Physical Illness Bringing Me Down!

[NatalieMT]

I wasn't quite sure whether to post this in here or in health/wellness but I figured it was more likely that'd I'd get an all round response here.

In March 2009 I was diagnosed with Crohn's disease after having symptoms for around 1 year prior, I don't know if I have quite come to terms with having a lifelong illness and lately I've been finding myself ever more depressed due to my poor quality of life.

I'm on a strong painkiller, Fentanyl and Temazepam to help me sleep, among other medications but I still suffer terribly. Most days I will go to the bathroom 20+ times and bleed with it. At the moment I've taken to putting up with it but it's ruining me since I scared to leave the house incase of accidents and certainly can't find work. I'm so tired aswell, my energy levels are just depleted. I've had a lot of mental problems throughout my life, I am anorexic and struggle with purging, it's not as bad as it was but I still have issues there and I also self harm. I really found myself breaking away from that, but since the diagnosis it's all slowly crept back in - I can't eat normally with the Crohn's anyway and I'm just so frustrated I tend to take it out on myself. I was referred for more counselling in January 2009 but am yet to actually get any appointments. I'm really trying to help myself but it's a constant struggle and I feel pushed down when I don't get anything back from these services. I don't really have an awful lot of close friends to talk to either, as most of them have moved away to university over the past couple of years. The best I can do is stay busy at home to take my mind off things.

Really I'm just looking for advice on what I should do? Is there anything that would help break this cycle? How has anyone else coped living with physical illness long term?

 

[MaskedBeauty]

wow. I could only imagine how you must feel. Crohns disease alone is a lot to go through but having anorexia and possibly purging on top of it has to be physically and mentally exhausting. I wish I could have some sort of advice for you. I do however think you should try to not let this illness take over your life. it may feel like you don't have control but you do. You should go out and have fun. There are always public bathrooms and if an "accident" happens, its no big deal. I don't think anyone would really notice either. I hope this helps. And I hope things get better for you.

 

[Chikky]

I understand where you're coming from.

I have a couple chronic illnesses, though I'll admit that they aren't as bad as me needing pain medication (though it was offered to me by the doctors, I opted out of that). Not all of mine are stomach related, I know the fear of going out after eating and planning my day around what I eat and where, and having to limit what I eat.

It sucks, but I figure it this way: I spent years not knowing what was wrong with me (all my things got diagnosed kind of at once; very near each other) and I'm happy knowing what they are, and what I need to do to get by with them. Do they suck? Yep. Is it inconvenient to have surgeries and take medicine every time I eat? Yep.

But (and sometimes I hated when people said this to me, when I wanted to feel bad for myself) there are worse things out there. You will live through this, I will live through this. Inconvenient though it may be, we are actually kind of lucky.

 

[Pizzicata]

My heart goes out to you. My father in law has had Crohn's since his 20s. He is going on in his 60s now. I understand where you are coming from thru what I have learned from him. The horrible thing about Crohn's is that many of the people who die with it actually have committed suicide due to the pain. Please don't let yourself spiral down that way! I am not a doctor, so I don't want to make it seem like I am dispensing medical advice. But my heart breaks for you and I do want to let you know you aren't alone and you can live a full productive life. I'm probably just going to start rattling off things, so sorry if it seems random:

• He has told me that his faith has helped him a lot through his struggles. He was brought up religious, but that doesn't mean that someone who wasn't can't find some spiritual comfort. Not trying to be preachy, but it has helped him through all the bad times.
• A big difference in his life was finding a physician that he trusts, who he has a bond with, who knows him and isn't clinical. He has sought advice from this physician for years. It is not his gastroenterologist, either. I hope you can find a doctor that can be an advocate like that.
• Do not let physicians overperscribe steroids, particularly prednizone, to you. Too much wrecked his body. You really don't want to deal with destroyed bones on top of all this.
• No one knows what causes Crohn's, but some research has shown links to personality types and stress. So try your best not to let your stress level get so high.
• Pain clinics can help you learn coping techniques! He has told me that meeting people there with way worse pain has made him appreciative. Find a pain clinic and keep going.
• Hes on the patch, too. It is really the best thing for the pain. Beware as it is highly coveted by druggies. Be sure to change it right on time. FIL gets really cranky and moody when hes overdue.
• My partner had a coworker who had Crohn's and controlled it completely with diet, took no meds! While I am not sure that is possible in every case, I notice that my FIL, who eats really junky, processed food (he says that its easier for his gut than roughage) has a lot of other health problems. Really give your best in the diet department. I know that your anorexia drives you to deprieve yourself, but maybe somehow try to channel your perfectionism and discipline into eating the very best diet for your body to help it deal with Crohn's. If you could challenge yourself to do that, it would be really interesting to hear the results.
  
• Remember Crohn's is a cronic illness, but it goes in waves. It won't always be like it is now. There are flare ups, but my FIL was a successful and beloved high school teacher for 20+ years. There are scary stories of illness flareups while camping far away from city hospitals and things like that. But he made it through, he lives, he travels. He spent time with his family. Most of his suffering now is related to his bones being wrecked by prednizone, but that is another story.
• Please give the counselling a shot. Antidepressants may help remove the dark lens that is darkening your vision of life and the future right now. It might take trial and error to find the right ones. And talk therapy can do so much good, too. Maybe it can retrain your brain to stop the chain of negative thought that makes you despair. Its more work for you, but your mind needs healing, too.
• Once you get your dream job, and I know you will, if it ever comes up to negotiate a contract, try to make sure that it notes your existing chronic illness. Flareups may occur and they can put you out of commission for periods. Try to get yourself as protected against any unfair treatment by an employer for this.

Natalie, you are not alone and there is hope. I hope this post helps you feel better and motivated to not give up. This will pass, you still have a life to prepare.

​

 

[NatalieMT]

MaskedBeauty - thankyou, although you say you don't have any advice it is comforting to know you think I can regain control.

I agree Chikky, things could be an awful lot worse, we always have to keep that sense of perspective but I think there are probably going to be some rough patches.

Sorry to hear about your FIL too Pizzicata, thankyou for the detailed post aswell. I'm not a religious person myself but I have considered going on the Alpha course to see if it's something that I might be interested in converting to. I was on prednisolone for about 5 months and I'd be reluctant to go there again. I'm glad it's not just me that sees the dangers.

I've seen a dietician numerous times and it has been helpful. I did something called the Elemental diet which is a purely liquid diet designed specifically to help heal the Crohn's inflammation, which was partially successful for me. I had a problem actually taking enough of the liquid in because I looked at each carton as 215 calories instead of a sole source of nutrition.

I'm really hoping the counselling comes through, I do think it would help. It's just the time factor, I phoned yesterday to see what was happening and was told although I'd already been waiting on one services list for 9 months I'd been transferred to another service with a waiting list of a further 7 months. Going to see if anything can be done to speed that up, as I was supposed to get an appointment within 4 months originally. I don't think it's unreasonable to be asking for help in a lesser time frame at this point.