Seeking Advice for Brother's Complex Medical Journey

Hi everyone!
Let me start by giving you guys a little background info as to why I'm here. I apologize in advance for how long this is going to be, and thank you in advance for taking the time to read this and hopefully reply with thoughts or ideas, etc..

Okay, so my name is Christina and I have a brother who is 27 years old and has a long list of medical illnesses. This is where it gets long and complicated, and please excuse the fact that I am not 100% sure of some of the names, diagnoses, and medications that I will be talking about, but I will do my best. So my brother was born with chronic lung disease, and ever since I can remember, we have been in and out of the hospital all his life. I'm 20 years old, and I'm pretty sure I've spent more than half my life in a hospital alongside my brother. So through the years, he came across new and challenging medical situations like tumors surrounding his heart, some type of arthritis (I don't know why he has it, but he does), asthma, chronic lung disease, restless leg syndrome? He had to have gastric bypass because of his weight from all the steroids to keep him alive, and most recently, this whole colostomy ileostomy mess that happened two or so years ago, and that's why I'm here today! Because at this point, after so much, I feel like not only has my brother, but also my mother and father, have become doubtful of his life and started losing hope and faith, which I thought would never happen. Now, let me take some time to explain this whole colostomy situation. Again, with a lot of this information and the exact situation, I am not so informed because I struggle to ask questions since most of the time those questions have negative answers, and I'd rather not hear them and end up feeling sadder about my brother's situation. But I will do my best!

So, I think about August 2011 or so, one day I remember my brother and mom had found this weird pimple-looking thing on my brother's butt, and it wasn't all too big. But after some time, it started getting pretty unnaturally big. So eventually, they took him into the ER, and when they did, I guess the doctor tried to pop it, and all this poop and blood came out. And then after that happened, I'm pretty sure he just went home, and from there, things went downhill. I don't really recall exactly how these next few steps went, but somewhere along the month of August, my brother was admitted to the hospital for serious stomach pains, which for me was different because usually, he was in the hospital for asthma. Anyway, he was in the hospital with all this pain, and no one knew exactly what was going on. So I guess at some point, they figured out he had holes or something in his intestines, and that's why all this poop was just floating all around in him and messing everything up. Then they did all these surgeries, and that's when he got his first colostomy bag! During this time, he also became addicted to the pain medication they gave him for the pain, which was not a good thing obviously, but it helped with his pain. So pretty much after the first bag and surgeries, he ended up staying admitted into the hospital for 9 months straight and had, I believe, around 7 surgeries and countless procedures. During these months, my mom never left his side like any mother would do, but then from all the stress, she ended up having 3 mild heart attacks, and they also found cancer cells in her breast, but luckily, with two or so surgeries, they removed all the cells. Aside from that, during these crazy 9 months, my brother got extremely skinny and didn't look himself anymore.

Somehow around May 2012, he finally was released and sent home. When he came home, he was around 90 lbs and had a colostomy bag and was also addicted to pain medication, while still suffering severe pain in his tummy. Also, the first few weeks, we had those home nurses that would come and help out. My mom and brother struggled to get him off the pain medication, which was intense for everyone in the house because of withdrawals and all that. Finally, after all their hard work, a few months later, he was back to a good weight, off the bad drugs, going back to school, and doing well, even with his colostomy bag! Even his asthma was doing well. I think he went about 4 months without once going to the ER, which is a record for him! BUT THEN, his asthma started to act up, and he unfortunately ended up back on the pain medication and addicted to it and was headed down the wrong path again.

So about three or so months ago, he was put back in one day. I honestly don't remember what exactly brought him back in, but I'm pretty sure it was stomach pains again. So then, sure enough, he had something wrong with that tomato-looking thing, which I'm pretty sure is called a stoma. And I think his fluids inside were infected as well, and they were concerned about fistulas and obstructions and all that. So then he had a few more surgeries and procedures, and all this crazy stuff happened in between, and I had never been so hopeless and worried about my brother because he's such a trooper. But now, more than ever, I see how everyone is starting to act more and more like this is what is going to end his life, and I truly believe that's not the case, and I know he can get through this.

So anyway, now four months later, he is still in the hospital, and as of right now, he still has his colostomy (but it is not being used for some reason; it just kinda sits there) and a temporary (?) ileostomy (which, by the way, I changed for him one day, and it was so crazy and weird. I give props to all of you ostomates for having to do that every day), and they took out like all his small intestine and most of his large intestine and also his colon, and they put in a wound vac thing that helps heal his insides or something? Oh, and apparently, his fluids inside are infected for some reason, so pretty much, to sum it up, whatever insides he has left are like toxic. Well, anyways, let me get to my point because this is extremely long...and hopefully, if you are reading this, you're still bearing with my horrible spelling and lack of medical term knowledge?

