I began writing this post as an update to my story and it ended up running significantly longer than I intended. In a nutshell, I've gone through a rollercoaster of tests, procedures, doctors, medicines, and symptoms over the last 5-6 weeks. Right now, I'm feeling quite a bit better in terms of sickness, but have a lot of long-term decisions before me, and am feeling confused and overwhelmed. I'm really hoping someone out there has some insight.
My story began at the beginning of November when, after ~2 years of general GI symptoms and ~2 weeks of extreme pain out of nowhere, I got diagnosed with Crohn's in the ileum and patches of colitis in the cecum and sigmoid.
Right after my colonoscopy and subsequent diagnosis, I was given Asacol. The pain was sporadic, and the Asacol didn't help at all. I called my doctor--let's call her Dr. P--a couple days later, and Dr. P gave me Entocort. This decreased how often the pain came, but it was still frequent enough and equally severe. Dr. P then decided to experiment for a couple days with Flagyl. This did nothing for me besides give me a disgusting, metallic taste in my mouth that made drinking water all but unbearable.
Finally, Dr. P prescribed me prednisone. I noticed some degree of relief almost right away, but I was far from normal. I guess I had expectations that prednisone was the miracle drug and I'd all of a sudden feel great. This was most certainly not the case. If I stuck to a mostly liquid diet, I could actually manage with the 40 mg of prednisone, but I was still in a lot of pain.
One strange thing to note here is the location of my pain. I felt it mostly on the left side ranging from the top (right below the chest) down to the bottom (around my hip). It was usually in different locations of the left side. The strange thing is most of my disease is in the ileum and cecum, which is the lower right quadrant. So why am I feeling everything on the left side?
It took about a full two weeks of being on 40 mg prednisone before I really started noticing a substantial difference. I've now been on prednisone for 4 weeks and have tapered down to 20 mg, and the last 7-8 days have been as good as I've felt in a while. I can eat most meats and fats, homemade yogurt, minimal amounts of cooked fruit, and pureed/juiced vegetables. I'm still having issues with whole vegetables, even cooked.
Over the last few weeks, I saw another GI who I know personally--let's call him Dr. Z--to get a second opinion. This has ended up causing more confusion than clarity. For one, I don't think either doctor likes that I'm seeing another GI. They've both kind of indicated to me that I need to "follow" one of them. Two, the advice they're giving is a little conflicting.
Dr. P is convinced that I have ileal Crohn's disease with patches of colitis. She thinks the best route is to get started on Humira asap. She wants to do a pill endoscopy asap to gauge the level of damage in the small intestine as well (small bowel follow-through has been done and came back almost normal). She believes that since I did not have immediate positive results with prednisone, I would respond better to a drug that works by an alternative mechanism. For this reason, she prefers biologics in my case over immunomodulators. She did mention that had prednisone put me back to normal, she would go for the immunomodulator, depending on whether I had plans to have kids soon or not.
Dr. Z is not fully convinced this is Crohn's disease, and insisted I begin a 2-week course of Cipro right away. The reason for his doubt is the biopsy did not prove it. He says Dr. P did not get a biopsy from the terminal ileum, and that most biopsy samples that were tested did not show any pathology. In one biopsy, there was a granuloma present, which is the only evidence that indicates Crohn's, though it could potentially be due to other conditions as well (e.g. infection). He did say that had he actually done the colonoscopy and seen the condition himself, he may not be having this doubt.
Dr. Z's opinion is to continue on the current medications (prednisone and asacol) for another 4 weeks to let my system settle. After that, do the pill endoscopy, and based on the results of that decide on the next course of medicine. He has indicated he wants me to start 6-MP and to only consider humira if 6-MP is unsuccessful.
Some more diagnostic info:
• Abdominal Ultrasound: I had one in March of this year, and another at the end of October. Both came back normal.
• CT Scan: I had one in June of this year, and another just a couple weeks ago. The first showed a: "tiny hepatic probable cyst; borderline size appendix; and shotty right mid abdominal and lower quadrant mesenteric lymph nodes." This result is what led Dr. P to suspect Crohn's; prior to this it had not even come up in any of our discussions. The second showed: "minimal engorgement of the vasa recta about the sigmoid colon, suggests chronic colitis, although this is very mild." It also mentioned a nonspecific simple cyst on the liver.
• Upper Endoscopy: I had one in May of 2012. This showed a lot of inflammation in my esophagus, stomach, and duodenum, but biopsies came back normal.
