Saturday, April 9, 2016

How To Select A Colon Surgeon for Crohn's/Ulcerative Colitis


Although, I haven't had surgery yet I always prepare myself for that day and what it will mean for me. I have had Crohn's since 2011 and still haven't required any type of surgery. When I looked online though to find what to look for in a colon surgeon for Crohn's or ulcerative colitis I really didn't find anything great so I decided to write this post.

Doctors honestly go to school for a very long time (college, medical school, residency, and possible fellowship). There are many types of surgeons (orthopedic, plastic, pediatric etc.) who really specialize in only certain types of surgery. You also have general surgeons who really see a garden variety of all types of surgeries. Colon surgeons specialize in correcting diseases of the digestive tract. Colon surgeons even do colonoscopies! You can find a colon surgeon near you by using this website. Your GI or doctor will recommend a surgeon typically (sometimes they can be general surgeons). Websites you can use to find reviews of colon surgeon are RateMDs, HealthGrades, and even Yelp. RateMDs currently has the highest rated colon surgeon in the country is Dr. Bidhan Das in Houston, Texas (here is a list of the top colon surgeons in the United States). If you are curious too you can also use the U.S. News and World Report for GI/Colon Surgery here to see if there is a good center near you. Personally, I am okay with traveling a good way if the provider I can get is top notch. 

To be board certified in just general surgery a surgeon has to perform a minimum of 750 procedures in a 5 year residency with 150 procedures as the chief resident surgeon, 25 cases have to be in critical cases, 25 cases have to be as a teaching assistant. To be board certified in general surgery also requires a 300 multiple choice exam (study guide is here if you are curious what they learn). Not only do general surgeons have to take an exam but have to maintain their skills by getting re-certified every 10 years. You can check if your surgeon is certified here

After general surgery residency surgeons who want to specialize in colon surgery typically do a fellowship for additional training. I found a site that shows all the current fellowship programs for colon surgery. Programs vary in training but for instance at the Mayo Clinic their colon residents perform 150 colon resections, 80 laparoscopic colostomies, and 250 colonoscopies. After residency colon surgeons take a board exam for colon surgery which is broken into two parts. The first part is a six hour multiple choice exam followed by the second part which is three thirty minute oral exams from other colon surgeons.  Clearly once a colon surgeon practice is done with residency and their fellowship they have received a tremendous amount of education and cases regarding surgery. 

 My advice would be select a doctor who is board certified in colon surgery, that seems competent, someone that you feel comfortable with, and who has a good track record of performing cases similar to yours. Actually this article (article links to the actual study here) shows that there is an 80/20 rule in colon surgery where a handful of surgeons do most of the procedures. Surgeons who performed more than 162 resections per year had a 50% lower stoma rate and ICU rates, 30% reduction in risk of complications, and 25% reduction in the readmission rate after 30 days compared to the low-volume surgeons (less than 43 resection cases for the year). The Cleveland Clinic performs over 5,000 colon procedures a year (260 for just Crohn's). 

Questions for Surgeon (write them down/type them so you don't forget them!).

1. What has been your experience with the surgery you will be performing on me (you can ask for the number of cases they have performed)?
2. How many cases do you typically perform in a week?
3. What surgical option will give the best quality of life for the long run?
4. What are the pros/cons of performing this procedure?
5. Will you be performing the operation? 
6. What can I do as a patient to make your job easier? 
7. What is my diet after surgery?
8. When can I resume normal activities?

I typically provide the medical provider I am seeing with a detailed history of major events in my Crohn's timeline history (starting Humira, fecal transplant, flares, etc.-they really like seeing the progression of the patient).

I hope this post is helpful if you are trying to find a colon surgeon for Crohn's or ulcerative colitis. 




Friday, March 25, 2016

Prostate Issues/Crohn's and Sleep

Well not this past week but the week before I had some unusual symptoms (actually not Crohn's related). On Sunday night I kept having to get up to go to the bathroom which was pretty annoying. I didn't keep track of how many times I had to go but it was probably at least 6 or 7 (usually this is how many times some Crohn's patients have to go to the bathroom for other reasons). Anyways, I thought "well maybe I drank too much water" and let it pass. The next night the same thing happened. I was only able to sleep for maybe 4 hours and felt very tired at work (the day seems like 48 hours when you don't get your sleep). I called my internist who I was able to schedule an appointment with the next day (very efficient). I went in and explained my symptoms and his first reaction was a prostate infection. I thought this was somewhat off considering I was only 29 years old and never had this type of issue before (of course stranger things have occurred). So my doctor then did a rectal exam which I had one before in graduate school and passed out. The doctor actually did a good job after I assume the position and it wasn't invasive at all. The doctor then did some blood work and a urine sample (actually I learned that it is better to do a rectal exam before the urine test since then they can see if there is any bacterial is the urine). My symptoms have seemed to pass. I actually did have a similar issue like this back in December 2012 after taking an anti-fungal drug (frequent urination was a common side effect).

