TOTAL COLECTOMY PART 29

So today had to be one of the longest days of my life.....

I ended up getting approval for testing and two visits after being up till 530 am and up at 730 am to start making calls and bring the hubby to work so he didnt have to walk in the cold. It was a 15 phone call process, but at 945 I was approved and they wanted me there by 230 pm (5 hr drive) and my sister was supposed to come with me to drive. She never answered her phone so I got in my car myself and just started driving. I got there about 15 min late and saw Dr. Marrero. He is not sure I am having upper GI motility issues, but for sure wanted to rule out this and so he planned the pill swallowing. I talked with him for about 30 min and I felt he did not listen to me and I counted 7 times he asked if I have been sexually assaulted and or abused in my past or potential for assault I am unaware of becuase of the state of my rectum. He said it in the nicest way possible, but it was still somewhat offensive since I have had most loving upbringing and family childhood/adulthood. He does not understand why my rectum can not tolerate being hooked up. We went through in detail my rectal therapy and he truly believes my rectum is what is causing all of my issues, but his opinion was in contradiction to my consult with Dr. Zutshi last week. He was very intelligent and very into research. He asked me if I could wait 7 months of not feeling well and bear though it to see a doctor in Iowa??? He wanted his opinion (cannot remember his name) about a more aggressive biofeedback/rectal therapy program. I have now had nealy nine  months of PT with a great biofeedback therapist here and I do not think my body can go another 6-7 months on a waiting list to see him.

So he then brought me over to the smart pill room and I was set up with the pill. One of the first questions they asked is "Could you possibly have any structures, obstructions, and or adhesions?" well, I said...I do not know, but I have had very bad distension and pain attacks with nausea and vomiting with no conclusion. I told her I was concerned and asked her if she thought it would be better for me to have the small bowel manometry, but like the Dr. she just kind of bypassed my question with her comment that I would have a less than 1% chance of getting the pill stuck and causing issues for me. The pill was gigantic and I had been NPO since midnight and just was able to try and eat at 1015 tonight. I have to document on a journal anytime I have pain, eat, wake up, sleep, or have BM. I am very uncomfortable already. Today is day 3 without laxatives and day 3 without BM. I have to keep going until pill passes which I cannot see how it will and if it does not in five days I can stop. I am nervous for the next five days as I am assuming I will not have a BM. I had horrible nausea all the way home and just ate a little cereal to see if it would ease it a little and I had to take percocet for pain.

I can barely think straight....I drove over nine hours on 2 hrs of sleep and I promise I will catch up on posts. I just wanted to give you all an update so far....love you all and thanks for thinking of me today and protecting me as I drove alone.

Love you.

Lizzie

LIZZIE,

SOUNDS LIKE CC DID NOT HEAR A WORD YOU SAID!!!! DO YOURSELF A FAVOR RIGHT NOW before you forget it. Jot down your exact questions you asked and their exact answers. Write a transcript of your conversation with the doc and the gigantic pill technician. SO if you get in trouble with the gigantic camera pill and you obstruct, you can produce the transcript of your conversation. WHere it specifically said have you had obstructions, adhesions, etc, can you get a copy of this consent form? Write down exactly what you told the tech. Today, call for a copy of your medical record from yesterday. Tell them to send it as soon as it is printed. They can fax you a release form, you can sign it, then fax it back.

THEn if the camera gets stuck in you and does not pass (as it likely will because you can't poop or it may get stuck higher up if you have small bowel adhesions) then they can not say "it's all in your head."

You are a brave girl fighting impossible odds like I did. If you get into a mess and they "don't deal." Let me know, I maybe can fix you up at Lahey CLinic, Where they DO LISTEN! (What a novel concept.) You did good driving yourself.

So how big was this pill?

They always ask people with pelvic floor issues if they were sexually assaulted. They have it in their heads that a person would tighten in that area as a subconscious defense mechanism. There is logic to this, but statistically this theory does not hold up. But don't take them personally on that,, they are just subscribing to a theory. Given your past surgical history, it's possible that adhesions may be your issue, or you may simply have anismus and simply need an ilieostomy. That's not the end of the world to feel better. I don't believe for a second that your rectal issue is connected with your vomiting. Loads of people on here have rectal issues and don't vomit. There is some issue with your small intestine or stomach. It's not all in your mind and it's not all in your rectum.

Best of luck, all my prayers. Rosemary (email me and I can give you my phone number if you really need to get seen at my place in Massachusetts:
email: [email protected])

Amey ((HUGS)) what a burden you are having to bear right now. I can only imagine how much fear, stress and such you are feeling. Being that I met you and reading your signature line, I know you hold faith in out Lord above. I'll be really praying for you.. and we know he PROMISES never to give us more than we can bear.. even though at times it really feel like we just can't take another moment. You radiate strength and confidence.. but don't be afraid to reach out and ask for help! I know Hospice is a wonderful service, you need to look into this for your father-in-law. They will help you and your entire family. I'll be thinking and praying for you often..

