Dr. Visit

[ant]

Dear Cristi

Wishing you all the best for your surgery. Love, ant

[tex]

Hi Cristi,

Sorry that I am just now getting around to reading the updates to this thread, but Polly is quite correct. The surgical team apparently spent much/most of their time during the long procedure, trying to correct my mesenteric mess. You may recall that four years ago, my Sigmoid colon was removed, and the resected distal end, (past the Sigmoid colon), was simply allowed to remain in place, (where it might be reconnected, at a later date). The "new" distal end was then finished with a Hartman procedure. The reason for the resection, was listed as a steosis in the Sigmoid colon.

A couple of days after this latest surgery, I asked one of the members of the surgical team, if they had also removed the resected distal end of my colon, (the distal part that had been left in place, during the previous surgery), while they were at it, (to sort of "clean house", so to speak). He said that they had intended to, but it was so entangled with scar tissue, adhesions, mesenteric complexities, etc., that they were afraid that doing so would cause an undue risk, since it would take an undue amount of time, and my heart had already been overly stressed by the long period of time under anesthesia. So they left it.

Interestingly, I happened to have the same anesthesiologist this time, as I did during the previous surgery. They had already reviewed the prior operative report, as I was being prepped for surgery, in the ICU, so we renewed old acquaintances, while we were waiting. The surgeon who did the previous Hartman procedure is still on staff there, but he wasn't on call that night, so I didn't get to see him.

Gabe's history with adhesions, (and there are other members with similar issues), suggests that we may need to look further into a possible connection here, (no pun intended).

Best of luck with your procedure.

Love,
Tex

[cludwig]

Thanks for the sending the good thoughts my way Ant and Tex. I am getting my food in order to have my hubbie sneak in. My Mom says at their hospital no one sneaks ...there is always someone bringing in mcdonalds or milkshakes. I am soo sorry they brought you milk and a salad. It just blows my mind how clueless they are. That would be hard for anyone to digest.

I am prepared as best I can. The only thing I wished I had asked my surgeon was if she takes pictures when she is in there. I kind of assume they all do ...but I shouldn't assume. I just know that there is all kinds of research going on now about adhesion prevention during surgery. So if these adhesions grow back and cause problems, I want to have pictures to prove that I have adhesion issues so I would be considered for the new products. I was so surprised that the surgeons in my area wouldn't even consider surgery based on a GI from another state. What egos. I feel so fortunate to have found Dr. Pimentel.

I am keeping my expectations in check. Even if the surgery is a success (and it is going to be) I will be starting from square one with the healing process....getting the motility to normalize will take time.

Thanks again for all the love and support. I am going to go in and be Tex tough and be back here in a couple of weeks to talk about the "connections".

Love,
Cristi

[Polly]

Good luck, Cristi! We will miss you and be sending positive thoughts your way.

It is fairly standard to take photos now, but still best to ask ahead, I guess. My ENT doc actually gave me the color photos from my 2 sinus surgeries and the orthopod showed me the color photos from my recent knee surgery.

So glad your hubby will be sneaking in safe food - at least we'll know you won't go hungry.

Love,

Polly

[harvest_table]

Hi Cristi...

You have been dealing with so much physical stuff and "doctoring" over the years and it's so good to hear you were able to hook up with Dr. Pimentel. Faith in ones Doc is important and he certainly appears to be a physician that want's to crack the tough nuts and solve the hard cases, plus, he's certainly no stranger to MC.

Sending you lot's of love and good thoughts from Fergus. You have a positive attitude about this surgery and I trust your recovery will be swift and uneventful. Also glad to hear your making meal plans for your hospital stay...especially in light of Tex's experience.

Love,

Joanna

[Stanz]

First of all, Cristi, I've been watching this thread for the past few days. I had surgery to remove what had become a total obstruction by scar tissue when I was 34. The assumption was that it was caused by scar tissue from my hysterectomy at age 26 that was done for constant pain presumably caused by misplaced endometrial tissue. The scar tissue had encircled a loop of my bowel COMPLETELY after YEARS of episodes of partial blockage that intermittently had cleared enough for me to function as a human mother of 2 young girls.

The surgeon did not need to cut into my intestine, he just, by his own words, "very carefully" cut it loose to avoid cutting into a bowel that looked ready to explode. He said the scar tissue was the thickness of a leather shoelace and also said that my cecum was completely atrophied, which I had asked him to look for since I had been dx with various appendix problems since I was 9.

