UPDATE: Parastomal hernia repair questions

[smashms]

Hi everyone i am writing from my hospital room yet again. Was admitted last wednesday with a small bowel obstruction causing extreme pain and nausea and vomitting which continue to this day. i can still only handle small amounts of clear liquids. thankfully i think we have found a pain med that isn't iv that seems to be working at least a little bit. but still on iv anti nausea meds. so my question i am about 80 -90 pounds over weight, my surgeon here in albany ny refuses to correct the hernia, but i need this done as this is now a quality of life issue as i cannot eat anything more than ice. i have done some research and have found columbia hernia center in NYC. my question is has anyone been here ?

UPDATE: I have an appointment with Dr Zachary Gleit on may 17th anyone have any experience with him? He is at Columbia Presbtaryian herinia center in NYC.

[ot dave]

A hernia that is causing pain or blockage should be taken care of, I would get another opinion. Most surgeons leave well enough alone if a hernia isn't causing issues. But pain and blockage lead to more serious issues if left alone. Glad you are getting that second opinion.

David

[Button]

Smashes:
Sorry to read that you landed in the hospital again. I am in the hospital, as well. Day 8.

I do not think your Albany NY surgeon is declining to operate on your paristomal hernia out of spite or ill-will or incompetency. His expressed concerns of post-operative complications ring with residency.

I hate to state this, but will . . . Your weight is a concern and a reason for caution. The primary driver of a hernia is increased abdominal pressure, an outward pressure gradient that acts on the skin and inherent connective tissue weakness that comes with a stoma. One very real possible scenario of hernia repair is mesh failure due to excessive intra-abdominal pressure sourced from the added adipose tissue situated around your abdomen. I have personally seen a patient stand up for that first time after surgery and suffer an immediate mesh repair failure - the hernia grew in size several times and additional reconstruction was not feasible.

Your history of MS is also a concern. The stress of surgery could send you into a MS flare and significant increase in MS symptoms. Medications used to treat MS can also weaken connective tissue, which adds risk to hernia repair competency.

Losing 10-15 pounds might make a world of difference.

Do not take the decision of surgery lightly. I think many of us will remember member Linda and her unfortunate series of hernia repair failures. Her abdomen became one large hernia and eventually contributed to her death/passing. Luvmyileo has also had a complex history of hernia repairs, failures, and a final total abdominal reconstruction at the Cleveland Clinic that had its own downside.

I am at the position in life where my advanced directive is specific for NO further medical interventions or surgeries. There can come a time where surgery has the risk of causing more harm then benefit.

Take a cautious approach to your decision,
Karen

[smashms]

Karen i do not take this decision lightly, and i do know my weight is a concern, but i am in pure agony here with multiple obstructions and lots of pain, MS is not a concern as i found out i do not have it. i just have not taken it off my profile yet. My second opinion is on may 17th at columbia presbtaryian in NYC. if these guys can't or won't fix it i am at my wits end here as i do not know what will happen next. i have been told by both surgeons here in albany ny that it needs to be repaired they just don't feel like they can take on the surgery with their experience.

[sassie]

Karen, My heart aches for you, I'm so sorry your having to go through what you are, Lady your a very wise women and a great help to so many, Your in my prayers and in my heart,, Thank You for being just who you are. God Bless You. sassie

[Button]

Smashms:
Your plan to have a consultation at the Hernia Center associated with Columbia Presbyterian Medical Center in NYC seems wise and thoughtful.

I was diagnosed with a Pituitary tumor (benign) about 10 years ago. It was only through a designated Pituitary Center that a correct diagnosis was obtained. Prior to the consultation at the Pituitary Center associated with Swedish Medical Center in Seattle, Wash, I was aimlessly shuffling from MD to MD, assigned one incorrect diagnosis after another. All while getting sicker and sicker.

The Pituitary Center offered a multi-disciplinary and collaborative model of care. There was a broad team of physician specialities (endocrinologist, neurosurgeon; plastic surgeon, ENT) and ancillary clinicians (psychologist, nutritionist, biofeedback, PT and OT and speech). It was a laser focused approach with an emphasis of shared decision making.

The Pituitary Center gave me a renewed glimmer of hope that someone, just possibly, could help me.

I think you will find the Hernia Center similar in having a multidisciplinary core team of MDs that will evaluate your hernia and design options for care based on shared-decision making and known best practices. Possible providers: Colon-rectal surgeon, plastic surgeon, gastroenterologist, dietician, PT and OT.

I hope you get helpful answers from the Hernia Center just as I found much needed guidance and direction in contacting a Pituitary Center.

