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Post by 1234 on Mar 17, 2012 10:53:21 GMT -5
So I had another colonoscopy this week. I had taken my time, after seeing Dr. Belizan and his telling me that my intestine was inflamed all over the place, to find a GI doc who knew something about endo. I must have called 50 doctors, adn was told by a bunch of goofy receptionists that i needed to go to an OBGYN for endo (hit head against wall), but finally ended up back at my old stomping ground: WHC (Jenaya, I'm picturing your face now). I really liked the doctor, a lot.
Anyway, the colonoscopy was a bit of an ordeal. The whole bowel prep thing made me bleed a lot (vaginally and rectally) and apparently the colonoscopy did too. I was put completely under--not just twilight anesthesia--because of the pain, and when I woke up, there was blood everywhere. I was basically hemorrhaging. Anyway, they gave me some sort of shot of something to stop the bleeding. The hilarious part is that eventually I made it to the recovery room (I was still pretty out of it), and all of the other folks in the recovery room were retirement aged men. I must have been still bleeding, because at one point the other patients started yelling, "nurse, nurse--that white girl is bleeding." HUMILIATING.
Anyway, the point of this whole story is I just got my biopsy results from the colonoscopy. I have endo in my intestine at several points--for several inches under my left rib and basically from the end of the large intestine at my right hip up to my right rib and also throughout the rectum area. That correlates with the pain, so makes sense. Those same points also are very inflammed and I have colitis. OK.
The doctor talked to me a long time about my diet, and basically came to the conclusion that the only way I am functioning at all is because I follow the endo diet strictly and eat almost NOTHING that is processed. He also thought the piles of turmeric were a great idea. Until we started talking about my diet, he was pretty much amazed that I wasn't on pain pills and laxatives 24/7.
So I know not everyone has endo in their intestines, but we all have lots of inflammation. This doctor was pretty convinced that diet is a better way to control inflammation than anythign else--even anti-inflammatory medicines, which can stop a reaction for a short period of time but won't address chronic inflammation.
He also thought that my commitment to exercise was important too in controlling the inflammation, but not as important as diet.
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Post by gemstone on Mar 17, 2012 11:50:15 GMT -5
Well, firstly I'm sorry you have endo in all those places and had a pretty horrendous time with the procedure, very sucky I know you have a lot of problems but it's good you now have specifics as to what is going on. The fact that diet pretty much alone has been keeping you functioning is AMAZING!!! Really cool and pretty much a testament as to what food can do for use. Hope you're feeling better now
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Post by JC on Mar 17, 2012 13:10:51 GMT -5
I had like 8 different reactions to this post. First, I feel absolutely awful that you bled so much. That must have been quite shocking to them. Second, I actually laughed pretty hard at the "that white girl is bleeding" comment because that hospital is (trying not to sound racist) but it's a very African American dominated neighborhood in DC. So I can just imagine seeing you walking in there with your long fiery red hair and standing out like a sore thumb. But anyways, I know that WHC is a scary place for you to go to but I have to admit, having a doctor agree that a diet is keeping your pain in control is just fantastic! It's so rare to find a doctor that understands this! It sounds like you are in great care. So what is the plan now? They just said to keep with the diet? Did they recommend any surgery?
If by any chance that you want another GI, the one I saw at Georgetown specializes in pancreatic diseases, celiac disease, and women's health. I would imagine she knows all about endo on the bowel if she specializes in women's health and aside from that, she's a FANTASTIC doctor. She's an absolutely wonderful person. The receptionists aren't going to know what to say with these types of questions as you probably figured out.
So what's the plan now?
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Post by 1234 on Mar 17, 2012 16:03:34 GMT -5
I'm actually doing ok today--first day that's been okish. Rough week, but the hubby and I just went on a several hours bike ride, and it was great. I'm not sure why all that bleeding--it was right before my period so unfortunate timing. however, that was one way to empty out my uterus quickly, I guess: my period's been REALLY light.
On the WHC thing--it was humiliating to be bleeding in a hospital gown in front of a bunch of men (why I couldn't be given my undies and a pad, I don't know!) but they were actually my advocates. I was too out of it to know I was still bleeding, so it was nice of them to let the nurse know. The GI doctor also gave me the full report from the colonoscopy, with about 20 pictures, that day--I didn't even have to ask for it! He also had retrieved all of my records from teh pregnancy terminations. Can you believe that the surgery report listed me as having "extensive endometriosis" and no one told me?!?!?!?!? Anyway, I do trust and like this doctor.
I actually took the results as good news. The endo is very small/microscopic--he took biopsies all along, or else he wouldn't have known (my first colonoscopy in the summer came back as negative, but no biopsies were taken). There are too many pieces of the intestine that have endo for those pieces to be removed, but I don't need to worry about an obstruction anytime soon. I'm going to think about it a little bit mroe, but I think I'm going to go back to Dr. Belizan with this report and see what he recommends. I have a lot more information now and am ready to have another surgery, if he thinks it's a good idea. I'm still thinking about it, I guess. I'm not sure what to do with so much of the large intestine full of tiny endo implants. Seems a bit difficult to treat surgically. But so glad I found this board and heard about the endo diet! THere's no way I could be off the BCP otherwise, and I love how I feel off the BCP (other than the pain, of course).
