Lessons Learned From My 3 Hospital Stays

Watch on YouTube: https://youtu.be/IQkmk8oSIIo


Listen to Podcast: https://soundcloud.com/alison-dibarto-goggin/lessonslearned


Read the transcript:

All right. Good morning, everyone. This is Dr. Alison. And today I wanted to share with you a little bit about what's been going on with me, with my journey in ulcerative colitis, basically why I disappeared the summer, because if you have a chronic illness or an autoimmune disease, you, or even really an issue where you feel like you're not getting answers or the support you need, there's so much to do and learn and research. And so many lessons in our journey that I wanted to share with you. What I have learned over the past few months and what I am doing now to support my health as I continue to heal and feel better because we're all on this journey together. And when we look back, it's like, Oh man, I wish I could have done everything completely different. If only I knew what I knew now, and maybe sharing my story, it will help you skip a couple of those milestones help you to find that support you need, right.


And really just feel confident to keep moving forward with your health and to not give up. And I think that's lesson number five. I'm going to share with you, but let's dive in. I have my notes so I can stay on track and we can get this done cause a lot happened. But really in January I had a colonoscopy that I had been putting off forever because I felt like I really had my gut health under control with food supplements, doing the right thing. If I had a little flare up, I would either do a fast or I would change up how I ate. And then around December, November, it just really got out of control. So I finally gave in and said, fine, we'll do some testing. And it showed that I had like mild ulcerative colitis, not really a big deal, nothing else going on.


So that doc put me on a medicine that mesalamine, which is common for ulcerative colitis. And over that time from January to January, February, March, April. So it took about three and a half months and it didn't make any difference. And actually I really started to get worse. So the lesson number one is find a doctor who listens to you, who is office staff, doesn't laugh and say, Oh, he's ignoring you when you send the office messages whose nurse practitioner goes, Oh, I don't know what to tell you, but you should get your flu shot. Like completely. I was completely ignored and blown off. And part of that reason was because my health insurance and my pharmacy insurance does not cover these types of medicines. So what I have been using is good RX. So I have no problem with that. Okay.


And I'll buy whatever medicine I need, but can we keep it under $500? And he really, that that really had a problem with it. He really was just angry and he's like, I just don't know what to do with you. And you just need to make all phone calls. I made every phone call that I needed to make. I called my health insurance. I called the prescription company. I called Walgreens and talked to them. We tried every little route that we could. And sadly, it's just not possible through what we have right now. So they really treated me poorly because what they thought were my, either my finances or my insurance coverage, because I'm self employed, I don't get to have blue cross blue shield for I'm thinking of like my friends or family who like, Oh, we just have health insurance and it covers everything.


And that's amazing. I don't have that through my work because I am my work. So that lesson of your doc is ignoring you should have been my first sign to find somebody else who's not going to ignore me. Okay. So flash forward to this June, I started getting really sick, really, really, really sick. I had so much pain, so much bleeding. So fatigue. I was just laying in bed all day and then getting up to come to the upstairs office in my house, do a patient calls. And then just going back down into bed I couldn't leave the house. And eventually my days became so painful that my husband started trying to convince me to go to the emergency room. I instead went to a new functional medicine, doc who's prime primary care physician and got started with them. It was super exciting.


But really the day I saw them, I should have been in the hospital. So I was just so stubborn and with this pain. And when I told that doc, I said, you know, I thought childbirth was painful. Childbirth seems easy now, that's how much pain I was in. Where my childbirth used to be my marker for 10. This was 15. So the pain was so incredibly bad. So the next week I ended up going to the emergency room, ended up caving because I was on the floor, screaming and traumatizing my children. And I was just so sick. So sick going to the bathroom. Like every 30 minutes, every time I went, it was just insane amounts of pain. And we went to the closest hospital. That's where my GI was, who had treated me like crap. And guess what?


He treated me like crap again. And he said that we, he just wanted me to try a different brand of the same medication. He didn't want to try anything else. And I said, there has to be a different option. I can't just stick the same medicine that first of all, hurt, my stomach hurt my gut and didn't do anything. And he's like, I don't, I just don't know what to tell you anymore. And just released me from the hospital with no plan, a couple of different medications. And that was it. No phone calls, no follow ups, no instructions. Just get out of here. He just didn't want to deal with me. I asked for a second opinion on my first hospital visit and I didn't get it. And so I went home and I was still very sick and a lot of pain. And then I think it was July 5th, right after the fourth, because I had a good day.


