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Rosemary Another small bowel obstruction coming?

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Posted 4/20/2012 7:16 PM (GMT 0)
Today I talked with 2 stoma nurses and they said the stoma pics looked like it could be a stenosis. Plus I sure have the symptoms. The digital exam easter was very tight. She was very nice and when I called and told her of the periumbilical pain that came when I ate solids, but that if I could just drink with no nausea and no pain I would just stay home. She said that is the code. BUT, if I start to vomit, the pain comes, stay, and gets worse, then to come in and call the on-call. I explained how the current ileo surgeon had not even looked at the stoma and that by resident digital exam it was very tight but nothing seen on all the tests. The liason contacted some psych person I am like this is SURGICAL not psych! I do see why they do get sick of us frequent fliers BUT. The GI doc still in my corner but says the stoma itself is a surgical consult issue. Have May 24 appt with the new surgical consult.

There is a doc in FLorida who redoes stomas if that is the issue. I did get in there May 15th but am not sure if can get there at this point. Then a place north of me told me to send records. I felt so awful that I just emailed my stoma pics and am going to take a nap. BUT if better tonight or tomorrow I may work on it and fax records up. It is hard to do all this paper work when feeling so horrid. But naturally they would need records.

This does admittedly LOOK obsessive, but people with these issues are in a LOT of trouble. Those who are still in my corner are of a great comfort.

I wonder how Gilda is doing. I hope she got her bowel untwisted. This is hard. I think of giving up so often, but life has been so good I think if anything could be done I would go for it; at least give it a shot. Have been OK for 4 years so far. My stoma nurse is ALL GOOD! Wish she was a surgeon.
Posted 4/21/2012 12:09 AM (GMT 0)
Rosemary wish I had some helpful advice....so sorry you are dealing with all of this. Prayers and hugs to you!
Posted 4/21/2012 12:55 AM (GMT 0)
Still praying for you Rosemary and hoping this all works out. It is scary to think of what can happen and the lack of help that may exist.
Posted 4/21/2012 2:29 AM (GMT 0)
There is NO help. ONce one is just so scarred no doc wants to deal. Are they just going to let me die? This is going to be a very slow painful death. There is this place called Dignitas In Switzerland wish it was closer and I would just go there as I think there is no hope for me. And to think all this sprang from a pelvic organ prolapse surgery that on review was not even needed. No disease and I am being left to die of scar tissue.

I am sooooo glad I traveled all those trips. I also know that so much of my life I spent over working and over caring for family elders to the extent of ignoring myself and my needs. I wish I had had children. My friends are all concerned and all call, one did go with me to one appt and one might go on another appt. But these appts are a month away. by mid may My stoma opening will have been almost closed for 2 months. 2 stoma nurses said that the pics sure looked like a stenosis. I know it is, there is no mystery. NO doc wants to deal because if I got more scar tissue and died it would look bad for them, but I would rather try something than this. I even wrote to an advocate who did not have much to offer. SHe said get in their faces. I do and they drop me. One liason I had said she was lining up a new doc for me. I assumed a surgeon to help with the stenosis. NOPE it was a psychiatric doc. I said this is a stenosis not a mental illness. The poop hole is blocked SIMPLE!

Thanks for support. Had an appt in PENN. Doc cancelled for own emergency. I understood, but then was told I would need an ileoscopy first but the hole is too small to get that done. THEn was told the doc may not do stoma revisions. Certainly his right not to but glad I was told prior to getting down there.

I have an appt in FL. if I can get there. TOTALLY out of my area with a very great doc by reputation. It may be my best bet. BUT so far and would likely just take a chance on flying but may obstruct in the air, but at this point I'm like whatever. I would have to get someone to go with me. I just pray at night that I not wake up vomiting. I had been OK for two weeks since easter weekend but today it hit again.

Gilda had said that she would have some good days too and neither of us saw how because she had a total bowel twist. I wonder how she is doing. She is in scripts Encinada if anyone is out there. I pray for her.

