What was the time line, was your unhealthy experience after? If you overindulged in simple sugars it can create an overgrowth of bad bacteria in the small intestines and very few of the therapeutic treatments will ever make it to that large intestines to have effect, that's why prevention is so important. It's very hard to reverse the gut once it goes down that road other than completely wiping out and rebuilding which is also even harder.
Once the gut starts going down that road, you are right, it's difficult to rebuild. But you can rebuild gut flora once stable much easier then you can rebuild an entire intestine due to dragging feet with more aggressive treatment as inflammation and ulceration is the lesser evil of the disease.
Crazy gut flora has been an issue for me and rebuilding/ preventing is pretty much where I've been all along, but treatment of life threatening crohn's symptoms such as abscess trumps re-balancing gut flora on my priorities list and complications such as severe stricturing can highly influence things - more so then probiotics.
My doc has explained it to me like this: crohn's sucks, it can be managed, treated and enter a state of remission providing allowing for a fulfilling and normal lifestyle, however you have an acute case and symptoms are severe which can/ will most likely lead to life threatening situations and/ or require surgery at some point. My experience with a fairly difficult case is why I will stand behind physicians as a whole. I have had excellent and not so excellent experiences with my GI docs. My current and I have established a very trusting and open relationship when it comes to my care. When I want to give up and have been seriously considering just starting to hack the worst of it out, she lays it all out for me. I'm along the lines of its best to hold on to your guts and maintain what there is as best as possible and prevent future damage to the best of my ability we've worked well together. She is always curious to hear my experience with probiotics/ supplements/ yoga/ meditation/ weed but can't provide medical insight as none of those things are her forte. Everything from stress to environment to consumption has physiological effects, but that doesn't mean the information is viable or complete enough to provide information to me as a medical professional. I think for many doctors there is separation between what they will say/ provide professionally and the depth of information, knowledge and opinion they hold personally. Their duty/ vow as a doctor makes where to draw that line difficult.
Here's my treatment/ disease/ management history from past to current. It's long, but I tried to condense as best as I could.
Childhood: organic home-grown vegetables, grass-fed meats, all home cooked meals, nuts, seeds etc. for snacks as a year round competitive athlete. Home canned veggies/ fruits, etc. during winter months - limited known exposure to plastics/ metals. Didn't know what a doughnut or cookie was till starting school.
Around 9 years old started experiencing what I now recognize/ call extraintestinal manifestations and no doctor or specialist could pinpoint what was causing the swelling, inflammation and pain in feet, ankles, and lower legs. Started becoming clear that my development/ growth was slower and behind that of my peers. Had minimal signs of puberty even by 15.
2005-2008: Extreme bleeding, pain, fatigue, etc. but as a teen and being embarrassed I continued with sports/ school until my mom kept me home suspecting the flu... turned out my organs were on verge of shutting down. Hospitalized at 15 for 2 months (spent 16th b-day in hospital) and was diagnosed with U.C. pursued treatment options from lowest risk to higher risk as nothing helped reduce the inflammation or help slow intestinal damage until my first round of loading doses of Remicade in hospital, did not pursue Remicade further at that time since everything calmed down and I was gradually able to get off of Prednisone and finish high school. Diet was as tolerated with a goal of maintaining weight. Diet manipulation, even following work with a dietician/ nutritionist always resulted in severe weight loss (think 10 lbs a week loss when already always underweight) and was deemed highly dangerous/ deadly. Mom worked with diet and we found I could tolerate high lean proteins, nut butters, skinned foods, no seeds, no nuts, no fried foods, no chocolate, no high-fat dairy, some well-cooked veggies and fruit, Ritz crackers, pudding, pancakes/ waffles etc. etc. Pretty much the suggested flare diet with additions as discovered through elimination diet and reintroduction with time/ observation.
2008-2009: Daily probiotics, multivit., vit. d, calcium, B vitamins. Ensure drinks to help maintain weight. Didn't do so well freshman year while living in dorms/ required to use the cafeteria for meals. I do think the flaring and severe pain during that year was heavily influenced by poor diet. Began researching and asking more questions of my doctor, discussing treatment plans - not just what we'd do right then, but what options were if I could hit certain goals.
