The Things that Keep Us Going

It’s only been a few weeks after my ileostomy reversal and things have, mostly, been rough. I’m back at the hospital with ileas, a condition where your bowels stop working or “go to sleep”.

People keep telling me that I’m strong and amazing for enduring so much and keeping such a positive outlook but I think that the people who tell me this, though I appreciate their encouragement and acknowledgement, don’t understand quite how this kind of pain can truly paralyze you as they never really get to see it.

I smile daily because God has placed people in my life who are kind and gracious enough to absorb a large chunk of my pain and fear. I’m never alone. If my mother isn’t by my side holding my hand, looking at me through the most loving eyes, then my husband is by my side, petting my head telling me stories that will inevitably cheer me up. These two people are always around, always. But, my support system doesn’t end there; I have an older brother who treats my disease like another kink in the system that we need to fight against. He always makes me feel young again, and he’s 7 years older than me. My father always reminds me that I belong to someone; he doesn’t quite understand what I think about my disease and trial and I often think that my entire mindset eludes him, but he never hesitates to remind me that “everything is going to be ok” even when I don’t need to hear it, and subsequently he is unintentionally telling me that I will always have people who love me so much that they will fight to make this ok.

The hardest thing about this moment is the memory of good health after my first surgery. The most tempting thing to think right now is that this was all a mistake and I never should have embarked on this stupid trip to abdominal perfection; I was content with a permanent ostomy.
But, my family constantly reminds me that we are a team and we are stronger than UC can ever be.

I love my team; they keep me going. And, I got lucky because this isn’t just any team, they’re a winning team.

Almost a Year

I didn’t write much after I had my sub-total colectomy; life kind of just started happening and I didn’t want to miss a beat. Now, here we are, almost a year later and I’ve completed all 3 steps of my J-Pouch creation. On February 11th, I had my ileostomy reversal, or “takedown”, and am now readjusting to a stoma-less life. Looking back, I wish I took more opportunities to document the experience, but I intend to make up for that. This blog means a lot to me, it has as early as its conception; unfortunately, I haven’t had many moments where time and strength were simultaneously available to me. I look forward to the coming months, as I recover to take the time to invest in this blog and my fellow IBD community. It’s hard to believe how far I’ve come and how much my family and I have endured, but when it settles in, it’s hard to be anything but immensely grateful. I know that there were many angels along my path who guided me and if I can be a beacon or encouragement to a small few, that would please me greatly.

Thanks for reading!

Thoughts on Chronic Illness & Those Who Share it With You

A few days ago I took this blog down. A remark made by someone close to me made me start doubting the entire reason I started this blog. I never intended for this blog to be a place where I vent my frustrations; for that, I have a journal, family and friends. Airing my personal troubles on the internet is not something that I am fond of doing. My hopes for this blog was to create an area where those who are afflicted with IBD can come to learn about the experiences others have while sharing their own.

It took a lot of thinking to figure out whether I’ll bring the blog back up (and I’m still not entirely positive in my decision) and a big part of this made me realize how this disease has impacted some of my most important relationships.

I read an article once in which a chronically ill person compared having a chronic disease to having a gorilla follow you around everywhere. It might sound silly to those who aren’t familiar with chronic illness but it’s painfully accurate. Read about it here: “The Gorilla In Your House”.

Chronic Illness becomes a part of everything you do. You simply don’t have the option to turn it off. It changes the way you relate to the world and the people in it. It often requires more attention than you have to offer. Chronic disease is demanding and it likes to get its grubby hands on all that matters to you.

Understanding chronic illness is not something that everyone is good at. It often is truly debilitating and this is a fact that is very difficult for some people to accept. Especially, if you have an invisible illness (like I do) then most people don’t even believe you when you tell them just how sick you are. Once in a while, we are blessed with a person in our lives who expects nothing from us and whose love for us just grows stronger when we are in need. These kinds of people will never make you feel like a failure for having a disease that has severely limited you. These kinds of people are the kinds that help you make it through.

