Update After Nov 1 Rectum Removal/Surgical Wound

[Diane C]

Hi everyone,

About 2.5 wks ago, I saw the Assistant Surgeon who helped with my Nov 1 ileostomy surgery. Most of you know about this extensive surgery. I also had my rectum and anus removed due to diversion colitis (which I can explain later if you're unfamiliar with that -- or someone else can -- sorry -- must leave in 10 minutes so am posting quickly).

He thought I was FINE but I reminded him (again) that I was experiencing a small bit of bleeding where the rectum was excised. A tiny surgical wound was still there. He had prescribed a dressing -- Aquacel with silver -- and I was inserting that into the wound area. This dressing feels like felt -- it's dry. It was easy for me to insert. Slight bleeding continued.

At the time, I was having some leakage issues (now solved for the time being -- see my post under New Ostomy Products) so went to the ostomy and wound clinic at the hospital. I had found solutions to the leakage BUT this wound where my rectum had been was more painful. The nurse examined me and unfortunately that small wound had opened up. It had become 2" or so deep. Bleeding but no other output. She immediately contacted a home health nurse who's been very good. (I had already had home health care for 4 wks involving a nurse, PT, and an aide. Grateful I have good insurance and Medicare!)

This nurse has come twice and will continue for probably 3 wks or until this wound closes up and heals well. I know some of you had your rectums removed and required a drain. I am hoping to avoid that and my surgeon indicated this probably would be unnecessary as I hadn't had chemo or radiation, etc.

This nurse is inserting a much larger piece of dressing as the wound increased in size and I can't reach to do this myself or easily see it. She's coming 3x/wk to ensure the dressing in in place. I can deal with the pain. But that dressing must stay on the wound. We've tried some makeshift coverings over it but none's been super great. I'm researching online and Convatec does have a coveriing to put over a dressing and wound. At the, uh, UNskilled nursing care facility I stayed after surgery, nurses had rather large, "plastic" coverings which went over my abdominal wounds and I saw one or two online. Can any of you suggest such a productfor a small wound that would go in the "posterior" area -- near the "butt crack?" The wound is in a difficult place since it's hard to walk (and pee -- although I bend forward very far when I do to avoid splashing) -- and I can't shower or the dressing/packing may come off. Frankly, I'm giving myself "sponge baths" outside the tub although maybe I can just face the showerhead and try to avoid shower water getting on. the area where my rectum used to be.

I'd think the nurse would know what product to get but this surgery is somewhat unusual. Many thanks for any ideas. I sure hope the wound heals within 3-4 wks. I was doing quite well and had hoped to start exercising and even swing dancing-- but can't do that easily right now.

Diane C.
2000 MACE Procedure
2002 Colostomy
2018 Removal of Colostomy, MACE Tube, Hernia; New Ileostomy

[To Dream a Dream]

Have you contacted a Wound Ostomy Continency Nurse? Often it takes a specialist in the field to deal with a certain problem. Glad you are on the road to recovery & doing well.

[Jono]

Too many cooks spoil the broth, but lots of patients have this difficulty following an Abdomino-Perineal Resection (APR) because once the rectum is removed, there is a big space that doesn't have anything in it. Eventually, the body can fill and contract the space by "granulating", that is, producing a disorganized, blood-vessel and fibroblast-rich tissue which ultimately helps to produce a scar, but it's rare that they just heal up in a few weeks, if they break down postoperatively.
You might ask about using Calcium Alginate rather than Aquacel, as the Alginate absorbs a lot more liquid and turns into a harmless, bacteriostatic gel when it no longer has the capacity to absorb more fluid. The aquacel (which is made of processed Cellulose) will continue to have structural integrity even when it's not doing any good as a moisture absorber.
A lot of patients in your situation use a panty liner or Maxi-pad to collect drainage. The wound is certainly not sterile, so the best that you can do is to keep it clean, and make sure that anything that's trying to find its way out, can.
Again, make sure that you ask your doctor before you change anything, because there's nothing more frustrating than having multiple people trying to run the same show.
Good luck!

