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Total Colectomy Part 35

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Posted 5/29/2010 6:38 PM (GMT 0)
Tracy, hope you're feeling better after that wisdome teeth procedure. Rosemary, Allie, thanks for your understanding. Allie, i wonder why they didn't take any biopsies from me too during the scope???? the dr did say he thinks i have a motility disorder. Judy, bless your heart girl!!! another kidney stone???? i hope it's nothin major and can be taken care of easily. glad your family issues are better. you actually don't get enough sleep..... just like me. well, actually not exactly, cause i should be up by 3:30-4:00 tops and usually don't make it to bed before 11:00 pm and i find it VERY hard-imposible to go on like this.....
Posted 5/29/2010 6:53 PM (GMT 0)
Sarah- I can't help but think...if there are people walking around with an artificial heart beating inside their chest, why wouldn't there be an artificial bladder? I did a little looking around; a lot of reconstructive urology consists of building a new bladder out of tissue from the small intestine or bowel, and we know that is not an option for you. There is a doctor at Wake Forest University School of Medicine who is taking a different approach. Dr. Anthony Atala is the director of the Institute for Regenerative Medicine (http://www.wfubmc.edu/wfirm), and he has been growing new bladders using the patient's own cells, which means that there is no risk of organ rejection. They take endothelial and muscle cells from the bladder and grow them on a type of scaffolding. I know you have motility problems with your bladder, but they have used this technique with cancer patients, so clearly they are able to get healthy bladder cells and use those to grow the new bladder. Here is an article from 2006: http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel198.html   Here is a link to Dr. Atala's contact information and research: http://www.wfubmc.edu/Faculty/Atala-Anthony-J.htm   Even if a trip to the US is totally out of the question, he may be able to direct you to doctors in Europe that are also working on reconstructive urology from the same angle that he is. And you never know...maybe you would be such an interesting case that he would bring you over here.   SO GLAD they were able to save your Hickman! How has the discomfort been? I know you doubt the immunoglobulin therapy will work, but either way, the doctors can cross it off the list, and you can move on to a more promising solution.   I'm pretty sure my doctor took full-thickness biopsies. My follow-up appointment isn't officially until July 13th, but I think he will squeeze me in for a visit as soon as he has the results. When I had my colectomy, they sent all of the tissue to the lab for analysis and they didn't find anything abnormal, except for the fact that my colon was unbelievably long (don't remember exactly how long it was, but my surgeon was surprised that so much colon fit inside me).   Judy- It's great to hear from a teacher. I still have significant problems even though I'm 2.5 years post-op. My goal is to get a Master's in prosthetics, but I have to have a back-up plan in the event that I just don't have the strength to dive into grad school, and I don't think having summers off would be a bad thing for me. So thrilled that you haven't experienced any complications following surgery! That's great- hope it stays that way!   Tracy- While many people don't get nosebleeds after having their wisdom teeth removed, it is not abnormal. Wisdom teeth have huge roots, and if the tooth is sitting at a weird angle, or the root is extra long, it can extend into one of the sinus cavities. When the tooth and root are removed...gushing ensues. No cause for concern as long as it doesn't happen again.   Praying for you all! Have a wonderful Memorial Day weekend!   Allie  
Posted 5/29/2010 7:49 PM (GMT 0)
Tracy,

The being put to sleep may have temporarily relaxed the anismus and let gas go. what a deal. Glad your nosebleed stopped. WilD!

Marisa, So tell about this abdominal breakup of adhesions. Is it Clear Passages? Rosemary
Posted 5/30/2010 12:32 AM (GMT 0)
Rosemary, I have been seeing a Massage Therapist for about six months now. Yesterday she suggested we do an abdominal massage to break up the adhesions. She could feel a lot of them and massaged them until it felt like they were breaking up. I get a lot of "pulling" pain and I am positve it is from all the adhesions and scar tissue that is built up. Seven surgeries will do that I reckon. All I know is that today I feel really good. She said that the massage can also help with the motility issues. Will see her in another week and continue to see if we can get some more to breakup.