Well today is good Friday and I am off today and relaxing on vacation. I feel great and feel as if I got a good amount of sleep an will continue to do so this weekend. This time of year is busy at work with tax season but I think some rest is just what the doctor ordered (I haven't had an actual break since Christmas). Good sleep, eating light, and vitamin D seem to get me in super shape. Now all I have to do is resist the Easter candy.

Tuesday, March 1, 2016

Weight Gain and SCD-Like Diet


I have a scale in my bathroom, however I haven't used it in a while since the battery was low. I installed new batteries and was shocked at what I learned. I am normally in the 160-something range for my weight and was surprised that I had shot up to 171 pounds. However, I wrote a post here about weight gain. However, when I look at myself in the mirror I really don't see much fat (I looked more filled out. Given this I am eating less sweets and brownie sundaes and more fruits, vegetables, and other good things to not only reduce my weight but also try to have less carbohydrates. My last post was about the specific carbohydrate diet and although I think it would be very difficult to subscribe to the complete diet I think just reducing my carbohydrate intake may be beneficial. I have had chicken and cheese plates (no sandwiches) to cut down on the carbohydrates along with some grapes to get fruit. I still remember in my dark days before I was hospitalized thinking eating a banana would save me. 

I would like to lose some weight however right now I am busy working during tax season, studying for an exam at the end of the year, and working out every day is a commitment. I would like to get down to 165 by the end of the month. We shall see were this ends up. 

Sunday, February 28, 2016

Another Night Of Crohn's Cramping...Sleep To The Rescue


On Saturday morning I woke up around 9 A.M. (this was after I went to bed around 4 A.M.). Usually on weekends I go to bed later but typically I fall asleep around 1 A.M. or so. On Friday I wasn't in any pain just watching Netflix and YouTube online. Anyways, since I only got 4 hours of sleep my stomach was cramping a little bit. However, the pain got worse as the day wore on. Last night (Saturday night) I was really cramping and tried to take a hot bath which helped a little bit. My strategy then was to use some ice on my stomach and that seemed to numb the pain a little bit which felt nice. I was able to sleep pretty well last night and fell asleep around 11 P.M. since I was so tired and woke up around 8:30 A.M. this morning. This helped compensate for some of the sleep but I still feel a little tired. I really do think sleep is an important factor in not only maintaining a healthy lifestyle and aiding memory but it seems to really help cramping for Crohn's. 

I see my GI this week for a regular checkup (and also to get my Humira renewed). I will ask him the question about the SCD diet I wrote about in my last post (I will show him the picture too). Overall though I still feel pretty though, although in the back of my mind I wonder if and when I will have my next flare (I use to think about this more, however I stopped thinking about it as much because always worrying about it will prevent me from living the best life possible. 

Saturday, February 20, 2016

Specific Carbohydrate Diet (SCD) Does It Help Crohn's or Ulcerative Colitis?


(The image above shows the before an after photos from a colonoscopy of a patient who used the specific carbohydrate diet)

So for years I have heard about the specific carbohydrate diet (SCD). Initially I was skeptical about it given there wasn't lots of evidence looking at how much it actually impacted people with Crohn's or ulcerative colitis. The specific carbohydrate diet is a very strict diet that is based on the theory that carbohydrates, dairy, and sugar products cause inflammation when trying to be digested. Also it should be noticed the SCD has no dairy or grains so your body somehow has to make up the nutrients for this absence. A book was written about the topic called Breaking the Vicious Cycle by Elaine Gottschall who had a daughter who had ulcerative colitis. After about 10 days her daughter started to show improvements. Within 2 years after starting the diet she was symptom free.

The issue I have had with SCD is that there wasn't really any data outside of patient stories claiming that it worked to support whether or not it worked. What I wanted to see was a before and after of colonoscopy images taken before and after the diet to measure the difference. For years I had been trying to find this from people who claimed they were "cured" (in remission a while).