Sadly, not everyone has the capacity to love in this manner and most people will take notice of each time you’ve failed them because of your disease. Once you have a chronic illness you become much less able and, in most relationships, this will breed resentment. Sometimes, it just looks like you’re no longer interested in anything but yourself and have found an excuse that you can permanently stick to. Those who truly suffer from any kind of chronic illness know that this is not the case. But there is no way to convince someone who doesn’t understand how illness can affect you that you aren’t being selfish, that you’re just being sick.

Having a chronic disease will be difficult on your relationships, but it will also be revealing. Enough time being ill and you’ll know who is self-interested, who truly loves you, who is patient, who is kind, etc. It will shine a bright light on all those around you, yourself included. Many relationships won’t survive a chronic disease, but the ones that do are worth cherishing forever.

The best advice I can give is to not allow your chronic illness to turn you into someone you don’t like. You might not be able to work as many hours, or cook and clean, or go out and be fun anymore. But, you still have it in your full control to be kind, patient and loving (even if those around you aren’t). Your attitude can lighten both your burden and the burden of those caring for you.

I’ve learned to stop fighting against my gorilla. I just made a room for him in my home and decided that I will not allow him to make me angry and bitter. If I can learn to deal with my gorilla, I hope that those around me can as well.

How To Change Your Ostomy Pouch System

It takes a while to develop a system that works for you. If you’ve been reading my other blogs then you’ve heard me say this a handful of times. I’ve found some things that work very well for me; my skin is perfectly in tact and I have only had one small leak (in the beginning of it all). Below is a brief, or at least I’m aiming for brief, guideline on how I change my 2-piece pouch system in case you are in need of some suggestions. For the record, my method is a combination of a few methods I’ve found online, shared by fellow ostomites.

I’d love to hear from others what their methods are.

  • Prior to starting, you should prepare all of your tools.
    • Gather all of your pouch equipment
    • Prepare your wafer by cutting the appropriately sized hole in the flange.
    • To catch any unaccepted leaks from the pouch, wafer or stoma itself, I like to tuck a paper towel into my pants immediately near my pouch system prior to removing anything.
  • Use an adhesive wipe (or whatever adhesive remover you prefer) to slowly take off your wafer. Once your wafer is in a disposable garbage bag, use the adhesive wipe to remove any remnants of adhesive material. For me, this usually involves gently rubbing off some small left over speckles of barrier ring near my stoma.
  • I prefer to shower immediately after removing my pouch system. If this sounds appealing to you, it is best to avoid eating a few hours prior to in order to avoid output while showering. If you do decide to shower with your pouch system off (though keeping your pouch on is a perfectly viable option), it is best to avoid using harsh soaps or fragrant soaps. These soaps have a way of irritating the skin. They also leave a layer of oil on your peristomal skin that makes it difficult for the adhesives to stick. Once done with your shower, be sure to gently but thoroughly dry your skin before continuing.
  • If you are not showering in between pouch system changes then you will need to clean the skin around your stoma before continuing. Often, a baby wipe or moist paper towel is enough. I use unscented baby wipes for all of my ostomy cleaning. Some people prefer towelettes.
  • Clean all of the fecal matter from your stoma and the skin around it. Be gentle; your stoma has no nerve endings so you won’t know if you’re hurting it. It’s also lined with small blood vessels that pop quite easily. It isn’t a big deal if it happens, but it is something to be conscientious of.
  • Once clean, I like to wrap a paper towel around my stoma, creating a type of tent. This prevents any of the powders that are about to be applied from sticking to it and also helps catch any unexpected output and prevent it from touching your freshly prepped skin
  • If you have a yeast infection on your peristomal skin, clean that are with mild soap then lightly dab a white vinegar soaked towelette on the affected areas of your skin. Once dry, apply a moderate amount of Nystatin powder (this should be prescribed by a doctor)
  • Apply a stoma powder (I prefer “Stomahesive”) on the skin around your stoma. If you are also using Nystatin powder, don’t worry about mixing the two. Tap the excess off. Use a barrier film wipe (or barrier spray, is that’s what you prefer) directly on top of the stoma powder. Let it dry. I repeat this process twice to build up a thicker layer so that my skin doesn’t come into contact with any adhesives.
  • Stretch your barrier ring to the approximate size of your stoma. Cut the ring so that it is no longer connected, allowing you to wrap, or loop, the barrier ring around your stoma directly. I prefer this method because it allows me to shape the barrier ring precisely to the shape of my stoma. It also insures that there is absolutely no gaps in between the ring and my stoma
    • If you are having an issue with getting your barrier ring to stick to your skin well, briefly use a hair dryer on the warm, not hot, setting to melt your barrier ring.
  • Carefully apply your wafer around your stoma. Once you’ve removed all of the adhesive backing and it is securely attached to your abdomen, rub your finger over the flange (underneath which lies the barrier ring) so that they can fuse together.
  • Now, snap your bag onto your wafer. At this point, I like to cup my hands over the area of my stoma and lightly press down so that the warmth from my hands can help make sure everything sticks….and you’re set!