I have had NO problems with blockages since then, but I was dx with MC last Nov. at 60 yrs. old. I have no doubt that your surgery will help you and I wish you well with it, as it is never fun to have surgery, and I really want to encourage you to baby yourself after your surgery and just give yourself time to heal properly so as not to create more problems for yourself and not to be afraid to ask for HELP while you are healing.

So--I do not want to be insensitive here- but I have been following all the posts here since Tex went through his recent surgery and have read the mentions of scar tissues in MEN and I am just flummoxed here, having believed all this time that it was Endometriosis that was the source of the problems for me and most of my sisters and many nieces and now my own daughter, who went through a 6 hour surgery yesterday to repair the damage caused by childbirth and the constant IBS problems she's had since she was 22. Fortunately she did not have scar tissue everywhere. I talked to her surgeon this afternoon and he was very pleased with what he saw and feels that she should be trouble free from now on, but she was the first to be dx w/gluten sensitivity in our family and has been on the Specific Carbohydrate Diet for over a year now.

Genetic tests from Enterolab show I have 2 genes that predispose for GS, so obviously, there is some debate as to the ORIGINATION of the scar tissue and thus my questions here to follow. I really am left wondering what it is that connects all of this, men and women, to having scar tissue that damages the intestinal tract. Can a reaction to gluten antibodies cause scar tissue?

I am just tortured by the story of my Paternal GF, who was first dx at Mayo Clinic in 1918 w/bowel obstruction. He had then had a lung injury caused by a compression injury when a load of timber fell on him and then was further dx with having Tuberculosis, which from my research would seem to parrot a dx with MAC. He then was sent to a Sanitarium in CO where he tested NEGATIVE for TB on arrival, but still they kept him there for a year when he again tested negative for TB and was then sent home to MN. My Father had been called back home from Dental School to run the farm that he never wanted to run in his absence. My Grandmother was so scared of him and TB that they made him live in a metal shed on the farm until he died 8 years later, when my mother took him his lunch, he came to the door and was vomiting blood. He lived ALONE in that shed for the last 8 years of his life and in all reality, from my research, he NEVER had TB, he had MAC that was enabled by being GS. So, I am left really wondering what information anyone has here on scar tissue/intestinal obstructions being caused as a result of MC.

Cristi, surgery is never fun, but having been through what you're still going through, you will feel SO much better w/o the obstructions, and you aren't going to further damage yourself like I did, not knowing the cause. I hope my post here doesn't seem insensitive to what YOU are dealing with personally, this has just been quite a past few weeks for me and obviously quite a few others here and seems like a logical place to pose these questions.

Connie

[tex]

Connie,

Apparently, this is a somewhat common complication with the IBDs, especially Crohn's disease. I don't recall reading anything about it being associated with MC, but that may simply be because it hasn't been investigated for MC. Remember that Crohn's disease has been extensively studied and researched for many decades, whereas MC has mostly been viewed as the proverbial "red-headed stepchild" of IBDs, and relatively little is known about it, compared with Crohn's and ulcerative coitis.

Complications of Crohn's Disease

The most common complication of Crohn's disease is obstruction or blockage of the intestine due to swelling and the formation of scar tissue. The result is thickening of the bowel wall and a significantly narrowed intestinal passage.

http://www.ccfa.org/info/about/crohns

How do intestinal strictures form in IBD?

When inflammation is present for a long time (chronic), it sometimes can cause scarring (fibrosis). Scar tissue is typically not as flexible as healthy tissue. Therefore, when fibrosis occurs in the intestines, the scarring may narrow the width of the passageway (lumen) of the involved segments of the bowel. These constricted areas are called strictures. The strictures may be mild or severe, depending on how much they block the contents of the bowel from passing through the narrowed area.

Crohn's disease is characterized by inflammation that tends to involve the deeper layers of the intestines. Strictures, therefore, are more commonly found in Crohn's disease than in ulcerative colitis. What is more, strictures in Crohn's disease may be found anywhere in the gut. Remember that the intestinal inflammation in ulcerative colitis is confined to the inner lining (mucosa) of the colon. Accordingly, in chronic ulcerative colitis, benign (meaning not malignant) strictures of the colon occur only rarely. In fact, a narrowed segment of the colon in ulcerative colitis may well be caused by a colon cancer rather than by a benign (non-cancerous), chronic inflammatory stricture.

http://www.medicinenet.com/inflammatory ... /page4.htm

Remember that in many ways, MC is more closely related to Crohn's disease, than to ulcerative colitis. For example, like Crohn's, MC can affect any part of the GI tract, from mouth to anus, in contrast with UC, which originates at the distal end of the GI tract, (the anus), and typically progresses upstream for only a relatively short distance, rarely past the Sigmoid Colon.

