Hi all and welcome to those of you I've not seen before! Sorry I've been away for a bit (again) but I just closed on my house Friday night and it's been busy since then.
@Cathy-Glad to hear you are doing well enough to be back at work full time. I am scheduled to return to work on April 3rd myself and am looking forward to getting out of the house, if he actually clears me. How is your daughter?
@Sasha-How are you doing now? What were the symptoms you experienced when you developed lesions?
@Sasha & Cathy-the vomiting went away a day after I made my post and all excretory functions have settled down somewhat. I have had one nausea/vomiting experience since then but am chalking it up to possibly eating something that didn't agree with me. Number and type of BM's seem to vary from day to day and I haven't noticed any consistent pattern with what I eat as of yet. I haven't had any 30 trip days since last Monday though, so I guess it has improved. :) However, the constant aching in my abdominal area has not gone away. It's not a sharp piercing pain, it's a steady ache that varies in intensity seeming to radiate from my abdominal area to my back in the area of my kidneys, which gets worse if I lay on my side. I'm also feeling just generally tired and run down. I think that I may have developed a staph infection and will be calling my doctor tomorrow. I've had several boil looking areas pop up on my buttocks today and some folliculitis on my stomach. I've also started running a fever of ~101. I've got an appt with him next Friday but am going to try to push it up if he thinks it is necessary. If I can't get in to see him tomorrow, under what circumstances should I consider a trip to the ER? Could a staph infection be related to the other symptoms?
I'm going to go take some ibuprofen and try to get some sleep. As always, thanks for all of the support and information.
My doctor get me in to see him today and yep, staph infection. He said that most staph these days were highly resistant to the newer antibiotics and were responding better to the older antibiotics. So, he gave me a scrip for tetracycline and told me to call him back on Monday if the infection did not appear to be responding.
The aching in my stomach he said was probably due to scar tissue and that with time that should go away. Also said that time should cure some of the issues I have been having with excretory functions but that I should call him if I experience any further episodes like I had last week.
I have another appt with him next Friday. I *should* be released for work from that point, provided that we can get rid of this infection.
Tweety, Can you tell me what tests you had to diagnose your colonic inertia?n I passed the defocography, but they did say that my pelvic floor came down too far. I dont know if that means I cant have the subtotal colectomy. Does any one know? I will be anxious to finally meet with my dr. when this transist study test is done so he can answer all my questions. Thanks
They had ruled out ulcerative colitis long time ago. My colonic lining was in good condition. The colon was just very dilated and elongated which they were blaming my pregnancies for. My ascending and transverse colon had fallen down then it took a steep hike up to my spleen and turned in towards my spine and looped back down descending towards the sigmoid which had multiple loops. The splenic area looked like the head of an alien so I jokingly called it my "alien baby". I had the pics the doc gave me. The GI doc had a difficult time with the colonoscopy and nearly ran out of scope. The surgeon had said it was the longest floppiest colon he had seen in a long time. I was having lots of mostly diarrhea( no gallbladder) and lots of pain due to the "kinks". I have about a foot of colon left now. The official DX was colonic dysmotility and then the path report came back with the neuropathy consistent with colonic dysmotility. It is from this report that they told me I may lose the rest of it and would receive the pouch at that time which they estimated to be 10-15 years from now. I just don't really know how they do the pouch and how it works. By the way, I have no pain since the recovery and have 2-4 BM/day. I am about 8 weeks post-op. Life is much much better for me for now. Thank you again. Tammy
Hi Annette, I am in the same position as you are. I am actually starting another transit test tomorrow morning to confirm colonic inertia. I also have back pain and what I thought was a bladder infection because it seems like I have to constantly pee. It just seems like an all around aching and burning in my lower back and abdomen, plus not going to the bathroom for days and days. I dont know where you are, but here they seem to just want to keep shoving laxatives at me and its not helping anymore. Did you have a colonoscopy done? were your markers all stuck in the same place? I havent had a colonoscopy and dont really want one either, but I have had EVERY other test you can think of. I'm hoping more people jump in that have gone through this and answer all my questions. I wonder if a lot of people are on spring break? In the meantime, I just keep reading and reading here. keep in touch!
Annette- There have been a couple of us that this happened to. The reason my hair fell out was due to malnutrition. I had complications after the first surgery, and I was on TPN (total parenteral nutrition) IV for a few weeks, then a second surgery and eating was slow going after that. I lost about 3/4 of my hair and I'm starting to grow some again. I don't plug the shower drain anymore with hair falling out. I really did feel like it was all going to fall out but suddenly it stopped falling out and I have new peach fuzz starting. The hair loss is not a life threatening side effect, it was my life threatening infection/sepsis that caused the hair loss. It's not the norm.