Swag on with your bag on!C360_2015-05-27-13-59-08-861

So, You’re About to Get an Ostomy…

If you’ve reached the time in your disease where an ostomy becomes necessary, then this blog is for you. Before my surgery, I did a lot of research and questioned many fellow ostomites about their experiences so that I would be prepared. This made the difference. In an effort to help those who are about to embark on this road, I’m going to tell you about everything I learned, before and after. Please note that, because I have an ileostomy, most of the information here will pertain to that kind of ostomy only.

Types of Ostomies:

There are many kinds of ostomies. Your surgeon will explain which kind you will be getting and how many surgeries are involved. Some ostomies are permanent, others are temporary and require 2 or 3 surgeries to reverse. Here’s a list of different kinds of options that you might fit into.

  • Ileostomy: this ostomy is created from the end of your small-intestine. This kind of ostomy is most commonly created after a colectomy (the removal of your large-intestine, or colon). It usually has a liquid and acidic output.
    • End-ileostomy: If you are receiving a permanent ileostomy, then this is the kind you’ll be getting. It is an ostomy whose stoma is created from the distal part of your small intestine.
    • Loop-ileostomy: A loop ileostomy is the kind of ostomy you will receive if you are having a j-pouch created. If your surgery requires 2 steps then this is the kind of ostomy you will have after your 1st surgery. If you are having a 3-step procedure then this is the kind of ostomy you will have after your 2nd surgery. This ostomy has a stoma that uses a more central part of your small intestine. The image below shows the differences between both stomas.

End Vs. Loop Ostomy

  • Colostomy: this ostomy is created from one of a few possible areas of your large-intestine. This kind of ostomy is created when a section of your colon is removed, leaving part of your colon intact. With a colostomy you can expect more formed output that is less acidic as some of the bile gets a chance to be processed through the part of the colon that still exists. The location of your stoma is determined by the area of your colon that was removed. Which ever part of your color remains dictates the location of your ostomy. The picture below shows the different kinds of colostomies you could receive

Colostomy

What to Expect After Surgery:

Everyone is different. This was the hardest thing for me to learn. My experience was unlike anyone else’s and your experience will also differ, at least slightly, from those you know. But, a few things are common and it’s good to know them before hand so that you can be prepared for them.