Lizzie, our sweet Lizzie. I just feel your desperation! I think you should do what Rosemary suggested, write your questions down, you keep a copy and hand one to the doctors and go over each question and concern, and don't proceed to the next one until the first one has been listened to and addressed. This vomiting can't possible be from your rectal issues.. it has to be from your stomach or small intestines.

Hodaya, I had hoped I'd lose 10 pounds with surgery, but even after eating nothing for almost 1 week, I have only lost 4 pounds. My appetite is back, and although I can't eat a normal amount, I know I have to be careful or I'll be gaining the 4 right back plus more. I've always had to watch my weight.. try and eat the dark chocolate - as it really does have health benefits, and it is lower in calories.

So, I did another poo last night, not much and nothing yet today. They did send me home with instructions to take MiraLax 3 times a day, and MOM if I don't go. Hopefully I'll go soon. Last night I just crashed! I was so exhausted, and I think all the lack of sleep in the hospital just caught up with me. I could barely keep my eyes open and shut the lights out at 8:00 PM. I slept and only woke up at 4:00 to use the potty and take a pain pill and then went right back to sleep till 7:00. I would have kept sleeping if our 7 yr old and hubby didn't wake me up. It's raining today and I plan on doing nothing but laying around. I'm not in any real pain, just discomfort, and my pain med's make me fully comfortable. My perineum area is the most painful right now. I'm soaking my bottom 3 times a day in a sitz bath they gave me at the hospital. I'm totally black and blue down there, and when my Dr. had to clean out the impaction, it just made the whole thing swell up again.. so it feels like I regressed in that area. I can tell though. that I do have more support in that area, so I really think it is going to help me get the poo out of the rectum so much easier.

So far I haven't had any foods that cause discomfort, then again, I have really only had a few food items! Bread, chicken, eggs, cookies, ice cream, potatoes.. and a few other things. Last night, had I been in the hospital for dinner, I would have had spaghetti. That really sounds yummy to me, and I recall Janie had that and was fine, but Jen had it and was not! I guess we are all going to be different!?

Oh my goodness....I just wrote out a whole post that took nearly 20 min and POOF it disappeared.

The gist is that Amey and Jen, you are both amazing for what you are doing for your loved ones. You have become caregivers on top of your everday life responsibilities and its truly admirable. I pray that God can give you the strength you need during these trying times and hold you up when you need the extra strength. You are nurses without the letters behind you name and you are some of the best I am sure...your family is lucky to have you both and even though it may not always be expressed your loved ones feel the same. Jen- Enjoy the snow, the first fall is so pretty on the trees and roads....we have enough up here, but I would like more just for Christmas.

Rosemary- I am trying to remember our entire conversation and write it down. I feel this was the 2nd time out of four I have left CC feeling "did i really drive this far for this?" and its a disheartning feeling. I feel he did not really listen to me and its normally his research day I I think he had other stuff on his mind like his 2 week vacation. He even said at the end, now you dont have issues eating or keeping things down. I had told him and written in the pt questionairre that I was there for nausea/vomiting, pain, distenstion and continued constipation s/p ileo reversal. I rold him the last 2 1/2 weeks about my ER visits, he saw my belly, and still thinks I just am "too young for an ileostomy" and that I most likely am ok in the upper GI. We will see. I have pushed my event button almost twn times for pain and have still had to take the percocet. I feel nauseated, but have not thrown up in 3 days and I believe this is becuase I am hardly taking in anything. I had a little cereal twice in the last over 36 hrs and a little water. I am trying not to throw up and lodge this pill somewhere it does not need to be. Thanks for all your info. I appreciate all your encouragement and ideas....

Hodaya- Love you sweetie! I know your not getting fat sweetie!!! Eat all the chocolate you need if it something that is giving you relief. What did you labs end up saying and are you taking more pills?? from the osteo doc?? Thinking of you always and thanks for your prayers and love.

I feel ok today....feel better after sleeping. Yesterday was so exhausting. Like I said I have not eaten much, but have not had a BM yet either so very uncomfortable in the belly. I feel like I am pregnant with the baby sitting on my right side, but no baby!! I have just been laying down, but think i will try and get up and clean the house. I cannot believe I head to work Monday! Should be interesting. I did send my medical file down to Florida for it to be presented to the BCIR clinic and see what they think. This test is just so uncomfortable not being able to take laxatives...and its going to be a long weekend. Tuesday seems like forever away.

