The following is my experience and the steps I’ve taken to feel pretty well on a day-to-day basis. By no means am I trying to say that this is a recommendation or a solution for anyone else. Rather, I have made good progress because I have read SO MANY other personal stories and learned from their experiences. I want to contribute to anyone else in the same position and hope that this may help.
So, like many, I have been sick with stomach problems most of my life. I saw different doctors and specialists at times, but for the most part was dismissed as a hypochondriac or oversensitive person. Even by my own family. And, that’s what I convinced myself of – the pain wasn’t anything everybody else also dealt with and I had to just push through it. I also think this is because I never really had blood, just cycles of extreme C and then D.
I can recall 4 specific times that I now know were flares, but with enough time my body always seemed to recover and find remission. During one of them, I was handed an info sheet on IBS and told to leave out spicy foods for 2 weeks.
Throughout my entire life, I had THE ABSOLUTE WORST DIET EVER. Sugar, fats, carbs, animal protein. Repeat. From birth, I drank cows milk and apple juice. Seriously, there are so many photos of me with two bottles. Not that this caused my condition, but I have to say I’m not entirely convinced that diet is unrelated. There is a lot of crap in our food!
Anyhoo, in early 2011 I was under consistent daily stress with a full workload, my own graduate education in progress and my husband also home as a full time student. That spring, we received an opportunity that was a great life move, but also meant a geographical move on top of everything else. I was exhausted.
About June I started loosing weight. I couldn’t eat very much. I was having stomach pains again. The D started. But, of course, I could handle it. I always had before. So I went on that way for a while, not really talking about it. I didn’t want to be a weak soldier after all. I have flexibility at work, so I would just log-in remotely avoiding the fact that I couldn’t leave the bathroom or barely walk at times.
In August, I saw my GP. She congratulated me on my weight loss as I had been carrying some extra pounds. I mentioned the pain and the symptoms I was having. She said probably just stress, told me to get some sleep, and sent me on my way. By September, my husband was getting very upset with me. He was tired of me pretending like nothing was wrong and using my GP visit as an excuse to support this. I made an appointment to see a new GP (this was after our move), but had to wait 3 weeks for the earliest available.
At this point I was vomiting up entire meals right after eating. Laying in bed at night, crying and writhing in extreme pain. But, yes, still trying to say I didn’t need the ER. That was for really sick people. This didn’t go on long though and I did finally go to the ER for help because I couldn’t wait to see the new GP anymore.
Yep, they acted like I was a hypochondriac, too. Gave me an anxiety pill, told me I had an ulcer and sent me home with a number of prescriptions and instructions to keep the GP appointment. G*@*BVGLIJ@UO*VNK@!!!
Finally, finally, the new GP had an intuitive bad feeling. She was very concerned this was not an ulcer and sent me for a CT scan right away. The radiologist found a massive abscess on my appendix and sent me directly back to the ER. At the time my symptoms were nausea, vomiting, cramping, severe distension and LRQ pain.
Almost immediately there are doctors, surgeons, nurses, interns, everyone stopping into my room to figure me out. “Does it hurt worse when I press, or when I release?” I don’t know! It f*ing HURTS! Do I have an appendicitis? Why hadn’t it ruptured? Is it a controversial chronic appendicitis? Operating would probably cause more damage because of the inflammation. At that point I was told it was 99% my appendix and 1% something like Crohns. That was the first time I encountered the word.
They started me on Cipro and Flagyl, maybe one of them was Levafloxacin (or something like that) as soon as I arrived. I also had to start prepping for my first colonoscopy right away. The next afternoon, the GI couldn’t actually complete the scope. I had so much inflammation he was really concerned for the risk of a puncture. I also woke up during the procedure and started screaming profanities at him because it was so painful.
Celiac had been ruled out from previous blood work and so from there I had the super duper special blood test. It came back as a maybe. Each day in the hospital, the percentage of likely Crohns rose and likely anything else dropped. On day 5, when it was 99% Crohns, I convinced them to send me home – at the time I was taking Cipro, Flagyl, Reglan, and Pentasa. Each morning I would get up, vomit, drink an Ensure and take 14 pills. It was absolutely miserable.
Even though I was the same person, now that I had this chronic disease diagnosis I went into a tough depression. It was really overwhelming.
Shortly after January 2012, I stopped all previous meds and started Azathioprine. I didn’t feel like it particularly helped. It certainly made me VERY tired all the time and my hair consistently fell out. I went on that way into the summer and with increasing frustration with my GI. He was assigned to me by the ER and I just stayed with him. He was alright, but he told me to 1. Not think about diet; 2. Stay away from forums; 3. Probably take Remicade, though we never really had a clear diagnostic for anything.