  • Surgery will hurt. You will wake up and you will be in pain. This is COMPLETELY normal. You were just cut into and had an organ removed. Your pain level will be determined by your tolerance and what kind of pain regimen you are on.
  • Most commonly, you will be but on a PCA (patient controlled analgesic) pump. This will allow you to administer a small amount of opiate medication into your bloodstream by the press of a small button. This machine is designed to only allow a certain amount of doses an hour. While the dose is not as large as if a nurse were to give an IV push of pain medication, it does allow for more frequent doses so that you can better control your pain. It’s a great thing really. You will be kept on this until you are able to take things orally. At that point you will be switched to oral medication. Please be open and honest with your doctors. If your medication is not doing enough for you pain, speak up! Pain management, post-surgery, is an important part of healing and your doctors will adjust your dose until it is helpful.
    • If you are a chronic pain patient, as I was, you will likely receive different treatment than this. You should discuss pain management with your surgeon and anesthesiologist before surgery. The regimen I was on kept me primarily pain free, as long as I didn’t move, for 2 days. Once they started tapering me from my medication I started feeling more pain but I was able to avoid the immediate pain most feel immediately upon waking.
  • You will not be permitted to take anything orally, even water, until you ostomy starts to have some kind of output. This takes a few days. Once your bowels start working again, you stoma will alert you with sounds and output. At this point, you can expect to be switched to oral medication. Your diet, at first, will be liquid and you will work your way up to solid food. Respect this process. Rushing it can make your recovery harder than it needs to be.
  • Walk as much as possible. If permitted, walk on the first day after surgery. Either way, as soon as you are medically allowed to, which is usually immediate (there are some exceptions, I was one of them as I spent the first 2 days in ICU) walk. WALK, WALK, WALK. This will help you get better quicker as it helps your bowels start working and it helps extra gas and air to escape your body.
  • Expect to have some discharge from you rectal area. If your surgery didn’t include the removal of your rectum, then your rectum will continue to create mucus (totally normal). You will feel the urge to expel this and absolutely should. At first, you rectal discharge might be bloody and frequent. Usually, after a month it will slow down significantly and no longer have any traces of blood. Be sure to ask your surgeon how much blood is too much.
  • Your stoma will change shapes and sizes over the next 90 days or so. For some, this stops sooner than for others.
  • It will take some time to find the right ostomy equipment and routine. A stoma nurse will teach you what you need to know. Curious about equipment? There’s a section covering that just a bit lower. Just scroll down.
  • Swelling in your belly. This will subside with time.
  • Recovery is 6-8 weeks. Most people can return to work at week 2 but you should stay away from any heavy lifting or over exertion for at least 2 months. Be sure to ask your surgeon exactly what your limits are and make sure you write them down for future reference!

What to Expect from Your Stoma:

  • Gas noises. Don’t be alarmed. It happens. If you want to avoid it, avoid dairy, alcohol and carbonated beverages.
  • A mucusol layer around the stoma. This is normal. The walls of your intestines are lined with mucus for their protection. So, if you see a shiny layer around your stoma, it’s normal.
  • Movement. Yes, it will occasionally move around. Not by much, but you might notice subtle shifts in position, perkiness and how far out it extends.
  • Light bleeding. Your stoma is lined with small blood vessels but has a total lacking of nerve-endings. So, when you clean your stoma, you can’t feel a thing. It’s easy to break a vessel and have some light bleeding. No big deal. Just hold a moist paper towel (or whatever you’re using for cleaning) over it until it stops. Any bleeding that is more than light spotting and won’t stop should be immediately reported.

How To Eat Healthy with an Ostomy:

This is a relatively straight forward topic. It is in your best interest to play it safe in this area.

  • DRINK LOTS OF WATER. You are now much more prone to dehydration, especially with an ileostomy. Make sure that you’re drinking at least 3 liters of water, daily! Dehydration can cause many problems that are better avoided, especially since it’s so easy to avoid.
    • For some, staying hydrated is hard to remember. A few tips: get a hydration reminder app on your phone; buy a special water bottle and keep it filled and in sight at all times; ask your family to kindly remind you if they haven’t seen you drink in some time.
  • Stay away from high-fiber foods. You might be tempted to eat what you like now that you’re feeling as good as your are (yes, most likely, a week after surgery you’ll be feeling like a million bucks, even with all that post surgery pain). High fiber foods can wreak havoc on your recovering bowels. The easier your intake is to digest, the less work your bowels have to do and the quicker and more efficiently they can recover. Also, roughage can cause blockages and you DEFINITELY want to avoid that.

Ostomy Supplies:

Everyone has a different routine when it comes to taking care of their ostomy. Everyone uses different products as well. It might take some time to find exactly what works for you. Fortunately, many companies offer free samples so that you can test out products without it taking a toll on your bank account.

  • Coloplast has a wonderful sample program. Just for signing up for samples, they send you a wonderful kit filled with great ostomy tools that you would never have thought of getting on your own. Go to their website and request some free samples before your surgery: http://www.coloplast.us
  • Hollister also offers free samples that you can acquire here: http://www.hollister.com/us/products/sample.asp?id=1
  • My preferred method for ordering supplies is EdgePark. You can quickly create an account, add your insurance info and they automatically bill your insurance. It’s like an online mall for ostomies.