2009-2010: Transferred schools and lived in a sorority where diet concerns were addressed and followed by the house cook. Limited fiber, high protein, very little raw or processed food. No seeds or nuts. No ice cream/ desserts etc. because it simply wasn't provided. Kept up with treatment but only thing that seemed to work to keep crohn's in check (bleeding, urgency, frequency, pain) was prednisone with maintenance meds (I dont remember what it was... 6-MP maybe? Pills, not yet on TNF blockers). Was doing better then previous year but as I think you might be noticing... there's never been any spectacular break for me - I just continue with life regardless as best as I can. Still struggled with repeat infections (strep-throat, colds, the usual when a lot of people come together from all over). Severe infection causing 105 degree fever led to hospitalization and broad-spectrum IV antibiotics Spring 2010, withdrew from semester and returned home for healing. Upon colonoscopy and endoscopy found severe stricturing through the small intestine (explaining inability to maintain weight and the chronic malnutrition) and have never been able to get complete imaging of it in addition to the usual inflammation/ ulceration of large intestine, new inflammation found at site of ileum. Discussed surgery as I still had a Uc diagnosis but Doc. officially switched to Crohn's and began second loading doses of Remicade because she did not think it would solve my case as it does for some. I am grateful still today for her making that call as I was ready to start hacking away myself. Was still taking my probiotics and supplements. I'm a type A personality and don't do anything half-assed, that has included my health.
2010-2012.
Best "3" years. Fall 2010: switched from Remicade to Humira for treatment. Kept Asathoroprine as maintenance/ combo med. after 6 months due to having to travel 2.5 hours for infusions and it just being inconvenient in college. Best I have felt since I can remember. Was able to participate in sports again, but I still hit a point of fatigue far faster then even the least-fit individual. Was able to go out and enjoy the occasional party, did enjoy smoking weed through college especially before meals, but no major changes in diet - was tolerating soluble fibers so I was eating small salads again. Moved out of the sorority at which point I was able to afford 125/ month in groceries: still skinned everything and stuck to the fruits I generally tolerated like apples, peaches, pears etc. My budget was tight so I focused on meeting my nutritional/ caloric needs not my wants and eventually dropped probiotic supplements - figured I was still getting them from the keifer and yogurt I consumed daily. High focus on protein and carbs to maintain weight. Ice cream was my guilty pleasure on the way home, as mentioned previously. Other sweets were treats enjoyed at special occasions and when visiting home on holidays. so, maybe like once a month :yrolleyes: Was off of prednisone until 2013.
Spring of 2012 Humira started becoming ineffective, disease symptoms began to increase (dropping weight, pale, anemic, etc.) but severe symptoms were still being held at bay. Graduated college Winter 2012 underweight, pale, exhausted, and with the help of understanding professors who were willing to work with me those final 2 semesters so I could do a lot from home. At 5' 6" I have not been able to maintain above 100 lbs. apart from this 3 year period during which I stayed between 108-125 until things began spiraling out of hand despite ALL efforts.
Spring 2013-Spring 2014: Began probiotic supplements again due to finally having an income. 2 weeks into starting my job in a law office post-graduation I began to experience extreme pain, exhaustion, and heavy intestinal bleeding in the large intestine.
Had been a change in diet: I had started eating oatmeal in the mornings. Cut out oatmeal and saw a decrease in blood/ pain but by July I could not walk due to reappearance of extraintestinal manifestations such as I'd experienced w/o explanation prior to my initial diagnosis. Tried following gluten free then scd specifically but continued losing weight (7 lbs in 1 week) and was unwilling to risk any further weight loss. Had not used pain killers etc. since initial hospitalization and morphine due to the withdrawals and addiction that I developed/ struggled with while in hospital, but became necessary due to inability to sleep/ function from extraintestinal pain.
December 2012, kept working with Humira/ Asathoroprine due to having already worked my way through everything else trying to hold out until Cimza was approved. Added prednisone which helped decrease extraintestinal manifestations but they continue to persist to varying degrees still today. Discovered an intestinal mass 50 cm into the large intestine roughly the size of a golf ball, tests came back benign. due to poor physical wellness/ stability surgery for the mass was not recommended. Severe VIRAL infections including catching hand/foot/mouth from a bunch of toddlers (it is generally only seen in young children), colds, sinus infections, yeast infections/ BV back and forth, etc. Maintained use of probiotics, keifer, and plain yogurt, multi. vit, vit. D and calcium. Spring 2014 quit my job and applied for disability.
By June 2014: First attempt to move to CO. Stopped Humira and started Cimzia. Discussed the approval of Entyvio as a possibility since likelihood of Cimzia working was low after failure of Humira. No major changes in diet: chicken, turkey, eggs for primary sources of protein and grass-fed beef only. Simple carbs: white rice and sourdough bread. no legumes or whole grains, no seeds, no skins, no nuts other then nut butters. No fried foods, no ice cream/ desserts unless you count fruit with peanut butter or "fried" in coconut oil with honey and cinnamon etc. Added coconut oil to diet for calories and supposed gut benefits (I like it whether it helps or not, so that's a plus) Began drinking smoothies to help get down that Ensure to boost caloric and nutrition intake and keep spinach in my diet for the iron. Same bunch of supplements etc. Began using essential oils to help manage pain and keep calm but continued to lose weight, began experiencing SEVERE upper GI pain to the point of passing out periodically and occasionally vomiting blood - this was new for me. Upped prednisone from 30 to 50mg. Began vaping weed which helped dull the pain and increase interest in food, was able to maintain 100 lbs.