Hodaya you must get more sleep! Have you ever tried taking Melatonin? It is a supplement you take at night and will help you get sleep. My hubby takes it about an hour before bed and it helps a lot. I take ambien and zoloft at night and I still have problems sleeping. I wonder if the lack of a colon is to blame??
Posted 5/30/2010 1:02 AM (GMT 0)
Judy,

thanks so much for your kind offer. Indeed, I had some good conversation with shmuel before her surgery regarding the bladder issues and her bladder surgery/internal pouch. I also know about this option but in Germany it is not widely done. Furthermore, I am a very special case and nobody can say if/how the dysmotile small bowel affects the outcome of such surgery and the function of the pouch.

Do you know if shmule's complications were CI-related? I hope she is better after surgery nonetheless, at least constipation-wise.
Posted 5/30/2010 1:21 AM (GMT 0)
Allie,

SO kind from you to do some research for me. Indeed, my father did bring up the same issue while I was in the urological clinic. From what I haver read it is still very experimental, and as you pointed out it was done in cancer patients. And there is still a tricky point which deserves further research...don't remember which was the crucial point.

I have made ton of bad expereinces with German docs, and I can definitely say that they are the docs worlwide that are most unwilling to cooperate..they are just convinced that nobody could be better or know more than themselves. It is a rarerity if you find a doc who is open and willing to cooperate with foreign docs.

Furthermore I can't imagine that a procedure that is still that experimental and which will add to the uncertainty of the outcome that does already exist anyway will be done on me. You would just add another uncertain point to the existing uncertain points while docs would be glad to have some known and certain aspects in the hand before performing any procedure.

Tomorrow, I will have to prepare myself for the short trip, Monday I will receive the first shot.
So I will be absent for a few days.

At the moment I can't do anything except for trying the immunoglobulin therapy and hoping that either negative or postive results will clearly show up so that a decision can be made after 4 weeks of therapy trial if it is reasonable to go on or not.
I deeply hope that there is the chance to get the bladder tissue analyzed in Italy. A finding similar to the biopsy of the bowel tissue will perhaps convince the urologists here that may bladder issues do stem from CIP and are not a separate entity.
Posted 5/30/2010 1:30 AM (GMT 0)
PELTZ.......My heart goes out to you girl. AND you are young as I recall. I wish you all the best with the shots.

Marisa, I heard of this thing called Clearpassages.com where specially trained therapists break up scar tissue in abdomens BUT they have to be really trained so as to not hurt an organ. Wondered if this was what you are doing. Glad to hear you feel better from what you do with the abdomen message.

Gilda,

Got your second tel. mssg. I have no time to talk at length. We are just getting back electricity after 4 day outage, had to trash all my food and buy new, huge tree down in my yard, power lines, dealing with stuff with mom in nursing home, depo's for my case, getting ready for two trips and praying that I stay well. Am trying to resolve my dizziness. Some days worse than others; other days fine. If you have a specific question, please post it and I will try to help you to the best of my ability with whatever it is. Other than that that is all I can do at this time. Wishing you well.

Praying for Lizzie and for all of you.

Sincerely, Rosemary
Posted 5/30/2010 1:38 AM (GMT 0)
Rosemary, there is a dizziness that is called vertigo....wonder if you could be suffering from that? My mom had a horrible bout with that when she was in her 50's for several months. She is ok now.
Posted 5/30/2010 1:54 AM (GMT 0)
Allie,

as far as I have understood it correctly, a tissue biopsy is needed first which will then used for the growth of the new cells/tissue. It is a biopsy from the smooth musles and here it is, the critical point, at least in patients with dysmotility and neuromuscular alterations. My smooth muscle cells seem to be damaged in addition to degenerated nerve cells.

So if you take a biopsy with a damaned smooth muscle tissue....which new tissue will grow out from this diseased tissue? When it will reproduce itself will the damage be passed over? Normally, with cancer etc. the smooth muscles cells remain intact, the neuromuscluar layer is generally not affected by common bladder diseases so that it can be used for reproducing new healthy tissue.
What do you think?
Posted 5/30/2010 2:24 AM (GMT 0)
Hi Tracy,

