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Peritsomal hernia repair docs - Rosemary

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Posted 5/4/2012 1:46 AM (GMT 0)
As you know I have been having real issues with blockages due to stomal failure. Getting runaround where I currently am. Unable to eat due to stoma not working. I know you all have posted your docs names for me and locations. I may need to leave my area to get the help I need am getting too weak to travel but time is awasting. and so am I.

You all gave me names of docs but which ones fix peristomal hernias I am positive this is what is causing my issue though nothing showed up on CT scan according to what I was TOLD. I can see a bulge to the right of my navel and feel the heaviness there. Obstructions can be caused my a peristomal hernia it is right on the internet. It's not a secret.

So if anyone has had succesfful peristomal hernia repair, log in your doc's name and location. I cannot believe I am being let go like this. Rosemary
Posted 5/4/2012 8:55 AM (GMT 0)
Have you considered seeing a general surgeon? It was a general surgeon who save my life when my small intestine perforated, and I needed to have emergency surgery in the middle of the night. Long story short, he was the surgeon on call, had never met me before, and did an amazing job. The sooner you can get in to see one, the better.

I would do a Google search for general surgeons in your area and call each one to find out how soon you can get an appointment. If you're too weak to drive, ask a friend to drive you or call a taxi.
Posted 5/4/2012 1:44 PM (GMT 0)
Seeing a general surgeon on monday. Local doc great reputation and I am SURE will take this seriously. I have called yesterday and today to see if he has any last minute cancellations. None yet. Hope I make it to Monday. RJ
Posted 5/4/2012 11:53 PM (GMT 0)
Rosemary, I'm so glad you have an appointment with a reputable surgeon on Monday! :-) You're going to make it. The human body is amazing and can survive on little or no food (but not water) for quite a long period of time. Just keep juicing your food and staying hydrated. You can always call 911 if you feel like you're going to pass out. I have faith that he's going to take good care of you and will fix this problem.
Love, Cece
Posted 5/5/2012 1:27 AM (GMT 0)
Thanks Cece. Rosemary
Posted 5/5/2012 2:08 AM (GMT 0)
Hi Rosemary. Sorry to hear of your issues. I'm not sure where you are located, but I have had to use three wonderful surgeons for my issues. They all are out of a group called Peninsula Surgical in Burlingame, CA. Th group is associated with Peninsula Hospital in Burlingame, a wonderful hospital with fantastic nurses. In 2004, I had Randolph Wong as my surgeon when a loose section of intestine flipped over another section. In May, 2010, Pamla Foster saved my life when a volvulous twisted my sigmoid colon 540 degrees. She had to cut out about 18 inches of my colon and give me a Temporary ileostomy. I had Aziz Abbad repair my stoma hen it prolapsed while I was in the hospital for pneumonia. Drs Foster and Abbad took care of reconnecting me since both were familiar with my case in July, 2010. And when I had a small bowel obstruction in January, 2011 as a result of my own stupidity (too much wine, not enough water on a 7 night cruise to Mexico), Drs. Wong and Foster took car of me, thankfully non-surgically. I trust all three implicitly to give you the straight story on your condition. (Almst said he straight poop, but that would have been a groaner.)

All three are general surgeons, though Dr. Foster does specialize in non-invasive bariatric procedures.

Best wishes and prayers that you find someone equally good.
Posted 5/5/2012 2:22 AM (GMT 0)
Thanks Bay Area Guy I am taking names at this point and will jot these down for future reference. Glad you got such good help. location is everything. Rosemary
Posted 5/5/2012 5:18 AM (GMT 0)
Well, I just did some research on peristomal hernia's. I THINK this is what I have. Here are my symptoms and they are exactly like in the articles about peristomal hernias. Further, it does say that CT scans can miss these as they are done in the lying down position.

Here are my symptoms and those from the articles:

1. Feeling of tightness and fullness around the stoma
2. darker color and increase in size of stoma; sometimes pain
3. affect of function of stoma
4. abdominal distention and bloating
5. more seriously it may prevent the stoma from working: this is my most serious symptom.
Looking back the tightness and heavy feeling around the stoma manifested a few years back. Gradually the stoma was able to not press out the thicker foods that it used to and I then had to start drowning it out of me with juices and so on. Then this March it stopped working. THIS SOUNDS like a peristomal hernia to me. These are very hard to fix, but I have no choice as mine is not working.. Plus I have all the positional issues. PLUS I gained 39 lbs after it was made. Was made at 99 lbs with me very malnourised as I was unable to eat for 13 months while searching for someone to do the ostomy due to the complications from the GYN surgery. SO, it has to be that. I will bring a few of the articles to the doc on monday. THey say he is excellent. Maybe he can fix this right here. There are bright shining star docs in small towns. Rosemary
Posted 5/5/2012 11:58 AM (GMT 0)
Thank God we have the ability to easily research our symptoms online and find out what might be/most likely is going on. Good for you, Rosemary!