• Colonoscopy: I had this in early November, about 2 weeks after the episodes of severe pain began. This showed a "very edematous and inflamed" terminal ileum, and a "patchy Crohn's-like colitis on several folds" of the cecum. It also showed "tiny aphthous ulcers and edema in the lower rectosigmoid" as well. The main biopsy that indicated IBD was from the cecum. This stated: "colonic mucosa with mild acute inflammation, basal lymphoplasmacytosis, and mild glandular architectural distortion; a non-necrotizing granuloma identified." The right colon also contained "benign lymphoid aggregates."
• Small Bowel Follow-Through: This was mostly normal, except a note about: "some transient peristalsis and spasm of the distal ileal loops."
All of that said, right now I'm confused. I'm confused about the diagnosis, how best to go about handling the situation, and which doctor to follow.
I know I want to try to develop a lifestyle that will make whatever this condition is manageable without the need for lifelong medication. I don't care what I have to give up or avoid to do it. I've been on the SCD for about 6 weeks, am currently supplementing with vitamin D, am looking into other supplements like curcumin, and am planning to get some vitamin/mineral blood tests done to test my levels and supplement accordingly. I'm also doing castor oil-based rubs every night, and am even looking into the possibility of MMJ. I'm a big believer in bowel ecology, and so have a cup of 24-hour fermented homemade goat yogurt daily, and plan to hopefully never take antibiotics again.
Over the next 6-24 months, I want to ensure my system enough of a break for it to adequately heal itself. In order to accomplish this, I do think I need to be on medication during this time. The question has become whether to choose Humira or 6-MP. I've already been prescribed Humira by Dr. P and it's been approved through my insurance. It's just a matter of starting it now.
I have a background in biomedical science, so I've spent countless hours and days perusing PubMed for the latest literature on both medications, and have seen many positives and negatives on both sides. The main positive I see with Humira is it seems to be effective fairly quickly compared to ~3 months for 6-MP. From a mechanistic standpoint, it doesn't interfere with DNA, so fertility/reproductive issues are not relevant. I know they say as long as you're off 6-MP for 3-6 months prior to trying to conceive, this is not an issue--and the literature back this up. I don't plan on anything for the next few years, but just the association gives me some pause.
6-MP has been around for over 50 years, so there's tons of data backing it up. Biologics were released for use ~15 years ago, less than 10 for humira, and it's impossible to know long-term safety of a drug less than 20 years old. I've spoken to a number of doctors about the effects of blocking the immune system, and they all seem to agree that biologics inhibit the immune system significantly more than immunomodulators. I could not find any evidence of this in the literature, but it did seem to be a consensus of the ~5 doctors I spoke with.
With regard to choosing a doctor, I like Dr. P a lot and she's followed my case for about a year now. She's great at explaining things like procedure reports, and she's very intuitive in her interpretation and decisions. She bases the decisions not on just what the textbook says, but on the individual case, and I like that. She also just gives me a good feeling: I genuinely feel better after speaking to her. Finally, she seems to appreciate the importance of bowel ecology/flora, which is very important to me. My issue is with communication. I have to call her office and leave a message with the front desk, and I'll usually get a call back within 48 hours from the front desk relaying her response. Occasionally, she will call me back herself.
Dr. Z is by-the-book. He is textbook bottom-up approach for Crohn's. He also doesn't really explain procedure reports if only minor issues are present. As an example, for both the second CT scan and small bowel follow-through, he called me and said all is normal--not a mention of anything else. For the same procedures, Dr. P explained to me the minor issues involved (distal ileal loops, etc.). He does not seem to appreciate bowel ecology/flora quite as much a Dr. P (or I) do. The big plus here is communication. I have Dr. Z's direct number, and can contact and talk to him same day any time. Also, since I know him personally, I do trust him, and believe he may give my case that little bit of extra attention.
If only I could combine the two of them. I would have a super doctor.
In all honesty, I think I would be in good hands with either if them. They're both incredible nice, genuine, and caring. It's just making the choice that's difficult.
I know this post is ridiculously long, so first off, if you've gotten this far -- thank you for reading. I do appreciate the time you've put in listening to my story. If nothing else, it's helped me to write everything down. I haven't been able to do this much over the last couple weeks.
I'm very interested if anyone has any advice about:
• Diagnosis: Based on the diagnostic info I presented, do you think this is Crohn's disease? Is it possible it could be something else? Should additional testing be done before commencing a treatment regimen?
