I was somewhat discouraged. I went in there feeling really positive. Holly had been feeling pretty well, except for being so darned tired. I understand what you're saying about the surgery, it's just that I figured it wouldn't likely come for several years. Quite frankly, I was shocked that they were suggesting it. I haven't heard of too many her age, (15), already having to have a resection.
Tomorrow's a new day, and I hope I find a new attitude. I'm pretty tired and drained myself right now. Oh, our GI also told us today, that's she's leaving, and moving to Montreal in June. They haven't decided on a replacement yet.
Post Edited (chroniemomx2) : 2/9/2009 6:06:48 PM (GMT-7)
I'm reassured to see that there are others that share my surprise at the surgery option. I'm not sure that I understand stricture all that much. As I understand it, if there's stricture, doesn't that indicate narrowing from scarring? Wouldn't her BM's be quite thin and less frequent? She doesn't have any of that. If it wasn't for the fact that she was so tired, which is likely Anemia that she chronically had before, I wouldn't think that there was a thing wrong with her. Then again, being on Prednisone doesn't give a true picture.
Hi Gail, (Gachrons)
Thanks for the encouragement. I will keep you posted. Hope you are doing well.
It's shocking the first time surgery is suggested, but there is a good chance that it won't come to that. Within days of my diagnosis my doctors brought up the possibility of removing my entire colon. Things turned around, and almost two years later I've still got all my parts. Sometimes I think they throw out the worst case senario to let you mentally prepare just in case. Also, it depends on who you're talking to. The doctor who discussed the colectomy with us was a colo-rectal surgeon. As he put it, he's a surgeon. His specialty is cutting things. If a patient comes to him with a problem he's going to look for a surgical solution. He leaves the "medical" stuff to the other doctors. That didn't mean that he thought surgery was necessarily the best option- it was just the best option within his area of expertise. So if one of the doctors involved in this discussion was a surgeon, then I'm not surprised the topic came up. I wouldn't read too much into it just yet.
I'm not an expert on strictures, but as I understand it they can be caused by inflammation or scar tissue. Inflammation can be reversed, scar tissue cannot. That may be why the doctor is pushing so hard to get her on the Imuran. If they can get the inflammation down before it creates scar tissue, they may be able to avoid the resection.
Hi bektold and inflamed:
You both give some hope that perhaps surgery can be deferred. You both make good points regarding talking to surgeons and managing with a stricture. As "Rider Fan" indicated maybe getting rid of the small area that's a problem, is the way to go. I think this is my GI's thinking. I think she is suggesting this, then hoping recurrence is a long way off.
I did ask her about the stricture being inflammation, and she felt that it was more likely scarring, as inflammation is usually much puffier.
The one thing that's always confounded me about this disease is the degree to which my daughter has it. The Doctors have always been vague about that. I'm always tormented about that. Is my daughter a severe case? Having to consider surgery at 15 leads me to believe that she is. Or is she more mild. Our Doctor has used the word moderate, but it seems kind of non-commital. She won't lean one way or the other.
I just caught myselt getting long again, I'll stop there.
After having a nights sleep, (if you can call it that), I woke up with more questions and concerns. I shoud probably post my questions in another thread, maybe I would get some good feedback.
After leaving the Hospital yesterday, I realize now that the biggest concerns are:
1. How much stricture is present, and is it permanent. How much can be managed without surgery?
2. Starting Imuran. What to expect, plus how serious would it be if she contracted Chicken Pox?
3. What's causing her fatigue/tiredness? I thought Prednisone would give her considerable energy as it did previously. The GI doesn't feel it was the Flagyl. If it's disease activity, and she's not in reimission after Prednisone, then what?
4. The presence of blood in her stool. Even though it's only happened 3 times. I'm concerned that it's her intestine seeping.
I could likely come up with about 10 more, but rather than burn holes in the ceiling every night with worry, I'm going to try to be more analytical about it. THese are my main concerns. I want to make the best possible decisions to help my daughter get the best chance at this disease. I don't want to go blindly, just trusting any medical opinion I get. I do have confidence in our GI, but it's an extremely busy place. They are dealing with hundreds of cases.
Obviously, I can't give you any answers for question number one. But for the rest:
I had a little bit of a rash pop up on my arms when I first started Imuran, but that went away quickly. And I'm not 100% convinced that it was caused by the med. Other than that, I had no reactions to Imuran. It didn't control my disease as well as we hoped, but I never once picked up a cold or anything on it, and that was through two airplane trips and a full flu season. Can't say anything about Chicken Pox. Until you brought it up I'd never heard that it was an issue.
Are you monitoring her B levels? The are absorbed in the TI, which with the stricture isn't going to be working properly. That could cause fatigue. Also, all that inflammation eats up a lot of energy. It could just be the disease process. I believe you said she's anemic. That will cause fatigue. Add it all together, and that's a lot of fatigue. It's unpleasant for her- she'd rather be running around with her friends like any kid. But it's likely not dangerous or something to worry too much over. As she recovers from this flare her energy levels should increase.
Does she have any ulcers? What about hemrrhoids or fissures? If she has any of those, a little blood occasionally is to be expected. It's not ideal, but as long as it's not large amounts or happening constantly, again it's probably not something to worry about too much. It's another thing that should clear up as the flare ends and her insides get a chance to heal.
Hi Gail, (Nanners),
As far as I knew, the TI couldn't be reached with colonoscopy. I will certainly inquire anyway. As far as the Anemia, we are having blood done again now, so should get the results by next week. I would strongly suspect iron and b12 are low. I'm a bit concerned that she's losing blood, as she has noticed it in her stool a few times. THere may be more that she can't see, it's hard to say.
Thank-you for attempting to answer all my questions, I appreciate that. As I just posted to "Gail", We are getting her blood checked, and will see next week about that. Others have suggested hemmoroids too, but she's pretty young, and hasn't had any discomfort there.
Post Edited (njmom) : 2/10/2009 5:09:42 PM (GMT-7)
You really took alot of time to provide such a detailed reply and address alot of my concerns. I'm really impressed and appreciative of that.
I've read you post a few times and am confused about you take on surgery. What kind of treatment did your daughter end up getting for her stricture? Did you opt for surgery?
I'm really wrestling with exactly pros and cons you've indicated. I'm worried particularly about complications and a quick recurrence. The GI did say a 2cm stricture, but I'm not sure how narrow things have become. She seems to have normal BM's and quite large in diameter, not wormy at all. It seems that your take is to exhaust as much clinically first before considering surgery, or surgery as a last resort.
I believe the bloodwork requisition has most of what you're indicating. She was on an iron supplement for 2 yrs. and likely should have continued it.
I will check out the link, that sounds like a big help. I didn't know you could get a copy of the lab results.
Thanks again for taking the time.