body would go through and to research the pros/cons of the device. It was apparent that the port was necessary due to frequent dehydration and hospitalizations. Again, my husband was the one to figure out the perfect name for it. He called it “Portabella” – ‘port’ to refer to the actual device and ‘bella’ to have a short nickname. I love it because Bella is actually an alternative word for beautiful, which I truly believe my mediport is. Its ability to give me the sustenance I so badly need is in fact a beautiful thing.

I have discussed this topic on other platforms, mainly Instagram, in the past and received great feedback from it. A dear friend shared this idea with her aunt and she was so inspired that she named her own mediport “Sadie!” She is now trying to convince her husband to name his knee replacement. My friend wrote to me that her aunt wished her physician would have given her this advice prior to her surgery. She shrewdly pointed out that this process could actually make aspects of major surgery fun, instead of all just scary.

Any device, from a prosthetic limb to a pace-maker, would benefit from a name. Take the time to get to know yours.

If you have a medical device that you’ve named, I’d love to learn the name and discuss if the name influenced your healing. Feel free to leave a comment or send an email to chronicallyjuliann@gmail.com.

Day 16 in the hospital.

As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.

On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.

First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)

So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!

As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.

The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.

Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.

Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)

In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.