esoR Update

Well, with all my tests from the current hospital being "negative" and still no dx as to why my stoma does not work. I went today to appt at Mt. S. in NYC.

They did the test you need to do and did finger dilations of stoma. Severely tight. For awhile afterwards I felt like a new person was passing gas like I have not in 3 months. The stoma really is stenosed no matter what test said what at the place I have been going. Place I Have been going had to use ALL very narrow tiny catheters for retrograde enema xray, tiny pediatric gastroscope for ileoscopy. Of course with all the tiny stuff anything could look good. BUT what was not done was the obvious. Finger test done by two surgeons today. First one used his index finger. Not a large person but wow did that hurt. The older one used his pinky finger and it was not so bad but was still tight and my stoma simply is not functioning. There is no functional disorder that would apply to me and the stoma still remains swollen so the stoma is the issue.

So they did book me for surgery on Monday and I check in on Sunday. If it is the simpler repair and the stoma is stenosed at the skin level only they just redo it locally and detach and draw out more bowel and make new stoma. BUT if it is stenosed at deeper level then they have to do open surgery. They do not use Seprafilm adhesion barrier which that part I did have good luck with at the lysis of adhesions and ileostomy surgery in 2007. Sooooo that leaves me with help but no Seprafilm. That part makes me a bit nervous. The senior partner is world renowed and both are VERY nice and I could tell were asking all the right questions and making a plan and had accurately read my records and figured out all that I had been through then asked me relevant questions. So seems like I have the offer of some good help.

I have some BAD abdominal cramping tonight and not sure what is up. If the stretching of the stoma did something or what. No obvious issues such as blood or anything but am a bit scared. Have like this weird diarrhea coming out. Auugh! But they took me seriously and I felt just like ME again after the stoma was stretched open, though now it is closing again. BUT would be great if I could FINALLY get this dealt with. I don't know if their hospital endorses seprafilm as a whole or not, but I could ask again about it???? Give me your thoughts. Am sooo weak from all these 3 months with no food. Augh! Rosemary

WHOO HOO !!!

I am so happy to hear that you are finally getting some answers and hopefully a resolve with surgeons willing to help you.

Sorry it has to be surgery, but if it fixes your problem, it is worth it.

Hang in there

Maybe the cramping and diarrhea is just your body ridding itself of stuff that hasn't been able to come out for awhile. Hope you feel better soon, and the surgery goes well.

Oh, Rosemary, I'm so happy for you! What an answer to prayer! I'm so thankful that you didn't give up in finding a surgeon who would take this seriously and help you. I've had really good results with Seprafilm (no adhesion problems in 3 years), so it's worth a shot to ask about it again.

I'm praying that your surgery is a success. You deserve a steak dinner at a 5 star restaurant after all of this!

Love, Cece

Maybe you'll be my roommate, LOL. I should still be there Sunday, too! I am so happy to read this! It reminds me of when my middle child was very ill as an infant and I spent a lot of time advocating for her and on the phone with doctors. Eventually a problem was found, treated, and there have been no problems since. I really hope it goes that way for you, too.

Best wishes with your surgery! Mt. Sinai is the best.

So glad that you will finally be getting the care you have needed for this issue. Stay positive. :)