The Drugs.

I received an email from the Crohn’s team nearing the end of the 8 week Modulen period, inviting us for a meeting to discuss medication. I hadn’t realised medication was required. During Modulen time, Stella had gained weight, grew a bit and felt amazing. In my naivety, I thought that was it, cured! Sadly, I quickly realised that this wasn’t the case.

We had a meeting with the team to explain to us that whilst the Modulen appeared to have done its job; looking back to the scopes a couple of months prior, they had identified widespread patches of inflammation in her gut, not just localised to one area. In these cases of Crohn’s disease, apparently medication is usually needed. If not, there’s a good chance of symptoms re emerging. The medication of choice here being an immunosuppressive drug.

My understanding of Crohn’s disease is that it occurs when the body’s immune system attacks the gastrointestinal tract, which is perhaps why drugs which suppress the immune system are effective in managing the disease. Unmanaged, Crohn’s disease has the potential to bring on a whole host of horrible symptoms; symptoms of which Stella had already presented prior to diagnosis (although thankfully not them all): pain, diarrhoea, lethargy, weight loss, and malnutrition — because the body just isn’t able to absorb nutrients from food. We’re told that these symptoms are due to inflammation occurring in the gut, a “flare-up” in Crohn’s is when these symptoms present themselves. I believe that the more flare-ups you have, potentially the more damage to the gut.

For the little people with Crohn’s, like Stella, my worry is that if it is unmanaged, she won’t grow properly as well as there being a risk of puberty being delayed. I’ve heard it can also potentially weaken her bones. All a bit scary. So, yes please to any medication going to reduce these risks, thanks. If only we didn’t have to read the small print/possible side effects. But, as my good friend pointed out, if you read the small print on a packet of Paracetamol, you probably wouldn’t want to take that either. Therefore, trusting the experts again is what we did. We weighed up potential side effects versus the potential risks of a poorly managed Crohn’s child and it was a no brainer. At 8 years old her body needed to grow properly, there was no arguing this.  

Given that they suppress your immune system, these drugs can therefore potentially make you susceptible to picking up a lot the nasty bugs going round, that said, we’ve not found this to be too much of an issue — not yet anyway. There have been times when all of us in the family, apart from Stella, have had some sort of vomming bug — but not the girl on the immunosuppressives? Weird.

It does bring me more anxiety than normal when Stella has a sore throat, for example, because we worry that it may lead to something more serious. When she has had a sore throat, and it has happened a couple of times, I am on it like a crazed mother with my elderberry syrup (I swear by this stuff), Calpol, fluids, rest and compulsive temperature taking. Anti inflammatory drugs, e.g Ibuprofen, aren’t recommended for Stella so it’s Calpol only.

We really don’t want Stella to have antibiotics (more about this later) unless absolutely necessary, so I’ll try to do anything to avoid them. Fortunately so far, my overzealous nursing skills — and luck — have resulted in no antibiotics being needed yet.

My main, lovely paranoia re these drugs is the side effect of the slight increased risk of cancers, including skin cancer documented on the Crohn’s and Colitis UK website. To combat this, our Stells in the summer months gets a factor 50, broad spectrum, no less, slapped on her every couple of hours- as well as a very fetching All in One number and a hat. And sunglasses. Thankfully she doesn’t care what she looks like, least not just now. I’m well aware, however, that this is likely to change as the teenage years approach us.

The current immunosuppressive drug that Stella is on is Methotrexate which appears to be doing a grand job at keeping flares at bay.

She doesn’t exactly love taking them though. Probably on a par with the needle poking as being the worst thing about having Crohn’s. Thankfully it is just a Saturday that she has to take them. There are 3 tablets to take, she has her drink of choice and a something nice lined up for eating afterwards. She takes a Folic Acid tablet too on a Friday night, this is to help reduce symptoms of nausea etc which Methotrexate can bring on.

