Talking to my Doc

[CrohnsChicago]

Kind of bummed. Just got back from the doctor for a follow up since my last flare.

I have moderate to severe crohn's colitis (inflammation in my colon and terminal ileum). I have only had two flares in my life, both major (however thankfully no emergency rooms/hospital stays needed) and both within months of each other (the 2nd one occurring around two months after prednisone treatment for the 1st flare).


I have been feeling reasonably well for the past month and had a bit of a chat with my GI who basically said he anticipates inflammation getting worse for me within the next 5 years due to the level of flare and how quickly I came into a 2nd flare. Now I have learned to reasonably trust my GI and have grown accustomed to him. I appreciate him because he doesn't all out reject some of my lifestyle choices of food/diet supplementing to help me get through and ease things. And today he even stood by my decision to add fish oil as well as saw no problem with the juice fast I just completed with this weekend with some of our forum members.

Eventually we got around to the talk of him deciding to walk away from his practice at the end of this year as he will be moving his family out of state. He is beginning to transition his patients to his partner (who I have never met) but has suggested that he may be able to keep his phone lines open for me and some of his patients as a non-treater for guidance and support. So I have to start considering what my options are for new doctors (I'm HMO).

Just frustrated right now. And I have to take more time from work to get some small intestine x-rays and TPMT Enzyme test done to prepare me for Imuran. He says the next time I have a flare he wants to immediately put me on prednisone and Imuran and expects that at some point I will need Humira in combination with something else. I am trying my hardest to adjust my lifestyle to this disease and I feel like I have had to change a lot over the past 6 months since diagnosed.

I just hate that when I start to overall feel better, I am slapped in the face with the reality that this disease has the potential to make my life worse during a period where I have been trying to get my life back together and find some sort of stability in many areas. I need to accept that there may never be any stability in my life.

 

[Cat-a-Tonic]

Poor dear! I can so relate to this, particularly your last paragraph. I've been in remission for awhile now but I still feel like I'm always looking over my shoulder, wondering when the sleeping monster is going to attack again. On really good days, I can never 100% enjoy myself, because I find myself wondering when/how I'm going to pay for this, when the next bad day is coming. Worrying about the future is natural and I think that just gets compounded when you have an incurable illness, so don't beat yourself up for thinking like this.

If you're doing okay and not flaring, my advice is to exercise. It's the one thing that truly makes me feel human and normal and healthy again. Being in the gym is like my therapy. When I first hit remission and started working out, I told myself that I'm doing this to make myself healthier and stronger, and that I'll always be a work in progress. And that's kind of how I've come to view my whole life now, as a work in progress. I'll never be 100% healthy but that's okay, I can strive for 90%. As long as I keep working at it, I know I'm doing okay. If I hit a speed bump and have a crappy day, that's okay too, I'll just pick myself up tomorrow and keep at it. I think, with an illness like this, it's so easy to get down and worry about the future. I'd be lying if I said I didn't worry about the future. But I really try to focus on right now and just take it day by day and do the best I can.

That was kind of rambly but I hope it made sense. That, in a nutshell, is how I deal with the uncertainty of being ill and having a not-so-promising future ahead of me. I hope that helped a little bit anyway. Big hugs to you, I hope things start looking brighter soon.

 

[CrohnsChicago]

Thank you cat-a-tonic for your reply and support. I absolutely understand what you have said and try my best to do the same things you do to get by. However I do recognize that I do need to put routine physical activity more in the forefront of my lifestyle than I am at the moment. I was, but then this last flare got the best of me and I haven't been able to fully get back on track. I do like your mentality towards this struggle and appreciate you sharing it with me

I just really needed to vent yesterday and I don't have any one to vent to in person so here I was and am grateful for your response :heart:

I hope you are finding yourself in decent health currently and continue to see signs of progress and hope and stability

 

[Cat-a-Tonic]

Thank you. I am in fairly decent health. My IBD is in remission and is mostly quiet these days - my GERD is unfortunately only getting more severe and out of control though, so I am still finding myself going through tests and having appointments. On the whole though, I feel pretty well most days and can't really complain.

Feel free to vent here anytime! I don't get a lot of support at home either (family is unsupportive, in-laws are unsupportive/have been hostile at times, hubby tries to be supportive but is fairly clueless and gets frustrated easily) so I totally understand not having anyone "in real life" to vent to. It can be isolating but this forum has been wonderful for having people in similar situations who really get where you are coming from.

 

[ryanps]

This disease just sucks (pardon my almost French). I too have that look over your shoulder mentality. I know I shouldn't. I know I have felt the best I have in the last year since it all started. Recently had some drainage and it just set off a tangent in my mind of "What ifs." So now I am on Flagyl for 10 days but it just seems like before antibiotics contributed to my overall decline. Okay, sorry to ramble on about myself. I hope you continue to feel somewhat if not very well and that another flare does not strike. Wishing you the best.

 

[Cross-stitch gal]

I know where you are going for doctors. I got a second opinion with a different doctor this year and have been talking to her instead of my original GI. This new doctor has been great with me, but I'll be switching from an HMO to a PPO in january. So, will have not only a new GI but new primary doctor as well.

Hope all goes well with this new doctor for you. Take care.