Dr. Visit

[cludwig]

Hi Friends,

I was in LA last week visiting my son for parents weekend at his college. I knew I was going there a few months ago so I made an appointment with Dr. Pimental. Had a wonderful visit ...was so impressed as he seemed to have a hundred IQ points on all the GI's I have seen...and I have seen many in the past four years. I have been in so much pain and have been told it's all in my head or IBS or IBD. Well, after listening to me...actually listening...he asked to do a couple of tests with an "amazing" radiologist. I of course agreed and was thrilled as he wasn't trying to confirm or disprove LC. I just had my phone consultation with him and he said they found 3 partial bowel obstructions, one almost completely blocked. He said they were most likely caused by adhesions from my surgery I had in 2005.

I have felt so lost these 4 years as I was religiously following the diet and taking entocort was not helping. I even had a Dr. accuse me of not taking it because I was seeing a naturopath and he thought I might be against taking steroids. I would try anything to relieve the pain I have been in and was faithfully taking the entocort but he didn't believe me.

I will have to have surgery to deal with the adhesions and I know anything can happen with surgery but I am hopeful. If I can just get rid of some of the pain I will be fine with a restricted diet.

I had suspected adhesions before but couldn't get anyone to look into the possibility. Adhesion surgery is tricky as the surgeon can create more adhesions with the corrective surgery. I guess I have no choice but to give it a go. Supposedly in Europe they use a product called sprayshield that is supposed to prevent new ones from recurring but it has not been FDA approved for use here. I am pretty nervous about another surgery. Dr. Pimental said I could have the surgery in Seattle but I am afraid that all these doctors who failed to properly diagnose me here will be resentful that a doctor in LA found I have adhesions. Do you think it would be in my best interest to go with a surgeon that he knows in LA rather than one here in Seattle? Maybe I am just paranoid.

That's my update. Hope you all are doing well.

Love,
Cristi

[tex]

Hi Cristi,

That's a tough question, and I really don't know how to respond. I would think that most surgeons would be rather independent minded, but I'm just guessing.

Thanks for the update.

Love,
Tex

[adelie]

Hi Cristi,

Wherever you decide to have the surgery, make sure your surgeon is someone you are comfortable with (both skills and communication). As you mentioned, additional adhesions are a possibility, so you'll want someone you'll want to go back to for follow-up. It's tough when you're in pain, but if you can, shop around - interview surgeons until you find someone you're comfortable with. If there's a doctor or nurse you're comfortable with, ask them for a few recommendations and start there (it's better than starting with the phone book). Remember you are paying for a service. You are a customer. It's easy to forget that when it comes to medical issues. If a doctor isn't providing the service up to your standards - go somewhere else. You're purchasing quality of life and your life here, not a sack of potatoes.

I hope everything goes well for you,
Karen

[mbeezie]

Cristi,

Big egos can be a problem here. When I went for my sigmoidocopy I told my GI that I had consulted with a GI in Boston who was studying ME and suggested I get biopsies with tryptase stains, his reaction was soooooooooo negative. He was very sarcastic and I'm certain he didn't treat me as well as he would have someone else. I suggest interviewing both surgeons ahead of time and trusting your gut instinct. Have your records forwarded to the surgeon in Seattle and then interview him - Karen is right - you will be paying him alot of money and you deserve someone who is more interested in helping you than being right.

Mary Beth

[connie]

Cristi,
I am sorry for all you've through. It has been a long and painful ordeal. Thank goodness you made the appointment that finally gave you an answer. It is maddening that IBS is the answer so often attached to everything these days.

You have been given some great advice for finding a surgeon you are comfortable with. You have to live in your body and I pray you find someone you can trust for this complex surgery. Perhaps you could take someone you trust with you to the initial appointment to take notes and give their perspective. Altimately the decision is yours but sometimes it's hard to remember everything that was said. Wishing you strength and comfort.
Connie

[cludwig]

Thanks everyone for the great advise. You are right that I have to go about this logically and not rush this. I have been dealing with this for 4 years and I can handle it for a few more months to take my time to interview surgeons. A big part of me wants to be near home and my own bed while I recuperate but I realize that is missing the big picture. Mary Beth, I am worried about the egos here as they are buddies with the guys who missed my adhesions and I am aware that Dr. Pimental is considered a bit of an outsider because he had the audacity to publish an original idea about the cause of IBS. I think he prides himself on taking on challenging patients and his response to my visit to the Mayo was that he does things very differently than they do there (luckily for me). So, I don't know how the testing that he did will be received here. Guess I will have to see if I can get a feel during the interview.


There is a small forum for patients dealing with bowel adhesions and it is comprised of mostly women who are dealing with endometriosis. They all say that if you can afford it to go to Germany to a surgeon there as he uses a different kind of surgery... a mechanical lift to raise the abdomen instead of gas which enables him to use different tools and better access to the adhesions. He also uses the sprayshield product that hasn't been approved here yet that is supposed to be very effective at keeping new adhesions from forming. The language barrier and getting my food over there seems like a daunting task.

Thanks for the support. I am sure I will be back for help when I have a chance to speak with some surgeons.

Love, Cristi

[cludwig]

Hi Friends,

I leave for LA next week and will have surgery for the adhesions on February 18th. She will go in laparoscopically to look around and if the adhesions are thready she will just attempt to snip them. If they are thick, she will open me up and cut them and use seprafilm as an adhesion barrier. I had been hoping to find a surgeon who uses adhesion barriers during the laparoscopy, but couldn't find one. I continue having bloating and pain in my small intestine always in the same areas, so I am hopeful that with the adhesions gone my small intestine will return to a more normal motility. I am assuming that my problems continue because of a continuing small bowel bacterial overgrowth that won't go away until it can move freely.