I think the medicine and the pain medication had just kept me going then on the fifth, I was back on the floor, screaming and crying and going, okay. So I know, I know I need to go to the hospital again. We can't, we can't just mess around with this because there's no point I'm not going to get better. So when I got in that next day I saw the hospitalist and, you know, the main, the main primary MD who just sees everybody and make sure that everybody is okay. And they said, if I wanted a second, first of all, they denied me a second opinion because they said hospital politics. They didn't want to upset the doctors. They didn't want to ask. And thank God my husband came in and the charge nurse was making her rounds. And my husband looks super scary in a mask with his, his army eyes.


And he got very, like, where's the second opinion. We need to talk to somebody else that we're not going to keep coming back here every week. And she was like, Oh, we'll get you one right away. So thankfully I got a second opinion. Now that doctor was also a super jerk to me who made fun of me because I was crying because I was in so much pain and so overwhelmed. And I felt so hopeless. I really thought that this was the end. I thought, surely they're going to give me surgery and cut out my intestines and I'm going to have a colostomy bag. And if that's the answer that kept me alive, then, okay, I would do it. But he basically told me my only option was to get on my phone and get new health insurance tonight, which was the July 6th, July 7th.


And he wasn't going to treat me because I had waited so long to get help because I had waited like three years because I had myself under control. And because I was so over emotional and I wasn't gonna, like, he was just a total jerk too. And I think he talked to the other doc because they're in the same hospital, they're in, they're in different practices, but he just came in with that same mentality that you don't have the money to afford the drugs. And he wanted me to take Humira, which is a biologic, the injection. And when I looked it up on good RX is $9,000 a shot and you need one every other week. So he laughed at me and said, you're going to bankrupt your family, hilarious. And he just kept going on and on about it. So I decided he's not the person for me either.


Cause I learned my lesson that first time. And you know, he put me on a bunch of different medications and I took them because it was I'm willing to do what it takes. And that's a lesson for you guys as well, be open, be willing, do what you need to do, do your research. Right. I did not want to take Humira because we've all seen the commercials. Right. And I'm going to talk about that in a few minutes. But and I didn't want another colonoscopy because I knew that they were so damaging and traumatizing to my body, that it wasn't worth the risk with these guys who were treating me poorly. So thankfully I had a friend who also has ulcerative colitis who said, Oh, I see this doc at mercy. So I took my medicine. I made it about a week and a half before I started getting extremely sick.


So the long story short is I lost about 35 pounds in three weeks. I lost all of my strength because it was all muscle mass, all muscle. I couldn't get out of bed. I completely stopped eating because I was so sick and nauseous. I couldn't walk more than five feet without passing out, going dark. So I would get up from my bed to go to the bathroom and hope I made it to the toilet before I went completely black and then sit there until my vision came back. I started vomiting. I couldn't eat, I couldn't drink. I couldn't take my medicine anymore. I was, I was so sick. I felt like I was on my death bed. I told Jake I'm like just called hospice. Like this is it and if I hadn't gone to the third hospital, I probably probably wouldn't be here.


Because of how sick I was. My husband had to carry me from the bed to the car on the way to the third hospital stay because I couldn't walk. And he had to carry me into the hospital into a wheelchair because I was so extremely weak and so sick. So the second lesson I have written down is that don't wait so long to get help. If I could have done everything completely different, I would have gone to that third hospital. I already had that referral. I knew who I wanted to see. I shouldn't have tried to stomach through the pain I'm coming in. I should have just said, Hey, I'm in trouble. I can't do this on my own. And we're not really meant to heal ourselves. Right. We can heal ourselves, but it's okay to ask for help. And even as a physician and someone who's been practicing for almost well over 11 years you know, I thought, I just thought I could just do it on my own.