Judy, Marisa, Christy, Janie, and everyone else I hope your well.

Lizzie

Jenise, Dr. Frattini stayed in the emergency room for over 12 hours and I had to be readmitted. The nurses couldn't get an iv in me, because I was dehydrated and he tried for over an hour, too. He is a wonderful doctor and I believe that he's very competant, too. I hope that he can help you. Don't be embarrassed. He's seen everything and you deserve the best medical treatment available, too.

Lizzie, I can't quit thinking about you. I know that you're putting a lot of faith into Cleveland Clinic now, too, and I pray that they had something positive to say yesterday. It is so frustrating to be helpless like we are, and can only put our lives literally in their hands. I'm praying so hard for you for everything to someday be alright.

butterfly

Rosemary, you sound so positive and helpful, too. I used to have a colectomy and had an ileostomy surgery that went wrong in May. I am waiting for June of this year to have surgery again for an ileostomy. I am young, too, but if an ileostomy will help me, I feel like it is absolutely worth it to feel better. I realize it will have its own set of issues, too, but I'm willing to try. I hope that you're on-line when I go thru surgery.

butterfly

Hi Butterfly,

How old are you? Were you the one who had to have some sort of tube out of your small intestine that hooked to your leg?

A normal ileostomy would be a piece of cake after that I would think.. Good luck. God willing I'll still be around in June and still be on here to give you support. I feel like the "old lady" of the group at 53. (I have a great gene pool and if not for the 2 "butcher" surgeons in 2006, I would be in super shape. My grandmother looked 60 when she died at 85. However, if not for strong genes, I may have succumbed during the 7 months I was unable to eat.

Lizzie,

I think you need to get into travel medicine if CC wipes out on you. Consider a flight to Jen's doc in N. Carolina or a flight here to Lahey in Mass. Maybe you could send records ahead, have them reviewed, and do some interviews with docs on the phone ahead of time to be sure these other places could really help you.

While I was unable to eat for 7 months and poop for 13 months and was flying about until one doc finally figured out my colon, rectum , and small intestine were scarred shut, a neighbor of mine said "Travel medicine is the in thing." That was really putting a positive spin on things, but she was right. Believe it or not when I was out at the Mayo CLinic (where the great testing was done, but the doc's didn't know what to do with the results) I did manage to squeeze in a 2 hour trip to the Mall Of America right outside of Rochester, MN. I was then in my 4th month of not being able to eat. I remember being VERY dizzy. But that did not stop me from going through the Mall of America. I wasn't going to be that close and not see it.

Rosemary

Rosemary-

I am definately thinking about travel medicine....especially after today. I decided to try and eat a little eggs this afternoon. I was so nauseated and right now I am so distended and painful. I had the worst rectal pressure I have ever felt. I sat in the bathroom and strained until a little came out and the pressure is still there, but a little better. I feel just hopeless the more the day goes on. I look down at my belly, then at this box attached to me....and wonder if anyone will ever know what to do with me. I am almost thirty...I do not think that I am 'too young" for anything id it will give me my life back. I want to experience life with my husband, have a family (adopt or have someone carry one for me), run, play, and live life to the fullest. Righ now as my husband says....he feels he is just watching his wife waste away. I wish I was rich and could travel anywhere I needed too and i know if I really have to my inlaws and family would help me get to where I needed. I am surpisingly not excited to go back to work Momday and I feel horrible inside about this...I love what I do, love being a nurse, love my patients, but right now I feel like I need to be the patient still until i feel better and get the help i feel i deserve. I will definately take any name and number Rosemary...I just fear no one will be able to help.

Jen- The doctor I saw at CC yesterday mentioned a doctor in NC as well as he one in Iowa. I cannot remember his name. He also talked of Dr. Wexner in CC in Florida that Lori is seeing. I wish I had your doctors concern. I emailed my surgeon last night and have not heard anything from him. I gurantee if your doctors or Rosemarys doctors saw me and my belly after one meal they would admit me and figure out what is going on. I sit here in pain, with nausea/vomiting and constipation after three surgeries and no one seems to know what to do with me. I am glad you seem to be doing well...how is your weight and strength??? I pray you continue to do well.

Amey- ((((HUGS)))) Its ok to have a sad day...I wish I could be there to hug you after all you have done for me...you deserve to have some love back. You are such an amazing woman and I hope tonight finds you in better spirits, but if not, tomorrow is another day. love you xoxox

Lori- Oh honey I think of you everyday too...I spoke of you at my appt yesterday after he told me how amazing Dr. Wexner is....funny how this doctor I saw is supposed to be good, yet he named three others and not even at CC except Wexner that I should be seeing. You are in good hands, feel safe, and I pray this June starts a new life for you with a normal ileostomy and the end to all of this pain and suffering you have had to endure. You are a wonderful person and deserve so much in life....praying for you daily...