I'm currently trying to help my stepdaughter diagnose what's wrong with her. She has had chronic yeast infections since October, takes Monistat, and it comes right back. She has developed anxiety, depression, brain fog, GI upset, and lack of appetite, and all the doctors have done is tell her that it's in her head and prescribe her antidepressants and Xanax. They're treating the symptoms, not the cause!

My online research shows that she most likely has Candida yeast overgrowth, so she is going to start a Candida cleanse and detox diet (basically no sugar) today. She has been to more doctors than I can count, but none of them have suggested this. It's so frustrating! shakehead

I pray that the surgeon you see on Monday orders a standing CT scan, finds the hernia, and fixes it!

Cece
Posted 5/5/2012 12:27 PM (GMT 0)
Cece yes she has Candida. BTW I just found a hernia repair center not super far from my house I am going to email them. Then enlist the help of my local surgeon Monday to do the upright CT if they do them, and a sonogram of the area. I think my muscle wall is separated right at my navel. Rosemary
Posted 5/5/2012 3:12 PM (GMT 0)
Did anyone ever have peritsomal hernia repair at Beth Israel Hernia Center in NYC?

They use a mesh. I just emailed them. Rosemary
Posted 5/5/2012 4:56 PM (GMT 0)
There's a Beth Israel Deaconess Medical Center in Boston? Saw an Mystery Diagnosis episode awhile back, with a Dr. Wolf, GI, from Beth Israel that diagnosed a rare case and she received many awards and is an advocate for women's health.
Posted 5/6/2012 2:55 AM (GMT 0)
Gi is disease, my thing is needed surgery though. Remember awhile back when we talked you said are you sure you don't have a peristomal hernia and I said I was TOLD I didn't and none showed on the CT Enterography. BUT i have all the symptoms. The article I found even said you can have stoma swelling (thus narrowing) CAUSED by the peristomal hernia. I had not thought of that when we talked. I also did not think of the fact that I developed a heavy tight feeling over the stoma at least 2 years ago. Because I had no obstructive symptoms I mentioned it to my current surgeon, he said no worries, so I didn't. BUT he is also the one letting me go with a non-functioning stoma, so should not have put that much faith in his words, but had not run into issues as I have now. The other things I have that the article on peristomal hernias says is that the stoma can swell, turn darker, the heavy feeling can get worse, the bowel move pattern can be distorted (as in fragmented as I have now). The hernia makes the stoma narrower thus the symptoms of a narrowing. So if not stricture, then it is peristomal hernia.

I am wondering how long it is humanly possible to be put on hold while this is figured out until bowel dies or the person dies? Will I get poisoned from backed up waste, have a small bowel major obstruction, small bowel blow out, or will the hernia (or stenosis) shut the thing off totally? The article said to report ALL function disruption to your doc as I have to two surgeons with a third one on Monday. I am like what is up with them? If I had a patinet call and say their stoma is not functioning I would freak out FOR them!

Another day on liquids. just hope they all absorbed or came out. HOPING FOR HELP Monday. BUT one never knows. Am going to call for soonest appt at Beth Israel New York City. I COULD call Beth Israel Boston and just ask if they do peristomal hernia repairs? But I think that for whatever reason I am being let go to suffer like this, maybe getting out of my area might be the smartest thing. Whatever aura I carry that allows docs to just go "oh well, stoma not working not to worry" maybe out of the area I would get different response?? Who knows. Rosemary
Posted 5/6/2012 6:26 PM (GMT 0)
YOU WILL NEVER GUESS WHAT????? THe ileostomy hospital that saved my life with the ileo in 2007 is now being cited for turning away ER patients as they did me April 5th sending me out without being able to eat or drink. WHich in turn triggered my admission back to the ER april 6th for vomiting and dehydration then they sent me out again unable to eat or drink. That is twice in 24 hours!

