New to all this and need help!

[Law555]

I am new to all of this and have so many questions and concerns not even sure where to start. I had surgery on 11/20/2018 I have a urostomy pouch and a colostomy pouch. I came home on 11/28 and am having a difficult time of things. Since I came home I have tested positive for c-diff I am on an antibiotic and probiotics to try to clear it up. My first question is After having this type of surgery does your stomach cramp and feel bloated or are those the symptoms of c-diff? My next question is it normal for your ankles to swell? I’m also having a hard time with my urostomy pouch I can’t seem to get it to last longer than 2 days before it starts to leak and I have to change it. My appetite has finally started to pick back up and I can eat more than just a couple of bites at a time so I guess that’s a good thing. Please help confused and scared!

[To Dream a Dream]

Thank you for joining our discussion board. It is the place to be for anyone who has had your surgical experiences & questions. Please note the importance in having a good support network including your doctors & a nurse who specializes in ostomy care. Stomach cramping & swollen ankles are both symptoms that should be brought to the attention of your physicians immediately. Please call & they will advise you.

[Law555]

Thank you for your reply I am calling my family doctor and my oncologist Monday to update them on my symptoms and find out what I need to do. I am on antibiotics for the c-diff and was advised by the drugist to call my doctor if I don’t see any improvement in about 5 days so Monday I will have been on the antibiotic for the 5 days.

[To Dream a Dream]

Glad to learn of your decision to call. Also glad that your pharmacist is competent. They will serve as an important part of your post ostomy surgery team. If you feel you suddenly need immediate help, there is your hospital Emergency Department. My own physicians (GI etc,) also have someone from their group covering for after office hours to advise their patients by telephone. You may consider asking about that service when you next see your own doctor. It's an option that I've found comforting just to know it is available. Good to see you posting & hope you feel better soon.

[smashms]

it is completely normal to have pain and bloating for a few weeks after surgery, especially since you had both a colostomy and a urostomy done. you basically had 2 major operations at once. i would definitely give your surgeon a call if no improvement in symptoms. really by day 3 the antibiotics should have started working. so you should have started to see some response by then. remember if anything gets worse don't be afraid to go to the ER at the hospital your surgeon works out of so he can be called and consulted and come in to see you if necessary. your surgeon should be called today to advise about the swollen ankles as this is not something that is normal and should be looked at asap.

[Button]

Law:
You have certainly had an extensive and intensive surgery, now with a urostomy and colostomy.

You should expected ups and downs over the next several weeks to months. Gradual progress overall tempered with intermittent backslides. Look at measures of progress week to week, not day to day. It was a good 8 months until I felt fairly back to normal after my perforation with ileostomy.

The intestinal tract does not like to be manhandled and touched with surgery. It reacts by acting cantankerousky in the weeks following surgery. Cramps, retained gas, distension, watery diarrhea, urgency are all fairly common. The intestinal lumen also can remain inflamed and swollen, narrowing the internal passageway for digested food material to pass. Adhesions can also begin to tack down, which you may experience as tugging or catching sensations when you move.

Being mindful to eat soft, bland, low/no fiber foods is helpful. Keep portion sizes small. Eat small amounts more frequently as opposed to eating a large meal. You do not want to overwhelm the intestinal tract with a large volume of food.

C-Diff is anologous to nuclear-generated diarrhea. I am so sorry that you are having to contend with C-Diff. You are earning a medal of valor in making it through a case of C-Diff.

Yes, C-Diff is significantly contributing to the intensity of gas and bloating and intestinal distress that you are experiencing. It takes about 3-4 days to respond to initial antibiotic treatment. As with most health conditions, C-Diff lies on a spectrum from mild to serious in symptom presentation depending on the bacterial load/overgrowth. Giving a call to your physician seems wise if symptoms remain pronounced on Monday (tomorrow).

Distal dwelling of the ankles/feet and lower legs can be caused by electrolyte and blood and lympathic fluid/interstitial fluid shifts associated with your surgery and volumes of ostomy outputs. Edema can also be caused by inactivity of healing, sitting, and less generalized movement. You can discuss with your physician if wearing a pair of knee or thigh high light compression socks would be appropriate for you. They are also called TED hose and are similar to compression socks that people wear during long-haul airline flights. Also, get up and walk short distances during the day.

Any lower extremity/leg edema with acute accompanying shortness of breath should be evaluated immediately at an ER for possible pulmonary emboli.

