You know what they say…you can’t keep a good man down! Well, about six months ago we began down a path that felt like it just might do our “good man” in. I have obtained permission to write this account of Brad’s illness, with the express purpose of sharing with y’all what we experienced and how we are healing. I say “we” because as you all know, an illness in your family affects everyone in a variety of ways. A large part of finding the path to healing involved learning from others (mostly strangers on-line) and we are trying to pay it forward so to speak.
Let’s start at the beginning. In July, after we returned from a trip to the VA mountains, Brad began experiencing digestive/intestinal issues, and given the sudden on-set and relatively mild symptoms, he attributed it to a possible stomach bug, virus, or a over-indulgence in a food, to which he must have been sensitive. After a few days he began eliminating some possible dietary offenders, such as dairy and gluten (including beer). Neither food group was a large part of our diet, but it was worth a try. With no relief from these actions, he removed coffee. Still, the intestinal discomfort continued. We were nearing our departure date for a two-month cross-country trip with the Airstream. As the time got short, we discussed seeing a Dr, but felt that it was not something we could remedy effectively with medication, since we didn’t know what was causing the issues. Brad and I are both very big on trying to at least have a clue as to an issue we may be dealing with before seeking medical advice, if possible. To say that excitement about our trip might have clouded our decision-making would not be a stretch!
In true form, Brad was consistently researching possible offenders and causation for these symptoms. With his departure imminent we discussed what he could eat while heading west to meet us in Denver three days later. “Road food” would not be an option. We determined the blandest diet possible might be helpful. By this point he had eliminated many foods we typically ate from his diet. I made a large container of chicken and rice. He had bananas, eggs, and a few other food options loaded up and off he went. Suffice it to say that this regime did not offer relief either. His symptoms were worsening somewhat, with multiple trips to the bathroom, beyond the normal routine, and a lot of discomfort after eating. His research continued. Some foods seemed to create a quick, undesirable reaction, while others were considered ok one day and questionable the next.
After Brad picked us up at the Denver Airport, we set out on our journey. I feel confident in saying that had we not been in beautiful places, having wonderful experiences, Brad’s demeanor would have more accurately reflected his discomfort and unease at knowing something was wrong, but not knowing what it was. He was a trooper! I began to notice he would tire faster and attributed it to elevation, now I believe it was his condition more than anything. He food options continued to shrink and he wasn’t finding much relief. He research continued relentlessly. By the time we were a little over 2 weeks in to the trip his frustration increased, he was tired a lot, had lost several pounds, and every time he thought he might be on to something it turned out to be a dead-end. Eating out was not an option at all, getting enough calories was a big challenge, and we didn’t know it at the time, but he was also anemic. I did not know how bad it had become physically for him because, as many men do, he kept the gory details to himself. Suffice it to say, the blood loss and weight loss (close to 15 lbs by this point) made the decision for us…we had to come home and deal with this situation.
Some of the possible causes Brad speculated on included: dairy/gluten intolerance, SIBO (bacterial overgrowth in the small intestine), Candida overgrowth, low stomach acid, parasites, C Diff., etc. One thing we knew for sure was that the symptoms had started to drive the bus and we HAD to get them under control, whatever the cause. I was in la-la land somewhat about the whole thing, for much of the time leading up to coming home. Part of that was due to not knowing the full-extent of what he was dealing with, and I was frustrated that it was causing us to end our wonderful trip that we had worked so hard for…I knew Brad hated that as much as I did.
Once we returned home reality really started to set in, and it scared me. We lucked in to an opening for a colonoscopy in less than 2 weeks after we returned with the best Drs we knew of, at that time, for GI issues. In the meantime, Brad had seen a general practitioner for basic blood work and to rule out parasites and C. Diff as possible causation. Our speculation at this point, based on symptoms over the previous two months, was Ulcerative Colitis/Crohn’s. He had every single symptom. The night before his colonoscopy I forced myself to look up the symptoms for colon cancer. He had every single one of those symptoms too. His age, coupled with the sudden onset of his symptoms made that look way too possible. I didn’t know it, but he had looked them up as well and we were both holding our breath as we headed out the next morning for the Drs appt.