Glad to hear your mom's vertigo passed. Mine seems to come and go depending on the day. Low pressure days seem worse. Fresh cool air days seem best. I know my Gp, though new and very nice and down to earth, will likely not know, but I'm going to phrase it as things I've tried under conditions I feel best and worst, and ask her if she can find me some information within a few days or a week after I meet with her. That way I won't be putting her on the spot. Maybe this will work as she will have time to process it? Rosemary
Posted 5/30/2010 2:40 AM (GMT 0)
oh Sarah.... i wish you the best of luck with the shots, you're way too young to go through all of this.. 22 as i recall?? Marisa, i don't have probs sleeping at all, i can sleep at any time, any situation, even standing up lol, i just have to get up early so i can drink the pear juice, which is the only thing that makes things moving for me, and then finish with b/r trips, so i can leave the house at 6:30 am to get to work on time, and all these b/r trips take me about 3 hrs every morning.... don't know what other way to deal with this.
Posted 5/30/2010 4:52 AM (GMT 0)
23, turning 24 on August, 8th...but that does not really matter....i feel as if mylife has stopped at age 19 and i can't believe that I will turn 24 in August. It is somehow unreal...
Posted 5/30/2010 3:47 PM (GMT 0)
oh GOSSSHHHH, do i know how you feel...... for me it also started when i was 20 (37 this May) and i too feel my life STOPPED (that's exactly how i feel) at that age.... this thing took over my life then, and ever since then i just feel i'm not alive at all!!
Posted 5/30/2010 4:02 PM (GMT 0)
I feel like my life as I knew it was taken from me at age 50 in 2006 when I underwent what was later found out to be the unneeded pelvic floor reconstructive surgery with removal of sigmoid colon, misdiagnosis and all the rest.

I feel, now at 54, like I am still living on borrowed time, but luckily I found my ileo surgeon who did save my life at 51 in 2007. That is why all the travel I'm doing and the dancing on cruise ships.

But I have this weird feeling like I'm doing all this in the "after life" so to speak, as without that one surgeon in 2007, I would have just been left to die (scarred shut colon, scarred shut small bowel) but being written up as neurotic, anorexic, by all the other docs who want to protect my original 2006 docs....a real "white coat wall of silence" could have killed me. The internet is full of stories like mine. Look under "sufferers of iatrogenic injury". It's scary.

So I too share the feeling that life as we knew it stopped during an earlier time.
Rosemary

Rosemary
Posted 5/31/2010 1:07 AM (GMT 0)
Hoddaya,

I even did not have a normal life prior to age 19 but somehow I still managed to go to to school despite digestive issues. I have had them my entire life and I can't remember the day where my bowel did function properly...probably because it never did so. That time, I already had slight bladder problems as well, I had recurent attacks of severe bowel pain and chronic abdominal pain along with bouts of nausea and fullness. the symptoms did first vary in their intensity and were more recurrent than constant until adolscence....when they started to become chronic and really life-altering making impossible to go into holidays without significant worsening of symptoms and suffering through the time....while I tried to hide my pain etc infront of my parents/familiy...I did not want them to worry since I knew they could not help my either but more and more it became obvious to my mother that I did not do well at all.

At the age of 19 my condition got really serious and I struggled to survive physically and emotionally. Prior to age 19 I had had no possibiliy to have a normal life with normal activities, a social life etc cause everhyting was determined by my digestive issues. As nobody could explain them I felt ashamed of my problems people at my age does not waste a single thought for. It did not help at all that docs said that my digestive issues were only functional, I had IBS, nothing serious and a condition which you can handle and have a normal life. I f you don't handle it, well then it must be your fault. Then they said I had a psychosomtic disorder, and when things became really serious at age 19 I was accused of having anorexia, hurting myself, abusing laxatives etc. And life from age 19 to age 22 cannot be called life at all. it was surviving, extreme suffering every single day, that's all. Within this period I had to make expereinces I will never forget my entire life. Luckily, this extreme worsening of my condition was at age 19 when I had just passed my school and my final exams.

In school when people asked why I ate so oddly/little I did not say the whole truth since I did not know what to say and how to explain my issues they had not even thought about their existence yet. Compassion is granted when you have MC, colitis, cancer etc but NOT when you have motility issues I even did not know that time. I was afraid of telling them that I have no real diagnosis or that I have a functional problem...they wouldn't have understood the impact on my life anyway, the constant worrying about the pooping/constipation, the food that could have a harmful effect on my digestion I tried to find out (in vain) etc etc... I mean I don't want euphemize these disease, they can be awful as well but at least people do understand what you are going through and you don't have to defend yourself. I had longed for a diagnosed even if it had been chron's etc...because then I would have had a diagnosis to deal with and a therapy option, and the acceptance of my problems by the docs and other people.