I decided I wanted a second opinion, but more, I wanted a full team of medical professionals who would be my advisors. And, trust me as my own best advocate. I was tired of being told this is an individual disease, but somehow there is a fairly generalizable treatment plan. Through recommendations, I found a new GP with an independent practice and a holistic approach to medicine. With her help, I established a new GI, an acupuncturist, a nutritionist and a meditation routine. Each doctor is independent of the other, no one working in the same facility, and this functions really well for me.
First, my GI. He is wonderful – a M.D. and Ph.D. actively leading research while also treating patients. He is most curious about my symptoms and what I find helping me, in addition to what treatments he has to offer. He recognizes diet affects everyone, whether they have IBD or not and is open to my alternative treatments. When I first went to see him, described my history and frustrations, his plan was simple. Let’s go back to the beginning and see where the information leads us. Started with blood – inflammation looked ok. So we went to a colonoscopy (if inflammation was up, we were going to try tweaking the AZA to get it under control before a scope). When I woke up from the procedure, he was in my room prepared with news. There was a polyp in my colon (removed and later found non-cancerous), a large stricture in my cecum and so many pseudopolyps covering my ileocecal valve that he couldn’t find an opening for the scope to pass through. “Quite frankly, I don’t know how anything is getting through.” He recommended me to a surgeon.
Second, my acupuncturist. I started seeing her, my new GI and the nutritionist all at the same time. She is absolutely wonderful and I feel a huge benefit from this treatment. She actually started out in western medicine and so I share all of my medical news, diagnostic and otherwise, with her. I tried many things, this was the cure to my vomiting. In addition to my ongoing visits with her, she visited me in the hospital after surgery. Right there in my room a few quick needles and my intestines were on the move. The attending nurse just rolled her eyes, but I credit my ability to go home on day 3 to her help!
Third, my nutritionist. We tried an elimination diet as well as a recommended menu she has created for IBD sufferers (though it does include a lot of things many have said they cant eat) which is pretty paleo in nature. Ive looked at SCD, Paleo, GAPS, Gluten Free, FODMAPS, etc. For me, I have found dairy free, grain light (I eat a limited amount of homemade wheat items), sugar free, whole foods are best. I try to eat simply. No beef or pork. Limited chicken. Fish, Turkey and Lamb are my predominant proteins. I have made a full switch to coconut oil. No corn, no soy, no rice. Our juicer is our best friend and I have about 24 oz of fresh orange/carrot/pear/apple juice everyday. No coffee, no soda. We eat out about 1-2 a month and Sunday has become a cooking day to prepare for the week. But this seems to be my secret sauce; I really encourage everyone to listen to their intestines for diet guidance.
And, fourth, mindfulness meditation practices have been really helpful, too. I think that the key to good health is mind and body. There is always SO much happening around us, this ritual is non-denominational and completely about enjoying the present moment as a way to relieve stress.
So, yes. I did see a surgeon. On December 3, 2012 I had a resection that removed 12 cm of small intestine, ileum, appendix and cecum. After the operation, I was told that he also found a fistula, but closed it off; that the abscess on my appendix had attached itself to my back muscle (this had been painful for over 10 years and was diagnosed as a “pulled muscle”. thank god it is gone now); and that a scan of the rest of my digestive tract showed no active disease.
I was in the hospital 3 days and off work for 6 weeks total. I progressed my diet VERY slowly and with good results. I eat whatever I want, including veggies, fruit, nuts and feel lucky that I can. All that and rice is painful, but, hey, who needs it…
My instructions were to take the AZA all the way up to surgery day and I did. But that was it for me, I really wanted a chance to be med free after all that has happened. When I saw my GI he had two things to say. First that the physical specimen he saw indicated the AZA wasn’t helping inflammation. And, second that jumping to an anti-TNF as a prophylactic might be overkill for someone with my history. So, he agreed with my wish to be med free and I have to have a follow up colonoscopy in June.
Everything considered, I am doing well. There are moments where I don’t feel so great and a few foods have sent me straight to the bathroom, but I have a pretty healthy day-to-day routine and currently enjoy a healthy 1-2 movements a day. In addition to diet and acupuncture, I also smoke medical marijuana and take supplements (Vit. E, Vit. D3, Tumeric and VSL3 probiotic).
I have to say I’m just really grateful for this forum. It is one of the first and most consistent resources I have looked to for help and information. I really appreciate everyone’s perspective and fully believe some of the best pieces of knowledge surface from you all. This is a safe space, check your biases and microagressions at the door.