THEN by the time I got to my GI appt on the 6th I was so dehydrated I had tachacardia. The GI was shocked that I had been sent out of the ER twice. I guess I was not alone. I guess it has been a trend. Luckily he admitted me right then and there.

WHO DO WE TRUST??? Am still slugging my liquid diet. See local surgeon tomorrow then if no go from there I need to contact NYC peristomal hernia doc center and HOPE we get some action. cannot go on like this. Rosemary
Posted 5/7/2012 7:07 AM (GMT 0)
Rosemary,  The surgeon at Ucsd Thornton Hospital that I told you about is Dr. Garth Jacobsen (or Jacobson).  UCSD Thornton is located in La Jolla, California (part of SD County).  At first my Gastro wanted me to see this doctor but when I called Dr. Jacobsen's office they said he is an expert at repairing hernias.  When I explained about my small intestine being seen (on 3 different tests) as blocked, twisted & narrowed) his nurse said; "well, if you had a hernia he would be the guy to see."  When I explained that I had an ileostomy she said, "I think if you had a hernia next to your stoma, he could do the surgery."  So, you can see, even with him as a hernia specialist it wasn't totally clear that he could help someone with a herniated stoma.  You would probably have to talk to his office or have your Gastro contact him.  If you do decide to come out here, please let me help you!  I have been where you are, so many times in the past and I didn't get the support I needed.  Miracuously, for the past wk I have felt great (could be the very low dose Fentanyl Patch I am using).  Whatever, I so much want to help others with these horrible ileostomy complications!!!  I am praying for you and really, I will help in any way I can.  I am supposed to be hearing from another great surgeon at UCSD this week; but now I am really confused about my case.  A week ago Friday I was back in the ER but for the past 7 days, I have been feeling GREAT!  Anyway, let me know if there is any way I can help you.  I have almost died twice because of ileostomy complications and have felt so hopeless and helpless at times.  I always told God that if I could just feel good again I would help others with similar problems.  I am here for you; please don't forget that!

Gilda

Posted 5/7/2012 12:32 PM (GMT 0)
Thanks Gilda. I jotted down his name. Today I see a local surgeon who I am hoping can at least tell me what the issue is definitively. Also I am going to call Beth Israel in NYC who has a whole department that does peristomal hernia repairs and see how far ahead one has to book prior to being seen. The place I go that has been cited for turning away ER patients, is not moving up my ileoscopy. I am going to ask the doc today if I have a peristomal hernia would having an ileoscopy in fact be dangerous. Going through trapped small intestine, hmmmmmmm! Anyway, thanks Gilda.

Seems like your symptoms come and go. Could you have a twist that keeps coming and going?/ like twisting then untwising? Kind of hard to figure. ANyway, hope you stay feeling well. Thanks, Rosemary
Posted 5/7/2012 6:57 PM (GMT 0)
Rosemary: let us know if Beth Israel is turning away patients from their ER so we can all avoid them.
Posted 5/8/2012 2:03 AM (GMT 0)
Hi Cleo I have an appt at Beth Israel so hopefully will not be dealing with their ER. That appt is to rule out peristomal hernia. I read they do a sonogram.

The local surgeon I saw to day said "maybe i have a small one" then i showed him how my right side sways way out and he said that could be it. My right side is aways from my stoma. BUT, who knows. He said he did not feel a difinitive one. He said the swollen slowed stoma could be from adhered small bowel loops further back in my pelvis that did not displace easily during the retrograde enema scan. So that is what that meant!

I guess the bowel loops are scarred to eachother side by side so they don't peristalse but they are not scarred shut. BUT why have they been ok for 4 years. This doc was honest. He said the reason nobody wants to do anything is that they don't want to create more small bowel scarring. That is a point! But as I am having to drink all my food and nutrition is an issue, this is a tight spot. EVEN THEN I can go into pain. Sleeping is a nightmare, I blow up like a beachball and stool no longer passes unless it is really lose and I lie on my right, then that aggrivates the right sided pain. BUT at least the man was honest.

SO, that was today's consult. I really wonder why after 4 years these adhesions suddenly decided to grab loops of my small bowel and become symptomatic. He did say that when I get my ileoscopy, if it was safe to do so it would be wise of me to ask if they can suction the infected mucous out of my cecum as now I have pain in that area right under the stoma. Maybe the swelling of the cecum is affecting the landscape of the ileostomy stoma. That would be the easiest solution. So I will try to get that done.

