Thank you for your input and sharing your story. It has been 11 weeks for me since my surgery. I still have a small wound present that I am trying to get healed up. My bm's are pretty much normal (for me) now. They are painfree, and I have had absolutely no leakage problems since about 2 weeks post op. I have tested myself pretty extensively, and am very happy with my results. I do have occasional gas issues, but after what I have been through, it really doesn't bother me. I have been finding lately from others on this board, and another person that I met, that there success has not been as good as mine. I had a huge defect to begin with (over 1/2 of my internal and external muscle was completely torn away, plus unilateral nerve damage) To say the least, I am thrilled with my results and hope others can gain the same success that I have. This is just not a worry for me any longer. My dr. said that there are artificial sphincters being made right now, and a lot of cutting edge technology in this field. They are actually growing sphincters in petri dishes! I hope to never have to deal with this issue again, but if I do, it is nice to know there may be better, newer procedures out there. This is definitely been a tough recovery period. (my family and friends say that I am in no way a good judge of pain tolerance--I had 3 children without a drop of pain meds and no epidural) When I do complain, my family knows it is pretty bad. I guess living with a daily, chronic, painful disease doesn't help) (Lupus) I have just learned to deal with my daily pain. I did take a lot of painkillers during this recovery. I feel like I lived on Percoset for 2 mos! Hang in there everyone!
Where did you have your surgery? Which Dr did you use and did you like them? I am scheduled for my surgery on May 21 in Minneapolis in MN with Dr. Mellgren at the Pelvic Floor Center. Do you know anything about this facility or Dr in your area?
I had my tests (ultrasound and mamometry) last Tuesday and needless to say, I have yet to hear from my Dr. to go over the test results. I am very anxious and frustrated and I want to see what needs to be done. Am I being too impatient? I know things take time, but it has been a week. I called last Thursday and they said they would give my message to her nurse, and I still have not had a call back.
Kelley and JJ,
It is good to hear you are both getting better. It has been quite a recovery process and I have to say I am scared to death, but I also know I can't live with this the rest of my life. I am only 41 with two great boys and a husband, and I am way to young to be bothered by this.
One more question. Did you lose alot of weight in the beginning with the liquid diet and your food intake?
Thanks girls for listening. Hopefully I will have some more news soon.
Good to hear you had your tests done. I had my results right after the tests that day with a consultation. I don't know why they would make you wait so long. But i know what it is like to wait for such a thing as medical tests. Hang in there. I would call again...but that is me. I call until I get the results. I am very impatient. I hope your results are positive and shed light on your issues. Let us know what they say.
Declansmom- I went to the Pelvic Floor Institute too. I was very impressed. It was stared by Dr. Susan Parker, but she is no longer there. They were very patient and caring and extremely thorough. My surgeon was Dr. Spencer, who was fabulous. I don't know Dr. Mellgren, but he is part of the same group of surgeons as Dr. Spencer and they are all excellent. I would stay away from Dr. Goldberg because he has a very rough bedside manner. I just started seeing Dr. Ann Lowry because of the fistula problem and she comes very highly recommend by a few professionals that I have talked to. You are in good hands there. When you go in for your tests, there will be a Dr. there to let you know some of the results and for a consultation. I talked to Dr. Parker, but like I said she is no longer there. They gave me plenty of time for discussion. Ask lots of questions!
Thank you so much for replying. I had my tests done there in Feb and loved them compared to the healthcare here in KC. I am traveling up there in May again to have them do the surgery. I feel so much better hearing from you and knowing i made the right decision to go up there again for surgery. I was second guessing myself since it will be an 8 hour drive, but after hearing from everyone on this site, it is better to have it done right the first time.
Any advice for when I go? I will see Dr Mellgren and Dr Spencer.
declansmom- sorry, I didn't realize you already had the tests done. It 's hard to write a response when you can't see the messages. I had my surgery at North Memorial Hospital, not at the Pelvic Floor Center. And from what I understand you wouldn't have your surgery there either, but at the hospital where your dr. practices. I believe dr. Mellgren is at Fairview Riverside Hospital. I delivered my first baby there. It was a good hospital. One thing else I'd like to add is that the practice your dr. is with is active in cutting edge research in incontinece. They were, I believe, the first group to do a comprehensive research study using the Artificial Sphincter.
Yes, my colorectal Dr here said she would not do the surgery and wanted me to go back to them to do it since they are on cutting edge and much more experienced. You have really put my nerves to rest on my decision to go to MN. Thank you!! It is good to hear you had a successful surgery. I will go to Fairview to have the surgery and am more at ease now. My next step is finding a hotel for my family.
You absolutely made the right decision and you have a good dr. that put pride aside and referred you to the right dr. I don't know hotels very well around there. I am glad I could help a little. I haven't spoken to anyone about these problems except my family. It feels good to offer some help.