Ostomy Supplies I Personally Can’t Live Without:

I can’t live without these things. They make my life with a stoma so much better and maybe you’ll love them too.

  • Barrier Rings: I prefer Hollister Adapt Slim Barrier Rings
  • Deodorant/Lubricant: I prefer ColoPlast Brava Lubricating Deodorant
  • 2 Piece Pouch System: I prefer Hollister products when it comes to by wafer and my pouch. But most companies carry 2 piece systems. I prefer the 2 piece because it allows for frequent pouch changes without the need to change your wafer.
  • Nystatin Powder: Yeast infection are normal on the skin surrounding your stoma. Best way to beat them is the use of nystatin powder at the first sign. This needs to be prescribed by your surgeon.
  • Barrier Wipes: I prefer 3M Cavilon No sting Barrier Film
  • Adhesive Wipes
  • Curved Scissors: They make it so much easier to shape the opening of your wafer to almost perfectly match your stoma shape.

I hope this was helpful. If there’s anything you think I should add, or any tips that work really well for you, or any questions you have, please feel free to post in the comments. Thank you so much for your time and I wish you all of the best in your life with your ostomy!

 

Goodbye, UC!

I’ve been gone a long time. I’m sorry, mostly because this is just another thing that UC stole from me. But, I endeavor to get it back. The last post I started writing was mid-February. So much has happened since and I have every intention to make what I learned useful to others.

For now, an update: on April 21, 2015 (my 27th birthday) I had my colon removed! It was one hospitalization after the other before that. For 7 months, even after the c. diff infection cleared, I was in the hospital with the exception of a few days (if lucky) in between week long admissions. Doctors were painfully difficult (that’s for another time) and in April it became clear to me that I want nothing more to do with this kind of lifestyle. I asked my GI for a surgery consult, inpatient. My GI wanted to be thorough. He had a talk with my surgeon and an IBD expert and they decided that the best route was to confirm, visually, the progress of my disease. They schedule a scope for the next day to see if the Remicade infusions have helped.

I spent that night in excruciating pain, vomiting without end. Even though I was receiving pain medication, it wasn’t touching my pain at all and no doctor cared to fix that. It was a relief to have a scope because the anesthesiologist dosed me up with Fentanyl until I felt no more pain and then put me to sleep. I woke up in my hospital bed with my mother by my side. She told me that the doctors said there was absolutely no improvement and I knew that this was the best thing I could hear. It meant that surgery will be approved and at this point, I was praying for surgery.

I met my surgeon and his team the next day. They were all very kind and wonderful people. When the surgeon told me that I will be having surgery in 2 days, I welled up in tears of joy. My husband came to visit me that day and he found me walking in the hallways for the first time in days (my surgeon advised as much walking as possible before surgery). I cried when I told him about the surgery because I knew that it would change my life. I just wanted to go home and stay there.

Surgery was a huge success (I’ll discuss the details in another post so that people know what to expect if they are expecting to have a colectomy). I’ve been home for over a month. Not only have I been home, I’ve been feeling great. I’m finally tapering off of all my pain medication. I have gone out several times. I can travel to visit my family again. I can eat. I have energy. Things are slowly turning around. I’m slowly getting my life back.

It’s not easy to bounce back from 4 years of debilitating disease and 7 or 8 months of hospitalizations. It’s emotionally straining, on me and everyone who cares about me. It’s hard to get back into things, even relationships take a toll that isn’t immediately reversible. But – I couldn’t have asked for anything better. My body is recovering well and my heart will catch up. I kept a smile on through these 8 months. There were many moments of fear and uncertainty. But, I was able to find a reason to smile each day. If I can make it out of that, I can definitely recover from it.

I’m not completely free yet, but by the end of 2015 I will finally be part of an elite group of people called “the J-Pouchers” and I will be UC free.

How C.Diff Stole the Last 5 Months

Written Feb 17, 2015 | Published a bit late, sorry!