I came across a case study that was written in the Case Reports of Gastroenterology of a 73 year old woman physician who had ulcerative colitis since 1997. After usual therapies failed she started the SCD diet and within 3-6 months saw improved. Within a year no pain or diarrhea occurred. For her diet she excluded wheat, soy, barley, corn, and limited rice. Her main meals consisted of fish, lean meat, fruit, and non-starchy vegetables. After 2 years of being on the diet a colonoscopy was performed and there was no evidence of inflammation.

Another study from October 2014 in the Journal of Pediatric Gastroenterology and Nutrition showed clinical and mucosal improvement not only after 3 months (75% of patients were in clinical remission after 3 months) but even a year (85% of the patients who remained on the diet were still in remission) after they started the SCD diet. What is interesting is that 10 child patients started the study and only 1 dropped out since they were not able to comply.

A study of 50 patients in the summer of 2015 from Rush University that was done on patients who were in remission showed that 52% of Crohn's patients were able to stop medicatons. What I found interesting is 66% of patients said it took on average about almost months before there symptoms were resolved.

This fairly recent study from November 2015 with again pediatric patients with inflammatory bowel disease showed improvement for both Crohn's and ulcerative colitis. Of course as with all studies the common disclaimer of saying that more studies have to be conducted to assess the safety and efficacy is needed.

 In my own treatment plan I would use it as a back up to a back up plan and just see if it had any effect. Personally I would find it very hard to give up some of the foods I really enjoy: Mexican, chocolate, etc. With that said I have made improvements to my diet from my pre-Crohn's days of adding more salads, vegetables, and some fruit to my diet. Also I would say I am more mindful of what I eat than before I had Crohn's.

My own belief is that a SCD diet can help inflammatory bowel disease. Although, there is only some evidence that it helps I am open to the idea that it could improve the lives of patients with both ulcerative colitis and Crohn's disease. Doctors are not open to this idea of course. I personally would like to see more evidence with more patients. It would be really nice to see more data and studies showing that SCD diet was helpful to add yet another treatment for inflammatory bowel disease. Maybe scientists could even develop a drug to mimic the effects of SCD diet.







Saturday, February 13, 2016

Update: Feeling Better No Flare/Took Humira

So in my previous post and I talked about my mini flare that I had in the prior week. I have been doing better ever since. I had felt some cramping and had a few loose bowel movements but it tended to get better towards the end of the week. My sleep has been pretty good. What is really strange is that this morning I went to sleep at around 4 A.M. and woke up around 9 A.M. and felt a little tired but not as much as I usually do (or the abdominal cramping I have when I typically don't get my sleep. 

It looks like my mini-flare was thankfully was short lived. I haven't woken up in the middle of the night for any bowel movements. Tonight I took my Humira shot and thankfully nothing leaked. I would estimate that pretty rarely do my shots leak. Thankfully I am feeling good and intend to keep this up! 


Monday, February 8, 2016

Mini Flare, Super Bowl, and Humira


So I have had a little cramping lately and it isn't too bad (more of just being annoying). This morning I woke up around 1:30 A.M. in some pain and had to use the bathroom for a bowel movement. I honestly don't remember much but remember going back to bed and feeling a little better. Anyways, I think the pain stems from the fact that the last time I took Humira it did leak somewhat (this is rare but can happen-more likely when I have to inject the stomach area). Usually it takes a few days for Humira to kick in. Since I didn't as much sleep as I want I am heading to bed early tonight and took a hot bath before to relax. Last night was the Super Bowl and I really enjoyed watching the game but probably had too much to eat. For dinner tonight I just some chicken noodle soup and a light chicken sandwich to ease my stomach. Generally, my mode for mini flares or flare is sleep, bath in hot water, and eat well. By eating well I mean not eating anything greasy. I like to think of the stomach/intestines as a brown paper bag and think about the food I consume. If the food I consume would leave a grease mark in the brown paper bag I probably should avoid it but if not then it is okay (note this is not scientific by any means). 

Hopefully lots of sleep and staying hydrated will help me out. At work today I was fairly tired and by 2 P.M. was ready to head home (but I stayed until 5 P.M.). Usually my mini-flares can be solved with a fair amount of sleep. I am looking forward to taking my next Humira shot and hopefully finding some relief. Although, I have some minor pain I am grateful for my general good health and well-being.