Robyns686, thanks for contributing. It is good to hear from someone who has a bit longer view of this recovery. My own surgery was just 2 1/2 weeks ago. Already, I am convinced that I will actually live, not die, from this procedure. Ha, ha. My biggest concerns are the open wound and whether I will ever be fully continent. Yesterday, the dr. said it is still too soon to know whether my control will improve or not. Did you find that the control was something that gradually improved or was it an up and down kind of progress? You mentioned that the recovery was a good year for you. What do you think was the most lingering side effects? (What might I be dealing with after the initial wound healing?) Also, Kelley & Robyn, did you ever have repeat tests of any sort after the surgery to test function or muscle integrity? I have read just a snip online about Sacral Nerve Stimulation, but my dr. never mentioned it at all. Can this be effective for patients with pudendal nerve damage? My tests revealed unilateral nerve damage with also a delay in functioning side. I am trying not to be anxious or overly introspective, but I must admit that I continue to ask myself, am I going to be better or worse after this? Kelley, of your acquaintances that have not had good results, what have been their complaints? Lisa, it sounds like you are in good hands; I'm so glad that you feel reassured; it is important to have confidence in your dr. Mindy, hang in there; I'm sure you know that you must be your own advocate in getting the care (or test results) you need. My mantra: time is my friend, all wounds heal. JJ
I am so glad you found someone who can help put you at ease about your upcoming surgery decision. It sounds like you have made the right choice, and I wish you the best.
I am not a big person to begin with (118 pounds) In the 2 weeks prior to my surgery, I underwent 3 full bowel preps with golytly for the tests, colonoscopy, and then before my surgery so I lost a bit of weight before the surgery. These preps made me very weak, and dropped my blood pressure very low. All this combined with the no eating caused me to drop a lot of weight fast. I weighed about 110 before surgery, got down to a scary 103 after, and as soon as I started eating a regular diet, got back to my 120. I had to schedule my surgery and all the tests within a very short time period because I had the availability of help from my out of state family during that time. (It probably was not ideal to have 3 bowel preps within 1 1/2 weeks!!) My surgeon was wonderful and rushed all the results from the tests and fit me in immediately to accommodate my situation. I found out how bad my tear was and how low my pressures were from the manometry immediately while the tests were being done. Hang in there, keep pushing for your results.
My surgeon said that it was pointless to have tests done after if I wasn't having any problems. I sort of wanted to know if everything was fixed, but he said they were expensive and the insurance probably wouldn't cover the cost after surgery. He said the true test was my own personal control. Between the colonoscopy and the tests, mine were over $20,000. Glad I only had to pay $15 I don't even want to know how much the hospital stay and surgery was! I am actually feeling better today. The dr. told me to go back to soaking in the tub to help close up my wound. The water sure does help! It is looking a little better, and definitly feeling better now. I go to the Ob/gyn tomorrow. Take care
Thanks so much for your response. I too am not very big (115 pds) so I was alittle concerned about the weight loss and the weakness factor. I am sure through it all you will survive. I called again this morning and I told them I called last Thursday and nobody has called me back. She said she would give the message to the nurse to call. But nothing! I have my appt. with the other Dr. next Wednesday and I want to take my test results with me. I don't know what else I can do. I really think it is kinda rude to leave someone hanging. I am very frustrated. I am so glad you are doing so good, it helps to talk to someone.
I think of you and your ecovery often and I know you are through the worst of it. I am so thankful for this board and all the ladies on it. Continue to be strong, I know you will.