Jono

[Diane C]

Thanks so much, Jono,

Appreciate the info. Disappointed because I was healing so well after Nov 1 and only on Extra-Strength Tylenol -- except for this tiny wound where the rectum was and the surgeon assured me it'd heal just fine on its own. It still has not.

I visited the wound care clinic yesterday because the wound doesn't seem to be improving. It's actually 4 cm deep now and about 1.75 cm across. Just as the (new) and skilled home health nurse has been doing, after measuring it and assuring it was clean, the wound care nurses did apply Aquacel dressing with silver and collagen. Then they used Prisma and Mepolex Border Sacrum covering -- which was great until early evening. It began rolling up and was itchy. I was up all night -- between the itch caused by that and the burning from my ileo (which will be resolved -- hate to waste a wafer but must reapply -- had used the powder and non-sting spray but still feel the sting and itchiness) and I had to cut down the Brava strips I'd framed the barrier with which is unusual since those Brava products usually work so well for me. So today, I'm not a super happy camper -- expected issues with the stoma (Immodium has helped so much with the almost constant flow and I encountered no blockages whatsoever -- can probably even increase the dosage).

At the wound care clinic -- and these nurses are VERY good -- they told me to consume 100-125 grams of protein a day -- "or enough until it falls out of my ears." Frankly, I had drastically increased protein as I knew it heals the skin -- hormone-free beef, chicken, fish, eggs (I have no cholesterol issues), cooking in bone broth and had bought collagen powder but hadn't used the latter. With the cold, slight snow, and darkness, I lost my appetite and hadn't been consuming so much -- and was sleepy. They told me to EAT (and hydrate) regardless of the weather, add the collagen powder, and also to buy a protein powder, Juven, and take 2 packets daily. Yikes -- costly! I'll use the plain kind in juice without extra sweeteners rather than the flavored with sugar. Sellers at Amazon sell it for a less expensive price than Amazon and my local Walgreens carries it and is holding it for me today. I'd fallen off the boat with my usual supplements of C, zinc, and more with this lousy weather -- so definitely back to them! I hope all this will help. I am very mobile -- nurses said I can even swing dance if I do no splits (NOT me!) so I shouldn't complain and am eager for this healing to be history. It feels so moist all the time where the rectum used to be. The surgeons and nurses have always recommended air drying and I'm honestly unsure that's possible.

Do NOT want bacteria getting in because the wound care nurses told me that the surgeon really can't stitch it up again because of fear of infection because of something gettin in as you explained... so I follow orders and wait. I know others up here who dealt with cancer had to face far more difficult issues like insertion of drains.

Very cool that you are a pilot! A transplant surgeon (and swing dance teacher) who flies has been taking the most gorgeous photos of our world. There is much to be grateful for but it helps to have good health to enjoy it. Grateful for all the info from you and others.

Diane C
2000 MACE due to non-relaxing puberactalis, constipation, distention
2002 Colostomy
2018 Ileostomy and removal of MACE, Colostomy, hernia, entire rectum due to diversion colitis

[Diane C]

Hi all,

The above looks overwhelming to read and is really only for those who had to deal with rctal surgery. So skip it! Many of you helped me transition to an ileostomy from my 2002 colostomy this past November and also knew I had my rectum/anus removed due to diversion colitis. A big relief not to deal with the mucous and blood daily from my posterior! I'm glad that washing out the rectal area works for many of you but I don't miss the cramps that accompanied the discharge.

HOWEVER -- I have been dealing with a surgical wound for almost 2 months. At the supposedly last visit to my surgeon in early January, he said, "That's it! Live your life! No need for more appointments!" I disagreed as I still had a TINY surgical wound in my rectum where the surgery was closed up. I learned how to apply Aquacel dressing with silver and it was healing but still bleeding a very small amount. I asked the surgeon for another prescription for this dressing to ensure it closed up well. He refused and said, "It's healing great. Just keep it clean, let it air dry, and it will be fine." I asked again -- and he said all was AOK as is.

