Support, crohns taking over my life!

[YJ120]

Hi All,

My crohns is getting unbearable. It is wearing me out! I've just turned 30 and can barely get through an 8 hour shift at work. How do others cope with the extreme fatigue?

I've been flaring since beginning of July and following doctors appts, many discussions with my IBD nurse and seeing my consultant he thinks I may have some low level blockage in my small bowel. I've got an MRI scan on 24th Sept and following that he'll decide whether I need a resection or whether I start Adlimumab (however you spell it!).

Now its affecting me at work and I've had to speak to work because I'm due to go back to my old job that includes night, early and late shifts, been in a temporary post with better hours - no nights and after seeing Occupational Health who have advised I shouldn't be doing nights they're looking at options for redeployment. Which is a big stress!

Then to top it off, we really want a child! Been trying for last year but think I'm too ill to conceive. So it's stopping that too.

Gosh, it's so much to cope with. Is anyone in a similar situation? What is the best option surgery or Adlimumab? Which is the best option if we want to conceive?

Thanks in advance for your support xx

 

[Tesscorm]

Hi YJ,

I'm so sorry you're having so many struggles right now. Hopefully, the new position at work will be a less demanding one! But, I can imagine how having so much upheaval in your life would be stressful, on top of not feeling well at all! :ghug: I don't have any experience with surgery nor adlinumab (spelling??). However, if you have a blockage that's caused by scarring, medication cannot treat that; if the blockage is caused by inflammation, then a new medication may alleviate that inflammation and lessen/remove the blockage.

I do hope the MRI will give you some answers! If you do have inflammation in your small bowel, that is probably affecting your absorption of nutrients. Are you anemic? Often being anaemic can cause fatigue.

Again, sorry I don't have info for you re TTC but, there is a subforum... perhaps someone there would have some info for you. Here's a link to that subforum:

http://www.crohnsforum.com/forumdisplay.php?f=45

Good luck! :ghug;

 

[YJ120]

Hello,

Thanks very much for your reply and support.

That was good to read about scarring v inflammation. My consultant thinks it is scarring because my last lot of bloods at the beginning of August showed no raised inflammation markers. Yet I'm really ill and with this latest flare I've had nausea and vomiting almost daily since beginning of July, as well as extreme fatigue, pain and all over BM's. Roll on the scan next week!

In regards to being anaemic I'm not sure. My bloods showed a vitamin D deficiency an very low on iron earlier this year and they prescribed me more tablets to take for that for a month (walking pill bottle lol) and now I take supplements of each every day.

Thanks for the link too, I'll have a look in there. Wish I'd listened to my consultant a year ago and not pushed to stay on budesonide so I could TTC, because obviously I'm not healthy enough yet. Hindsight eh! Lol.

Thanks again, Yvette.

 

[Tesscorm]

Also have a look at Enteral Nutrition as a treatment. There is a subforum in the Treatment section. When used exclusively (so no food, formula only), it has a decent success rate at inducing remission. But, even if just used as a supplement, it can provide necessary nutrients. My son used exclusive EN to induce clinical remission and as a supplement for almost two years to maintain. We recently added remicade as the EN did not eliminate all inflammation, however, he continues to drink 1-2 shakes a day just to boost his nutrition levels. And, it has NO side effects and can be used with any medication that you take.!

Probably worth looking into if you are feeling fatigued, etc. :ghug:

 

[YJ120]

Thank you very much, I'll look into that and speak to my Consultant about it. Really appreciate your help. Thank you

 

[Jennifer]

Try to increase your fluid intake as much as possible if you've been vomiting for so long. If you haven't changed your diet yet then I strongly encourage you to at least try the Low Residue Diet to try and reduce the vomiting and nausea. The vomiting alone can cause dehydration which will make you very tired.

I'm sorry to hear that you haven't been well. The MRI should give you and your GI a better idea of what's going on be it strictly scar tissue or inflammation on top of the scar tissue. With scar tissue it could be stretched (balloon dilation), cut and sewn back together (strictureplasty) or be removed entirely (resection). Following any of these you could try going on the Humira/Adalimumab as maintenance to help keep you in remission. If its mainly inflammation then you can try the Humira before any of the procedures above.

Keep us posted on the MRI and on how you're feeling. *HUGS*

 

[YJ120]

Thanks very much

I don't have a great diet and it's probably not helping! I'm that tired I can't be bothered making healthy meals and if I'm totally honest I just end up eating junk food for convenience. I will look into the low residue diet, thanks.

Can't wait for the scan and results! Will keep you posted