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Post by semicolon on Mar 17, 2012 18:14:11 GMT -5
What an adventure, white girl!! I really, really liked my GI doc, he was one of the ones pushing for a gyn-related issue when my obgyn was not. GI's rank high in my book. And props to your new friends in recovery! Was your hubby with you?
Do they think the endo is confined to the inside, not going through from the outside? If there is any risk of perforation im sure theyd want to nip that in the bud otherwise it's a tough surgical approach. This seems like quite a case, I'm really sorry. I'm glad they don't think you are at risk for an obstruction, those are terrible! My aunt had very bad diverticulitis and had pretty much her entire large intestine removed (2+ feet), and she is great (she's a five foot, 100 lb spitfire fashionista, love her!). I am not suggesting that at all, but I was surprised to know we can pretty much live without the large intestine! It mad my resection look like getting a cavity filled!
Props to this doc, make sure you give that feedback to Belizan's office so he can refer other ladies there!
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Post by Karen on Mar 17, 2012 19:49:22 GMT -5
I'm with Jenaya - I had a lot of reactions to this post! But of all of them, I think my biggest reaction to your update is that you're a kick-ass woman that really knows how to take control of her health and for that you deserve major props! You called around, did your research, eat incredibly well, and exercise your ass off. Despite the discovery of endo in several places, a big pat on the back to you for doing everything right so you can manage it to the best of your ability. I'm glad you have the right info now to take to someone else to look over to give you some next-step options. And I'm sorry your previous surgical report showed extensive endo and they didn't tell you. I'm sorry that was yet another kick in the nuts to a very sensitive and traumatic experience for you. I'm glad this doc is giving you a bit more faith in that hospital.
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Post by JC on Mar 18, 2012 7:55:58 GMT -5
I think you have an excellent plan now. You got a lot of the answers you needed and going back to the gyn armed with new info is a great idea. I also agree with you that it seems so hard to treat surgically with a bunch of microscopic endo lesions everywhere. Like how do you treat that!? I hope he doesn't throw the "lupron" talk at you. Your GI sounds amazing and I'm so glad you went back to him. I'm sorry you had to be left with a bunch of men but I'm also glad they at least helped you and advocated for you. Geez this disease is so ugly. I still can't get over how it can just ravage through people's bodies like this.
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Post by 1234 on Mar 18, 2012 8:50:24 GMT -5
Thanks, you all. Sorry that my posts were producing so many reactions. I think I'm still a bit discombobulated by the biopsy results and not presenting things very clearly. Plus, the men in the recovery room really were hilarious. I had to throw that line in for Jenaya, for old WHC times.
Semi, it's really good to know that if I need to remove a bunch of intestine, I'll do just fine. Though I doubt even that will turn my incorrigible tomboy self into a fashionista! And I don't know where the endo is coming from. In my lap, I didn't have endo under my left rib (at least not that she noticed) or on teh upper right side--it was all in the lower parts of my abdomen. So is it just sort of there in teh intestine? Can endo do that?
Jenaya, would you mind sharing your doctor's name? I like this GI a lot (Dr. Shocket at WHC), but got so much new information I think I'd like to ask another doctor also, just to ahve more things to put in my pipe and smoke (metaphorically), and also because of another part of the biopsy results that I just can't figure out. I think I just want more input.
Apparently, I have melanosis, all over the place. I looked it up--it seems to be intestine freckles. Now, I'm a redhead, so it's not surprising I have freckles anywhere, but these freckles seem to be dead cells? and seem to come from laxative abuse? I DON"T TAKE LAXATIVES!!!! Pretty much the only laxative I've ever taken was the 2 ducolax I had to take before doing the colonoscopy bowel prep. I take psyllium fiber, eat very healthy, eat chia seeds, and go running (they don't call it "runner's trots" for nothing!), but I don't take laxatives, so I'm pretty confused. I've googled a lot yesterday and didn't find any answers. Has anyone else heard of this? or been diagnosed without taking laxatives? I've found a few articles linking this with IBS, but still connecting it also to laxative use, and one article stating that it was found in a woman who doesn't use laxatives, but that's it--no other information.
I also just wanted to post this here because I know lots of us take laxatives for whatever reasons, and it seems it has consequences. No one is quite sure what the consequences of melanosis is, but there are possible correlations to colon cancer. Apparently, even senna tea causes it, not just the harsher laxatives. Just something for us all to think about?
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Post by JC on Mar 18, 2012 10:28:36 GMT -5
Whoa that's crazy! I'll have to do a bit of digging for some info. The GI I saw at Georgetown is Dr. Aline Charabaty. She's great! Her waitlist to see her is a couple of months though because everyone wants to see her but I think it's worth the wait if you can wait that long. She's a good person to get a second opinion with.