Meanwhile I really need relief of pain to sleep. I got NO Sleep last night at all. What a f--- nightmare this is. I am sooo glad I traveled the four years that I did. If the dancing gave me the peristomal hernia if that is what it is, then nobody told me not to nor to wear a binder. maybe I should have. Who knows if they are not told. I never lifted anything. Rosemary
Posted 5/8/2012 3:12 AM (GMT 0)
Rosemary,
I understand your frustration. Sometimes, scar tissue wreaks havoc on our system in what might seem like overnight to us, but in reality, it has been growing for some time. Unfortunately, it is a side effect of having abdominal surgery. From my experience, it's worth having surgery to remove the scar tissue and the blocked bowel, because if you don't have it done, from what I understand you could die. If he won't do the surgery, then I recommend finding a surgeon who will. I'm really sorry you're going through this. I've been through it twice and understand how unpleasant it is.
Love you,
Cece
Posted 5/8/2012 3:29 AM (GMT 0)
Cece,

I know. All my friends are like why would you have more surgery as that is what got you into this in the first place. You are right, the threat of future bowel obstruction is real. One friend said to me today, well if you ever totally block THEN you could get the surgery. I am like if you totally block and your bowel ruptures, then you get peritonitis, sepsis and death. My mind set is well why wait if you can prevent it? Plus others do not live with this pain of being partially blocked. So I am going to keep my options open and keep looking.

There is this doc in Germany who some people rave about BUT he is at a very small clinic and with an ostomy a WHOLE LOT could go wrong. There is another German doc in DUiseburg at a bigger hospital that May use spray gel that is supposed to be good at retarding adhesions. He is university affliated very important in Germnay.

Where did you have your adhesion lysis?

Poeple without this issue are operating in one mind set and we in another. Is it like every 4 years or so we have to have lysis of adhesions? If I could get another 4 or 5 years or pain free functioning ostomy I would do it in a heartbeat!

Rosemary
Posted 5/8/2012 3:34 AM (GMT 0)
I have appt at BI in NYC and at Mt. Sinai just for info gathering. At Mt. Sinai they do this thing with pig porcine skin to reinforce abdominal wall if it is a peristomal hernia and that suppoesedly does not have the bad things that can happen with it that mesh can. EVERYTHING has a risk. Had I to do life over I would have nothing done but emergency things done laporoscopically. No hysterectomy, no pelvic organ prolapse surgery, then the ileostomy and lysis of adhesions were needed to live, so was lucky to get someone to do that or I would have died 4 years ago, but I need to shop and choose wisely.

I am going to email a few contacts I have to see what has been developed in the adhesion department. They are contacts I made when I was just interested in future develpments in that field of research. Was HOPING I would NOT have to have another surgery, but..............who can stand this pain, unable to sleep and unable to eat. I am like what the h---- am I really living? No travel no dance no friends (soon they will drop me as I'm not able to do anything). what would be the point in keeping on going?

BUT I MUST Choose as wisely as I can. BUT not delay too long. Rosemary
Posted 5/8/2012 12:09 PM (GMT 0)
Hang in Rosemary. What you and Cece said makes sense -- another surgery is worth the risk. Hope you figure out the right person, place, and type.... thinking of you.
Posted 5/8/2012 3:20 PM (GMT 0)
Hi Rosemary,

I hope NY gets your issue resolved. I have a friend who went there and had a temporary ileo done there. Great place.

Also, don't worry about peritonitis and sepsis. I had them both twice and I am still here and I great shape. Like I always tell you, we can drop dead from anything at anytime.

I will give you a call this week.
Posted 5/8/2012 3:46 PM (GMT 0)
Thanks Blue and pilot My friends will totally drop me if I have another surgery. They DO NOT GET IT! How can I impress on them that it is not normal to not be able to eat, get nutrients and pass waste. What of this do they not get. I never should have taken that one friend with me to the consult yesterday where the doc said more surgery NOT a good idea. That was HIS opinion and clearly he did not want to be the one getting into it. I think he was sincere as he is small town general surgeon and likely did not possess the expertise needed. He WISHED he could do something. BUT where do I find an adhesion expert?

Rosemary
Posted 5/8/2012 4:32 PM (GMT 0)
ask my doc at penn. he does removal during surgery.
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