I'll add my thoughts to Kelley's about the weight. At 105, I don't have a lot of pounds to spare, and like you, was worried about possible weight loss. I spoke to another patient who did indeed lose about 15 pounds immediately following surgery. That was not my experience. Although I have not actually stepped on a scale, I think my weight is about the same at this point. My clothes fit the same way. Any loss in the days following surgery must have been minimal and I'm sure I have rebounded. My diet progression was quicker than Kelley's, and I'm sure that will be a factor for anyone having this done. My blood pressure was also VERY low while in the hospital, but other than a little more volume in the IV, I didn't require any intervention. By discharge day (7 days post op), it had returned to normal. I was also pretty concerned about being NPO for so many days; I thought it would be hard. It was easy! Food was about the last thing from my mind in those 4 days following surgery. I was never hungry. In fact, when I finally got cleared for a clear liquid diet, I didn't even want anything. Being able to have ice water did feel nice to clear my throat. To summarize, I wouldn't worry about the lack of food and weight loss. You will do fine. One thing that I haven't read anything about in this thread is the very unpleasant prep before surgery. I will tell you my experience so that maybe you will be better prepared. I was admitted the morning before the scheduled surgery so that I could have the "clean out" in the hospital. Trying to drink an entire gallon of golytely (should be called goheavily!) was an ordeal. After awhile it made me nauseated, but I kept trying to force it in. Nothing happened for many hours, but when it finally did, yikes! Hour followed hour of URGENT bms. I often couldn't make it the 5 feet from bed to toilet. I must have soiled 6-8 pairs of undies plus numerous gowns. I tried to protect my clothes and bed by building a protective barrier of pads, paper towels, tp tucked in my cheeks. It sometimes worked and sometimes didn't. On several occasions, I was mopping feces off the floor, toilet, my legs. If I had had some depends, I would have happily used them to prevent the mess and distress. I was in tears. Another mistake that I made was allowing the IV to be placed in my right hand. Being right handed, I had to use the IV hand to do my (very frequent) personal cleaning. What a mess! On more than one occasion, I got feces on the IV tubing, although I was being careful. I finally learned to drape the tubing around the back of the neck to keep it from falling into the pathway of my hand movements. This helped some, but try to insist that the IV be placed on your non-dominant side. Once that IV had to be changed, I insisted that the IV's go on my left side. Keep the IV pole between you and the bathroom so that you don't use valuable time trying to get it in position. By the time that the golytely started working, I had sent my husband and kids home. For me, it was easier to deal with this bowel prep without any company. I will also suggest using Desitin or some kind of skin cream to prevent chafing down there. You don't need to go into surgery with an already chafed area. When is your surgery scheduled?
Kelley, your posts continue to encourage me. Good luck with the Ob/Gyn. I hope she/he can give you the kind of support and guidance you need to get back in action! Good luck with that, too. I know that I will be feeling anxious about it once my healing is much further along. It is a long way off for me, still. Both of my drs' patients that I spoke to before the surgery did tell me that they were able to be fully functioning in that regard.
Wow, thanks for all the great info. I too am only 110 lbs and was curious about the weightloss.
Were you admitted the day before to do bowel prep? My surgery is scheduled for a Monday morning. As far as I know, I will do my bowel prep the night before and then go to the hospital.
Have you had to do a bowel prep for a colonoscopy before? How would you compare that? I had to do a prep for my colonscopy and that was an interesting experience. I never thought my bowels would become clear liquid. Is that what you expereinced too?
Lisa, I have never had a colonoscopy, so I cannot compare. All of my diagnostic tests just required enemas. After all the golytely induced bms, I also had 2-3 enemas the morning of the surgery. The results after all that were mostly clear liquid bms with tiny flecks of stool still present. The upside of all the prep was not having a bm for several days following surgery and the stinky smell typical of bm was absent until just yesterday! If I had to repeat the golytely experience, I would invest in some disposable undies. Maybe I'm silly, but the last thing I wanted to do was clean the hospital floor and toilet and have poop running down my legs. The induced bm's seemed to happen in waves, so there would be some time in between the waves when I could recover my composure and try to get ready for the next wave. All the best to you as you gather your information and make preparations. JJ
Here is my bowel prep info. I was not admitted to the hospital until 2 hours before my scheduled surgery. I did the golytly bowel prep with dulcolax pills starting the night before the procedure. My dad has had many colonoscopy's so he pretty much gave me the lowdown. I pretty much just sat on the toilet for 2 hours with magazines, books and a stool with my wonderful drink on it. I drank with a straw with my nose plugged and was still nauseated. I didn't leave the toilet until I ran clear. I did not have any messy issues because I was on the toilet the whole time. I wore a pad that night and protected my mattress, and had some small what I called "liquid episodes" for a couple hours the next morning. I had the same thing happen with my colonoscopy except I did the 26 pills for prep instead. I tolerated taking the pills better, but it dragged on for hours and hours. I didn't start going for 3 hours and then was literally on the toilet still at 2 am and I started at 7 pm!! I hated the taste of the gallon golytely, but the effects were quicker and when I was done, I was done. It didn't drag on like the others. I also did the same prep for my tests. I became very weak and was definitly dehydrated by the time I got to the hospital. I was dizzy, had a migraine, and could barely walk. They started an IV and I felt better. My preps were all within 1 1/2 weeks and that is why I was so week. Lisa, If you had the prep for the colonscopy, it will be the same. I also think my surgery cleanout was a little bit easier because of the 2 prior preps. There wasn't much left in there to begin with. I used wet toilet wipes to prevent chaffing. I was awfully chaffed for the colonscopy, the nurses commented how badly they felt for me. The surgery prep was better because I was more careful with wiping. You will do fine.