Hi everyone, I had my first x-ray this morning from my transit study. They said that all the rings have passed through my small intestine and are now located on the lower right side of my large intestine and kind of bunched up. This is exactly what I thought would happen. Nothing moves from that spot. I guess I have to feel "lucky" that I have good motility in my small intestine right? I mean if I had to have a subtotal colectomy isnt one of the things they check is the motility in your small intestine? Isnt the lower right side the beginning of your large intestine? It wil be interesting to see what Wednesdays x-ray shows.. Thanks for your help ! P.S. Cathy thats scary about the hair loss..... I'm glad thats not a common side effect of this surgery.
Cathy, I forgot to ask, why did you get the sepsis? Is that common after undergoing a colectomy because residual stool can leak out during surgery and get in your bloodstream? Thanks
I got septic because right after my colectomy surgery my anastamosis site herniated through the omentum and perforated. It took 2 1/2 weeks for them to figure out what was going on and in the meantime I got septic (or sepsis-infection into the bloodstream). I was in total system failure, confused and disoriented, and in ICU before they figured it out. At one point they drained 3 liters of fluid out of my abdomen, which was obviously infected. They say I looked 6 months pregnant. My husband literally grabbed an intensivist (ICU specialist) by the shirt collar, explained that his wife was dying and no one could figure out what was wrong and would he please take a look at me and my records. He quickly noticed an air line on my CT scan that the radiologist and surgeon both missed, and within 3 hours I was back into surgery. I was given 2 units of blood and an ileostomy.
So, the long and short of it is that this was not a normal side effect of the surgery.
The hairloss was from prolonged malnutrition while I was "out of it".
Hi everyone, Thanks for the information Cathy. I went for my second x-ray this morning and all of the rings are still on the right side except for two of them that have slightly moved to the transverse colon. I am so miserable it is beyond words. I then went down the hall to my GI's office, (still trying to be rational and sane at this point) and talked to the nurse. She called me back and apparently he wants me to finish the x-ray on Friday so it can be "documented" . What the heck does THAT mean????? He already said that I failed the test and I wanted to shout I TOLD YOU SO..... but I held my self back. I will see him next wednesday to discuss what to do. So what exactly are my options here, because I know its going to be the same on Friday? I just dont think I can wait that long, I dont think I can even make it till Friday? What if my colon explodes? HELP PLEASE!!!!!!!!!!!
Thanks Annette, Did your Dr. tell you there were any other options other than the subtotal colectomy. You're scheduled for that in May right? Although if there were any other choices, I would have surely have tried them by now. I'm going to be on that x-ray table on Friday with a box of ducolax in my hand and a water bottle in the other. Thanks for your help.
I have to say I have been watching all of the posts with alot of attention and I have read every single one, even though I have not had any time to reply. I have to honestly say I am concerned with some people whos surgeons have been recommending the surgery. I would have tried ANYTHING to go to the bathroom normally and when I had my surgery there was not ONE medication that actually worked.
I have seen people who state that a certain medication actually works them... although the medication is not palatable. You really need to think about whether you can live with the complications that could result from this surgery... this is a life altering change and you have to also consider the implications that could occur later in life. I would never have had this surgery if there was ANY other to produce a BM besides an enema for me...
Sorry just had to put my two cents in! Cathy - it sure sounds like you are doing well girl! How is the practice doing? How is your husband? Daughter? Dont forget to take some time for yourself!
My medical update, they are theorizing that I have dysmotility of the small intestine as well, as I recently just had a small blockage which needs to be removed with multiple enemas and my stool frequency is not what they would expect. Additional testing was offered, but I refused at this time because I am still going every 2-3 days and I do not need medications and getting further testing will not change my prognosis or treatment... so thats where it is left right now!
Annette - thats wasnt my intention to make you leave... I was kinda cranky last night, but I did reread my post and I think it is just honest. This is a major surgery, ask your self... could you deal with it if you came out with an ostomy and had to live with that forever... there is about a 5 percent chance of that happening. ALOT of people on here have had complications, some major some minor... but they are definately out there. If Mag Citrate actually works for you, why dont you just take that medication on a weekly basis or something like that. Have you tried miralax?
My dysmotility was so severe that I had to be hospitalized to get prepped for the surgery... because NOTHING they had tried was working. In fact nothing did work... I ended up vomitting large amounts and had about a million enemas to get cleaned out for surgery... no prep was effective to make my colon produce results.
Then I misunderstood you, and just ignore me. I had 4 sitz marker tests and never had any kind of prep afterwards, so I did not understand you.
You know if this is the right decision for you, and it sounds like it is... so I am sorry. Guess perhaps I shouldnt post after working 16 hours... my mind isnt quite clear!
Emma, I didnt reply to you last night, because I wanted to reread what you wrote to make sure I was understanding you correctly. You said you are concerned that everyones surgeon is recommending this surgery. Well why did YOUR surgeon recommend this surgery? I still have all 24 of the rings in my colon and they havent moved. So did Annette. I have tried EVERY known medicine to help my situation and for a while they have worked, but over the years it has gotten less and less effective. I am to the point now where enemas go in , but they dont always come back out. I had to quit a job that I love and am litterly housebound due to this pain. I have NO quality of life whatsoever!!!!! I also dont think that drinking golightly or magnesium citrate weekly is any way to live.
