Just one of those days!

[Madeline]

Hi Fellow Crohnies!

First time post! Am looking for a bit of support - hopefully by telling my story, someone else out there will be able to relate with me and help me feel not so alone!

I am 22 and I have recently been diagnosed with Crohn's disease (just last month). Just over two months ago - I had never had any problems before. I have always thought of myself as a healthy person - I've never touched a cigarette in my life, have never touched drugs, me and my partner hardly ever drink (have a glass of wine at a birthday or something like that). We also try and eat well and get to the gym at least 3-4 times a week.

Then all of a sudden about 2 months ago I started getting really bad stomach cramps - which I thought I had just picked up a stomach bug. After a week of this (plus the blood and mucus appearing in the stool) I went to see the GP who started the process of many many blood tests and stool samples and a CT scan.

The scan showed swelling at the ileum and I was referred onto the wonderful GI specialist that I am now under the care of. I had my colonoscopy soon after which showed the 'cobblestone' appearance of Crohn's - and they took biopsies throughout my bowel and all throughout came back positive (i.e. its not just restricted to one area).

For me, Crohn's doesn't give me any diarrhea - if anything it is the other way. For the last two months I have had constant stomach pains - my only relief is sleep. Every movement contains a lot of blood. I have headaches / migraines everyday and I feel really tired by the end of the day (I haven't been going to the gym at all anymore ).

The doc has me booked in for an iron transfusion (6 and a half hours of fun!) next week - hopefully this will help with the headaches and energy levels. Because it really has felt like my life has been on hold the last two months - I don't feel like eating, I don't want to go anywhere or do anything and I haven't been to the gym and feel like I may be putting on weight as a result. Lucky its winter - and I can hide it under some big jumpers and jackets right?

I'm currently on Prednisone (was on 40mg now down to 20mg) and Imuran (125mg) and haven't felt any better from these at all - if anything some days I have felt sicker. Doc assures this is normal and it could take months before I feel any better - her reassurance "we hope to have you feeling better by Xmas". Not what you want to hear in July...

I have a wonderfully supportive partner. But it is hard because he has no idea what I am going through and there isn't really any way for him to help - this is what he always says to me "I feel so helpless" "I wish I could help".
Sometimes it makes me feel bad that I am making him feel that way - so when he asks how I am I just say "yeah OK" - even if I'm really struggling. So fellow Crohnies - today you are my vent!! I feel like crap! I feel nauseous and have pain and headache and feel like leaving work and crawling into a ball on the couch!!

I have had my down days - which I'm sure we all have (especially thanks to Prednisone). It's terrible but you think - 'why me?'. I was trying to do everything right and live a healthy lifestyle - for me, I don't know what I was doing to my body to make this happen! And I don't know what to change to make it better! I'm not sure if I should start experimenting with diets (the doc says diet isn't likely to have much impact)? I don't know if I should push myself and get back into some form of exercise (particularly if this will make me feel less down)?

Pretty much just 'existing' and waiting for the meds to kick in and actually do something... So hard when it feels so out of my control!

Anyway, I write this with the hope to find someone else like me out there! And to find a bit of support from people who know what I'm going through.

Appreciate any advice.

Thanks,

Madeline

 

[Cat-a-Tonic]

Hi Madeline, welcome to the forum. I can relate to a lot of what you wrote, but I'm a bit concerned too. Imuran does take awhile to kick in, something like 3 months I believe, but prednisone should have kicked in pretty quickly, within a week or so. When I first took pred, it kicked in within 24 hours and I felt a lot better right away, so it's concerning that it sounds like it's not doing anything for you. I hope the Imuran helps when it does start to kick in!

As for exercise, I'm very similar there - I was working out regularly before I became ill, then stopped all exercise for quite awhile during the worst of my illness. When I finally got into remission and felt better, I had gained some weight and lost a lot of muscle. I had to work out for a long time to shift some of the flab and gain some muscle back, but I did it. I'm now out of remission and flaring again, but I'm keeping up with my exercise through this flare so far and I think that's helping me a lot. I would say, listen to your body. It may just need a lot of rest in this flare to heal. If you want to try exercise, go for something gentle like some easy yoga or a short walk - if that goes okay then you can gradually do longer & more intense workouts. I wouldn't push it too hard though while you're feeling so unwell.

As for diet, there's a lot of debate on the subject. It's generally thought that diet won't cause a flare up, but certain foods can cause wicked symptoms. Some people on the forum seem to be able to get into remission with diet alone, but they seem to be the minority. It may help to experiment with various diets - we're all different, so a diet that works wonders for one person may have no impact on you or vice versa, so all I can really say is that it'll be a lot of trial & error.

As for your partner feeling helpless, surely you can let him know that his support is very helpful. And you can let him know that your energy levels are low lately and that it would be incredibly helpful if he could pitch in more with the cleaning, running errands, etc. (Assuming he's not already doing the bulk of that type of thing.)

 

[AuntieEm]

I agree with Cat on the Pred. Had you showed any improvement before the Dr started the taper? I hate taking steroids and the side effects but have to say they work for the inflammation better than anything else for me off the top.

Giving my gut a rest with clear liquids helps. I am doing that now through the weekend per my dr. advice and am feeling better ie: less bloating, cramping and pain. They did check various levels through blood work and I'll get the rest of the results when I go in but did have me go ahead and triple the D3 I'm taking. I've been in a "funk" going on 3-4 weeks.

I've been really fatigued and wondered about forcing some exercise too. Thinking it might help from what I've read others have posted. I'm going to start slow though. I still can't get too far from "facilities".

When my husband asks I usually say I'm ok too. or "ok, I'm coping but I could sure use a hug" then let him know how much it helps. Sometimes it's more for him than me, because I know he wants to make it all go away.... it's just not possible....

 

[Madeline]

Thank you both for your kind words and support! It is very much appreciated!

When I spoke to the doc, she said that everyone is different and you just don't know how the body is going to react. I haven't had any relief yet before I started the taper - and still have no relief. But I've had no diarrhea, so it may be that the ulcers are taking longer to heal? I'm not sure... We also spoke last time, and she said that unfortunately how it works in Australia is that the govt requires you to stay on Imuran for at least 2 months with it not working before they can get you onto the next drug up (I forget what the name is). Essentially, it costs the govt so much in medicare so this is the procedure. However, she said in the US you have access to this drug from the start. Slightly annoying...

I think I'm going to try a liquid diet for a few days to see if that helps. Hope that it helps you too AuntieEm! I think I will also try to go for short walks and start doing some light exercise. Hopefully my body will allow me to do this - I think that's great advice tho Cat-a-tonic that we just need to listen to our bodies!

My and my fiance had a great chat last night about everything and he pretty much said that he just wants to be able to do something (anything!) to be able to help. So he said he would like to be able to give me a back massage / back tickle for times when I feel too sick to move from the couch - he is pretty awesome . Very blessed to have such amazing support. We will only get stronger through this!

Sending my best wishes to you both! And I hope that you are feeling better too!

Will keep you updated on what the doc says tomorrow!

Madeline xx

 

[AuntieEm]

Hope your day went well Madeline. I am feeling better. The clear liquids have definitely helped and things are starting to settle down. The increase in D3 is already helping my "funk" too. I think I'm going to have to re-evaluate my eating a bit and supplements as well. Hopefully I'll have the full blood work printout soon. I'd like to study it before I sit down with my GI again.