One of the lovely nurses introduced her to a brilliant App called Hospichill which is like a meditation app to help her take them. It has helped, ish.

Before we discovered that Methotrexate was the right drug for her, we had a really rubbish time trying to get one which suited. The first one was called Azathioprine. A week or so in she had a horrible vomiting side effect, not that unlike The Exorcist. We had to stop it, then restart it to see if it was the drug causing this… Again, the vomiting happened. It was pretty severe, it was just as though her body was completely rejecting it. Azathioprine was therefore abandoned.

Next choice of drug was one called Mercaptopurine. This appeared to be fine until cruelly, two weeks in, nasty symptoms started: high temperatures, bit of abdominal pain, all a bit vague; nonetheless, required evening admissions to A ‘n’ E. These symptoms weirdly only ever came in the evenings, therefore, I couldn’t ring my right arm/Crohn’s nurse for advice as she had already finished her shift. It was a particularly crazy week that week, we were in A ‘n’ E three times because we were told that if she had a high temperature then the medical staff would want to see her to determine whether it was down to a normal side effect or whether it was the beginnings of Pancreatitis. It was a very frustrating and worrying week.

And as it happened, it did end up being the beginnings of Pancreatitis. Thankfully caught early and so no horrible lasting damage. Mercaptopurine was stopped immediately and, in terms of moving forward with treatment, we were a bit stuck as to what to do next. Apart from my husband who was secretly quite delighted that his daughter’s clever wee bod seemed to be rejecting all these nasty drugs! He, at this stage, had already bought this how to cure Crohn’s book and was convinced we could cure her by diet alone. I was ready for punching him if he mentioned the word “paleo” one more time. In fact, I totally did.

The following day Stella had already started to feel better, we were at home and one of the amazing nurses rang me. I was almost laughing with her at this point with how ridiculous this whole situation was all becoming. Plus VERY sleep deprived from all the midnight A ‘n’ E admissions — never helps the hysteria. This nurse, who I frankly adore, decided enough was enough for now and said to give Stella a break from the drugs. It was good to hear. We happened to be going on holiday to Wales three days later so it all worked out. We went on holiday, we had a brilliant time. No side effects from drugs, nor flare-ups occurred. What were we feeding Stella at this point? I’ll also get to that on a later post. Paleo diet not being an option. Certainly not for a wee thing with a nut allergy.

Steroids? Or Modulen. Again. Bummer.

We came back from Wales. Ready for taking on the next challenge (not really!). This challenge being: a re-test of the Faecal Calprotectin (inflammatory marker) which, to our dismay, came back as very high again. This meant that she was not in remission. Unfortunately, those few months of starting and stopping drugs and not having the correct immunosuppressive in her system meant that her gut became very inflamed and likely a flare up would develop. We had been told of this Methotrexate, which we were planning on starting soon, but, due to the fact that the Calprotectin was so high, her body needed more than this just now. She needed either a course of steroids or to repeat the same course of Modulen for 8 weeks again. It was our call.

This was really difficult news to hear. (It happened to be on my birthday — completely besides the point but thankfully I’d had a glass of fizz before the phone call!)

Despite the fizz, I was ultra nervous asking Stella what she wanted to do. My husband and I had already decided that we didn’t really want her on steroids if we could avoid it, but I knew that asking someone to, again, have no food for 8 weeks only a few months after the first time, was a major ask. However, Stella, being the absolute trouper that she is or possibly just hoping to be the next Alan Sugar, asked “Will I get paid a pound every day again?” And that was that decided. Another gruelling 8 weeks of milkshakes was going to start.

It was definitely tougher second time round. Stella was amazing again and still not a moan, but she was a bit blinking fed up at times. Plus we didn’t have room for 56 more presents (!) — or more rabbits.

It was at this point that I decided to essentially chuck my job — or at least take a career break. I was stressed at work, stressed at home and I had an epiphany. I knew that I needed to focus on this and see what things I could do, as well as the drugs, to keep her well.