If you’ve been keeping up with my blog, you might have picked up on the pattern that I’ve been spending a lot of time in the hospital. As we stand now, I have spent the majority of time since August 2014 in the hospital. Constantly recurring c. diff infections have kept landing me in the hospital. My GI made the call to stop all of my UC treatment to give my body a chance in fighting the infection. In order to treat my UC I was on several immune suppressors and it’s incredibly difficult to fight a strong infection that way.

Though I’m grateful to say that I’ve finally beat my infection, I still haven’t been approved for restarting treatment and the fear of ending up back in the hospital is constantly lurking. In this time, I’ve been abandoned by the few good doctors I’ve found due to being a patient difficult to treat due to my constant hospitalizations. If you’re thinking that it is incredibly backwards that a doctor would drop me because I’m so sick that it require constant care, well, join the club. I still don’t understand it but I’m stuck picking up the pieces, trying to find a medical team that will follow me.

This wasn’t a blog meant to complain. I just wanted to explain my prolonged silence. But I also want to say this: Yes, the past months have been so incredibly difficult.

Hospitalized, Again

I can’t believe this. I was doing so much better. I almost hit the 2 week mark at home. Suddenly, the day I’m due for my infusion, i end up in the ER. Except this time it isn’t my regular hospital. I went in nervous but they couldn’t risk the 30 minute drive to my usual hospital and had to take me to the nearest one. To my surprise, ER was great. But I was suddenly moved to an observation ward and, I swear, this place is the 7th layer of hell. If i were admitted I would get proper care, but here, I get no pain medication and I’m not getting antibiotics for my c. Diff infection. This is a reality that scares me becuase I don’t want it to come back with a vengeance. It’s been a tough 24 hours and I’m just desperate for a break.

When will this end?  When will I be able to go outside and enjoy my life?  When can I get dressed up and look pretty?  When will my life stop being one trip to the hospital after another?  I’m exhausted and I feel so terrible for what I’m putting my family through. They’re so incredibly grateful and I have no idea how to lighten their burden. I’m tired and I need a break.

 

 

The Friends We Make

Being sick is more than just being sick. Suddenly, your life has countless of unexpected limits and one of those is on your social life. Any one who is chronically ill, or close to someone who is, knows that your calendar is filled mostly with doctor appointments, call back reminders and few tentative social events that you’ll likely be canceling on 40 minutes prior to. No, the chronically ill aren’t lazy or anti social; they’re just sick and quite often the uncontrollable spikes come with little to no warning. On the outside you end up looking like an antisocial flake, while really you’re lonely and wish you could put on your heels and go dancing.

Some people are luckier than others. I’m on of those. I have the fortune of sharing life with people who are very compassionate towards me in this regard and take with great importance each small attempt I make. Most people though don’t understand this and it results in alienation. I’m not entirely exempt from this either. I’ve been unable to make an old friends birthday celebration for the 3rd consecutive year, and while she still invites me (sweet of her) she probably does so with little expectation. It has been a very long time since I’ve been able to hang out with friends. The past year has been the worst since diagnosis and it has real reflected in my social life. I can bare;y go out on dates with my husband even.

As you can imagine, it’s extremely isolating. But I got lucky. In the past three years I’ve managed to make some amazing friends that without, this disease would be far more difficult to navigate. A few people from a support group have made such a vast difference in my life that I wouldn’t dare imagine life without them at this point, even if I went into remission and didn’t have another day sabotaged by UC.

Early on in my diagnosis I searched the Google play store for an app that would help me track the day-to-day details of my individual disease activity; and I found a great one, GI Monitor. There was a “socialize” tab that I generally ignored until curiosity took over and one day I started exploring. Reading the open forums showed me that these people were mainly kind and helpful so I proceeded to introduce myself. That introduction has led to some incredible relationships that I never would have imagined existing. At first they helped me with my UC by sharing their experiences, but a few of these relationships evolved to something far past a person to chat with when I’m feeling ill. A few of my dearest friends and supporters were found here and I even met my best friend on this app.

It sounds so silly that I can feel so much love to people I met online (a few in person, and hopefully more in the future). But, it isn’t. We share much more than diagnoses, we share understanding, jokes, compassion, and love.