And we get, we get blinded when we're in so much pain and we're so sick and we can't make those good decisions. We can't see through it. You know, my husband says, Alison, you look completely different. I'm like, no, I don't. He's like, no, you lost 35 pounds. You look different. Your face looks different. Everything about you is, and I'm in total denial about it. I can't see it. And even when I went to, I saw my primary yesterday and she's like you so sick the first time I saw you, we have been thinking about you. We have some ideas for you. I'm like, I wasn't that bad. No. When you are sick, you can't see it. You'll only feel it you're in survival mode. So don't be afraid to start reaching out, just asking for referrals. My husband's friends even like started making lists of like, alright, who's the best GI in St. Louis? Who can we get her to? Because she needs help. They can see it too. So ask for help. Ask for people to help you. It's okay. It's okay to try different doctors.


I had a really hard time saying, all right, I'm firing my first GI that I had a really hard time. I felt really bad. I don't know why, because I didn't want, I don't want to hurt this guy's feeling who treated me like crap. I don't know. I'm so don't, don't wait. Because three hospital stays three is what it took to get me to a place where I was alive. Then I got the treatment that I needed. I got the help that I needed with very, very smart, compassionate kind people that should have been done that first week of June. It should have been done in March with a different doctor, like knowing that that other guy was ignoring me, but you already know that.


So on my third day, I relented, I guess I should say to another colonoscopy. I know it's not a sexy conversation, but I am very scared of those. I know that they can be damaging and traumatic. I had already had one that it took me weeks to recover from it. So I had this new doc who came in and she was very kind understanding, took the time to talk to me. And when I went in for the test crying, she knew I was upset. She knew what I had gone through. And she says, okay, we're going to use different equipment on you. We're going to use pediatric equipment on you. And she walked me through the whole thing and it was like, Oh, what a genius idea to use non traumatizing equipment on me. And just so kind. And I had no problems. I, I don't even know that it happened.


Whereas last time January, it took me weeks. Like I said, so what ended up happening is my very mild one section ulcerative colitis turned into end-stage were stage in my whole colon. So your colon should be nice and pink and like hydrated and lots of great blood contact. And that's why it's pink. And mine was completely gray and just worthless, worthless. That's not a very a physician term, but it was, it was dead. It was just completely dead. And I was just so sad to see that, and I don't know why it happened or how it happened, or how it got to the stage so quickly throughout my whole what triggered it. My, everything I was doing, wasn't helping, including the medications. So I am so grateful though, for those doctors and the nurses of that GI team, as well as the nurses at mercy, where I was in St. Louis, because they really worked with me. They really talked to me. They sat down with me, they explained so many different things. They talked to me about food. They talked to me about stress probably cause I was crying nonstop, but the pain and the emotions and the hormones and not sleeping in the hospital, not sleeping at home because I was so sick. It was just a very difficult time, very difficult time having what I say about five mental breakdowns a day. And we're going to talk about stress and the next podcast. But the lesson I took away from that was the lesson that, that GI team sat down and talked to me about, which was you can't sit here and worry and stress and beat yourself up and ask yourself the questions. Like, why me? Why did this happen? Why am I so sick?


What triggered this? Like, and keep yourself, I don't want to say some people. I wouldn't say it was a victim mindset for me. And some people do get in that victim mindset, like, Oh, I'm so sick and poor me. And this is so difficult. I can't believe this happened. Yes, absolutely. I understand that. But for me it was kind of just like Epic confusion, right? Like how did I get so sick? How did this happen? Like I was doing everything right. What did I do wrong? And I was just kind of beating myself up. Like, who am I? What, like, what's wrong? How do I fix this? And it was really

Just a lesson in that we can't control everything in our health and our life. We can't control our bodies. We can't control what issues we have or symptoms we get are diseases that our body might have re human and things are going to break down. Things are going to get triggered. And when we talk about functional medicine, there's a lot of options. There's a lot of testing. Right. And so when we've talked to people about triggers, lots of them are out of sight of your control mold in your house, toxicity in your water, the air that you're breathing stress, jobs attacks like there's some like just looking at a company's lab testing, look at all those options. Look at all those triggers. You can't control those things. And when I look back at, okay, well, if we're looking at, from January to June or we're talking quarantine, we're talking, COVID, we're talking stress, we're talking Alison going, Oh my God, I'm locked up in my house and I can't go not working.