What long term problems are you referring to as a result of this operation.? Please explain. From what I have read, people seem very happy to have been given their life back. I have read through all the posts on this entire forum and I do have to say it seems like a very tight knit group, that I'm not going to be able to break into no matter how hard I try. I havent had much feedback or support from anyone compared to the previous posts.
Annette, if you find another forum, please let me know.
Alright since you asked, here are the long term complications that can result.
First you could end up with an ileostomy for the rest of your life, or just for a short time while you recover. You could have a rupture of a anastomosis site resulting a severe systemic infections.
about 1/4 of all patients who have a major intestinal surgery will develop a small bowel obstruction at least once in the first year after their surgery. Thankfully, most of these clear with treatment and without surgery, but about 10% of people will have to have an additional surgery to fix this.
Dehydration, because your large intestine is responsible for reaborbing water, you are more susceptible to have more severe illness from any infection that causes nausea and vomitting. Unlike prior when you could get away with not drinking or eating for a day or two when you were sick, now if you do not have intake for more than a day or two you could get dehydrated. I have already had to be hospitalized twice both times for one night because of nausea and vomitting from an illness. All they did was give me IV fluids, but it was still obnoxious and an inconvenience for me.
And adhesions, every time that you have intra abdominal surgery, you run the risk of developing adhesions (which people on this list have had) and those adhesions can cause a bowel obstruction which may need to be surgically removed. Now you are looking at another section of your intestines that is not present, and looking at a section that was absorbing nutrients that no longer can do this.
Truthfully, the surgery has been a godsend for alot of people and I would repeat the surgery again in heartbeat, but I like many people had a complicated post surgical experience and have had some complications during the last year. I only posted my post to make those people new to this surgery aware of both the risks and benefits. Being in the health care field myself, I know that frequent surgeons like to cut.... and seem to forget to inform patients some of the negative outcomes for fear of scaring them. I personally feel that you should know the whole story. That being said, a recent study done in 2001 showed that 94% of patients are happy with the results of the surgery (and this includes people who had complications).
I think Emma is right and she wasn't trying to offend any of you. We are not trying to keep anyone out of this forum. I too tried everything I could before my surgery. If the transit test doesn't work, have they done the Gastrographin Enema? My GI did that first before he sent me to the Surgeon. I read up on everything I could get my hands on, but was really fortunate to have a friend who had this surgery when she was 18. She told me about everything. I have suffered chronic constipation my entire life. I must say I now, after having both my surgeries am doing much better. I still have a deep cavity though due to my infection in my incision. I am still having to go to the Wound Care Clinic every two weeks. I have lost some hair as well, not as bad as Cathy. I think the hair loss is also due to multiple surgeries. Please don't look for another forum. We will try to help as much as we possibly can. I have been reading the posts, but I too have been busy. I really think prayer is the only way you can be sure of having this surgery. I will try to help. Blessings, Sasha
I don't think that Emma was trying to offend anyone. I sort of agree that if I found something that honestly worked, even if it tasted horrible, I would have done that, as long as it was safe to do so on a routine basis.
Also, my colorectal surgeon DID NOT recommend the surgery to me. He merely gave me the facts, helped me to find other options and allowed me talk to other patients that had the surgery (some that had good experiences, others that had really bad experiences). The final decision was up to me.
I also never had any sort of prep before or after the marker study. Why exactly would you need one? The rings don't make the constipation worse.
I was one that had no complications after surgery. I'm very happy with my decision, but of course, I always wish that there had been something that even remotely worked for me, other than just not eating.
Also, interestingly enough, there is a new medication coming out, sometime in the Spring '06 used to treat chronic idiopathic constipation. If I hadn't already had my surgery, I think I would be waiting to see what this new med is all about. But, that is just my opinion. The name of the med escapes me right now, but I assure you, I read the study and clinical trials.
I think all of us here know what it is like to feel full of crap, literally. No one is trying to make light of anyone else's symptoms or individual story. It is terrible not having any sort of quality of life, not feeling comfortable, not feeling "good", ever. In the end, I think we all do what we feel is best for us, I can only hope that much care and thought goes into our decisions.
Hi Somer, The new medicine you are talking aout is called Renzapride (Amitiza). It will be available this spring, and I certainly plan on trying it before I have any surgery. But you cant help but wonder if it will eventually stop working like everything else. I never had any prep before my transit study... what he is giving me is magnesium citrate for after my last x-ray tomorrow to try to get things moving, along with 6 ducolax. But in the past, these things havent worked for me.
I am just very discouraged right now, let alone feeling miserable from being so backed up for the past 14 days (but whos counting). Can you tell me why your surgeon did not recommend the surgery? I just want to get as much information as I can. Thanks