Yep, I was more than a little surprised to discover that I had an endometriosis-like problem, also, especially considering how extensive it appeared to be.

Tex

[Polly]

Connie,

Just want to say how haunting and tragic your granddad's story is. It brought tears to my eyes. No wonder you are leaving no stone unturned in your quest for answers.

Love,

Polly

[cludwig]

Thanks for the good thoughts and encouragement Joanna and Connie. Thank you so much for sharing your story Connie. I first started suspecting adhesions after I read a book published by a mother whose daughter was dx with crohns and her struggle for 14 years to free her child from pain, dragging her from doctor to doctor because she didn't believe the child had crohns. Finally she had to fly her to Germany where they found her full of adhesions and successfully removed them. She was later dx with a condition where she gets ovarian cycts that rupture sending tissue into her abdomen. But once her daughter had that crohns dx.....they won't consider anything else. The only thing worse than suffering pain is watching your child suffer. I am glad your daughter's surgery went well and hope you and your family re-gain your health.


Love,
Cristi

[cludwig]

Hi Everyone,

I am back and it went as well as I could have hoped. I went into surgery at 10 o'clock Thursday morning and was back at the hotel room by 3:30 pm. She went in laparascopically and found nothing at the appendix, C-section or hysterectomy sites which is where everyone expected. What they found was my stomach and small section of my small intestine was completely covered in adhesions. The natural assumption is that they are from my gallbladder surgery from 2007. However, I have been complaining about the pain in my upper left abdomen since my hysterectomy 2005. So far I definitely feel like the tightness and restriction in that area is gone if not greatly reduced. The first 2 days were a breeze except for the loud hotel room and uncomfortable bed. Day three was awful. I blew up with gas and started passing undigested food. We flew home Sunday which was too soon as I had to walk through LAX which is huge and then the walking on the other end in Seattle was very difficult but it feels so good to be in my own bed.

I am doing better on a meat and well cooked veggie diet coupled with diestive enzymes and HCL pills. Poop is still very soft but at least it doesn't look like food anymore. What I find interesting is that I am most sore in my back under my ribs and not at all at the three puncture sites. I didn't take pain medication and only took tylenol until yesterday. It wasn't easy but I really hate pain medication. The side effects usually outweigh the benefit for me. My naturopath says sometimes organs take a while to wake up after surgery so I am hoping my pancreas wakes up soon.

So, I still have problems but if I am lucky maybe they stem from these adsesions and will eventually straighten out. I was very impressed with my surgeon and Cedars Sinai and I am grateful to them for just sticking the camera in and taking a look.

I am also grateful to have gone into surgery knowing you guys cared.

Love,
Cristi

[Stanz]

So good to hear from you Cristi, that everything went well and you are back in your own bed - that's always nice. It is just plain such a relief to KNOW what's wrong. I hope your digestive issues relating to the procedure clear up soon and that you will take the time to have a good rest. Did they use the da Vinci robot for your surgery? Were they able to remove the adhesions?

My adhesions were purportedly caused by my hysterectomy, although I did also supposedly have endometriosis - I am questioning that now - as the frequency of endometriosis or very painful periods in people with gluten issues is pretty revealing.

[Stanz]

Polly,

Thanks for your words about my GF, I hadn't seen that before now. It's interesting when you journal about family history and find so many patterns of disease. If only they'd known.

Connie

[Bifcus16]

Hi Cristi,

That all sounds like good news. Hopefully once you finish healing from this treatment you will get much less pain.

Hotel rooms are the pits in many ways. nothing beats sleeping in your own bed.


Lyn

[Gabes-Apg]

hi Cristi
good luck with the recovery.....
due to a minor flare i am back on what i call - gooey baby food, well cooked food that I have put through the food processor. and jelly
the hospital, and the hotel and the air travel are all things that put your body under stress.

give yourself time to recover

take care

[Polly]

WAHOO, Cristi!

So good to hear it's behind you! Best wishes for a quick and uneventful recovery!

Love,

Polly