I can't do things I want to do. Or talking about business stress and homeschooling the kids. Like maybe it was stress. Maybe it was that's what triggered it? What did I do wrong? And really had to let go of that control and say, okay, this is my new starting point. This is my new baseline. No matter what happened before, and I'm going to manage it from here, I'm not going to look backwards. I'm going to do the work that it takes to keep moving forward. So releasing that control, releasing that victim mindset of this happened to me. I w I'm a good person. Why did bad things happen? Right. I, I did everything right. Why, why am I wrong? Like we just have to really just accept and the word and the picture I actually have on my phone right now. So those surrender, because that's what we have to do when we get sick, as surrender to the process and trust in ourselves, trust in our body, trust in God, your faith, the universe, whatever you call it, really dig into that spirituality and bring that back into your healing process as well.


So, all right. I did finally relent to starting a biologic, which I, you know, I'm terrified of because of those side effects. And I think it's so funny because everyone's like, Oh, we can't keep you on steroids because they're so dangerous, longterm, so dangerous, long term. And then, but Humira and Remicade, they're totally safe. It's totally safe. Also, you're going to get cancer. I'm like, so how is that better? Like, how is cancer better than weight gain and swelling and a little bit of insomnia with a steroid. But I knew that I couldn't do nothing. I knew that whatever I had been doing, even with the previous hospital stays was not going to move me forward. So I did get an infusion. I got one in the hospital and it actually, I would say saved my life because within two days, my bowels were so much better.


The pain was stopping. The blood had completely stopped and I was going to the bathroom like every three hours, which is a miracle. And I was so happy. So I was able to be released from the hospital without pain medication, without a box of pills that I had been leaving with. And I was sleeping through the night. So it really, really changed my life. So my fourth lesson in this is it's okay to be terrified of the medicine that you might have to take, but when you have the right team and you're open to it, and we have people who are going to take care of you and walk you through the process is completely different. There's no way I could have trusted those other two docs with infusions and taking care of me and honestly, the GI office and I'm with now, their NP's, send me a message every few days to check in how are you?


Are you okay? What's going on? They give me a list of symptoms to fill out and say, you know, what's going on. I feel very well taken care of, and that is so important, especially when you're taking significant different types of medications. You're taking one's that you're not comfortable with. You need to be able to have that support and be very aware of what's going on with your body. So you can report back and say, Hey, I'm having these symptoms. What can I do? Can we change this? Can we up this? Can we lower it? Can we do something different? And that's is going to help you.


And so sometimes the way I look at this Is Not the way my GI probably wants me to look at it. I I want to do this. I'm going to probably do infusions for about a year, right? Because it's going to take a long time for my body to heal. And after that, I I'm going to be doing so many different things right now to support myself and build that foundation, that in 12 to 18 months, I can probably stop the infusions and continue on with my life and continue healing now. And that's the dangerous part, right? Is that once you start feeling good and it happens with supplements, it happens with everything like, Oh, I feel good. I don't need this supplement anymore. Or like, Oh, I can go back to eating gluten and dairy and whatever I want. And then you fall apart and you have a flare up. So it's a dangerous world to live in.


And we're not going to make those decisions until 12 to 18 months from here with my entire team. So have a team that you trust because that makes all the difference and the medicines and everything like that. So now I'm still incredibly weak. I can't believe I made it upstairs into my office. This is the first time I've been upstairs. I haven't been able to go upstairs. Okay. My GI said that I was horribly sick for six months, so I need to give myself six months to heal and get my strength back. And I completely agree with that. And I'm so grateful that she has said that, but also incredibly impatient. I don't want to do that. So when you have these issues, don't expect yourself to heal within a week or two, and I'm, I still have 30 pounds to gain back.


I still have muscle to gain back. I still, my blood work was so horrible. I just had it done. I was like, Oh my goodness. My vitamin D was at 20. Are you kidding me? It's supposed to be at 60 or 70. I have severe anemia, which I've never had before. So get your blood work done, use that as a baseline, know that it's going to improve. And when you have a chronic illness is isolating, it's scary. It's painful, it's incredibly painful. So there are people out there find support groups that you can join maybe on Facebook, maybe in real life and find people who understand what you're going through. So don't give up. We can we can marry the best of both worlds with modern medicine. And I don't, I guess, alternative medicine. I always think traditional medicine is like Chinese, traditional Chinese medicine and herbs and food.