This is a nightmare. Thanks for support. I am open to ideas. Maybe I should try Blue's doc at big boston hospital but that is where they locked me in the psych ward when my rectum was scarred shut. All this psych stuff is to just put the onus on the patient and get it off the docs who are not doing anything. OR if there is nothing that CAN be done, they need to simply be honest. Rosemary
Posted 4/24/2012 4:19 AM (GMT 0)
Hey Rosemary,  One new product I just heard of is called, Serazyme.  It is an oral supplement that has been used for over 20 years in Germany (and some other countries); it breaks up adhesions, blood clots, etc., etc.  I looked it up and found that several "vitamin" manufacturers make a similar product but under different names.  The best one I found was the company called,  Hannigan's Vitasentials and the product is called, "

Mega serrasilk.  Anyway, as far-fetched as this sounds,  my mom's friend used it to get rid of adhesions and said it really works.  Do some research on it; just because the FDA hasn't done a study on it doesn't mean it isn't good.  My mom's friend has Macular Degeneration (blindness caused by scar tissue).  He has regained some of his sight due to the product dissolving (eating) some of the adhesions in his eyes (scar tissue).  I ordered some; it is definately worth a try!

 

Gilda

Posted 4/24/2012 10:37 AM (GMT 0)
Serazyme. SOunds good. I will check it out. Rosemary
Posted 4/24/2012 12:00 PM (GMT 0)
Rosemary, so sorry that you're still having such a hard time. Hope you get some relief soon.

Just a random "out of the box" thought: it might not be terrible to go see a psych doc -- not because you're crazy, but as another potential advocate and ally. It seems like some of the surgeons and such are confusing your very real and appropriate fears with the actual medical issues..... and if a psych doc could help THEM sort that out, it might help you. You could look for docs who are likely to be sympathetic and choose your own (weren't you in therapy at some point? do you have someone who could recommend someone to you?)

I don't think it's good for you to go down the road of "they would all rather I die." That's a huge generalization.... I'm sure it feels that way sometimes, but if you approach a new doc thinking, "s/he would rather I die than help me" then it's going to distort how you present yourself and how you hear whatever they say.

How are you doing now? Hang in, thinking of you.
Posted 4/24/2012 12:55 PM (GMT 0)
Hi Blue,

Actually my current counselor called me yesterday upon return from her vacation and flat out said send me written permission and tel numbers to call and advocate for you on your behalf. And tell me who you want me to call. So I am working on that now.

Also the psych nurse from Lahey who called yesterday was super and he left his tel number. He totally viewed my issues as physical surgical and NOT psych And he did say call me if I need anything. SOOoo you are right I could use these people as advocates. He totally got it.

Just going to get records off to Dartmouth as potential help and possible appt with at least their stoma nurses. Still working on this full tilt. Then back to bed for a nap. Can eat so little I just have no energy. I do see what you mean about my generalized belief and I will work to go in with good attitude to new docs just so long a fight. The ER doc at local hospital this weekend was fabulous so they are not all into letting me die. Good comment and i will work on that. More later.Thanks blue, Rosemary
Posted 4/24/2012 1:30 PM (GMT 0)
That's excellent that you have a counselor who knows you and will advocate for you! One thing about the mental health people -- in general they are a lot better listeners than surgeons, and so it makes sense that they are going to be able to cut through whatever superficial fears and such you're presenting and get to the main issue... and then maybe the surgeons will listen to them more than to you....

Glad the other comment re approaching docs was helpful. Maybe you could come up w/an affirmation to say to yourself before and during doc appointments? I'm not sure what would work for you, but something like, "I take good care of myself and I accept help." Not sure that's the right thing, but something that captures both that you're open to help and that you're paying attention.

When I was in grad school, I realized that I was telling myself about 100 times a day that I was stupid and didn't belong.....decided if I could do that, I could craft another message, and so whenever I approached the building started saying, "I am intelligent and competent and I deserve to be here." It really helped, and I said it so many times that I'm sure it was those exact words.... not the same issue, of course, but I keep flashing on it....
Posted 4/24/2012 2:13 PM (GMT 0)
Thanks Blue. After hearing from the ER doc, my PCP did end up calling for sooner appt with new surgeon at Lahey than may 24th. I will call later today and see if they have arranged anything. I SOOOOO Wish I had met my current couselor years ago I would not have gone the route I went. Rosemary
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