Bummed...

[HARVinTX]

Hey Crohnies:

I've been turning to the forum for support since my most recent obstruction 10SEP12 (although my posts until now have been in support of others and that was personally supportive) but today was an awakening. 6th obstruction in 3 yrs.

Me: CD since 1991. Resected 2002. Failed meds: asacol, imuran, Cimzia, entocort. Prednisone works but my current flare took 4 weeks to respond. Had a CT Enterography in SEP and my GI nurse called and said I had a fixed stricture (that is when I started pred again). For the last 7 weeks I was mentally preparing for another resection to have my "fixed stricture" removed. My first resection was absolutely miserable and although I am usually tough as nails I really appreciated the mental prep time before getting my surgery consult.

And today was to be the day....to see GI and get that consult...

You know there is a big difference in getting results from a nurse and sitting with my GI doc today...who told me that the stricturing was extensive....3 long strictures affecting half of my ileum.

I've been in healthcare for nearly 30 years and today I fully understood why test results are often given in person....

Me: I'm the strong the one... The one with a plan... I don't tell many people about my illness and when flaring and in pain, I don't want anyone to see me. So there I was, sitting there listening to my GI doc tell me that this is not a good surgical option. I was stunned. That almost never...ever...happens.

Okay, the good: I have had improvement with pred, so some of the stricturing is inflammatory. We decided to try remicade. I have failed all other meds so I am apprehensive. Not concerned with side effects as I am looking ahead and the alternatives are not rosy. I did get a surgical consult and will see him in 2 weeks. I expect that he will agree GI doc but at least want another opinion.

So it's been a tough day...and now I am turning to any who will read this and respond. Not sure what to expect but my partner doesn't really get it (and I know there are a lot of us in that boat I know there is also a local support group and have it on my calendar to go to the next meeting and connect with them.

Thanks in advance for any support!

 

[KayleighMeek]

Hello
So sorry to hear you have been through a tough time lately. I haven't ever had surgery so I have no idea what it's like but I can imagine its tough. I have been on remicade before though and it was great for me and I had a good year in remission from it, I also don have a great time with medications working or not working for long.
I just wanted to let you know there are people about wishing you the best and hoping this works for you

 

[kat-y]

Hi I don't think anyone can really get it unless they've sat and had this type of news given to them by the GI. It's incredibly tough esp if you are not in the habit of sharing how hard mentally & physically this stuff is. Thoughts are with you for whatever is ahead now.
I've had a resection and it was tough for months after, I've never been ill until that and didn't expect to live with this type of disease. That's hard in itself so is posting personal stuff on here but it helps me so I hope you get some sense of help here to. Sometimes easier to say you are struggling on here than face to face with friends and family.

 

[nogutsnoglory]

Sorry to hear what you have gone are going through. The CCFA support groups really are helpful in my opinion and it's nice to just be among ppl who get it.

Of course we are an online support here and we get it but I think there is value in the face to face meetings.

 

[HARVinTX]

Thanks NoGNoG!

It's been a year since my original post and you may have noticed by my recent activity/posts that things have not been going well lately. You would be right. I think I am am very close to my next resection as I am in pain every day and having a hard time finding the foods that don't hurt.

I am in a much better place now than I was a year ago and fine with doing my next resection. My first one was an incredibly miserable one but I know I am ready now. I have a supportive partner and great work place as support. Plus I will stay in contact with the forum during the ordeal.

On another note, I have been thinking of the stoma dilemma and dating. My thought is not to lead with that "insert humor". Dating is so much about attraction but we are more than our bodies and we should not define a relationship with only the physical. If physical does take priority, then I would suggest on waiting to see what comes of a reversal. Just my 2 cents

Thanks for reaching out to me!!!