It’s been about a month since I was released from hospital, so I thought it’d be good to write a general update on my progress, and my thoughts and conclusions so far, as it feels like a bit of a milestone.
There are still quite a few things that I plan to write separate posts on; I realised pretty quickly that I was channelling all my restless, hyperactive tendencies into writing this blog as I wasn’t going to work, but I was off work so that I could heal, rest, and slow down…. So I backed off the blog a little; the mind can be sneaky!
So those posts will come in their own time, but I’ll link to them here when I write them – I want to write separately about Craniosacral therapy, my initial Ayurvedic consultation and prescriptions, as well as my experiences with the NHS doctors and surgeons. Oh, and about pharmaceuticals. I have a lot to say about the pharmaceuticals…
In the meantime, how am I doing?
Aside from the continued-clearing up of the infection from the abscess, and the ongoing healing of the fistulas, I’ve been pretty much symptom-free since recovering from the surgery to remove the abscess. Those steroids I was pumped with were strong.
Now that I’m down to 10mg of Prednisalone, compared to the 40mg I left hospital with, I’m aware that any symptoms that warn of impending flare-ups may become more noticeable, which is a good thing – I can’t tell what’s good for me and what’s not at the moment – it’s like trying to tell if I need oil in my car, when the dashboard lights are broken. And I can’t exactly open the bonnet and have a look. Well, that’s what the surgeon would like to do, but I prefer the less invasive method.
So I’m going to wean myself off the ‘maintenance dose’ of steroids, and will see how I go from there. I’ll then at least be able to test for food intolerances.
The NHS doctors are the only thing I’ having real trouble with on this journey. I’ve found reams and reams and reams of anecdotal evidence to show that it is possible to go into remission with Crohn’s, and stay there, if you manage your diet, and take care of balancing gut bacteria, yeast, and parasites (depending on what’s triggering it for you individually).
Yet, still, the doctors tell me that it’s incurable, and there’s absolutely nothing I can do to reduce the risk of it coming back. It’s pretty clear to me that the infection from the abscess/fistulas can be healed by Oil of Oregano, or Chinese or Ayurvedic herbs, or Wheatgrass cream, but when I met my surgeon, his first recommendation was surgery to cut the fistula out. I asked if ‘Plan A’ was to heal the fistula first, to which he laughed, and said, “of course, but…”. When we asked him if there was anything at all we could do to help with the healing, he said “No, absolutely nothing. There’s only one God, and he doesn’t like anyone to mess with what he’s doing – leave him to it.” I don’t know how to respond to that, to be honest. Thank goodness for the internet and well-informed friends.
As for the gastro specialist I’m seeing, he thinks the idea of diet or parasites having anything to do with Crohn’s at all is ridiculous. In fact, the very first thing he asked me when I saw him was whether I’d gotten rid of the notion that certain foods might be triggering the condition. I assured him I was eating normally again, and he was very relieved, with a chuckle.
He then proceeded to advise me, again, that I had to go on a double-cocktail of immune suppressants, as soon as possible; otherwise the Crohn’s would flare up again, and I’d probably need to remove part of my colon.
I’m not going to go on these immune suppressants. The side effects are just terrible; they don’t always work, and have a lower success rate than managing diet alone. I’m staying with my initial instinct of dealing with this naturally, at the root cause, first. The drugs are a very, very last resort; which is how they were intended to be used by their manufacturers.
My GP, on the other hand, has been fantastic. He absolutely understood my reluctance to go on the immune suppressants, and said that they’re an easy no-maintenance way of inducing remission; some people want the easy way, and so that’s why they’re the first port of call. However, he did say that if you have the energy and the time and the inclination to manage the healing without the drugs, there are many people who have managed that successfully too – I felt like he respected my decision, and was supportive in that – I can’t say the same for the other doctors I’ve met with so far, but am considering asking my GP to refer me to specialist who has a more integrated/naturopathic/holistic view of things. There must be one out there somewhere…
I’ve had lab tests done to check for Toxins in the body, Yeast/Candida issues, and Parasites. These are the main things that are known to be triggers for Crohn’s imbalances, aside from stress, and of course food intolerances, which I can’t do until I’m off the steroids.
I’ll write a separate post about these when the results come back in a couple of weeks.