• Treatment: Humira vs. 6-MP. I know there are a lot of threads on the topic, and I've read most of them. Do you think, based on my situation, one is a better idea? If so, why?
• Doctor: Who would you choose between Dr. P and Dr. Z, and why?
My story began at the beginning of November when, after ~2 years of general GI symptoms and ~2 weeks of extreme pain out of nowhere, I got diagnosed with Crohn's in the ileum and patches of colitis in the cecum and sigmoid.
Right after my colonoscopy and subsequent diagnosis, I was given Asacol. The pain was sporadic, and the Asacol didn't help at all. I called my doctor--let's call her Dr. P--a couple days later, and Dr. P gave me Entocort. This decreased how often the pain came, but it was still frequent enough and equally severe. Dr. P then decided to experiment for a couple days with Flagyl. This did nothing for me besides give me a disgusting, metallic taste in my mouth that made drinking water all but unbearable.
Finally, Dr. P prescribed me prednisone. I noticed some degree of relief almost right away, but I was far from normal. I guess I had expectations that prednisone was the miracle drug and I'd all of a sudden feel great. This was most certainly not the case. If I stuck to a mostly liquid diet, I could actually manage with the 40 mg of prednisone, but I was still in a lot of pain.
One strange thing to note here is the location of my pain. I felt it mostly on the left side ranging from the top (right below the chest) down to the bottom (around my hip). It was usually in different locations of the left side. The strange thing is most of my disease is in the ileum and cecum, which is the lower right quadrant. So why am I feeling everything on the left side?
It took about a full two weeks of being on 40 mg prednisone before I really started noticing a substantial difference. I've now been on prednisone for 4 weeks and have tapered down to 20 mg, and the last 7-8 days have been as good as I've felt in a while. I can eat most meats and fats, homemade yogurt, minimal amounts of cooked fruit, and pureed/juiced vegetables. I'm still having issues with whole vegetables, even cooked.
Over the last few weeks, I saw another GI who I know personally--let's call him Dr. Z--to get a second opinion. This has ended up causing more confusion than clarity. For one, I don't think either doctor likes that I'm seeing another GI. They've both kind of indicated to me that I need to "follow" one of them. Two, the advice they're giving is a little conflicting.
Dr. P is convinced that I have ileal Crohn's disease with patches of colitis. She thinks the best route is to get started on Humira asap. She wants to do a pill endoscopy asap to gauge the level of damage in the small intestine as well (small bowel follow-through has been done and came back almost normal). She believes that since I did not have immediate positive results with prednisone, I would respond better to a drug that works by an alternative mechanism. For this reason, she prefers biologics in my case over immunomodulators. She did mention that had prednisone put me back to normal, she would go for the immunomodulator, depending on whether I had plans to have kids soon or not.
Dr. Z is not fully convinced this is Crohn's disease, and insisted I begin a 2-week course of Cipro right away. The reason for his doubt is the biopsy did not prove it. He says Dr. P did not get a biopsy from the terminal ileum, and that most biopsy samples that were tested did not show any pathology. In one biopsy, there was a granuloma present, which is the only evidence that indicates Crohn's, though it could potentially be due to other conditions as well (e.g. infection). He did say that had he actually done the colonoscopy and seen the condition himself, he may not be having this doubt.
Dr. Z's opinion is to continue on the current medications (prednisone and asacol) for another 4 weeks to let my system settle. After that, do the pill endoscopy, and based on the results of that decide on the next course of medicine. He has indicated he wants me to start 6-MP and to only consider humira if 6-MP is unsuccessful.
Some more diagnostic info:
• Abdominal Ultrasound: I had one in March of this year, and another at the end of October. Both came back normal.
• CT Scan: I had one in June of this year, and another just a couple weeks ago. The first showed a: "tiny hepatic probable cyst; borderline size appendix; and shotty right mid abdominal and lower quadrant mesenteric lymph nodes." This result is what led Dr. P to suspect Crohn's; prior to this it had not even come up in any of our discussions. The second showed: "minimal engorgement of the vasa recta about the sigmoid colon, suggests chronic colitis, although this is very mild." It also mentioned a nonspecific simple cyst on the liver.
• Upper Endoscopy: I had one in May of 2012. This showed a lot of inflammation in my esophagus, stomach, and duodenum, but biopsies came back normal.