Sorry for the long post. Again, I hope this can be helpful to others finding their own paths.
So, like many, I have been sick with stomach problems most of my life. I saw different doctors and specialists at times, but for the most part was dismissed as a hypochondriac or oversensitive person. Even by my own family. And, that’s what I convinced myself of – the pain wasn’t anything everybody else also dealt with and I had to just push through it. I also think this is because I never really had blood, just cycles of extreme C and then D.
I can recall 4 specific times that I now know were flares, but with enough time my body always seemed to recover and find remission. During one of them, I was handed an info sheet on IBS and told to leave out spicy foods for 2 weeks.
Throughout my entire life, I had THE ABSOLUTE WORST DIET EVER. Sugar, fats, carbs, animal protein. Repeat. From birth, I drank cows milk and apple juice. Seriously, there are so many photos of me with two bottles. Not that this caused my condition, but I have to say I’m not entirely convinced that diet is unrelated. There is a lot of crap in our food!
Anyhoo, in early 2011 I was under consistent daily stress with a full workload, my own graduate education in progress and my husband also home as a full time student. That spring, we received an opportunity that was a great life move, but also meant a geographical move on top of everything else. I was exhausted.
About June I started loosing weight. I couldn’t eat very much. I was having stomach pains again. The D started. But, of course, I could handle it. I always had before. So I went on that way for a while, not really talking about it. I didn’t want to be a weak soldier after all. I have flexibility at work, so I would just log-in remotely avoiding the fact that I couldn’t leave the bathroom or barely walk at times.
In August, I saw my GP. She congratulated me on my weight loss as I had been carrying some extra pounds. I mentioned the pain and the symptoms I was having. She said probably just stress, told me to get some sleep, and sent me on my way. By September, my husband was getting very upset with me. He was tired of me pretending like nothing was wrong and using my GP visit as an excuse to support this. I made an appointment to see a new GP (this was after our move), but had to wait 3 weeks for the earliest available.
At this point I was vomiting up entire meals right after eating. Laying in bed at night, crying and writhing in extreme pain. But, yes, still trying to say I didn’t need the ER. That was for really sick people. This didn’t go on long though and I did finally go to the ER for help because I couldn’t wait to see the new GP anymore.
Yep, they acted like I was a hypochondriac, too. Gave me an anxiety pill, told me I had an ulcer and sent me home with a number of prescriptions and instructions to keep the GP appointment. G*@*BVGLIJ@UO*VNK@!!!
Finally, finally, the new GP had an intuitive bad feeling. She was very concerned this was not an ulcer and sent me for a CT scan right away. The radiologist found a massive abscess on my appendix and sent me directly back to the ER. At the time my symptoms were nausea, vomiting, cramping, severe distension and LRQ pain.
Almost immediately there are doctors, surgeons, nurses, interns, everyone stopping into my room to figure me out. “Does it hurt worse when I press, or when I release?” I don’t know! It f*ing HURTS! Do I have an appendicitis? Why hadn’t it ruptured? Is it a controversial chronic appendicitis? Operating would probably cause more damage because of the inflammation. At that point I was told it was 99% my appendix and 1% something like Crohns. That was the first time I encountered the word.
They started me on Cipro and Flagyl, maybe one of them was Levafloxacin (or something like that) as soon as I arrived. I also had to start prepping for my first colonoscopy right away. The next afternoon, the GI couldn’t actually complete the scope. I had so much inflammation he was really concerned for the risk of a puncture. I also woke up during the procedure and started screaming profanities at him because it was so painful.
Celiac had been ruled out from previous blood work and so from there I had the super duper special blood test. It came back as a maybe. Each day in the hospital, the percentage of likely Crohns rose and likely anything else dropped. On day 5, when it was 99% Crohns, I convinced them to send me home – at the time I was taking Cipro, Flagyl, Reglan, and Pentasa. Each morning I would get up, vomit, drink an Ensure and take 14 pills. It was absolutely miserable.
Even though I was the same person, now that I had this chronic disease diagnosis I went into a tough depression. It was really overwhelming.
Shortly after January 2012, I stopped all previous meds and started Azathioprine. I didn’t feel like it particularly helped. It certainly made me VERY tired all the time and my hair consistently fell out. I went on that way into the summer and with increasing frustration with my GI. He was assigned to me by the ER and I just stayed with him. He was alright, but he told me to 1. Not think about diet; 2. Stay away from forums; 3. Probably take Remicade, though we never really had a clear diagnostic for anything.
