I have to say, we all have probably been through the same humiliating experience. Keep positive, this is fixable! I don't think you will have a problem with the stairs at all. You just need to go slow. My house also has a lot of stairs. Once up, I stayed there for about 2 1/2 weeks, Then made sure I went slowly up and down. You will be fine. Like we are seeing with Jou Jou, and myself, the dehiscing of the incision is the biggest inevitable worry, and the hardest part of this surgery to deal with. I put a call in to my colo-rectal surgeon this morning who I fired a couple weeks ago (I wasn't supposed to have to see him again) about my wound that has re-opened because I was chasing my 1 year old around and playing! So frustrating. I am in mild discomfort again, and think it needs to be cauterized again. It is bleeding with Bm's, and I am so tired of it! I actually want to have sex again, and I don't feel like I can until this is totally healed. Keep positive, Your surgery will be here before you know it.
Hugs and prayers,
I have not tackled the stairs yet. My kids' rooms upstairs are probably a disaster!! But I am letting it all go for awhile more. I do feel that I COULD go upstairs if necessary, taking it slow and gentle. I am finding that as I feel slowly better, I sometimes move less than gingerly. MISTAKE! I am trying to force myself into slow motion movements because the slightest stretching (and this can happen even just turning over in bed) is both painful and scary. Lisa, I think that is what finally prompted me to have this surgery; just one last, too many times of leaking bms. I am hopeful for the future, but I do not yet have full control over the bms. The sensation to go now comes on much stronger than before the surgery, and though I don't completely lose control before making it to the bathroom, there is usually a bit already there when I get to the toilet. I hope this is temporary!! I am definitely not ready to leave home and put anything to the test yet. I was hoping to make it to church for Easter, but I don't think I will try it. Between not being able to sit at all and not being in full control, I am home bound for awhile longer. I have another follow up appt this afternoon; I'll let you know how it goes. I must say, that I wasn't sure at all if I would make it through this ordeal just a short while ago. What a difference a week or two makes! You ladies needing this will get through it! One difference between my experience and Kelley's (I think I read this in one of her previous posts): this has been much more painful and limiting for me than recovering from childbirth, even the one that caused my problems. On the other hand, there is no little angel waking me every hour or chewing my nipples to bits! Let's keep talking; I know it is helpful for me! Kelley, how did you manage your periods during all this? The idea of using a tampon isn't very appealing (that whole perineal area is still traumatized), but neither is the idea of yucky discharge. Yuck, Yuck, Yuck! JJ
I just got over my second period. It has been gross to say the least. I have not done tampons at all. The discharge made the itching almost unbearable! My little open wound seems so much more irritated since having my period. It was not pleasant. My last period was very small, and late (I think the surgery and stress caused the delay) and I was still using the gauze between the cheeks at that time, so the discharge was wicked away more. This time, the moisture was a real problem. I changed the pad constantly to stay dry and even showered off several times during the day to relieve the itchiness. I made an appt with my ob/gyn for Wednesday to have him look everything over and give me some "sex" suggestions. I don't know why, but I feel much more comfortable with my OB talking about sex than the colo rectal surgeon. I am hoping he can help me and give some suggestions about the scar tissue. I almost want to have a couple stitches put in this little hole to make it go away I will let you know how things go. Please ask your dr. about the ribbon like stools for me also! Thanks
Okay Kelley, Clearly, the whole period thing will just have to be endured. My dr. said that he would like my bms to more normal in bulk. The words he used were a "soft, fluffy bm". "Fluffy??????" He suggested that I experiment with the amount of fiber supplement and my diet to increase the bulk, and he reassured me that if I have an increase in bulk, my rectum won't tear open when I pass it. Soooo, I'll start tomorrow with a change up in my diet; I don't just what yet...More later. JJ
I am new to the discussion, but the issues are not new to me. I had a sphincteroplasty 14 months ago in Feb 06. I delivered a beautiful baby boy 4 months before my surgery. I sustained a 4th degree tear, but I also had the horror of dealing with a rectal vaginal fistula too. In case you don't know what that is, it is a small tunnel (hole) between your rectum and vagina. So you pass stool and gas through the vagina. Not pleasant to say the least. I was devastated and depressed. The sphincteroplasty along with perineum reconstruction was supposed to heal the fistula and fix the defect in my external sphincter muscle. It has been a long road to healing, but I feel pretty much normal now. The fistula reoccured, but it is pretty small now. It still drives me crazy and I have to figure out next steps. As far as healing from the surgery, it took a good year. I also had the incision site break down and had an open wound. I thought too that it would never heal, but it did. Hang in there! I was very diligent about keeping the area clean by taking a bath a few times a day and keeping lots of gauze in there. My surgeon said because the area is so moist, it is hard to heal. I believe it took about 3 months to totally heal.
After surgery, I had lots of urgency problems too and even had
gas escape from time to time. I started biofeedback 7 months after surgery, although you can start a lot earlier than that. I would highly recommend this as it is just a tool to show you how to do kegels the correct way. It really helped make the muscle stronger and more flexible. The urgency has gotten alot better and I can hold my bm's pretty well. Although, I don't try to hold it like I did before the trauma. Just in the last week I have had gas escape for the first time in months, which is disheartening. I talked to my surgeon about this and she told me that my internal sphincter muscle still has a small defect and this could be why I have trouble with gas. Arghh! The gas is only a problem if it is a lot and preceeds a bowel movement.
My surgeon also told me not to worry so much about control because if I start to have a lot of problems that Sacral Nerve Stimulation is a promising new procedure that has low risk, is minimumly invasive, and has a high success rate. Has anyone's dr. mentioned this?
Overall, I am glad I had the surgery. It was difficult to get through and took a lot of patience to let my body heal at it's own rate. You'll get there too but you have to let time pass. I have been through 2 other surgeries (a c-section and a bowel resection in 1999) and I have learned that time is your best friend for mental as well as physical healing.
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