Best wishes for success,
Karen

[Button]

Karen, My heart aches for you, I'm so sorry your having to go through what you are. God Bless You. sassie

Sassie:
Thank you for the out-reach of support. That means a lot.

I am going through my own difficult time just now (severe small bowel inflammation and C-Diff, on-top of an Addison’s crisis). The corticosteroids that I take to treat Addison’s disease (adrenal failure) are raving my body on the inside, a cumulative effect. My physicians are not optimistic for my recovery.

It’s been a long slog and I am tired.
Karen

[BillGK]

Ugh, I hate to read this. I hope that you make a recovery, Karen, and get back home.

[nickolas]

I am going through my own difficult time just now (severe small bowel inflammation and C-Diff, on-top of an Addison’s crisis). The corticosteroids that I take to treat Addison’s disease (adrenal failure) are raving my body on the inside, a cumulative effect. My physicians are not optimistic for my recovery.

It’s been a long slog and I am tired.
Karen

I hope you are doing/feeling better. I had a friend dealing with C-diff a few years back, no fun at all. You will be in my thoughts and prayers that you do recovery from this. I understand your situation is different, but my friend did recovery, it just a took some time.

Take care of yourself.

Lee

[nickolas]

Regarding hernia repair, I had it done over 5 years ago. I put it off for as long as I could, 10 years. If you put 2 hand together side by side, That is how big my hernia was. And I am not over weight. It was noticable. It serious surgery. I'm a power walker, was not allow to do it for 3 long months following that surgery. Even after the 3 months, I had to GRADUALLY get back in to it. To this day, I'm under family order not to lift much. The surgery itself can leave scar tissue which can lead to blockage.

I will be honest, mine is gradually coming back, surgeon believes my power walking is the cause. Does not want me to stop, walking benefits out weigh the hernia. I'm 100% convinced I would be in a wheel chair today if not for walking, long story. It's still small at this time.

My understanding, being overweight can cause the hernia to happen. Is there any way you could lose some weight prior to this surgery? I'm glad you are getting a 2nd opinion, and maybe finding the right surgeon will be key to your success. But please, find someway to get that extra weight off. It could impact your recovery, but more important, that extra weight will probably cause your hernia to come back in short order.

Good luck, I hope you find a solution.

Nickolas

[smashms]

yes nickolas i am trying to lose weight currently however with what i am able to eat and keep down it is hard, because it is all carbs! my appointment got moved up to earlier in the day tomorrow so we are leaving my house around 6am to be down to the city by 10 am. i do hope this doctor can help me as this needs to be done sooner than later i have already been told this by 2 surgeons here. the pain is unbearable right now. and i am sure if i did not have pain meds and anti nausea meds i would be in the hospital still it is that bad.

[nickolas]

Good luck tomorrow. I hope they can do the surgery for you. It sounds like that is the only was to get your life back. Good luck, keep us posted and all the best for a positive meeting tomorrow.

Nickolas

[Button]

Smashms:
Thinking of you this morning and hoping that your appointment at Columbia Presbyterian’s Hernia Center is a positive encounter that offers you a sense of hopefulness for bettering of your well-being.

Keep faith,
Karen

[smashms]

hello everyone yes today's appointment was positive. he is going to talk to my cardiologist and his radiologist regarding my ct scan i brought with me and come up with a game plan. he said since i have already been hospitalized due to the hernia he wants to move rather quickly. but he also wants to come up with the best game plan as well. surgery will most likely happen within weeks rather than months he said. my hope would be to wait till after my vacation the end of june but if that needs to be changed it can be i guess. not ideal but will do whatever needs to be done. as guessed he wants me to lose weight before hand which i am trying to do i am down 15 pounds already. i have made several appointments with bariatric centers in my area in hope to get into one before my next appointment with him. so far they are all booking out till end of july. he did however say since i am already proving to need hospitalization for obstruction he wants to operate sooner than later. i feel confident in him. and his abilities as this is all he does the more complex the better his nurse said. and since he wants to move rather quickly he is not that concerned with weight but it will need to be worked on after ward.

[nickolas]

Congratulations on losing 15 pds. That's going to help. It sounds like there is a plan of action, that is AWESOME news to celebrate. Hope you can find a bariatric center that can help you. I'm also going to suggest Weight Watchers. I've been a member for 10+ years. While I am not overweight, I do struggle with my weight. Menopause if a B***. I know of a few people who took the bariatric route to lose weight only to gain it back again, after a few years, they did not change their old eating habits. Weight Watchers can teach you how to eat healthy and in portions. Less process food and more make your own meals type food.

Good luck, know in your heart you will get and feel better soon. Keep us posted.

Lee