It sounds like your bowel prep was a little quicker than mine, and you were probably better prepared from your previous experiences. I hope that Lisa and Mindy's experiences are closer to yours than mine, but it is helpful to know the possibilities of both. The horrible golytely had me going from about 7 pm through most of the night. I don't think I could have stayed on the toilet the whole time. How is the wound healing going for you? And are you still sensitive along the scarring? All the best, JJ
Well today was NOT the best day for me. I saw my ob/gyn and he did a thorough vaginal and rectal exam to see how everything was healing, and why I may be having the pain issues. I did not know this, but I had a huge incision with stitches in my vagina! I don't know why I did not know this, but anyway, there were some "bumps" in there that turned out to be a buried stitch that was inflamed. He un-buried it. He said the scar tissue just takes time to heal. He also did a rectal exam (it was not painful) and was very impressed with how tight I am. He did a lot of silver nitrate cautery on my wound and I have to go back to see him in 2 weeks. He said he would continue this until it is completely healed. That was exactly what I wanted to hear! My surgeon is so busy that I sit in the waiting room for 1 1/2 to 2 hours before every appt, so I am going to continue going to the ob/gym to have this followed. He at least is offering to help get it healed up. He numbed me up a bit, but it hurt like @#$!! It is still very sore now. I don't remember it hurting like this when the surgeon did it, but today, he was much more aggressive. He wanted to get all "new" tissue so it would heal better. Now, the reason I am so down....I got home, picked up my daughter from school, and went to the rest room to find you know what in the undies! I am sooooo discouraged! Here I was, telling everyone (including my dr. today) that I have been 100% fully continent! And now this! I am so bummed, and don't know if it has anything to do with the exam today or not. It wasn't a full blown bm, but that tapioca smear that we all know. I feel so depressed right now I could cry. I hope that since this is the only time it has happened that it had something to do with the dr. visit. I usually empty my bowels in the morning around 9am or so and my dr. appt was at 8am and I couldn't go until about noon. Maybe I just need to better about sticking to my routine. I wanted to empty out before the appt, but when you don't have to , what do you do???? Anyway, thanks for listening everyone--I hope I haven't ruined everyone's day with my news.
JouJou - I would say that control was a steady progress and that it seemed like biofeedback really helped. I never really had any accidents after my surgery except for the very occasional gas leakages. One of the longest lingering effects is the fear, which has been the hardest to overcome. I am getting there though. It's dealing with my own anxieties and fears about the future. Also, I have a cosmetic issue with the rectal area. I have lots of extra skin around my rectum that I didn't have before. I believe the doctors would call them skin tags. Not a pleasant sight and it makes me insecure during sex. Everyone is different though so that may not occur for others. I believe Sacral Nerve Stimulation is not currently FDA approved and is going through safety testing and long term testing. It is currently being used to treat urinary incontinence. I believe it helps even in the case of pudendal nerve damage and it seems to work best if you have an intact sphincter, which is what a sphincteroplasty would do for you. Most of the studies I have read about spincteroplasty surgery is that it is pretty rare that women are worse off than before the surgery. Most see an improvement that ranges from fair to excellent with most in the good range. The Cleveland Clinic did a long term study and that is what they found. The success rate does correlate however with the skill of the surgeon. I repeated an ultrasound because of the fistula and that is when I found out that the internal muscle still had a defect. From what I understand, it is a bit harder to fix the internal muscle because it is much thinner and can't hold sutures as well. I would ask your dr about that hough becuase I am not expert. The more I learn the less I understand.
Hi Kelley, I am so sorry that you have had this experience today. I guess we can see from Robyns686, besides our own first hand knowledge, that we will live with a certain amount of uncertainty and fear for awhile. However, it seems that you could almost certainly blame your visit to the ob/gyn for the accident today. Besides being probed in a variety of ways and having your tissue aggressively manipulated, you also were numbed in that area. I am hoping that you see an immediate return to your previous good track record of complete continence. I am with you when you say, what do you do when you don't have to go? It would be so convenient to choose when to empty the bowels, but my system has never worked that way, before or after surgery. At least he is giving you some help for the remaining areas to be healed. Aren't you glad you had this appt before returning to sex? Good luck and keep us posted on your progress.
Robyns686, thank you for your continued input. It is good to know that most women will see at least some improvement rather than being worse than before. I did have some biofeedback before the surgery and will likely have another session or two once the wound is healed. I'll admit that the biofeedback did not seem to help at all before, but I did have a very large defect of both internal and external sphincters. Perhaps now that they have been mended, the biofeedback will help more. I'm not sure that I really still know how to do a correct Kegel. At what point in your recovery did you have biofeedback?
I, too, have some skin tags (knobs of scar tissue) around my anus and it looks like there will be knobby scar on the perineum, too. I don't think the appearance is too horrible, but the knobs make it difficult to completely clean after a bm. Although I am far from any such action, my surgeon did say that there were "cosmetic" remedies that could be considered at a later date. Has that been a consideration for you?
Again, I am very happy that this thread/board remains active. It is so helpful.