Fatigue, weight gain, oh joy!

It’s been ages since I’ve written anything and I feel bad about that. I keep meaning to put hand to keyboard but I wind up getting distracted or just run out of time. As it is, I’m writing this when I should be working. Shhh. Don’t tell my boss.

Currently I’m on Methotrexate injections weekly and Remicade infusions every 8 weeks. Most of my symptoms have settled down and things are almost tolerable.

But I am so tired. Really tired. Sleep 16 hours a day tired. I go to bed at 9pm and I get up at 7am and I feel like I haven’t even slept. I walk around with bloodshot eyes and people look at me constantly and ask if I’m ok. Man, it’s always something with me.

Anybody else had this with either Remicade or Methotrexate?

I’m getting regular B12 and Iron shots so I know it’s not that, and thanks to a concerted effort on my part to eat properly most of my other vitamin and mineral levels are ok.

The other thing that happening at the moment is weight gain. Good Lord, I’m averaging 1 kilo a week and if one more person says to me “You needed to put on some weight though” I’m going to put my boxing classes to use and pummel them senseless. Even my GP said it. What nobody seams to under stand is the weight gain from meds isn’t going to stop, when should I do something about it? After I’ve gained 5kgs? 10kgs? 50kg? Or should I get on to it now? I’ve gained about 8kilos since leaving hospital in February, although most of that has happened in the last 2 months. So I have changed my eating habits and get more exercise. I want to avoid getting fat or that will make me depressed and then we’ll have a whole nother set of problems.

Anybody remember what life was like before we got this disease?

Tired.

I am aiming to blog something everyday, but I haven’t blogged at all the last few days and mainly I put it down to my feeling pretty ordinary. I’ve had Crohn’s since 2001, diagnosed in 2002. During 2002 I was what they term “steroid dependant” which essentially means that the disease only responds to steroids and when the steroids are tapered, the disease flares up again. I was studying at the time and I look back now and wonder how I managed to complete my degree.

2002 marked the beginning of what would be one of the worst years of my life in terms of Crohn’s disease (although this year is giving it a run for its money) and it culminated in my having a resection performed on Christmas Eve. That horrifies most people, the thought of having a major surgery on Christmas Eve, for me, it was much welcomed relief. Anything that would make me feel better.

So following the resection I had three wonderful years of remission. I wish I’d known back then that it was to be short lived; I would have tried to pack a bit more into life. You know make the most of it while I can. When the symptoms re-emerged it was slowly, so slowly that I didn’t really even notice at first. I think that there might have been a little bit of denial in there as well.

Fast forward to now, I have been on so many different medications (which I might talk about in a separate blog) with very little response, even steroids don’t make a whole lot of difference and as if that’s not enough, it appears that I am now having an allergic reaction to Methotrexate. The doctor has given me tablets to counteract the symptoms of the allergy i.e. itching, rash, etc because at the moment the symptoms are quite mild and the benefits of the Methotrexate outweigh the risks of continued use of a medication I’m allergic to.

“But if you go into anaphylactic shock, be sure and go to the emergency dept.” Yep, great advice. I’m not sure what’s more worrying, that some people actually need to be told this or that it’s possible that while watching Grey’s Anatomy I could go into shock.

Anyway I guess it’s on account of this that I’m feeling a little tired and slow these last few days. I have my next Remicade infusion on Wednesday and so hopefully that’ll have me feeling better soon after. My success with this has been limited but I’d be interested in hearing what other peoples experience of Remicade has been.

xx

Commencing Humira

I think I've been on almost every medication approved (and some not approved) for Crohn's Disease at one point or another. I wrote this in 2007 when I started Humira (adalimumab) for the first time.

Humira, a new hope?

My doc decided that Humira was a better option then Remicade because we only get one shot at remicade. Also, I can give it to myself, rather having to have infusions at St V's. So he sent me away saying that the research Nurse would contact me in two or three days.

I went home and waited.

and waited.

and waited some more.

Four and a half weeks later I finally got a call and I headed off to St V's where the nurse began to explain all the potential side effects and benefits of Humira. I should mention that the information leaflet inside the pack is HUGE. It's this double sided A3 sheet with 6 point font writing. It's the encyclopedia of Humira.

She then calmly informed me that I would be receiving not one but FOUR injections and that I would be giving three of them to myself. Then she took them out of the box and laid them out in front of me.

"Yikes! I don't think I can do this" I thought feeling queasy all of a sudden.

I had tried to find a copy of the instructional DVD on youtube to save me explaining it all but the best I could find was the one imbedded on the humira website which you can watch here

So she did the first one while I watched. Wipe skin with an alcohol swab. Pinch the skin. Hold the syringe like a dart. Stab it in. Plunge slowly. Pull it out. Throw it in the sharps container.

Then it was my turn. She talked me through it. Wipe skin with an alcohol swab. Pinch the skin. Hold the syringe like a dart. and then I hesitated. This was the hard part. I took a deep breath and...hesitated again. The nurse laughed, "The first one's the hardest". I sat there looking at my pale skin and the sharp needle. Maybe I really couldn't do this. I felt the queasiness returning. It had to be done. There was no other option. I counted to three and it was done. It was in. I continued following her instructions. Plunge slowly. Pull it out. Throw it in the sharps container.