I decided I wanted a second opinion, but more, I wanted a full team of medical professionals who would be my advisors. And, trust me as my own best advocate. I was tired of being told this is an individual disease, but somehow there is a fairly generalizable treatment plan. Through recommendations, I found a new GP with an independent practice and a holistic approach to medicine. With her help, I established a new GI, an acupuncturist, a nutritionist and a meditation routine. Each doctor is independent of the other, no one working in the same facility, and this functions really well for me.
First, my GI. He is wonderful – a M.D. and Ph.D. actively leading research while also treating patients. He is most curious about my symptoms and what I find helping me, in addition to what treatments he has to offer. He recognizes diet affects everyone, whether they have IBD or not and is open to my alternative treatments. When I first went to see him, described my history and frustrations, his plan was simple. Let’s go back to the beginning and see where the information leads us. Started with blood – inflammation looked ok. So we went to a colonoscopy (if inflammation was up, we were going to try tweaking the AZA to get it under control before a scope). When I woke up from the procedure, he was in my room prepared with news. There was a polyp in my colon (removed and later found non-cancerous), a large stricture in my cecum and so many pseudopolyps covering my ileocecal valve that he couldn’t find an opening for the scope to pass through. “Quite frankly, I don’t know how anything is getting through.” He recommended me to a surgeon.
Second, my acupuncturist. I started seeing her, my new GI and the nutritionist all at the same time. She is absolutely wonderful and I feel a huge benefit from this treatment. She actually started out in western medicine and so I share all of my medical news, diagnostic and otherwise, with her. I tried many things, this was the cure to my vomiting. In addition to my ongoing visits with her, she visited me in the hospital after surgery. Right there in my room a few quick needles and my intestines were on the move. The attending nurse just rolled her eyes, but I credit my ability to go home on day 3 to her help!
Third, my nutritionist. We tried an elimination diet as well as a recommended menu she has created for IBD sufferers (though it does include a lot of things many have said they cant eat) which is pretty paleo in nature. Ive looked at SCD, Paleo, GAPS, Gluten Free, FODMAPS, etc. For me, I have found dairy free, grain light (I eat a limited amount of homemade wheat items), sugar free, whole foods are best. I try to eat simply. No beef or pork. Limited chicken. Fish, Turkey and Lamb are my predominant proteins. I have made a full switch to coconut oil. No corn, no soy, no rice. Our juicer is our best friend and I have about 24 oz of fresh orange/carrot/pear/apple juice everyday. No coffee, no soda. We eat out about 1-2 a month and Sunday has become a cooking day to prepare for the week. But this seems to be my secret sauce; I really encourage everyone to listen to their intestines for diet guidance.
And, fourth, mindfulness meditation practices have been really helpful, too. I think that the key to good health is mind and body. There is always SO much happening around us, this ritual is non-denominational and completely about enjoying the present moment as a way to relieve stress.
So, yes. I did see a surgeon. On December 3, 2012 I had a resection that removed 12 cm of small intestine, ileum, appendix and cecum. After the operation, I was told that he also found a fistula, but closed it off; that the abscess on my appendix had attached itself to my back muscle (this had been painful for over 10 years and was diagnosed as a “pulled muscle”. thank god it is gone now); and that a scan of the rest of my digestive tract showed no active disease.
I was in the hospital 3 days and off work for 6 weeks total. I progressed my diet VERY slowly and with good results. I eat whatever I want, including veggies, fruit, nuts and feel lucky that I can. All that and rice is painful, but, hey, who needs it…
My instructions were to take the AZA all the way up to surgery day and I did. But that was it for me, I really wanted a chance to be med free after all that has happened. When I saw my GI he had two things to say. First that the physical specimen he saw indicated the AZA wasn’t helping inflammation. And, second that jumping to an anti-TNF as a prophylactic might be overkill for someone with my history. So, he agreed with my wish to be med free and I have to have a follow up colonoscopy in June.
Everything considered, I am doing well. There are moments where I don’t feel so great and a few foods have sent me straight to the bathroom, but I have a pretty healthy day-to-day routine and currently enjoy a healthy 1-2 movements a day. In addition to diet and acupuncture, I also smoke medical marijuana and take supplements (Vit. E, Vit. D3, Tumeric and VSL3 probiotic).
I have to say I’m just really grateful for this forum. It is one of the first and most consistent resources I have looked to for help and information. I really appreciate everyone’s perspective and fully believe some of the best pieces of knowledge surface from you all. This is a safe space, check your biases and microagressions at the door.
Sorry for the long post. Again, I hope this can be helpful to others finding their own paths.