I don't like to think about the if's... Since I have been better through the ileostomy particularly in terms of debiliating pain I have been trying to focus on the expereinces I hwouldn't have made without my disease and which are indeed worthful and meaningful for life. But lately, I am very frustrated and I don't succeed in this attempt very often.

Post Edited (pelztier86) : 5/30/2010 7:13:45 PM (GMT-6)

Posted 5/31/2010 2:30 AM (GMT 0)
Peltz,

You have got to write a book! You have the knowledge, the experience, and now you even have docs that have tuned in to some degree anyway. What you have in the states is often called an "orphan disease" meaning that it is rare and that not that many people have it, therefore research and dollars are not put into finding a cure for it. HOWEVER, awareness needs to be made of severe motility issues like this. THough rare, they do exist, and it is so unfair that people like yourself should grow up so "alone" without diagnosis and be made to feel that it is your fault. You are one brave, special being who has so much to offer. I can think of a ton of docs I encountered who could not even figure out small bowel adhesions let alone something like what you have. We could both educate the bejabores out of them!

You just need a vehicle through which to share your knowledge. Are there talk shows on medicine, or research clinics on rare conditions in Germany? Are there others like yourself? Any support groups? Anything like this cannot be handled in a vacuum. It is too much for one human being to shoulder alone.

WHen I first read your posts, I thought, "man oh man, this lady really has a wealth of knowledge." I assumed you were much older and had some sort of a medical background professionally as well as having the condition.

Is there a blog you can start on the internet? Just an informational one. You may find that others have this extreme of a disorder too.

My heart goes out to you that you've basically never known a normal day, but I'm sooooo glad you are better with your ileostomy. I'm glad you got some relief.

Sincerely, Rosemary
Posted 5/31/2010 3:11 AM (GMT 0)
Sarah, it's AMAZING!! reading your descript ion of what you've been through all these yrs is actually reading about MY OWN life! (tho for me it started only at 20, till that age i was TOTALLY normal, so weird). but my gosh, that's exactly what happened to me too and i had all that crap from drs too about "you're doing this to yourself and it's just IBS" etc... and not knowing at the first yrs how to explain my prob to ppl, cause i didn't understand it myself. with no diagnosis and noone to explain it to me...... i really thought there are no creatures like me exsisting and that i'm probably some kind of a freak.... you explained perfectly what it's like living with this desease, the coping with the environment and the lack of diagnosis and compassion from both your environment and the drs.... all that really made me feel like falling appart.. when finally given a diagnosis and explanation and a bit of compassion from drs, that's when i could start feeling a bit better, at least emotionally. but you wouldn't believe it, now that i'm post colectomy and i went back to the drs complaining i'm still so very constipated, they again said "maybe it's emotional......" CAN YOU BELIEVE THIS CRAP????? Rosemary, what you experienced is even worse, cause you didn't even have this desease like us and now suffering the consequences of what those so called drs did to you. that breaks you heart even more and i can't say enough how sad i feel for you.
Posted 5/31/2010 4:29 AM (GMT 0)

Sarah- I hope you had a safe trip to the clinic, and that the injections go well. Keep us posted! Yes, the method of growing a new bladder is still experimental. I understand what you're saying about using cells from a dysmotile bladder, but I wonder if every cell that makes up your bladder is damaged. Surely there must be some that are normal, but then there is the monumental task of finding those normal cells, and finding enough of them. Despite all of the variables and unknowns, I still think it would be worth it to call or e-mail the doctor at Wake Forest. You never know...he might have an idea, or he might say that it won't work. Either way, I think it's always better to have some kind of answer.

 

I'm so sorry that you have had so many bad experiences with the doctors in Germany. We have all run into more doctors who thought we were crazy, than who thought there was a genuine pathology, but having doctors that won't even consider the perspective of another physician makes everything exponentially more difficult. Beg and plead with those doctors to send your bladder tissue samples to Italy. I am hoping and praying that they will be cooperative, and recognize that the bladder biopsies must be analyzed by the Italian doctor.

 

Rosemary- If you need another possible diagnosis to suggest to your doctor for the dizziness, ask to be tested for Meniere's Disease. Actually, your best bet is to make an appointment with an audiologist (preferably one who has an AuD- the clinical doctorate degree). Part of the practicum for my major was shadowing an audiologist in the university's speech and hearing research clinic, and many problems with dizziness stem from an inner ear problem. I kinda hope your electrolytes are just a little off, but if there is something going on with your inner ear, an audiologist will be better equipped to make an accurate diagnosis than a general doc.