It actually turned out to be no where near as bad as I thought it would be. Under the watchful eye of the nurse I managed to plunge a 20mm piece of steel under my skin and inject myself not just once but three times. She warned me that it would hurt, that the skin might swell up and that I might have flu like symptoms for two or three days afterwards, none of which happened, thankfully. Although I did have a killer headache the day afterwards.

So today I had to give myself the injections at home. On my own. With no help. I psyched myself up, got out my sharps container, alcohol swabs, cotton balls. I washed my hands thoroughly and was ready to roll. It was at this point I realised I hadn't taken the syringes out of the fridge yet. The nurse's words or warning echoed in my ear "It'll hurt a lot if the Humira is cold".

So I waited fifteen minutes and then decided it was now or never. The first one stung. I think I plunged it too fast and the Humira was still a bit cold. I made a point of plunging the second one much slower and it didn't hurt at all.

I have the next dose in two weeks time. From then on it's just one dose every fortnight. It's probably still to early in the show to know if it's helping at all. I feel better but it could be pure determination. I really want this to work.

Reducing pain from Crohn's Disease

NB: This is an article I wrote for Helium a few years back. It's a little bit generic and needs some fixing up, but it does cover the basics so I thought I'd re-post it here.

Reducing pain from Crohn's Disease

Crohn's disease is an inflammatory bowel disease that can occur in any part of the digestive tract from the mouth to the anus. While the cause is unknown it is thought to result when the immune system attacks the body causing inflammation and swelling. Pain results from various types of disease activity, from side effects of medications, from muscle strain, from complications, from surgery, from investigations and more. The most common types of pain are that from the swelling caused by the inflammation and obstructions resulting from scar tissue that builds around the intestine causing narrowing.

Crohn's disease pain can be anything from a mild discomfort from bloating to cramping, sharp stabbing pain, dull achy pain right up to an intense pain that comes in waves and includes nausea and vomiting.

Pain relief comes in many forms, there are those that provide instant relief such as medications and ice packs/heating pads and those that aim to reduce pain progressively over time such as guided imagery meditation and yoga.

Painkillers are probably the first thing to come to mind when thinking about pain relief, however not all painkillers will relieve the pain associated with crohn's disease. In fact some types of painkillers can actually increase the symptoms causing the pain. Likewise as the condition is chronic, dependence on painkillers can become a reality.

Narcotic pain relievers such as codeine or Vicodin can slow down the bowel. This can be helpful in cases where diarrhea is severe however they can mask symptoms of disease activity and can be addictive. Avoid non-steroidal anti-inflammatory drugs (NSAID) such as aspirin and ibuprofen, as they can exacerbate the already inflamed intestines. NSAID's can worsen the bleeding in the small bowel and can contribute to the development of ulcers. Always consult your doctor before taking any painkiller and consider the short and long term effects of using pain relief medications.

There are many natural therapies, which can aid in the reduction of pain, as Crohn's disease is a chronic condition it is well worth considering alternative methods of pain relief to drugs.

Cold packs/Heating pads are an effective and natural method of pain relief. Like medication they provide instant relief at the time of pain and are especially helpful for the cramping pain and muscle ache associated with crohn's. These can also be combined with aromatherapy.

While there is still much debate in the medical world about the impact of diet on Crohn's disease, anyone who has the disease will quickly tell you that diet makes all the difference in the world. One of the most efficient ways to manage the pain associated with Crohn's disease is to monitor and limit foods that can exacerbate symptoms.

There is no specific diet for Crohn's disease. Many sufferers believe that limiting specific types of foods such as starch or sugar have a positive effect on the symptoms. Others have found that low fat, low fibre diets decrease the likelihood of flare-ups. Low-residue diets are seen to be gentle on the bowel and are often used during acute phases of the illness.

Most people agree that avoiding things such as alcohol, caffeine and nicotine that stimulate the bowel and aggravate symptoms and increasing things such as yoghurt, and fish is a good start. A pain journal is a good way to monitor pain and correlate possible exacerbating foods.

Gentle massage has been used for centuries as a way to soothe muscles, relieve pain, and reduce inflammation and swelling. In many cases massage is as effective as medication for pain relief. Massage can be used at the time of pain for immediate relief or on a regular basis as part of a long-term management plan.

Progressive muscle relaxation is a method whereby each muscle is relaxed one by one and can aid in both the immediate reduction of muscle pain and spasms and more general pain reduction over time. It takes anywhere between 15 and 30 minutes to perform and is very effective.

Living with conditions such as IBD can lead to feelings of depression, anxiety and hopelessness. Meditation, the use of guided imagery and relaxation techniques such as breathing exercises have been a proven method of relieving pain. These techniques also aim in improving the emotional aspects of living with chronic pain. Likewise participating in gentle exercise such as Yoga or Thai Chi can be extremely beneficial.

Pain relief is a very individual thing, what works for some may not have any effect for others. It's important to try as many methods for reducing or eliminating pain as possible to develop the best overall management plan and ALWAYS discuss pain relief with your doctor.