Since then that tiny wound enlarged and has became 5 cm deep. I've visited our outstanding wound + ostomy clinic at the hospital twice and go back Monday and a super home health nurse visits 3x/wk as I can no longer insert the dressing deep enough or see it. The surgeon says, "I create surgical wounds. You and the nurses heal them." Sadly, this is true but I did call yesterday to tell him to see my record although he sees far sicker patients than I. I've already been in the hospital 10 days, spent 2 wks at an UNskilled nursing care facility that made the news for inappropriate care, and was lucky that Medicare and insurance paid for a month of home health care with PT, aide, and nurse when this wound was tiny. And now another nurse comes for 30 min every other day to apply the dressing after I clean the wound. And tinkers with ways to keep all this in place (which was what the first post above was about).

The wound clinic called Tuesday and ordered antibiotics as this wound now has a small Staph infection. The wound care nurses told me to consume 125 g of protein daily or "enough til it falls out of my ears." Plus, they advised taking the protein supplement, Juven (very costly at Amazon + Walgreens), as protein and collagen help heal skin + wounds. The healthier kind has no sugar or dye -- you mix in water (ugh) or juice to which I add water. There's also flavored Juven which is less healthy but convenient. Feel as though I am stuffed with liquid and my appetite is not great but pushing in the protein. I think this Juven and protein (which has fat) has added to the gas one always gets after surgery. Distended like before!

The good news is that the nurse thinks the skin is "tightening" although the dimensions of the wound are the same. Does not hurt -- the protective covering and sticky adhesive on my posterior are painful to keep all this in place. Xing fingers the wound clinic has good news on Monday.

Some of you with cancer needed drains in your rectum so I'm lucky and need patience. I've had a very small amount of seepage and blood from the wound.

Lesson: we know our bodies although doctors have training + wisdom. If you feel 100% about something, be more than emphatic. Maybe the wound would have occurred anyway.

A question for those who had rectums removed. The sutures where the rectum was feel as though the skin is "pulling" and could rip. It's not an area one can massage to alleviate scar tissue. Any thoughts?

I prob should change the header of this post. Sorry for length again!

Diane C

2000 MACE
2002 Colostomy due to inherited non-relaxing puberactalis and anal muscles resulting in chronic constipation
2018 Removal of Colostomy, MACE, Rectum/Anus; Ileostomy

[To Dream a Dream]

Diane: I am so sorry you are going thru all of this. I have no quick solutions having had my anus/rectum removed in 1977 & they had inserted tubing with a Hemovac drainage collection device directly into the incision. Have no knowledge of it still being used today. It did seem to take awhile before things felt better.

I do find it very disheartening that today's surgeons can seem as abrupt & callous as they could be back in the dark ages of my own youth. Despite fully appreciating & having even loved more than a few, I deeply regret the use of brittle trite retorts to distance themselves from an emotionally painful situation. There must be a better way.

At this point your wound care team does present as your best resource & hopefully each day post-op will strengthen your own immune system. Increasing your protein intake should be a big advantage.

And having an ileostomy now, you have probably been informed of the need for adequate fluid & electrolyte balance. You might find it helpful to review this with your nursing team. Your body has been through a lot. It requires time & nutritional support under the direction of caring professionals.

[lms1]

Hi Diane,

I am still struggling with a non healing surgical wound from June 2018 but it’s in a much better place, my abdomen. I have an added issue associated with my malabsorption associated with my 5 feet of remaining small intestine. My surgeon is also a perpetual optimist about the wound healing. I am eating 130-150 grams of protein a day, 2 packages of Juven, and collagen. I can’t take high doses of Vitamin C because of the high risk of kidney stones due to my intestinal configuration but please do, if you are able. Once I got my nutritional numbers up I am starting to see some progress. So glad you have an outpatient wound clinic as the nearest for me is 90 miles away. I am currently seeing a home health wound nurse.

