So we come to the end of the third week and I am slowly beginning to feel better. The side effects are dwindling down now. I feel sick in the morning and occasionally later on in the day, but no where near as often as when I first started taking it. I am having a slight problem with fatigue; not tiredness, actual fatigue. Around 2 or 3 in the afternoon my eyes hurt and my body is drained and I struggle to think straight. Caffeine seems to help perk the brain up a little, but the body is still a torture to move.
I have found that my moods are starting to swing around. I am generally a cheery person who doesn’t get fed up that often, but lately, since taking the medication, I have started to feel down. I am finding it tricky to listen to people. I feel as though I want to be alone a lot of the time. It doesn’t help that the office I am working in is taking a turn for the worse. I am lucky to have a strong mind though and I soon realise that my moods are pretty much based on the chemical imbalance and I soon fight my way to the happy side of life.
The best advice I have when taking M-Cap, is to take it at night. This way you have a tummy full of food to line it well, hopefully preventing the awful sickness feeling. It took me calling the IBD nurse to be told that. I would also recommend exercise. I never normally endorse exercise; I hate exercise. However, I do like cycling, so I ride my bike to work as much as possible. This really helps wake me up and get me ready for the day ahead. Exercise also helps keep the mind strong as well as your body. These drugs are very potent, so it is always best to bit the fittest you can be, mentally and physically. Never suffer in silence, if you have any worries talk to your GP or IBD specialist nurses. They are all there for a reason, and they can generally offer some decent advice. I have also found that talking with the Crohn’s and Colitis UK local group (Mine is Leics & Rutland) can help a lot. A few of the guys at my local group have taken this medication or are still on it, so it’s nice to know you’re not the only one feeling these emotions and side effects.
Apart from the unwanted side effects, I am having some positive effects on my Crohn’s. I use the loo once or twice a day (I still occasionally have a bad day, so not 100% improvement) and my pains and cramps seem more under control. I am still quite sore from the operation which was done about 3 months ago, but that will hopefully die down. Does anyone out there have any soreness around your scars? My main scar is quite painful at times, but it has stopped leaking, which is a good sign; so at least my insides won’t drop out! Don’t want to ruin any more decent T-Shirts!
If I can get over the last of the side effects in the next few weeks, I am feeling confident that my Crohn’s may become fully controlled. Fingers crossed. The main fear I have is becoming immune to the drug. This has happened with most of the drugs I have taken so far. The bad side effects lesson and the positive effects diminish, leaving me back at square one.
Hope you are all working your way to a happy Crohn’s free life. Take care
Ben x
August 9th, 2011 13:33
Hi Ben
A work colleague has just found your blog for me. Thankful to her & to you. Great blog very well written and descibes so much how I feel and what we all go through. Also uber amusing re toilet habits & the need to share (my poor colleague, I have no secrets). You also descibe the pain you go through so well. I am 44 this year and was diagnosed over 11 years ago. Still act like there is nothong wrong most of the time!!! Its hard for anyone to understand as I look really healthy and am a couple of pounds over weight if anything (which I know is a bessing). Gone thru the usual steroids etc now on 6MP, not working! Just about to embark on Infliximab (having developed fistules) two seton stitches later, treatment starts next week. Bit scared, don’t really know what to expect and don’t really know anyone with Crohns. Going to take my iphone with me and read your blog – I know it will lift my spirits. Keep it up and I wish you all the best. Thanks
Cags
August 9th, 2011 17:55
Hello Cags
Its a shame you dont know any other Crohnies. Have you thought about joining Crohns and Colitis UK? They have regular local meetings where you can have a chat with many others in a similar situation.
Here in Leicestershire we have a meeting every few months. We quite often have medical staff come too, so that you can have an informal chat with them.
Im glad you like my writing and if you ever want a Crohns friend, then do get in touch. If you fancy braving Twitter, there are alot of us on there who you can get instant feedback from.
Im kind of thinking 6MP may be working now. Not brilliantly, but better than the others. Dont be worried about Infliximab. If it works, it can be brilliant. I loved the fact that I didnt have to taka any other medication. I almost felt free. Obviously it has it’s downsides, but so does every other drug.
Acting like there is nothing wrong is something we all do. I had to take a day off today and felt extrremely guilty. I couldnt seperate myself away from the toilet this morning, but have been ok all day. So Im now thinking that I should have gone to work but part of me knows I need these breaks to let my body relax and calm down
I hope you stay positive
Ben