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Posted 4/5/2012 5:27 PM (GMT 0)
I think.

So in January I had a small bowel follow through to see why I had some random pain behind my stoma. Apparently I had some inflamation. I saw my ibd doc and he said that it was inflamation from the Crohns. He said he wanted me to go back on Remicade. I was on it about 9 years ago and it worked pretty well for about 8 months and stopped working.

He also ordered some blood work to check all of my counts. Got the results back and basically I have no iron. I' am pretty sure that I have not had any for the last 2 years. Some of it may have to do with the constant bleeding from my butt wound and the crohns. I also think that may be a big contributing factor into why my wound is not healing. I really don't know what to think right now, because I did specifically mention to my surgeon and the wound care nurses that maybe I wasn't healing because I was deficient in something. They just blew it off and said it didn't matter.

So I ended up getting my first iron infusion last sunday. A few days later, my stool started thickening. Now for the last year I have been emptying about 10x per day and it was always pretty liquidy. Seemed like everything I ate came out in a few hours and I would have to go to the bathroom to empty. I thought that was normal. Since my iron infusion it has been coming out really slow and I have only emptied a few times per day. Maybe this is how it is supposed to be? One thing I noticed since I got the iron is that the output STINKS!. I usually go about 2 days before it starts smelling up the bag. Now after the first day it's pretty bad. I hope that goes away.

So I also started on Remicade on Tuesday and they also put me on the dreaded Prednisone. Luckily I started 40mg on Monday, 35mg Tuesdsay, 30mg Wed and all the way until it's done. So it's not long term. I am glad because I was afraid of that.

So here I am on Thursday and I had another Iron infusion and let me just say I am sooo hungry. Don't know if it's from the Iron, prednisone or remicade. I went in for surgery 2 years ago for my proctocolectomy weighing 160ish pounds and I have been strugling at 130 for the last year and a half. I have gained 6lbs in just 2 days. Maybe I am on the right track. I am just hoping now that I have a few things in check, I can gain my weight back, energy back and have my wound healed and get on with my life.

Sorry if I sound like I am rambling here. My mind is going crazy, maybe from the prednisone.

 

Posted 4/5/2012 10:54 PM (GMT 0)
Hi Brian -- sounds very promising! As I was reading, I was thinking duh, why didn't any of us suggest inflammation when you were writing about the pain behind your stoma.... but glad you're getting treated.

Do you use anything in your bag for odor? Maybe it's smelling more now because it's more concentrated. Although it makes sense that the iron could also be causing that. Have you asked? In any case, you might try some hydrogen peroxide in the bag (the 3% kind that comes in brown bottles in the first aid section of the drug store).

Probably the pred is driving your appetite, and it's great to be on pred when you need to gain weight.... eat away!

Hope this is the turning point!
Posted 4/6/2012 12:59 AM (GMT 0)
Brain:

Glad you are getting better...AND, that the Dr.'s and nurses finally listened to you!!!

I had been feeling like crapola 6 months after surgery and decided to see my general practitioner. AFter a long discussion, she decided to put me back on 5 mg/day of prednisone (that was in Sep. of last year). I started feeling better and tapered off the 5mg/day through January....I'm off drugs now and am feeling like I used to feel when I was on prednisone (LOL!). I have to tell ya, the first thing my general practitioner did was order blood work..luckily, all was well.

You are lucky you didn't have a stroke from low iron! Yeah, the output probably stinks because your body is back in true recovery mode from the iron, from the food you are now eating and ingesting, not sure what the remicade is doing (I hate that drug!).

Yes, emptying just a few times a day is normal for a healthy stoma, healthy ostomate, etc... you must have been badly dehydrated to??? If the output is too fast, liquids (e.g., water) can't be absorbed well either.

AS far as the smell...do you use bags with filters or without????

Keep on recovering! tongue
Posted 4/8/2012 12:18 AM (GMT 0)
Blueglass-When I go anywhere I use M-9, but it doesn't really help that much. I've thought about the Hydrogen Peroxide but I have not gotten past the thought of it touching my stoma yet. Maybe I will try it soon.
I don't know if it's the combination of the prednisone, Iron or remicade but I am SOOO hungry. I have been struggling to gain weight for the last 2 years and in the last 4 days I have gained almost 10lbs. There is really not a lot of output coming out. Like I said before I was ALWAYS constantly emptying every time I ate. It was really frustrating. Now I feel like I can pretty much empty on my time.

Enigmawrap-
I am glad this is finally getting under control. I was thinking, what have I done? Am I going to feel like this the rest of my life and let my ostomy run my life?
I also don't know if I should be upset or what I should think when I specifically mentioned wanting to get my bloodwork tested to my surgeon. They said it would have nothing to do with my wound healing. We probably could have figured out that I was anemic right away and I got have gotten treated. Instead I have had wound and bad health for 2 years. I just feel like that went down the drain.

Does that horrible smell go away once your off Iron? I mean I was used to the first day or two after a fresh bag I didn't really smell much. Then if I ate something smelly then the bag would smell after the 3rd day and after the 4th I would definately need to change it. Now, after my first output it smells pretty horid.

I also was thirsty constantly. I would always want to drink something, but always feared that it would come right out. I started chewing ice a lot and I think that is something people with low iron do. Now I don't have that weird craving.

I do not use bags with filters. I have tried them a few times but found that they smell and the filter gets clogged and stops working.
Posted 4/8/2012 1:08 AM (GMT 0)
Glad to hear you are getting positive results!!!
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