 

I know exactly what you all mean. Life stopped when I was 18 (I'm now 24), and it wasn't all that normal prior to that. I am realizing more and more how "off" things were when I was younger. I had near panic attacks when I had to eat at a restaurant (because I knew pain was soon-to-follow), and even in 5th or 6th grade, I was waking up 2.5-3 hours before I had to leave for school so that I could try to get some relief by going to the bathroom. I was originally an equine science major at Colorado State University, but I got too sick to continue. I don't focus on where life might have taken me had I been completely healthy. That only leads to frustration and resentment. In all honesty, this is my life, and I wouldn't change it. I have so much. I have learned volumes about life, people, and medicine. I am truly blessed. Yes, I am sick. Yes, I do experience a lot of pain, but I do believe that someone will find a solution someday, and that is the day I look forward to. Every life is precious and important, no matter how difficult it may be. So, to all of the incredible ladies I have had the honor of corresponding with online, please don't give up. Look to the future, and hold on to hope. Praying for all of you!

 

Allie

Posted 5/31/2010 8:01 AM (GMT 0)
Hi Rosemary, It's o.k. that you haven't been able to call me back. I had no idea you had so much going on in your life right now. Anyway, we can talk sometime in the future when you aren't dealing with so many things. I have been thinking about talking to my doctors about getting an Ostomy. Many days I am still so ill and I am now 1 yr. and 2 months post-surgery (Subtotal Colectomy with ileo-rectal anastamosis). Anyway I have really felt depressed and sometimes think an Ostomy might be a better solution. I just have so many days when I can't really leave the house because of having to make so many trips to the bathroom! I am usually fine each day between noon and about 5:00 p.m.; other than those times though, all hell can break loose and I can be in and out of the BR 4 times in an hour! I really think the reason I often have to return to the BR within 5 minutes of my last BM is because now I don't have a colon for "storage." I know it has to be hard to live with an Ostomy but maybe it doesn't restrict one's life the way that chronic diarrhea does? Anyway just write or call when you can and let me know what you think about me going to an ostomy? I really hope you get your problem with feeling dizzy figured out. I don't have that problem but as I told you before; I feel quite weak a great deal of the time. I, like you, must drink water almost continuously. I always feel thirsty and bring a water bottle with me everywhere!

I hope everyone else on this forum is doing at least a little better, each and every day!

Love, Gilda
Posted 5/31/2010 1:09 PM (GMT 0)
Hi, I haven't logged in a very long time.  I often read others posts, I get good ideas from all of you.

I had a total colectomy 1 year ago.  It has been a difficult recovery but thankful I am pain free.  Happy to beable to poop, some days way too much.  A few days ago I spotted going, or going a very small amount.  Some nausea.  Help, I don't have a clue what to do.  I am scared to death, I thought my nightmear was over.  Any ideas will be greatly appreciated.  I started with rectal spasms a free months ago, oh mama they are painful.

Rosemary, I too experienced vertigo, I think my friends and co-workers thought I was crazy.  I went to and ENT and he suggested I see a physical therapist to have my crystals rearranged.  It was a strange experience but after a few trips to see her it was gone.  Worth looking into it.  Google ear crystals, it is a real problem.

We are a rare breed of women who live in silence most of the time.  Others take pooping for granted for us it is a major event.  I am so thankful I found others that understand.

Posted 5/31/2010 5:16 PM (GMT 0)
Hi Hodaya,

Yeah, my original surgeons doing the unneeded 2006 surgery and them still doing it to others and my suit dragging on and on into infinitum and there really being no over-seeing power to make unconscionable surgeons stop doing unneeded surgeries and doing them wrong really does make my case so very different from all of yours and so emotionally more difficult to deal with on different level that all of yours. I fully agree. We all have seen the dark side of medicine being called crazy when people could not figure out problems with us, but I have actually seen and been needlessly damaged by the criminal side of medicine. Believe it or not some of my "friends" are ON me about why did you have the hysterectomy in 1995 that lead to even the descent of the non-symptomatic small bowel internally prolapsing that lead to the misdiagnosis of it being the sigmoid colon and all the rest. I said had I been informed about the full effects of hysterectomy I would not have done it! DUH! How they think saying this is helping is beyond me. Now the HERS foundation has this great video that they are trying to get congress to pass a law to show it to every woman before she consents to a hysterectomy. It explains that body parts can fall into the void left by absence of uterus, that nerves to the bladder and colon are unavoidably damaged when the uterus is removed. THey are having a hard time getting this through congress and made into law because that would sure cut down the number of women having hysterectomies and would therefore cut into profits for doctors. Much of medicine is all about money for docs not what is good for the patient. I had only a 2 cm submucosal fibroid that could have been removed through the vagina in a day-stay surgery. Was I told of that by 2 GYN consults? NOOOOO! Again I got screwed by the medical community. Anyway, thanks for your condolences about this as this is a huge issue for me.