Good luck to you. I understand the frustrations associated with wound healing.

Linda

[Button]

Diane:
The healing of the perianal wound can be a l-o-n-g process. Several months. A few steps forward, a few steps backward.

6-8 months for tissue granulation by secondary intention to fill the tissue deficit would not be unheard of.

Do not be overly concerned that the perianal wound is weepy. Soft tissue will secrete serous fluid as part of the granulation process and cellular turnover. The wound will heal with granulation tissue from the bottom up and from the outer margins inward toward the center. You want the weepy discharge to exit the body as it is, rather than retained internally. Wear a panty liner or place a gauze pad folded between the buttocks cheeks as ways to keep feeling clean. Change out, as needed, several times a day. Be gentle in removing any buttock cheek gauze pad so not to “rip away” or dislodge new surface granulation tissue.

The perianal wound is not a sterile wound. We all have bacteria (including staphlococcus) on the surface of our skin and in our mouth, nose, and “nether regions.”

I have had lengthy mid-line abdominal incisions that were left open to heal by secondary intention (no sutures). It took a solid 9-10 months for wound closure. A small eraser-sized wound at the lower end of the incision persisted for some time beyond that.

Wounds are left open to reduce the potential for an abscess or infiltrating infection. The body, in a sense, brings cellular waste and debris to the surface through the open wound as an efficient process of repair and regeneration.

So . . . Be attentive in monitoring and caring for your perianal wound, as you are. Reach out to your home care nurses, as you are, for their assessment and for coordinating decisions on wound care treatment with your surgeon or his/her physician assistant.

You’ll get there. You will heal. Perianal wounds are known to be slow in the process of granulation tissue to fill the wound bed.
Karen

[nickolas]

Diane,

I too am so sorry for what you are going through. My rectum is completely gone, back end sewn up. Guess I was fortunate, no drain tube or anything that you have described/endured. My worst problem, about 2 weeks following my surgery, developed a pain in that area, felt like there was broken bone down there. Could not sit for anything longer that 10-15 mins. Had to sit on a donut seat for several months. Pain eventually went away. No problems today.

Hope you get that wound issue under control, that has got to be the worst.

Take care of yourself,

Nickolas

[Diane C]

Thanks, everyone. Am at the library because my printer is on the fritz. Always something!

Just took a quick look and appreciate the comments, support, advice as always. Yes, I hear surgical wounds take a while to heal. Sure do wish my Asst Surgeon had agreed on the Aquacel silver dressing at the start when this wound on my posterior was a teensy hole. Home Health Nurse came this morning (yes, am lucky to have Medicare and insurance) -- and said it seemed to be reduced in size a wee bit, had tightened more, and seepage was minimal. GOOD. I think the Juvenal was making me gassy (or else it's "just" the surgery -- I'm still SO distended abdominally -- and surgery was 11/1/18 -- but can't exercise as I had hoped with this wound though can dance carefully -- no, I do not do splits!) so took a break yesterday but eating healthy protein. I do have collagen powder I can take instead. Good reminder on the Vit C. I was "off" a few days on my usual supplements (C, zinc, B-16, B-6, magnesium, fish oil, Vitron-C for iron which does NOT constipate, etc.) and will increase the C although do get it in fruit smoothies without added sugar or fructose but that's not enough. I can easily do that. I know magnesium is useful but sort of wonder if it's promoting more output although I don't take much. Thank goodness for Immodium.