• Colonoscopy: I had this in early November, about 2 weeks after the episodes of severe pain began. This showed a "very edematous and inflamed" terminal ileum, and a "patchy Crohn's-like colitis on several folds" of the cecum. It also showed "tiny aphthous ulcers and edema in the lower rectosigmoid" as well. The main biopsy that indicated IBD was from the cecum. This stated: "colonic mucosa with mild acute inflammation, basal lymphoplasmacytosis, and mild glandular architectural distortion; a non-necrotizing granuloma identified." The right colon also contained "benign lymphoid aggregates."
• Small Bowel Follow-Through: This was mostly normal, except a note about: "some transient peristalsis and spasm of the distal ileal loops."
All of that said, right now I'm confused. I'm confused about the diagnosis, how best to go about handling the situation, and which doctor to follow.
I know I want to try to develop a lifestyle that will make whatever this condition is manageable without the need for lifelong medication. I don't care what I have to give up or avoid to do it. I've been on the SCD for about 6 weeks, am currently supplementing with vitamin D, am looking into other supplements like curcumin, and am planning to get some vitamin/mineral blood tests done to test my levels and supplement accordingly. I'm also doing castor oil-based rubs every night, and am even looking into the possibility of MMJ. I'm a big believer in bowel ecology, and so have a cup of 24-hour fermented homemade goat yogurt daily, and plan to hopefully never take antibiotics again.
Over the next 6-24 months, I want to ensure my system enough of a break for it to adequately heal itself. In order to accomplish this, I do think I need to be on medication during this time. The question has become whether to choose Humira or 6-MP. I've already been prescribed Humira by Dr. P and it's been approved through my insurance. It's just a matter of starting it now.
I have a background in biomedical science, so I've spent countless hours and days perusing PubMed for the latest literature on both medications, and have seen many positives and negatives on both sides. The main positive I see with Humira is it seems to be effective fairly quickly compared to ~3 months for 6-MP. From a mechanistic standpoint, it doesn't interfere with DNA, so fertility/reproductive issues are not relevant. I know they say as long as you're off 6-MP for 3-6 months prior to trying to conceive, this is not an issue--and the literature back this up. I don't plan on anything for the next few years, but just the association gives me some pause.
6-MP has been around for over 50 years, so there's tons of data backing it up. Biologics were released for use ~15 years ago, less than 10 for humira, and it's impossible to know long-term safety of a drug less than 20 years old. I've spoken to a number of doctors about the effects of blocking the immune system, and they all seem to agree that biologics inhibit the immune system significantly more than immunomodulators. I could not find any evidence of this in the literature, but it did seem to be a consensus of the ~5 doctors I spoke with.
With regard to choosing a doctor, I like Dr. P a lot and she's followed my case for about a year now. She's great at explaining things like procedure reports, and she's very intuitive in her interpretation and decisions. She bases the decisions not on just what the textbook says, but on the individual case, and I like that. She also just gives me a good feeling: I genuinely feel better after speaking to her. Finally, she seems to appreciate the importance of bowel ecology/flora, which is very important to me. My issue is with communication. I have to call her office and leave a message with the front desk, and I'll usually get a call back within 48 hours from the front desk relaying her response. Occasionally, she will call me back herself.
Dr. Z is by-the-book. He is textbook bottom-up approach for Crohn's. He also doesn't really explain procedure reports if only minor issues are present. As an example, for both the second CT scan and small bowel follow-through, he called me and said all is normal--not a mention of anything else. For the same procedures, Dr. P explained to me the minor issues involved (distal ileal loops, etc.). He does not seem to appreciate bowel ecology/flora quite as much a Dr. P (or I) do. The big plus here is communication. I have Dr. Z's direct number, and can contact and talk to him same day any time. Also, since I know him personally, I do trust him, and believe he may give my case that little bit of extra attention.
If only I could combine the two of them. I would have a super doctor.
In all honesty, I think I would be in good hands with either if them. They're both incredible nice, genuine, and caring. It's just making the choice that's difficult.I know this post is ridiculously long, so first off, if you've gotten this far -- thank you for reading. I do appreciate the time you've put in listening to my story. If nothing else, it's helped me to write everything down. I haven't been able to do this much over the last couple weeks.
I'm very interested if anyone has any advice about:
• Diagnosis: Based on the diagnostic info I presented, do you think this is Crohn's disease? Is it possible it could be something else? Should additional testing be done before commencing a treatment regimen?
• Treatment: Humira vs. 6-MP. I know there are a lot of threads on the topic, and I've read most of them. Do you think, based on my situation, one is a better idea? If so, why?
• Doctor: Who would you choose between Dr. P and Dr. Z, and why?