Today was such a difficult day for me. The past two months have emotionally collapsed on me today and my dear friends reminded me how to smile and stay strong. I miss going out and sharing dances, drinks, and food with my friends. I miss shopping with someone who advises what I should buy because she intends on borrowing it later. But I’m not short on love; I’m not short on people who will hold my hand when I’m feeling most alone and, for them, I’m so grateful.

What to Do (and Not Do) When a Family Member is Hospitalized

This is a situation familiar to most people; either a friend or family member has been hospitalized. What is unfamiliar to most people is the protocol.

With the exception of 5 days (or so), I have spent the entirety of August and September in the hospital. Extended hospital stays aren’t something new to me and my family, but an entire 2 months is new ground. This time has been enlightening in many ways, and although I’m really tempted to discuss each of them, I won’t. Yet.

One of the things I’ve noticed during this time is that many people either aren’t sure on how to show support or are very bad at it. I realize that support doesn’t look the same for everyone, so I turned to my IBD support group to ask them to tell me what they want their friends and family to know about how to help when they’re in the hospital.

So, below is a list (an incomplete list, so please feel free to comment below and add) of some of the most important rules of inpatient support.

1. DO NOT talk about how stressful their illness has been on you. There is a great amount of difficulty that comes with being chronically ill and/or hospitalized for an extended period of time. Do not tell your ill and hospitalized friend or family member that their illness has depressed, annoyed or frustrated you. Doing so will just make you another responsibility that your ill friend/family member now has to deal with when they need to be focused on healing. If you are finding their hospitalization so difficult, imagine how many times greater it is for them. This is in no way to invalidate your concerns through this. But, if talking about this is something that must be done, do it with the right person.

If you need guidance on how to not say the wrong thing, check out Susan Silk’s giving comfort theory: “Comfort IN, Dump OUT“.

2. Always check with your sick family member/friend before visiting. Sometimes, sick people have no energy for guests and just want to rest. Other times, they will be spending their days in procedures and testing. Don’t take it personally if visitation if rejected, just understand that being in the hospital can be humiliating and very emotionally and physically taxing. Surprising someone at the hospital is usually a bad move. Unless you’re very close to this person, it is usually an inconsiderate move. I’ve seen this executed smoothly only twice; once because it was my husband and he is close enough to me that I can be ask sick as I please around him and the other time was my sister in law who went out of her way to check with family that she knew was with me to gauge if a surprise visit is something I’d appreciate. Each other time was very difficult; not because I didn’t appreciate the visit but because timing was usually poor and forced me out of rest.

3. Keep visits brief. Staying the entire day can be rude. More often than not, those admitted into the hospital long term just want to rest and will not know how to communicate that politely. So rather than receive the rest that they want, they’ll force themselves to entertain.

4. Not sure how to help? Be forward and ask. Throwing out a general statement like “tell me if you need anything” is sure to not receive much positive response. Something so vague will usually not be collected on. If you really mean it and want to help out be ver specific with your availability and what you are willing to do. For example; “I’m available all Monday afternoon and would like to help you out. Please tell me how I can use this time to make things easier for you. Grocery shopping, mowing the lawn, bringing something over to you?” This will let your family member/friend know that you’re serious and will make them more comfortable in accepting since you’ve outlined the guidelines.

5. Flowers and food are nice gestures but are another thing that should be checked prior to. Sometimes hospitals will not allow flowers; other times a person is sensitive to scent and can find a flowers aroma too overwhelming. And while everyone loves food, sometimes people are on diet restrictions that won’t allow them to enjoy what you’ve brought. The best gifts for hospital stays are practical ones; deodorant, body wash, extra clothes, slippers, toothpaste, body moisturizer, etc. One of the best gifts I received during this hospital stay was a bag of cute pjs and puzzle books.

Most importantly, please recognize that every person is different. While I’ve found that this list is generally accurate, I’ve met a few rare people whose preferences are very different. The best way to be there for someone is to show an interest and find out what they need.

I’d greatly appreciate hearing what you guys think should be added to this list!