I am glad that you found this forum and hope that it brings infuses you with support and kindness and good karma in your healing.
Karen

[wiseman]

Hi, I have both an ileostomy and a urostomy, for over ten years now. I would like to help with your question about leaking urostomy, as I had, and still sometimes have this problem. A lot can have to do with the type of products you use. I started using a seal under the wafer, or flange. First I tried a flat seal ring, then moved on to a convex seal ring from Hollister, I change my urostomy every three days, most times without a leak. My leaks were more frequent when I was active during the day, bending over, and sweating a lot during the day. The other cause of my leaks, are from night time, sleeping, and rolling over too far on my stomach, putting pressure on the filling urine bag, causing it to leak out the base plate, around the stoma. If you connect an overnight drainage bag to your urostomy pouch at bed time, the pouch will remain empty during the night, draining off into the larger drain bag. You need to find the best products that work for you, I've tried them all over the years, and found Hollister to be the best for me. I hope this information helps you to prevent leaks, using a seal ring under the base plate, and an overnight drainage bag should stop theses leaks.
I relise you are new, and may not understand some items I have mentioned, like the seal ring. I wasn't given much help when I left hospital, had to learn all this stuff myself, with a lot of help from the good people here on this forum.

[Law555]

Oh my goodness I thank you all so much for your responses and support! I ended up going to the ER on Sunday evening as I was having a dull pain in my chest and was too afraid to ignore it. I ended up being admitted as my potassium was way too low. The pain in my chest stopped by time I got there and it ended up being nothing. They checked for blood clots but, that was all fine. They did end up adding vancomycin to my antibiotic regime which has begun to help thicken my stool and change the color.

My white blood cell count kept going up though so yesterday a doctor came in and ran more tests to check for any serious life threatening infections they came back fine. She did find a urinary infection so she gave me an antibiotic IV. Today my white blood cell count was down. So this morning she discharged me as she said I would do better at home than staying in the hospital any longer risking getting something else since the hospital is full of sick people. I have an appointment with my family doctor next Friday and my oncologist/surgeon on Jan 2.

My ankles only swell if I’ve sat too long with my feet dangling instead of raised or if I’ve been on my feet for too long. So I’m going to try to find a happy medium for now. I am also going to start to push myself to be a little more active each day as sitting too much I know does not help with healing. I do still tire easily but, am sure with time and more movement will get better.

I do wear a night bag when I sleep. I have also begun to use the flange as one of you said, I call it putty lol that’s what it reminds me of. I build up the side and bottom since I tend to sink in there. I did get it to last for 3 days last week and was so excited I was beyond happy!

You have no idea how your responses have helped me. I am feeling a little more optimistic and realize I will have good and bad days for a while to come. I get so down sometimes because this all started way back in July with a surgery I had for yet another recurrence of my uterine cancer. I had developed a urinary tract infection then a fistula. We tried to repair the fistula in October but, it failed and I developed a rectal vaginal fistula. Which led me to where I am today. So I’m just so ready to start feeling better I guess I’m just expecting way too much of my body at this point, I keep trying to remind myself I have just had major surgery plus 2 other surgies which I still need to recover from internally as well. I was on antibiotics pretty much all summer so that is what led to the c-diff. Hopefully once I get the c-diff gone I can start on the uphill swing. I will keep y’all posted how things go and ask questions regarding these bags and maybe any other tips y’all can help with. It’s all trial and error at this point so I’m just trying to muddle thru as best I can!

Sorry my post is so long just thought a little background would help everyone know exactly where my head is, sometimes I’m not even sure where my head is at! Lol. I thank y’all again for the responses and tips. Merry Christmas to everyone!

[sassie]

Your post wasn't to long, I'm so happy you got things under control and seem to be feeling better, Welcome to the forum and never worry about over long post, it will always help someone, information is why we are all here, Best of luck and Merry Christmas to you as well...

sassie

[Button]

Law555:
Wow. You’ve been through a lot over the past few months. That type of repeated/accumulated stress can leave you depleted on many fronts. I am glad to see that you sought additional medical care over the weekend.

Honestly, it took about 8 months after my initial perforation and surgeries before I felt like a semblance of myself. Healing and recovery is a gradual process of advancing 2-3 steps, then retreating 1 step. Repeat.

You can purchase a pair of anti-embolism compression thigh-high or knee high at most pharmacies. Pressure is a mild 10-12 mg/Hg.