She gives me a 50/50 chance for improvement but I am going to start visualizing success. I am going to have my husband sneak me in food as I don't trust the hospital. I assume that we will have to sneak as I don't think they will allow outside food, right?

She also wants me to sign a consent for a possible small bowel resection in case one of the adhesions has strangled part of the bowel. This makes me really nervous. But I assume if it's strangled it won't ever heal correctly anyway. I haven't signed it yet, and will procrastinate as long as possible.

Love,
Cristi

[starfire]

Needless to say, I'm hoping for the best possible outcome for you. Sometimes you just have to accept whatever risks there are and hope for the best. It sounds like you have found a good doctor. Please keep us informed as best you are able.

Love, Shirley

[Polly]

Oh Christi!

I just saw this thread. I have always thought that you had other undiagnosed problems because of all of the continuing symptoms. You have suffered so much.

Anyway, listen to this. You will need to touch base with Tex. Last night when I spoke with him, he said that a nurse was telling him that his case was quite unusual because apparently he had a HUGE number of adhesions in his abdomen and that the surgeon spent a very long time doing lysis (cutting them free). Isn't this a coincidence??? Tex and I were theorizing about the possible cause and/or connection to MC. He mentioned a recent thread here (I haven't seen it yet) citing an article about the possibility of bacterial contamination of the mesentery in the abdomen. We'll have to dig that up.

I'm glad you have made your decision re the surgeon. It is so important to have that trust factor.

Wishing you a successful surgery and quick recovery.

Love,

Polly

[Jan]

Dear Christi,

I didn't catch that you were having surgery. I will keep you in my thoughts and prayers. I'm glad that you are already visualizing success. I hope this gives you the relief that you need.

Jan

[Dee]

I'm happy to hear that you have found a surgeon that you have faith in..
Sending nothing but positive ((((VIBES))))) your way!
You are long overdue to be pain free...
All the best to you a successful surgery and rapid recovery.

As far as the food issue, if the hospital can not accomodate your diet then I can't see a problem with your hubby bringing in food for you.


Love
Dee

[cludwig]

Hi Shirley....I think you are right. I just have to trust my surgeon. She is the one I have chosen to do this procedure and I have to have faith that she will do what she thinks is best for me. I am taking an informed risk to hopefully get to a better place.

Hi Polly....After the first couple of years I was also suspecting there was something else going on. Thank goodness I had all of you to advise me on diet because I was sooo much sicker before eliminating my primary intollerences. Now I have problems with all grains, starches, sugars and fruit. Doesn't leave much to eat.

The mesentery infection is really interesting as one of the partial blockages is in the upper small intestine where no adhesion from surgery should be and one of the spots that pulls is in my upper back right behind where the partial blockage is. This would explain it. Hopefully by Monday Tex will feel up to me contacting him. This wonderful man has poured over and helped me understand so many of the tests I have been through. Words can't express how grateful I am.

Thank you Jan and Dee for the well wishes. I am visualizing returning from surgery and being able to prepare and eat some of your wonderful recipes, Dee. I have prepared and frozen some chicken soup to take. You can check frozen food with dry ice on the airplane so that should help.

Love,
Cristi

[Rosie]

You can check frozen food with dry ice on the airplane so that should help.

Be aware that sometimes you can't check packages with dry ice if there are live animals being shipped, like dogs, cats or birds. The reason is that the dry ice gives off carbon dioxide gas, which in large enough quantities can be toxic to animals. Hopefully the small amount you would use would be OK, but often times there are just blanket regulations about this and it doesn't matter how much is used. I know of this because I have a friend who ships (birds) on a fairly regular basis from Seattle. During the salmon season he often can't ship his birds because the salmon is air-shipped on dry ice all over the country and take priority over his birds. I would just freeze the soup ahead of time and pack with blue ice just to avoid any hassels. It should last for a day's travel.

Rosie

[cludwig]

Interesting Rosie. Thanks for the heads up.

Love,
Cristi

[Gabes-Apg]

Polly / Tex
add me into the mix of person with loads of adhesions.

My background is that there are no ligaments holding my large bowel in place. During teen & early 20's i had surgery three times for bowel contuisions (the ligament situation was confirmed during the second surgery as the first surgeon was hopeless). After the 3rd surgery (1995) the surgeon said my small bowel was covered with adhesions.
(hence my experience with the evil NG!)
My mother confirmed that during childhood i had regular issues with BM but nothing major enough for doctors to investigate further. As i was an asthmatic child i did not have alot of dairy, and as i was a sickly child i think i lived on alot of soups etc (ie easy to digest foods)

In my late 20's (circa 1998) when the hormone issues started it was confirmed that my bowel had 'adhered' to one of my ovaries. my most recent ultrasound (2008) - the bowel was still adhered to the ovary.

Since 1999 i have done alot of natural therapy (liquid herbs, vitamins and acupuncture) for cell rebuild to overcome impact of the adhesions. and was quite proud of the digestion health i had achieved with this approach and with my diet ie going 14 years without any major digestion incident.
yes the MC demon has entered the house but it is not a welcome guest! and i am doing my best to keep it in the bin!