Allie....Good idea to see a radiologist about ear issues for the dizziness. Conmarjo I will google ear chrystals.

Hi Gilda,

I understand your issue of being housebound during those times of the day that you mention and can sympathize. However, I am absolutely the wrong one to advise anyone on what to do regarding whether to have a further surgery or not....look at all the wrong choices I've made (though I was not given the info I should have been and did run into unscrupulous docs for my original pelvic floor reconstruction and sigmoid removal in 2006 that lead to me needing the ostomy.) So I could not in good faith ever advise you on what to do.

But I can tell you that having poop collect in a bag, you DO have the "luxury" of emptying it whenever it's convenient for you v.s. having to stay in your home near a bathroom to go rectally.

WHen I first heard about people having their small intestine connected to their rectums I thought "how the Heck would this work out?" While there is some reservoir capacity, the output from a small intestine is usually so liquidy how long could a rectum hold this? You clearly have no slow motility issues so I can see why you have to be near your bathroom a lot. Plus I would think small bowel output would still like the dickens when it came out of the rectum. OUCH!

HOWEVER, even with an ileostomy, if I eat too much sugar or fake sugar, my bag fills and fills with this clear liquid yellow output and I dump bag after bag and have to stay near my bathroom anyway. BUT these are rare cases and in general, I with an ileostomy, do appear so far to be more mobile at all times throughout the day than you are currently.

By the same token, don't forget, each surgery we have may come with its own set of issues. Rmember Lizzie's stoma was not made correctly so poop leaked out under the wafer and not into the bag and burned her skin. That's why she had the internal pouch which she has had many issues with. The stoma needs to come out enough to be a little spout so the poop drips INTO the bag. Thank GOD mine was made correctly. All I have to watch out for is return of adhesions further back from the stoma due to the original 2006 surgeons making such a mess of me. BUT so far so good since the 2007 ileo surgery and lysis of these adhesions and application of Seprafilm adhesion barrier so new adhesions won't grow in as densely or as plentifully as the ones from the 2006 surgery were.

Also remember with an ieostomy stoma, you cannot eat a lot of roughage and you have to chew, chew, chew and drink tons of water. I even had two stoma blockages on mashed potato. And you have to eat many mini meals not just three big meals. The stoma is very small so it can only put out just so much poop at once.

Plus stomas can develop strictures and narrowings at the skin level or deeper. THis is rare, but I have heard that it can happen. So far I guess I don't have that issue and sure hope I dont get it.

If you had a stoma made laporoscopically it would cut down the chance of adhesions, and if your stoma was made correctly, and you avoided anything that gave you diarrhea or a stomal blockage, you may be better off. You would be able to leave your house more.

There are soooooo many unknowns with surgery especially with guts that it is really impossible to help someone decide. I've given you as many pro's and con's as I can think of (hopefully have not added to your indecision), but the ultimate choice as you already know is yours. I so wish I could give you a definitive answer as I totally can relate to your current dilemma, but this is the best I can do.

Good luck making your decision. WIth my track record of surgery, I say the least done the best or no surgery best of all, BUt that is just because of my history and the trouble I got into. Everyone else on this board has docs who mean well from the get go, then things may just go wrong or not work. I unfortunately ran into all the wrong people at the wrong time. Except for my ileo surgeon.

So there you have my answer. Gotta get to that audiologist and get this dizzy thing under control then get my tree cut up from the storm. We have more storms coming this week. Oh, joy, hopefully not like this last one.

Good luck..

PRaying for all the rest of you I haven't mentioned. Hope Lizzie is still doing better.

Sincerely, Rosemary
Posted 5/31/2010 8:31 PM (GMT 0)

Hi everyone.. I've had family visiting the past couple weeks, so I've been out of the loop.