My energy is so much better. Where a month ago, it was a serious effort to get off the sofa for a lot of the time, now, I feel I have enough energy to do general tasks around the house, and have been able to go into work a few times in the last week for a couple of hours ; I did one longer stint, but was totally wiped out afterwards, so my energy’s there, but gets used up easily on anything that requires a decent amount of concentration.
I was down to exactly 8 stone (my ‘normal’ weight is somewhere between 10 and 10.5 stone) a few days after getting home – that reading on the scales out me and Jeannie into a bit of a panic mode, and we started really taking the diet part of my life seriously . I’m happy to say I hit the 9 stone mark this morning, which I’m really pleased about, I’m still thin and underweight of course, but I’m a slightly-less-scary underweight now, and I’m putting on the weight much more quickly than I imagined, which is great.
Emotional wellbeing and spirituality
As the only thing that’s 100% clear to me at this point is that stress is the key trigger for me when it comes to Crohn’s flare-ups, this aspect is just as important as the diet and the other things I’m doing.
The EFT has been a huge help with this. We’ve been able to go very deep, finding the underlying beliefs and conditioning behind lots of my stress, anxiety and hang-ups. And the great thing about EFT is that once you identify a particular root belief or held-trauma or past event that created current conditioning, you can release it there and then. I feel hugely lighter and less anxious after several EFT sessions.
The underlying stress that was my baseline existence for as long as I can remember – so normal to me that I didn’t even register it as anxiety or stress – is much less, and often not there at all. I feel more confident and less vulnerable than before. I also am learning to trust my gut feelings, my intuition, and to have the confidence to follow through on these decisions.
Interestingly, over the last week or so, the anxiety has returned, on and off, along with an increased irritability. I’ve realised after some thought and research, that this is a side effect of the steroids, which I’m weaning off. I’ll talk about that side of things more below.
That aside, I’m learning more about myself, my conditioning, and the way I work, and am learning to catch myself if I get triggered into a stress-response, or find myself feeling frustrated. When I can catch myself, I don’t get pulled into the stress, and can simply step aside from it. The EFT also means that the triggers are fewer, so it’s less and less of an issue. In the few times I’ve gone into work for meetings etc, things that would have previously triggered me into getting cross have just floated past me – that’s great for me, particularly as it was work-related stress that triggered this whole Crohn’s flare-up in the first place.
I generally live my life in my head; I’ve very much seen this as part of this journey, and the Craniosacral therapy just pulls me back into my body again, and leaves me very still; it’s wonderful. From this still, grounded place, it’s easier to notice when I’m pulled out of this place, so that I can bring myself back there. This is really helpful for my overall wellbeing, as well as for stress reduction.
Next, now my energy is higher, is to begin Tai Chi and Yoga classes. They’ll be a challenge at first – I’ve been doing some basic Yoga asanas in the morning – following classes on YouTube – and they’ve been quite tough to follow, as I’m still pretty weak, but I’m sure that keeping up with it and joining a proper class will help me build my core strength and balance. The Tai Chi should help me with grounding, as well as overall balance.
There’s also meditation; Ive been enjoying getting up pretty early in the morning, lighting the fire sipping some ghee and ginger in warm water, 20 minutes of yoga, and then meditating for 35/40 minutes.It doesn’t happen every day; I’m not very good at the discipline side of things, so if I go to bed too late, it’s all over the next morning. But when I do, I really enjoy it; the stillness and silence that I’m reminded is always there carries through into my day, which part from anything else, is very good for stress. I’m sure I’ll write more about meditation and spirituality in the future.
The diet question has been probably the most difficult to work out, as there are so many recommendations, and although there are many consistencies, there are also some important-seeming contradictions.
I found myself writing so much about the diet question, that I’ve moved it over to a separate blog post, which I’ll link to from here once it’s finished.
It’s enough to say for now that there I’m in a bit of an unknown space when it comes to food intolerances; I don’t know if I have any, although a huge number of blog posts about Crohn’s and diet suggest that it’s almost inevitable that I do. I can’t do the intolerance or allergy lab tests until I’m off the steroids; the steroids are blocking the symptoms of the imbalance, so I can’t tell what foods my body has a reaction to until they’re gone. My hunch, for the record, is that if there’s a diet-related issue going on inside, then it’s a yeast/candida thing, as opposed to a good intolerance thing. All shall be revealed in time.