Karen/Button -- also good to know re the staph infection. NOT a fan of antibiotics but half finished with this course and I go to the wound clinic on Monday morning. The hardest part has been keeping a comfy adhesive protection on top of the dressing so it won't come out. In an awkward place and sometimes the adhesive pulls, making even walking uncomfortable. Today, I'm wearing a pull-up -- just more comfy. I'll get recommendations from the wound clinic. We used Convatec's curved Brava strips as reinforcement and ouch, they pulled at my skin. Was glad the nurse came and changed it all this morning. It was certainly easier when I applied the dressing myself after surgery but since I can't see the wound back there or be sure the dressing is in well, I'm reliant on her and she's super.

I don't mean to complain. Some of you have been through FAR worse than this. Drains and more and this "just" takes patience. Getting the hang of the ileo -- but still leakage issues. Need to find a "tape" to frame my barrier that doesn't itch. Will try Pink Hy Tape again this week tho the Brava products WERE working. Agree -- I think alternating products is key.

Hoping our impending snowstorm on Sunday night won't close the wound clinic. In the DC area, when we get snow, so much is closed and it's incredibly inconvenient, esp for parents as schools are closed. Seems crazy but guess we're still unprepared for it though the region is getting better. The hospital will be open so think the wound clinic affiliated with it will be if the nurses can make the trip. Can't wait for spring!

More later but grateful for all your words. Love this site! Thank you!

Diane C

[lms1]

My wound has led me to a great tape for picture framing the ostomy. It is 3M Medipore soft cloth tape in the 4 inch width. I buy the 4 inch by 10 yds from Amazon. Most tapes bother my skin but 3M comes to the rescue again with this tape...at least for me. My wound nurses had been using this on my wound and I decided to try it on my ostomy.

Linda

[Diane C]

Interesting on using the 3M Medipore soft cloth tape on your ostomy. I'm not clear how you use it with an ostomy appliance...? I have seen this as the wound nurses have used it on the wound where my rectum was -- and the wound is still there. I should have asked about Calcium Alginate and will tomorrow when the home health nurse comes again. She feels the wound is slowly tightening and healing -- and not 6 cm deep as measured on Monday by the wound clinic. I'm now using a thicker, rope dressing and managing to keep it in place with some bandages the wound care clinic provided. I did go by my surgeons' office and wrote them a note about all this. I indicated I needed no reply and, as expected, rec'd none. I realize this is going to take time.

Meanwhile, still experimenting with the ileo. I'm just so distended most of the time and don't wake up when I sleep so will start setting the alarm due to leakage during the night. My GI doc said that if I consume any dairy (half n half in chai tea is my weakness) to take FOUR lactaid tablets. He's a very smart, good doctor and claims one can't really OD on Lactaid tablets and claimed one does NOTHING. Is also the same doctor who's against MINT used in many reflux products as mint can bother some patients with GERD (Google this -- it depends). He's also the doctor who told me about Vitron-C for iron which is not constipating and a lifesaver. Showed me some ez exercises to build up my core muscles while I wait to get to the gym or PT although I really can be walking on a treadmill, etc.

The weather here has been gloomy and I'm trying to raise my spirits. More snow in the DC area on Sat. I have a LOT of laundry to do... I realize full well that many of you are so much worse off... laughter is good as is productivity. And Happy Valentine's.

Diane C.

[lms1]

I use the cloth tape simply to picture frame the base plate just like you would use the pink Hi Tape. My wound nurse said the the hi tape was actually pretty harsh stuff and my skin certainly agrees.

Linda

[Button]

The 3M Medipore tape is lovely. I learned about it from forum member Susan (the accomplished master’s swimmer).

3M Medipore tape is s-t-r-e-t-c-h-y and conforms easily to surface skin irregularities. The 3M MediPore tape has tiny holes sprinkled through its elastic-cotton matrix which gives it added pliability and breathablity. It is amazingly soft. Good adhesion without being too tacky/sticky.

I have fragile skin from long-term use of corticosteroids. My skin takes well to this tape. My opinion: The 3M MediPore tape is a good choice for even those with sensitive skin.