Feel free to reach out to this group, whatever your need may be. This forum was a life-line for me in my early days with an ostomy. I learned more here than from any ostomy nurse or home health clinician.
Karen

[Law555]

I am back in the hospital again, my stomach had gotten so bloated Friday I thought it was going to explode and I hadn’t been having any output in my colostomy bag which started to concern me. They have admitted me and my oncologist has been contacted. The CT-scan showed I did have a blockage above my colostomy. Currently they have inserted a tube thru my nose to my stomach to keep it drained. Hoping the blockage may repair itself. Has anyone ever experienced this before? Any input would be helpful to me at this point. It’s like my body has just completely turned on me and is letting me know it is not liking what we are doing to it!
Thank you,
Lou Ann

[To Dream a Dream]

I am sorry to learn you are back in the hospital, Lou Ann, but glad you are receiving the treatment & care you need. I know from experience that it does take time to recover from extensive surgery. Hopefully your current episode is just a 'bump' in the road & you will be responding in a more positive way soon. In the meanwhile, please rest & feel free to keep reaching out to us via the board. May you be blessed with a happy, healthier New Year.

[Law555]

Thank you To Dream a Dream for your response. I too am hoping this is just another bump in the road and I will start responding more positively very soon. May you be blessed with a happy healthy new year as well!
Happy New Year to all!
Lou Ann

[Button]

Law55:
Sorry to hear that you are in the hospital with a small bowel obstructions and NG tube.

I just want to send some positive karma and best wishes your direction.
Karen

[Diane C]

I have been reading and also am sending you waves of healing energy and good wishes, esp as tomorrow is Jan. 1. So sorry about the blockage but you're in the right place to get it taken care of. Hoping the days that follow are healthier.

I'll concur with what's been written to date. I had major surgery on Nov. 1. My colostomy was removed as well as a hernia and more -- my entire colon -- via open surgery and I now have an ileostomy. For reasons I won't go into now, I also had my rectum removed.

The healing of the surgical wounds seemed to heal quite fast -- still ongoing but doing well with daily washing, changing of dressings/bandages, and use of silver dressing in sutures in what was my rectum. However, I remain quite bloated and do not have a blockage. In the last week, the bloating has been somewhat painful and I'll be seeing the doctor later in January but I have a sense this is normal and things literally go up and down. Karen has informed me and others about this and her words about eating small meals and hydration are perfect. I find when I am really hydrated I feel so much better. I definitely need to be walking more and doing the exercises I did with the PT who came to my home after surgery.

I went to a very small dinner party on Xmas... oh, boy. I was already distended and ate too much. Had an accident which no one noticed, cleaned as best as possible, but couldn't shower til midnite. So, now, I'm dealing with soreness on my belly from the output from my ileostomy and struggling to keep the ostomy appliance on. I know it'll heal but it takes time -- which isn't fun. Yes, colostomates have this issue but not the acidity in the output is not as bad.

You mentioned swelling. My right foot, ankle, and leg started to swell well before surgery and, at times, I'd awake with a sharp pain in my leg. I had many tests and no vascular or other problem was detected. (I do have a torn tendon in my right foot which I do not feel and that doesn't need attention until or when it hurts... weird but that's what the doctors say and there's now a regenerative system that helps one to avoid surgery.) A vein specialist diagnosed lymphedema -- maybe due to the lack of any other determination? Sooo, I waited until after surgery and now have what looks like an astronaut's outfit - there are wide "pants" with lots of velcro that attach to a monitor with big coils that helps to keep the lymphatic system active by lying down and wearing this gear for 1 hour. Many folks use it at night, set it for 1 hour, konk out, and the system automatically turns off. (Not a great idea for ileostomates in case of leakage -- the "outfit" can't be washed so it needs special storage. It does seem to relax me and I tend to sleep -- but set an alarm to awake.) There's also an abdominal piece to wrap around the torso but I'm holding off on that until I'm better healed from surgery although I wonder if it would help with the bloating -- will ask my doctor. For more info on lymphdema which is unrelated to the ostomy, see https://www.tactilemedical.com. This is NOT your primary or secondary concern -- so it's for reading later. To be candid, I don't know if this is the correct diagnosis. Karen had mentioned puffy ankles due to a hernia and I do think that's likely as my hernia was large -- but doctors denied it. I was fortunate in that my insurance but not Medicare paid for this Tactile system and I'll let you know the results.

Talk about a long post! I hope you and everyone are doing as well as possible.Keep us posted.

Wishing everyone as healthy a year as you can take! And now, I'm late to watch a dvd with my mom who's 101!

Diane C.
2000 Malone Appendiceal Colon Enema (MACE) procedure for chronic constipation due to dysfunctional anal muscles/non-relaxing puberactalis muscle
2002 Colostomy
2015 Surgery for peristomal hernia and abscess near sigmoid colon
2018 Colon and rectum removal/creation of ileostomy