And because it's a tradition, we pass it on as part of our culture and part of our life part of our, our innate healing and our understanding of healing. So to me, traditional medicine is like food and herbs. But really alternative medicine, holistic healing. We can do both. At the same time with the, the understanding that you have to check your medicine versus your supplements, because you don't want to hurt yourself. So always call your pharmacist, call your doctor, whoever's prescribing supplements or herbs or your medicine, and make sure there's no contraindications. Always, always, always, always do that. Always take your medicine, don't stop your medicine and give it up to take a supplement. That's just my CYA right there. Cause it's very important. So what I'm doing right now and I'll end with this, so I'm doing it infusions. [inaudible] Taking steroid.


I was taking prednisone, but it makes me very sick. And what I learned yesterday that my primary told me that she had just learned is that prednisone is filled with fillers and those fillers include gluten and dairy. And so she said, we can use compounding pharmacies for any new medication that I need because we're going to make it without gluten and dairy because I'm so sensitive and it destroys my gut. So I actually started a different steroid. That's more targeted for the gut which has been helping a lot in some pain medication because we shouldn't be living in pain and we can take it when we need it. So again, don't wait to hold, sorry, or ask for help. So the number one thing that I'm doing is food. And really what that looks like is a lot of smoothies, things that are pre digested, if you will, things that are broken down, things that are period, because the less work my gut has to do the more I'm going to be able to absorb that nutrition because my malnutrition levels are so high, I guess you should say, or my nutritional level are so low based off of my blood work and was everything that's going on.


I started liquid IV, which is a powder that you put in your water to enhance your hydration because I'm still incredibly dehydrated. I didn't even tell you about the horror stories with my IVs because I was so sick. But we're also getting into a water filter. So I'm actually taking a supplement break as my body's healing, just to let the medicine work because taking pills, I'm not going to digest them, absorb them. So I'm really just sticking with the patches from patch MD right now. So my body doesn't have to do as much work. And then we said about two or three weeks, we're going to restart. So in about two or three weeks, I'm going to go back and do ozone sauna therapy with the whole cat at my primary's office. We might do some Ivy nutrition as well, and some ozone IV.


So just completely different things to keep trying and keep moving forward. We're still doing oils topically. So I do that. My gut, my husband does the aroma touch technique on my back because it helps with pain helps with inflammation. And it really just is one more thing to layer in. I love it so much. We're gonna start peptide injections because that has a lot of backed research for ulcerative colitis and Crohn's, so I'm not really excited about the injection part, but any little thing I can do to heal, I'm going to do it. I have informed light that I do every day as well. I have an amazing woman who does Pranic healing and and distance healing. So she's been working on me. She worked on me when I was in the hospital, like she's working on me when I'm home as well.


I have a friend who does craniosacral therapy and she came over and that also just helps balance. My body helps with pain management and helps with the neck and back pain as well from laying in the hospital beds for weeks and weeks as well. My husband's doing Reiki on me because that touch helps so much with pain. That is basically a pain pill. I like it. You wouldn't be so surprised. But just 10 minutes of him focus energy has, is really the reason that I stayed out of the hospital for so long. We're doing talk therapy as well. I have an amazing therapist who is helping me break down all the things that are keeping me stressed and then these pain cycles and things like that, doing a lot of reading and spiritual support just trying to layer in everything I can and rest and funny TV and cartoons and snuggling with my babies.


And that is snuggling babies as good medicine until they like kick your head or something. But every little thing. So you are not just stuck taking medicine, you can add in and layer in all of these things and get the support that you need to, to feel good. And really, I know that the infusions stop, the autoimmune attack right there. And I know it, I feel it, but it's not healing the tissue. And so I am, I'm going to combine the things that are going to slow the attack while allowing my tissue to heal and my nutrition status to come back up and my mental wellbeing to heal and become stronger. So I wish that for you as well. So don't give up, keep looking for options. And if you want functional medicine support, I am back in the hop of, and I'm in the office and in the office. So you can schedule online at little black bag medicine.com. There's always hope and thanks for tuning in and listen to my story and we'll see you next time.

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