Well my inlaws invited me over for some chicken noodle soup. I am not even hungry, but have only had about 550 calories in almost 48 hrs now so I will try some and see how I feel. I wish you girls could see my belly...if any of you get picture messages I will send it to you so you can get a good laugh :( I look ridiculous. I hope you all have a great weekend...i am dreading mine and this test and what is ahead for me. Sorry I just got pity there...so many of you are going through your own issues. I do not mean to be a downer. Love to you all....always,

Lizzie

Lizzie,

normally you re not allowed to take pain meds during the study since they slow the digestive tract and could falsify the result. Moreover it increases the risk that you get blocked by the pill.

Actually, after looking up info on fecal impaction, which is actually a blockage in the rectum... I had most symptoms, bloating abdominal, cramps.. the one thing I didn't have was nausea or vomiting.. which CAN happen with rectal blockage.. (although - one night I was a little quesy - but thought it was because of all the Miralax -4 doses) so Lizzie, it really does make me wonder if your rectum just shut down after your reversal. You actually were doing pretty good before hand, besides the skin irritation at your stoma site.

Lizzie,

Also, no matter who you talk to next, ask them what you are supposed to be doing about nutrition. Everyone hesitates on IV and parental nutrition, but there IS a time and a place. I think you even mentioned some chest port that was safer than the PICC line into the heart. I DID survive for 7 months with no food, but I never really bounced back totally. My energy is of course much better since I can eat, but I never regained original energy or atropied muscle. My thinking is also a bit slower. I also still retain a degree of lightheadedness I developed during that 7 months. SO the longer one goes without nutrients the harder it is to bounce back, as you know, you are a nurse.

Best of Luck, Rosemary

Thanks Rosemary for all you information.

I will print it when I get home, I am at my inlaws for dinner. I have seen Dr. William Chey at U of M. He actually was the first doctor my surgeon referred me to when I was diagnosed with anismus. He saw me and said I was a very difficult case, but he at the time had ordered me an at home biofeedback machine. While I was waiting for it to be delievered was when I obstructed from my rectum and ended up with my ileo. Yes, Satish (sp?) is the name of the doctor in Iowa tha he gave me yesterday.

Peltz- My doctors did not tell me I would be worse off if I were reversed or I would not have done it. I had a bad stoma so yes, I had a difficult time saying anything positive about it when my skin had constant skin infections, fungal infections, and excoriation. It was so painful and changing my bag three times a day was not a good quality of life. When I first looked into doing something about it I asked for a revision if not a reversal. I had so much testing sone and 3 months of biofeedbacl done before I was reversed. Dr. Zutshi at CC and my surgeon and PT here said there was NO reason why I could not be reversed in their opinion. Dr. Zutshi did comment that I would be at higher risjk for re-obstructing due to my situation. That was the only negative she said about my case at the time and this was in July. My defecography, sigmoidoscopy, and anal manometry were all within normal limits for the first time before my reversal. I understand what you are saying and I have talked to my surgeon here about an ileostomy, but no one will talk to me about it. I have sent my info to FL for my case to be presented to see if an ileo vs. BCIR would benefit my situation, but Ihave not heard anything yet. Insurance wise it is very hard for me to go out of network and everything takes time. If I do have another ileostomy I would have to have it done in network and that would be my surgeon or one of his colleagues. Oh and I asked about my pain meds and they told me they were ok to take, just not for the first six hours. The only thing I cannot have is any type of stimulant (alcohol, cigarette, laxative, coffee, etc).

Its hard having so many different opinions even from two doctors within cleveland clinic....U of M when I went there refused to talk surgery and while waiting for someone to decide what to do with me I ended up getting so sick and physiologically obstructing. I sent Jen a picture of my belly...she could not believe a doctor could look at that at not think something is very wrong. I just had a cup of soup for dinner and I am not feeling well at all. My husband said I look very pale and I think I am going to lose my dinner. This is what I am afraid for....I know that I asked for the reversal, but I also made sure I was ok to have one or I would never had put myself in this situation. I do not know what to do....I did this test because that is what the doctor told me to do. I want to badly to get better so I will try anything. Maybe I did the wrong thing, but I feel hopless right now and do not know what else to do.

Thanks again for all of your inputs. Rosemary you are so sweet and thanks for all of the numbers. The hard part for me will be getting it covered since even U Of M is out of network for me. Not feeling well. Have to get going.

Love you all.

Lizzie