In the meantime, I have a decent eating routine that feels right – which is all I have to go on – it’s a combination of Ayurvedic diet, Jini Patel Thompson’s protocol, and the Low Residue diet. Which looks basically like:
- Veg from the Low Residue Diet list (although lists differ, depending on where you read them)
- The occasional fish, usually line-caught Salmon, Cod, Halibut, Trout ,and occasional Tuna.
- Some egg yolks, often raw.
- No dairy except for:
- No processed foods. I read somewhere “Don’t eat anything with an ingredients list”.
- No refined sugar. I have some honey, and some Jaggery as a sweetener if necessary.
- Very little wheat. Most people say I should avoid wheat altogether, as lots of people have an intolerance to it, but I have never noticed a reaction personally. That said, I hardly eat it – but if we’re out, or Jeannie’s making one of her incredible raw cheesecakes, it’s easier/happier to just say OK to the quiche or pie. Being unstressed about all this diet stuff seems to me to be as important as the diet itself sometimes, I think.
- No other grains except for white basmati rice. Again, lots of blogs say don’t have grains at all, as if the body is intolerant of gluten (in wheat), then it can sometimes get confused with the proteins found in grains, and treat them the same as the proteins in gluten. However, white basmati rice is recommended in the Low Res Diet (as is unrefined wheat), and I’ve been recommended Kitchari and Rice pudding from several sources, and I seem to be doing very well on it so far. Ah, yes…
- Kitchari, on a daily basis, sometimes a few times a day. I’m eating it a lot, and it feels and tastes great.
- Rice pudding with coconut milk or almond milk (although sometimes just with water, as the pudding itself turns it into rice milk), Cinnamon, Cardamom, and honey. Love it.
- Bone broth, previously from Chicken, but now made from pig’s trotters, under advice from my Nutritional Therapist. I know. I know, it was a challenge for me mentally, having been pescatarian for over 20 years. But it’s a super-gut-healer. And I need a super-gut-healer.
- Wheatgrass shots. Taster with Cacao-flavoured Coconut milk.
- An army of supplements, including Zinc, E, D, B12, and a multi-vitamin.
- Broad Spectrum Amino Acids, plus extra L-Glutamine
- Different kinds of whey protein shakes, mainly based around different combinations of Organic Whey Protein, Tapioca Maltodextrin, Flax Oil, Avocado, the odd raw egg yolk, some kind of Low-res-legal tropical fruits like black banana, or tinned papaya or mango, plus a dash of Vanilla Extract and a teaspoon of local cold-extracted honey, preferably raw.
I’m spending most of my days concentrating on healing – I seem to be either fetching some kind of food or supplement from somewhere, visiting a practitioner or therapist, or just resting, healing and recuperating. I’ve been into work a few times, but am restricting that a the moment to going in for the odd hour or two to catch up with how things are going, answer any questions, and discuss ongoing projects. I did two nearly-full days in the office last week, although that totally wiped me out, even though it wasn’t even slightly stressful; I need to remember that my stamina isn’t as good as it feels like it should be.
I’ve started to gravitate towards making music again; I see this as an important part of my healing journey, as it’s my way of expressing myself, and also part of my spiritual practice. I spent the last couple of days in the studio with Ella, which was very fulfilling, and I’m now keep to get on with my solo album. Slowly, in a relaxed, meditative way. It doesn’t matter if it takes me a couple of years to write it; it’s the process that’s important.
Making my default state one of rest, stillness, awareness of being in the body (not stuck in my head), is an important goal, and I’m getting there. Next step is coupling that with the gentle forms of exercise that I’ve mentioned before.
I’ll feel my way back into more hours at work, but I certainly intend to make it only a part-time thing at most for the foreseeable future – To be frank, I’m not needed there full time at the moment, and I’m no good to anyone if I get myself ill again.
This crash was life’s pointer to me to make sure that I have my priorities in check, and that I get my work/life/fun/rest balance correct. I’m not going to forget that any time soon.
So that’s what my days are like, and where I’m at so far. I’m doing good, and still am optimistic about the future. I’m healing, and can feel my body doing what it needs to get better. Slowly but surely, I’m taking the healing journey, one step at a time.
It really is all good.