September 2014-December 2014: Determined to be steroid dependent as no other treatment was viable/ working at this time. Colonoscopy/ endoscopy showed ulceration in and just below stomach in upper small intestine (never present here before) and an anal fissure with scaring from what appeared to be old fissures that had healed. Intestinal mass was still benign. Returned home to live with my mom due to no longer being able to maintain care on my own and keep working with the GI I trusted. Stress levels lowered due to the help I was receiving at home. Maintained diet as tolerated (as well as meditation and what yoga I could manage as I had since starting both Fall 2011) - lots of BBQ'd foods w/o any spice etc. was eating more fish (tilapia and salmon).
Dropped Cimzia and began Entyvio due to zero improvements and continued difficulty managing minor infections (primarily yeast infections). Began seeing improvements on Entyvio and was able to taper prednisone back to 30 mg. November 2014, follow up colonoscopy showed some decreased inflammation of large intestine, however upper GI pain was still severe and was continuing to experience low grade fevers. Did first MRI in ages to see if something was happening in the section above ileum (mid-lower small intestine) that we'd never been able to image due to stricturing. MRI revealed what appeared to be an abscess due to a large accumulation of abdominal fluid. Began Flagyl and another antibiotic and saw minor improvement on a follow up MRI's over 6 weeks. Tapered prednisone to 25mg before bleeding/ more severe symptoms showed back up.
Jan. 2015-Present: Met with a surgeon who essentially told me that I need surgery at some point, but if we were to go in now I'd lose at least 90% of the colon since the two concerns (fistula and intestinal mass) are at opposite ends of my colon and my current frailty puts me at high risk for infection, complications, and other concerns.
Continued follow-up MRI's for monitoring every 4-6 weeks until March.
Stopped antibiotics during a period of time during which fever spiked.
In March abdominal fluid still remained but it was far less then before.
Stopped antibiotics due to intolerance of flagyl (began experiencing peripheral neropathy in feet/ legs). One last MRI in April to check status without antibiotics and while fluid remained there had been no changes, I wasn't running a fever any more, and that technician's opinion was that it was a fistula that had become infected and was on verge of abscess, not full blown and could potentially heal/ settle further.
GI doc. informed me that we were at the end of the line treatment wise and it was up to me whether I wanted to hold out and see if Entyvio would help things further or go ahead with surgery. I chose the Entyvio but asked about Remicade since I'd never technically failed it like everything else - it had just been too inconvenient. Not to mention it's been after Remicade loading doses every time where I've noticed the biggest relief from symptoms and improvements in energy levels/ overall sense of wellness. She was surprised by this idea, but figured it was no more risky then surgery and not a bad thought.
In May there was still no further improvement from Entyvio and I was still unable to drop below 25mg of prednisone without repercussions. Took anti-body test to determine whether or not I'd developed antibodies to Remicade from past loading doses/ courses of treatment (still waiting on results since they accidentally froze the sample and I had to go in and get redrawn).
In the mean time while waiting on insurance to approve and for me to return to the area since I was visiting my significant other who had remained in CO since we'd initially moved June 2014 C-Diff infection developed from the broad-range antibiotics despite heavy probiotic support during and after the round of antibiotics. I thought it was Crohn's flaring hard again but upon telling my doc I was feeling "extra crohnsie" with frequency, high mucus, and deep gut pain she tested due to the round of antibiotics I'd been on and it came back positive for c-diff toxins.
June: Constant low-grade fever and dropped from 94 lbs. to 82 lbs. in 2 weeks. 1 round of vancomycin and was feeling much better and back up to 95-98 lbs, but c-diff symptoms returned after about 4-5 days. Monday 6/29 recieved my first loading dose of Remicade for the third time with no reaction to note for better or worse and I will finish my second round of vancomycin today. now holding 102-10 lbs., eating well (same diet as I eat what I can tolerate, just my quantities have improved immensely), with intentions to begin attempting to taper prednisone again following my third loading dose. The goal is to get me off of prednisone since I've been on it so frequently and this last round has now lasted over a year and a half at moderate dosing, to see no bleeding or ulceration, and hopefully see healing of the fistula from Remicade (most likely treatment to achieve this), and eventually do surgery but only need to take out the intestinal mass at this point leaving the rest of the colon.
:drink: Cheers to those who read through it all.
there was a time when I wasn't eating any nuts either and I relied on seeds and supplements to get some of those nutrients. There are ways around it without starving your body-I promise! 