I felt a little bit like I was in the Twilight Zone when we arrived at the Drs office and checked in. I realized that the doctor Brad was seeing, and the facility where the procedure was taking place….this was the same place/practice my parent’s experienced when my dad was diagnosed with pancreatic cancer 8 years ago. Ten months before he died from it. As that knowledge settled into my brain (as Brad’s too I’m sure) it was a bit overwhelming. They called him back, we met the doctor, and gave him the 30 second run down of the last 2 months. They hooked Brad up to the IV and off they went. It didn’t take as long as I had expected, and they called me back to the recovery area. Brad seemed coherent and normal, but he told me later he remembered very little of the time and had no recollection of talking to the Dr.
The first piece of information I wanted was whether or not it was cancer. I got a NO on that and was so happy that I didn’t even flinch at the Crohn’s/Colitis diagnosis. His advice: this is mostly/likely genetic, you cannot control it with diet, and you will need to take the meds (steroids/anti-imflammatories) to deal with the symptoms. OK. So it’s not cancer and that’s awesome! Now I am reading the discharge paperwork and it says to resume your normal diet…? How can that be? With all of our research and experimentation Brad had actually achieved finding about 4 foods he could eat that did not seem to aggravate his system. Why in the world would he go back to eating anything he wanted when we KNEW that was a problem?
Both being wary of prescriptions, especially steroids and anything that would mask his symptoms to the point where he would eat foods that his body did not want right now, we opted to delay for as long as possible (and hopefully forgo completely) the use of the medications. At least now we had some answers to work with. Research resumed and the limited diet remained. His symptoms were somewhat controlled but not gone. What had become tremendously helpful was the use of a food/bathroom visit log. It allowed him to track his progress and see a new supplement or food he introduced was a possible offender as he tried to very slowly expand his diet and healing efforts. One thing we determined was that leaky gut was a major factor and allowed for his body to react to foods that previously never bothered him…nearly everything in fact. This permeability of the gut lining needed to be healed. He began a supplement of Sodium Buterate and decided to seek out the services of a neighbor of our’s who specializes in treating a variety of conditions holistically and with herbal supplements, Dr. Steve Gangemi. This was a little beyond Brad’s comfort zone, but I encouraged him to give it a shot. He did not have anything to lose. We were managing symptoms but barely, and did not want to have to resort to the meds.
One of the interesting aspects of this experience, that I think few people know about, is that with a diagnosis like this, there can be a tremendous feeling of alienation for the sufferer as well as family/significant others. I hated watching Brad go through this struggle every single day, getting excited about the possibility of something working, only to see his disappointment and frustration when it didn’t. He loves food and I love cooking for him, but that was pretty much gone. No more heading out on Friday night to have dinner and a break from the kitchen. Traveling to be with family felt like too much of a burden to put on others with all of our restrictions and separate cooking requirements. Hanging out with friends and cooking dinner, sitting around the table with a beer or glass of wine was not an option. And worse of all, staring at them from the shelf were the prescriptions he wanted to avoid…but he knew if he couldn’t get things under control that it might be necessary.
Working with Dr. Gangemi was the trick, and the two of them are quite the team! Brad maintained his dietary restrictions, while adding in the recommended supplements to address what appeared to be a bacterial infection in his intestine. It has been a slow process, but here we are a few months later and Brad is feeling so much better! He did not take a single one of the steroids or anti-inflammatory meds, he stuck to his diet religiously, he added in healing supplements, and most importantly he LISTENED to his body. We are still using the AIP (autoimmune protocol) diet as a guide – it has been very helpful and really worked for us/him. Brad’s energy level is back up, he has gained back the weight he lost, and feels better now than he did before he got sick. Go figure!
We have to be very diligent. The “take-home” here though, the message that has been reinforced to us over the years with Kimberly and now Brad, is that food can heal – your body can heal from the damage we inflict on it in a variety of ways – but you CAN do it without heading down the always slippery slope of meds and side effects. If we had not trusted our own abilities to deal with this – he would have been on medications for the rest of his life, dealt with “flare-ups”, and generally never been as healthy as he was again. I have to say – it is almost criminal to me that those we trust in the medical profession do not INSIST on knowing more about the role of diet in every aspect of our health. Trust yourself and your body…oh, and of course, find a good partner to guide you through! Thanks Steve!!