So, as I became a hypochondriac myself and spent hours on the internet researching anything and everything, I decided one day to look up and see if anyone had similar issues like my brother. I stumbled upon a few of these types of forums, but this one was my favorite! All of you are so positive and have so many great tips, and a lot of you have similar situations as my brother and give me hope by how all of you live such normal lives with all types of bags and complications. So I thought I would make a post and see if anyone else is or knows anybody who has similar situations as my brother because I feel as if the doctors have run out of options by the way they talk, and my family as well. They all say that my brother is such a rare case, and there's not much they can do for him, but I know there is someone out there that has information or advice or tips or really anything that can help my brother and family get back on a good track and live our lives as normally as possible.

Well, after writing a billion words, hopefully, you're still with me if you're reading this, and I hope I didn't ramble too much or confuse any of you. But please leave any comments, tips, advice, thoughts, questions, anything! I would really love and appreciate any feedback!
All of you ostomates are seriously so great and positive and inspirational. I hope to one day see my family and brother back to being so positive, faithful, and hopeful, like all of you.

Thanks again for reading!

Welcome to MeetAnOstomate (MAO). This is actually in the forum (vs the blogs).

You may also find the following useful:
www.ostomy.org
www.ostomyland.org

Good luck to you and your bro.

Greetings... It saddens me to hear of the pain and suffering of others, and I am so sorry to hear your brother is going through so much, and thank you for taking the time to visit our site here and share the story. I wish you all the best of luck and I hope you find helpful answers and advice on this site, and make supportive friends in the process.

It was a great idea for Sinfulsot to post those other links as well.

Healing thoughts are being sent your way dear xoxo

~Doe

Hello Christina. Thank you for your post which made  fascinating and thoughtful reading. Obviously there will not be many of us that have been through so much as him or yourselves but that doesn't mean that we cannot empathise with both his and your situation.  Personally, I find it useful and supportive to simply be able to vent my feeling on a site like this, knowing that there are others out there who will listen and understand without being totally put-off by what they hear.  Many of the most useful responses are those that, whilst not ignoring the many negatives, will try to look for the posisitives lurking in the messes that we find ourselves. From your description it sounds as though you also have this skill and quality in your perception, thinking and practical help that you give to your brother. He is a very fortunate person to have people around him like yourself who care enough not to back off when things get bad. It sounds as though there is not much you can do on a personal level regarding the medical stuff and this is probably best left to medical staff. However, there is an enormous amount you and your family can achieve ( and are achieving) at a social, psychological and emotional level for someone who, when things are bad, will need that sort of support the most. Do not underestimate what this support means to someone in that sort of position even if they sometimes cannot fully appreciate what they are getting in this regard.  You only have to read some of the more emotionally distressing posts on this site to realise that, in many ways, the personal support and friendships are far more important than are the medical aspects that we often cannot do anything about.  Your description of your brother's and family's circumstances are enough renew my faith in the power of human friendship and I hope that throughout those times of feeling hopeless and helpless you will stay emotionally strong for your brother and continue to give to him the love and support that you have all provided so well, so far.  Best wishes  Bill

Bill, I absolutely must applaud this post you made. The value and truth in your words speak volumes and reflect the priceless gifts others can offer each other. It has been a long while since I have read something so soulfully perfectly worded with solid blessed meaning behind every statement. Your post is a fine example of what this site offers, and what more family members and friends should offer. Major kudos and respect to you, and everyone reading this.

Doe

Hello WOUNDED DOE.  Thank you so much for your kind comments. I find it very hard to write in prose the things I really want to express and this is one of the reasons why I so often turn to rhyming verse. Also people tend to be much more tolerant of quirks, mistakes idiosyncracies and bad grammar in poetry than they are in prose. It is therefore very gratifying to hear that someone, somewhere thinks that I have done well in this written format.

Best wishes Bill

Hello again Christina, I was so moved by your forum post that I have been motivated to write some rhyming verse based on the powerful message that you so eloquently portrayed.  It doesn't come close to the power of emotion portrayed in your own writing but take it as a tribute to you and your family in your efforts to support your brother and as a thankyou for sharing your story.

Please see the verse entitled 'Because we care' which I have posted on my blog today.

I should perhaps point out that at the very top of my own list of 'aims' in relationships is to be 'there'. Thus, I appreciate the sentiments and the stories from others, that indicate that they too have this as a prime motivator in their relationships with others.