 

My ileostomy is scheduled for June 11 and I'm leaving for Ft. Lauderdale a week from tomorrow.  My best news ever is that my brother is flying in from Kuwait and my mother is flying in from Iowa to be with my husband and I.

 

Luckily, my boys are 17 and 20 and can help take care of things at home while we're gone and concentrating on getting me better.  I really hope so and that my ileostomy will work this time around.

 

I can actually say that I'm looking forward to my surgery.  It's been a long year with my leg bag and I'm ready to wear shorts again!

 

Butterfly

Posted 5/31/2010 8:46 PM (GMT 0)
hi all....

so I haven't exactly gotten the hang of all these threads....I tried to start a new one with my questions about my upcoming colectomy but had little response. I guess this is where you are all at, so I'm gonna copy and paste. I hope you don't mind....I'm just really nervous and trying to plan for what I might need and could use all the firsthand info I can get.

Me, the super-abridged version: 27, single, NO FAMILY, living in NYC apt w roommates (NOT reliable as caregivers). CIP/colonic inertia since birth, GP since 2008, GERD, hiatal hernia, SIBO, malabsorption, (overall bad motility, now med-resistant), plus lots of other medical stuff (heart, blood pressure, 1 year in working recovery from eating disorders, very vague kidney problems, issues w dehydration and electrolytes)....

*WILL BE HAVING COLECTOMY (LAPROSCOPIC)WITH ILEORECTAL ANASTAMOSIS SOMETIME AROUND JUNE 21* The plan is no ostomy. If there's a problem they'll do a temp. My doc anticipates hospital time between 4-5 days to 2 weeks, bc of delayed motility (they can't release me till my system "wakes up", which for me could be a while....) Also, they may admit me for the prep bc of past near-death experience of hypokalemia after a colonoscopy prep.

 

since i'm totally on my own i have a LOT to plan, and need to know as much as possble what to expect (also so i know how much/what kind of help i might need to ask for)

 

1) pre-admit/admit/day of surgery....?

2) post-op--how out of it were you? for how long? (did u need someone with you?)

3) how long in the hospital and why? at what piont did you come off of tpn, catheters, (able to wear real clothes), etc?

4) nutritional step-up? was it in hospital? at home? both? who directed?

5) discharge from hospital--when? how "able-bodied" were you? did you need home nurse services? how much help did you have/need at home? what were the first few days/weeks like? also, any supplies i should have on hand? (i'm not supposed to have an ostomy unless something goes wrong)

6) how long until you really felt like yourself again?

7) are there any kinds of "help" you can think of that  i might need and not b thinkin of?????????

8) complications??

9) also, i have problems (already) with dehydration and electrolyte maintnence. has anyone had trouble with this since the surgery? how do you manage it? (i take meds and drink lots of gatorade, vitamin water w potassium, & pedialyte now.....;P)

thanks so much to anyone who takes the time to read and respond to even part of this. you can also respond to me directly at [email protected]

Posted 5/31/2010 10:17 PM (GMT 0)

Rcn96- Hello and welcome!

 

I am 24, and had a total colectomy (with ileorectal anastomosis) for colonic inertia in November 2007 when I was 21. I have motility problems throughout my GI tract, so please feel free to ask anything! First off, I am so sorry that you have to go through all of this completely on your own.

 

1. Pre-admit - standard blood work was the extent for me. I don't have any cardiovascular issues, so they didn't do an EKG. Night before surgery was the dreaded bowel prep- what a nightmare.

 

2. Post-op - I was out of it for several days. I am about 5'6"/5'7" and went into the surgery weighing about 85 lbs. They started IV lipids as soon as I woke up, and they put a PICC line in the day after surgery and started TPN. My mom is a nurse, and she was there pretty much all the time. Even though she was there so much, the nurses at the hospital still took great care of me.

 

3. Hospital stay - I was in the hospital for nearly 11 days for several reasons: I weighed 85 lbs, my gut wasn't waking up, and I lost two units of blood. The blood loss was not from the colectomy. My counts didn't drop until after the PICC line was in- even though the guy who put the line in did an absolutely phenomenal job, they had me on Heparin, so even the tiniest of bumps against the side of the vein with the PICC line upon insertion would cause bleeding.