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Post by JC on Mar 18, 2012 10:39:22 GMT -5
Ohh ok I think I kinda get it now. Melanosis is just a fluffy word for melanin/pigment deposits. It's kind of the same concept as endometriosis. We have endometrial deposits all over the place where they don't belong. Melanosis is just deposits of melanin/pigment all over the place where they don't belong. But just like endo, there doesn't seem to be an established cause of this but there are a few theories. For one, the chronic inflammation of the bowel from eating disorders is one. I also found that chronic bowel endometriosis causes something called melanosis coil. Here's one research abstract I found: Sigmoid endometriosis and a diagnostic dilemma - A case report and literature review. Nasim H, Sikafi D, Nasr A. Source
Department of Surgery, Our Lady of Lourdes Hospital, Drogheda, 1, Ard Seascann Blackrock Road, Dundalk, Co. Louth, Ireland. Abstract INTRODUCTION:
Intestinal endometriosis is often an infrequently considered diagnosis in female of childbearing age by general surgeon. There is a delay in diagnosis because of constellation of symptoms and lack of specific diagnostic modalities. Patients suffer from intestinal endometriosis for many years before they are diagnosed. Often, such patients are labelled with irritable bowel syndrome. Intestinal endometriosis has a diagnostic time delay of 8-11 years due to its non-specific clinical features and multi-system involvement. PRESENTATION OF CASE: Our patient was a 32 years old Caucasian female who was referred to us with features of intestinal obstruction. Despite repeated clinical assessments and use of different diagnostic modalities the diagnosis was still inconclusive even after 21 days of her first presentation to primary care physician. She had an exploratory laparotomy, sigmoid colectomy, and Hartmann's procedure with a temporary colostomy with us. Histopathology confirmed endometriosis and also showed melanosis coli. She was referred to the gynaecological team for review and follow up. DISCUSSION:
Intestinal endometriosis should be considered as a differential diagnosis in female patients of childbearing age group presenting with non-specific gastrointestinal signs and symptoms. Our patient manifested intestinal endometriosis and melanosis coli on histopathology suggesting symptoms of long duration. CONCLUSION:
Bowel endometriosis is a less considered and often ignored differential diagnosis in acute and chronic abdomen. This condition has considerable effect on patient's health both physically and psychologically.
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Post by 1234 on Mar 18, 2012 14:46:16 GMT -5
Thanks, Jenaya! Interesting teh link with eating disorders--like I said on PM, I wonder if that's because folks with eating disorders often abuse laxatives. Even though I struggled for years with eating disorders, as a dancer adn then a bad episode when I was in/recovering from being in an abusive relationship, I never used laxatives. I also read that your intestine starts to repair after about 4 - 8 months of laxative abuse, so I assume that teh same must be true for eating disorders, even if not laxative related. I've been (mostly) recovered for about 6+ years.
I wonder if it is just part of intestinal endo, the colitis (which seems also to be a result of the intestinal endo)--in other words, a pigmentation/cell death that occurs just from the inflammation and etc?
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Post by painttheseconds on Mar 18, 2012 16:39:55 GMT -5
I'm with everyone else when I first read your post I felt a bunch of different reactions. That's why it has taken me awhile to respond. First I'm so sorry that your endo is in so many different areas and your reaction to the procedure. I don't do well with lots of blood so I would have been freaking out. I can't imagine having to go through that so I'm just glad you are ok.
Your dedication to the endo diet, your health, and exercise is really inspiring and I have always respected you for that. You go above and beyond for your health and that's extremely admirable. I'm not familiar with a lot of the medical terms discussed so I can't contribute much to the medical side of things other then having my experience with endo.
Whatever you decide for yourself I'm definitely here to support you in any way I can. I hope that you can get things figured out and I thinks it's wonderful that you have had options with Dr.'s who have been able to help you. I hope that if you do decide to have surgery at some point that you would consider seeing an endo specialist. I'm by no means a pro surgery person, but I can tell you from my own experience a few weeks ago that I am feeling better then I have since this whole mess with endo started. You will be in my thoughts and I know you will do what is right for you and your journey.
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Post by 1234 on Mar 19, 2012 10:15:49 GMT -5
Thanks, you all. I'm really sorry for coming out all over the place in my posts. I probably should have done it more in pieces--you know, one piece for the colonoscopy, and then later for the results, instead of all the gore and the old men all together!
Thanks for all of the support. I'm still mulling, but I will this week make an appt with Dr. Belizan and Dr. Charabaty. Thanks for finding all my doctors for me, Jenaya!
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Post by JC on Mar 19, 2012 13:52:15 GMT -5
Hey we're all fighting the same fight. We'll all get to the answers too! Love you!!! BTW, we all love gore too so don't hold back!
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Post by semicolon on Mar 19, 2012 18:43:21 GMT -5
I love a good colonoscopy story, especially all together! Sidenote, one of my co-workers had one and, I quote, woke up in a pile of her own sh*t!
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