My very best wishes to you, your family and of course your brother.   Bill

Hi SisterCeelow,

I am so sorry to hear about your troubles as a family. I know firsthand how much one person's illness affects the rest of the family, especially when you are very tight-knit. I'm going to tell you about me and the struggles of my family because I want you to know that many of us have come to this forum just for the support and compassion, plus often times some really good answers from ones who are in-the-know.

My worst year (bear in mind I'm 66) was 2012. It started out simple enough with just having my second hip replacement in January. However, also in January, I was diagnosed with a fairly rare autoimmune disease called Myasthenia Gravis. I had the symptoms since September of 2011 but nobody could diagnose it and my daughter and I pretty much figured it out and then told the "quack" neurologist I was seeing that is what we thought it was. She said she had tested me for it months ago but the lab never sent the results (well, duh...you couldn't follow-up?) and upon requesting them from the lab, the diagnosis was confirmed and she put me on a drug to take care of the symptoms (really just hid them). What eventually happened in April of 2012 was I ended up having a full sternum (like open heart) surgery to remove my Thymus which had nodules and had connected to my left lung. Obviously, they had to take a portion of my lung along with it. Some people really benefit after having the Thymus (a gland we only need as children) removed but others do not...I had no choice.

This is a disorder in which circulating antibodies cause weakness by blocking acetylcholine receptors at the post-synaptic neuromuscular junction, inhibiting the stimulative effect of the neurotransmitter acetylcholine. The disease is treated with immunosuppressants or cholinesterase inhibitors. Myasthenia gravis affects multiple muscle groups throughout the body. Other common muscle groups that are affected may make it difficult for you to chew, swallow, smile, shrug, lift your arm up, grip, rise to a stand, or walk up stairs. When the muscles necessary for breathing are affected, a patient is said to be in myasthenic crisis. This is a life-threatening situation and happened to me in the second week of recovery following the surgery.

After admission to the hospital for the crisis, I was unable to clear fluids out of my throat and was unable to breathe. Being on a ventilator followed that. I was in the ICU for almost 3 weeks after that and then another week on the regular floor. At one point, I thought I was dying. I was on C-PAP at the time (forces air into your lungs) and my poor daughter about lost it. If it had not been for a nurse that is a believer and prayed and prayed with me and my daughter, I truly do not think I'd be here now. She, I, and my daughter formed a bond and we all see each other often. I cannot stress enough how important faith is and what God has done for me. I literally felt him touch me on my leg and on my shoulder.

Needless to say, this was not the end of it. The end of September, I went into the hospital for a procedure called Plasma Pheresis which is similar to dialysis and was connected to my Myasthenia issues. On about the 3rd day, I had extreme stomach pain which, again, went undiagnosed for about another 3 days. They finally figured out my colon burst and I immediately underwent a colostomy. I was also septic. This drew everything out as far as recovery. I was in the hospital for 4 weeks, still was on a foley, my legs were paralyzed, and my Myasthenia symptoms were horrible. They finally decided to move me to Spaulding Rehab here in Denver and I was there through Thanksgiving and came home the first week in December. After that, I became confused and seemed out of touch with reality. My daughter took me to the ER and they diagnosed me with blood clots in my lungs and also diagnosed a temporary sort of dementia that some people suffer after being institutionalized for long periods of time. I was only out of the hospital about 3 months of 2012 and was on Long Term Disability through my company at this point. I've since had to retire due to all the medical issues.

So far this year, it has been better. I had a gastric bleed which they repaired (they had to call a code blue on me during that procedure) and have had my Thyroid removed. The best thing so far is that my Myasthenia is in remission and I'm living a fairly normal life. Still have to rest a lot, but hey, I can deal with that. You can imagine what stress my daughter, (my primary caregiver who changes out an ostomy bag in seconds) son-in-law, and grandkids have gone through. We had all bought a home together in 2007 so all of my issues have been up close and personal for all of them. Fortunately, we are a very faithful family and they and my God have been key players in my current wellness. Daughter is pregnant with #4 (hopefully a girl...the other 3 are boys which I totally adore).

All I can say, my dear, is NEVER GIVE UP! Always stay faithful and hopeful as a family and try to pass that on to your brother. Be there for him as much as you can - you will never regret it no matter what the outcome. I, my family, and my prayer sisters will be lifting you and your family up in prayer - there is nothing on this earth like the power of prayer. You have all my love and respect for all you are going through. This forum is awesome even if it doesn't answer any of your issues it still gives you the support of tons of folks who have been through tons of health issues.