You have to be discerning when looking for this product. 3M/Nexius has a large number of tape products with similar names. Make sure that it is 3M MediPore tape. It is a white, cloth-matrix tape with lots of stretch and tiny holes throughout its length.

My Thanks to Susan for her initial recommendation. It shows, again, the value of how we share and learn from one another.
Karen

[Diane C]

Linda, Karen/Button, Susan, and others,

I updated my status under the clothing alteration discussion thread.

Thanks for the recommendation about the 3M Medipore tape. I have a whole roll but am not using it now -- but after your recommendation, can try to square off my ileostomy barrier with it. I was using it to keep the pads on my abdominal surgical wounds but those have now healed there. The only wound that remains is the post-surgical wound that's still about 6 cm deep but slightly less in diameter and where my rectum had been. I can't see or reach it so the home health nurse visits 3x/wk and applies dressing to that or I go to the Wound Care Clinic associated with the hospital which directs her. It's healing VERY slowly despite much protein added to my diet, the protein supplement, Juven, Vitamin C, etc. I'm unsure if the staph infection has healed. I think so.

The excellent home health care nurse is packing mesalt strips (I think Molnlycke Mesalt Sodium Chloride Impregnated Dressing) into the wound as a primary dressing to dry it. The secondary dressing is the Mepilex border foam which looks like this but is smaller: https://www.carelinemedical.com/product ... T4QAvD_BwE By the way, the nurses weren't too keen about the calcium alginate dressing (and the surgeon originally preferred Aquacel silver) -- but I'll ask questions as this is slow going. The small Mepilex border bandage and tape has made adding a moldable, adhesive to the dressing much more comfortable and stays on.

The home health nurse is also using a product that reminds me very much of Cymed's MicroSkin wafers and I wish I could order this product just for the TAPE but the dressing is extremely costly and they come together as a very costly package for wound care. That product is, I think, V.A.C. Granufoam Dressing, and the nurse had left over tape she gave me from a patient whose wound healed. While I have a home health nurse come, I can't order any products for myself and still have a pretty good stash of Convatec and Hollister supplies from when I had a colostomy but don't want to run out. Convatec also sent me samples of the high output pouches to try. (As you may know, with one, I'll cut off the "spigots" as I think stool will get clogged in those spouts -- this is what the Convatec rep suggested I do. The other high output pouch looks like a regular pouch with filter.)

The super TAPE that the nurse uses on the very exterior of my "posterior" goes with the above costly dressing which I'm not using. It looks like a see-though adhesive tape with royal blue and white markings and numbers 1 and 2 printed on it, indicating how to separate the tape from the backing. Similar to Cymed MicroSkin's wafers, if you aren't careful, the tape will become impossible to use and wrinkle up sticking to itself. If you separate it correctly, it adheres to the skin beautifully and could square off my ileostomy barrier faceplate wonderfully -- until I run out of these few sheets of tape the visiting nurse gave me. I ordered a sample of Cymed MicroSkin's 2-piece wafer about 6 weeks ago... still waiting. I was warned it would take quite a while to arrive and may just go ahead and ask the nurses to put in an order if possible. I sure liked that product years ago -- but not the adhesive irrigation sleeves which I have no real reason to use now that I have an ileostomy.

Sure wish this tape that's similar to the Cymed MicroSkin wafer were available for ostomy use. I'm not finding the Brava curved or straight strips or pink Hy Tape comfortable anymore. Both itch and I wind up pulling them off. I definitely need to square off the ostomy faceplate because I have been leaking despite using the Stomahesive strips over indented scars and seals which I attach to the faceplate. Still experimenting...

Diane C.
2000 MACE Procedure for Inherited Constipation/Distention due to Dysfunctional Puberactalis and Anal Muscles
2002 Colostomy
2015 Surgical repair of sigmoid abscess and strangulated colon below the stoma
2018 Ileostomy with removal of Colostomy, MACE procedure, hernia, entire rectum