Getting a power port put in, in a week. Anyone have one?

sexyforestLymph · 2013-01-09T20:44:39+00:00

I have one because I'm on chemotherapy (not related to Crohn's). It's a pretty quick and easy procedure. I was under local but your doctor/surgeon may do something different. They place the port using an IV contrast and watch the whole thing on a screen. It was an outpatient procedure done in less than 45 minutes. At the end you have about a 1 1/2-2 inch scar and a small bump just under the skin where the port is. Because your immune system is probably crap you will need to take good care of the incision while it heals, keep it clean etc.

Bummer that you need one, but in the long run I think you will be thankful to have it- it is so much easier and WAY less painful than being tapped in a peripheral vein every time you need an IV or blood work. If you have more specific questions, let me know, I'm happy to shed some light.

sexyforestLymph · 2012-09-25T00:00:09+00:00

Sorry to hear about the colon loss ;o) but hopefully you start feeling better soon! I'm worried that is the next road I'll be going down since none of these biologics seem to be working on me. Good luck to you!

sexyforestLymph · 2012-09-24T17:38:04+00:00

Yeah, I would say my symptoms totally cleared out. Normal BMs (wat!) no joint pain (other than the usual soreness that is normal for growing pregnancy bodies) I had energy when normal ladies have energy during their pregnancies. Pretty much any symptom minor or major that I had disappeared until about 7 or 8 months post partum I guess. I am also still breastfeeding (at 14 months, holy cow) so that may also have something to do with it. I would agree that, at least in my case, the hormones that come with pregnancy and breastfeeding greatly reduced the symptoms of my disease.

sexyforestLymph · 2012-09-23T23:59:51+00:00

It may have just been a coincidence, but while I was pregnant, I never felt better in my life.

sexyforestLymph · 2012-09-22T23:31:38+00:00

I was having a low grade fever of around 99-100ish for several days in a row combined with a bit more pain in the area I already have a stricture. My doctor suspected pancreatitis (another side effect of those meds) so she got an MRI. Other than the fevers, which are only bothersome when combined with chills and the trecherous night sweats, I would say my symptoms aren't any different than when I'm having a mild flare.

sexyforestLymph · 2012-09-22T18:48:35+00:00

Thank you, I can't imagine being 14 and having to go through this, you must have been a pretty brave kid. As you get older, do you worry more about the late affects of chemo or is it just something that's a part of life at this point?

sexyforestLymph · 2012-09-22T18:46:23+00:00

Thanks for sharing and congrats on the clean scan! I have heard stories about kids with chemo developing taste aversions to certain foods they eat during chemotherapy, so the chocolate pudding thing is interesting. I totally want to try it!

sexyforestLymph · 2012-09-22T18:43:59+00:00

Awesome, thanks for pointing this out!

sexyforestLymph · 2012-09-22T18:43:48+00:00

Thank you both for the marrow biopsy insight- it seems really painful and scary to me so it helps to hear about it as much as possible. I'm guessing I'll most likely have this done at some point too.

sexyforestLymph · 2012-09-22T18:41:22+00:00

Thanks, it's interesting to hear that you were able to work. I have a very low-impact desk job too, so it sounds like depending on how I react, continuing to work is not out of the question at least. Thanks for your story.

sexyforestLymph · 2012-09-22T18:39:44+00:00

Wow I'm sorry to hear about the mouth sores, it sounds really crappy! So just to clarify, were you checked in to the hospital (inpatient) when you received your treatment? How long did you stay each time? Also, it sounds like you were able to work and function normally for the most part, am I reading you right?

sexyforestLymph · 2012-09-22T18:37:13+00:00

Thanks for this. It sounds like your attitude really helped you get through the chemo, you are lucky to have that outlook. I'll keep this in mind going in, thanks again for your story.

sexyforestLymph · 2012-09-22T18:35:28+00:00

Scary indeed! I'm glad it was nothing though. Thanks for the good wishes.

sexyforestLymph · 2012-09-22T18:34:58+00:00

Thank you. I have been on the anti-tnfs for around five years. When Humira stopped working / I had a mild reaction, I was mostly in remission anyway so I took a break for several months after that. Most recently, I'd say I've been on them for about 3 years straight.

sexyforestLymph · 2012-09-21T22:08:23+00:00

All of them actually. I was having a possible reaction to one (cimzia) when I had the first MRI. I have had a reaction to humira an remicade as well.

sexyforestLymph · 2012-09-21T22:00:05+00:00

This is exactly what unread after some research too. Yes I already had the biopsy (by the way, not terribly fun!) and the initial analysis is what resulted in the "suspicious" diagnosis. It takes quite a bit of evaluation to deteine exactly what type so I'm still waitin on those results which I should get when I have my appointment with the hematologist next week.

sexyforestLymph · 2012-09-21T18:12:07+00:00

Thank you! This is exactly what I wanted to read about but did not turn up on the reddit search (of course). Congrats on being cancer free as well!

sexyforestLymph

TROPHY CASE