God Bless Always
Judi

My new Neurologist is awesome

Hi Christina, it sounds to me like he had a perforated intestine and the bile or poop got into your brother's system. Are they treating him with antibiotics or anything like that? I hope your mother is doing better. I know what that is like, my mother sat at my bedside as I grew up in hospitals and doctor's offices as well. I have had a urostomy bag for 52 years.
If you are not sure of what is going on, ask the doctors. Tell them you need to understand better what is going on with your brother.
Good luck to you and your family!!

Hi Sisterceelow,

I am so sorry for what your brother has gone through. He is so young and has been through so much. It really is a wonder that he is still alive. I admire you for doing everything you can to try to help him. I lost my brother 17 years ago, back before the internet, before support groups, before online research. I'd give anything to have been able to help him.

Just a thought after what I had been through when I lived in Texas, I kept getting more and more sick, and my doctors literally did not know what to do with me. I'll keep a long story short, but one of my doctors finally decided that my case was too complicated and that he was going to work on getting me into the Mayo Clinic. Now the Mayo Clinics don't just take everyone, and I guess there must be a long waiting list to get in there, but my doctor worked diligently to try to get me seen by them. But in the meantime, I was becoming more and more ill, so I had to move home, to California, and when I got here, I almost died. But my mom, who has been living here for some years, helped me get into UCI Hospital, which is a teaching hospital. They have all the up-to-date treatments, new technologies, etc. They saved my life.

I noticed that you live in Torrance, that is why I am mentioning it. I don't know if your brother has been seen at UCI in Orange. If he hasn't already been to UCI, maybe he could go there where they have every kind of specialist. They don't let you go until you are better (I should know, I was in there for MONTHS). Then maybe his doctors could try to get him into the Mayo Clinic.

I pray your brother finds some peace soon.

Calico

Hello Christina

I was touched by your story and your support for your brother. Sending out prayers and best wishes. Stay positive, it helps.

Brad

@Jupiter Thank you so much

@Calico- Wow, thanks for your input. I have never heard of UCI Mayo Clinic! I know he has been to UCLA hospitals and USC as well, I believe, but never to UCI. I'm going to do some research on it and inform my mom on the idea! Actually, just yesterday he was brought home and is living here with an IV and wound vac, and both his ileostomy and colostomy, so hopefully he heals soon and maybe this Mayo Clinic can help. I really appreciate you taking the time to reply and hope to hear that you are still doing good

@NanyAnn- You are right! I just asked my mom and she said that he did have a perforated intestine as well as an abscess and fistula. I do ask the doctors as much as I can, but they never seem to have enough time to really give me the full detailed explanation that I desire. Thank you for taking time to reply to my post.

@crazybat13- First off, thank you very much for taking the time to reply to my post. Second, I find it amazing how much joy it brings me that there really are other people out there that have to go through so much when it comes to medical illnesses. I know it sounds weird, but I really have always thought my whole life that my family and I were some of the only people that had a hard life due to my brother's illnesses. I'm so sorry for what you have gone through and I'm glad to hear that you are having a better year. I completely agree with how much the nurses can affect my family and me while my brother is in the hospital. It's amazing how many new friendships and bonds we have built with these nurses over the years. Again, thank you so much for your input and wishes, your kind words truly make a difference in my life and the way I view things that go on with my brother. I really do appreciate it :]

@Bill- Bill, you are literally a perfect example of the type of people I was talking about on this website. Your words moved me and my family so much. I shared this with them and nearly brought my mother to tears with your poem and beautiful words. I can't begin to explain how much it means that all of you are complete strangers to me and my family, yet all your kind words touch us and I truly feel blessed that I know there are people out there that really do care. Thank you so much.

@woundeddoe- Thank you very much

@Sinfulslot- Thanks for the tip! I'll make sure to check those sites out.

Dearest Christina,
I've just read about your brother's condition and your unending love and support for him. I haven't got all the answers, but I saw on my local TV program last week about "Fecal Incontinence".
Search the internet for "ITV/THIS MORNING".
There was a great discussion about breaking the taboos of incontinence.
I myself have gone through 13 operations. Three years ago, I was expected to have an "Ileostomy or Colostomy". My surgeon plumbed me back together, but now my situation has spiraled out of control.
The most important point of this message is I'm thinking of you all and send my love to all of you.

Annette

Christina, make them make time to talk to you and your parents. They will try to push you aside and not explain things. But you have the right to know. I hope things are going a bit better. Take care and I hope your mom is doing well too.