 

I was on TPN for the duration of my stay, and the doctors seriously considered sending me home with it, but they wanted me to try without it first. My catheter was removed a couple days after surgery- earlier than they wanted to, but it stopped draining, so I had to urinate really bad but couldn't because the catheter wasn't working right.  I didn't put on real clothes until the night I was discharged, and I didn't wear a pair of jeans until about 5-6 months after surgery. No joke! But everyone recovers differently.

 

Walking- walk, walk, walk! As soon as you can! The more you walk, the faster your gut will wake up. A physical therapist will probably come in and drag you out of bed a couple days after surgery. It starts with a couple of steps, then 10 feet down the hallway...it is slow and tedious going, but it will get easier. The narcotics also keep the gut asleep, but you MUST keep your pain under control. DO NOT get behind the pain and let it get out of hand because it is a nightmare to get it back under control if that happens

 

4. Nutrition - When I had my pre-admit blood work, the nurse also went over a lot of paperwork and information. It was then that I had the opportunity to opt for one of the clinical dietitians to review my case and meet with me. I cannot eat any dairy, soy, or red meat, and you have to go low-residue after surgery, so I wanted to hear what a pro had to say about the best post-op diet for me.

 

5. Discharge - I definitely needed help at home. You can't lift anything over 8-10 lbs for a certain number of weeks, my surgeon wanted me to stay off the stairs for awhile, and it was about two months before I was back to driving again. Maybe things would have been different if I had been stronger going into surgery, but in my opinion, this is the kind of surgery that you need help recovering with.

 

As far as supplies, stock up on ice cream, shake ingredients, juices (may have to be diluted), protein powder (make sure it's something you can tolerate before surgery- don't eat anything brand new right after surgery), pudding, jello, yogurt, applesauce, canned fruit (no pineapple) Gatorade, broth, eggs, protein, non-whole grain bread, very low-to-no fiber soups; things like that. No nuts, seeds, and high fiber things for awhile. If you end up with an ostomy, I'm sure the hospital will send you home with a supply.

 

6. How long until I felt like myself again...well...several weeks went by before I left the house for any reason other than a follow-up with my surgeon. The soreness hung around for awhile, and I was extremely exhausted. This surgery takes a lot out of a person, and your body is working overtime trying to rebuild and heal. I took incompletes in my classes starting at Thanksgiving break, had surgery November 26, 2007, and I was back in class for the spring semester on January 16, 2008,  so that is when I really started being out and about again.

 

7. Misc. - Your behind may burn for awhile as the tissue adjusts to having more enzyme and acid-rich stool pass. Baby wipes and diaper rash cream are helpful. Don't go home without a filled prescription of an antispasmodic (gas pains and spasms of the small intestine hurt!). Super comfy and loose clothes. They will probably give you a daily Heparin (blood thinner) shot. Heparin really hurts, and the standard procedure is to give it subcutaneously in the abdomen. Ask the nurses to give it you in your thigh.

 

8. Complications - Just the blood loss, nausea, and a BAD reaction to some Phenergan for me, but there is a laundry list of things that can go wrong. If anything feels "off," SAY SOMETHING!!

 

9. Dehydration - I always have water with me; I drink a lot.  The only time I have had problems with dehydration or my electrolytes getting off balance has been when I have to do an enema prep for another test (yes, we're still testing because I still have motility problems).

 

If you have any other questions, I'm more than happy to help in any way that I can. Post them here, or e-mail me at [email protected].

 

Allie

Posted 5/31/2010 10:33 PM (GMT 0)

Hi Everyone!

 

Hope you are all enjoying the weekend.

 

Little update on Lizzie...she came home from Cleveland on Thursday, May 27. Thankfully, the pain and nausea when she eats is getting better.

 

She had another trip to the ER on Saturday morning (May 29). The consensus was that she was pretty dehydrated even though she is doing a great job of getting lots of fluids in. After 2 liters of fluid, she was feeling much better and was able to enjoy the day with family.

 

Yesterday, her surgeon at Cleveland decided that she needs to be on at-home fluids or TPN because she can't keep up with the caloric demands that her body has right now. Last night, he had her admitted to her local hospital, and the plan was to start fluids, TPN, and have the nutritional team do a full evaluation.

 

Although she was very encouraged that her surgeon wants her on some kind of nutritional support, she is feeling pretty exhausted and weak, so pray for strength and restoration of stamina. I haven't heard anything today and I am praying that's just because she is resting, but I will update you all as I learn more.

 

Love and prayers to you all!

 

Allie

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