UOAA Discussion Board

Thanks so much, Karen! Much appreciated. No choice but to be patient.

I do take quite a few supplements -- from probiotics, Vits B, C, D, Vitron-C for iron (not constipating), magnesium, omega 3 fish oil, L-Glutamine (my gut loves it), lysine (for aphthous ulcers on tongue -- undiagnosed for 3-4 years) and more. I used to take Vit E and selenium but am holding off on that these days. In fact, I just finished putting all the capsules into my weekly holder. MANY! I'm also continuing with Juven powder (unsweetend, plain) which contains collagen, amino acids, and some vitamins I already take (it contains selenium) -- and just added the Biotrust chocolate protein powder that's very yummy. I haven't had ill effects from chocolate but am not a chocoholic -- yet.

My appetite has not been that large unless I make the mistake of missing a meal. I'm hydrating more. I feel a dull ache inside where my colostomy and heria used to be. Still healing? No pins and needles -- but the sensation is a bit nauseating. I know things inside are still healing. My GI doc told me to massage the area with Vit. E oil and I've been doing that but it doesn't really help.

I need to stop being a sloth and exercise. Although I have one bum foot right now, I can do certain leg, abdominal, and other exercises. Lift light weights. Whatever won't affect my wound.

I'm visualizing this wound closing -- and truly appreciate your supportive words! And definitely wishing YOU well.

Diane C.

PS. Karen/Button,

I wanted to add that the wound clinic's full name at the hospital where I had surgery is "Outpatient Wound and Hyperbaric Clinic." When my wound was healing at a snail's pace -- and I hope that doesn't continue but was warned that this may occur again as it gets smaller -- I asked about hyperbaric treatment. (I actually heard about it years ago when I had breast cancer that was diagnosed early, thank goodness -- and oxygen treatments were available for cancer in Germany but I didn't go.) The primary wound care nurse opted for me to see a plastic surgeon instead for some reason. However, now that the wound IS healing that plan is off. I'm canceling my next appointment with her because I don't want more surgery even if the wound healing takes months and months. My pal, a nurse-practioner was convincing. She emphasized that I've had SO much surgery recently and something could go wrong as did with her when a surgeon used some of her hip bone to fix her foot. I could get another wound, in fact. No thanks! Enough is enough.

But thank you for mentioning this. I'll ask again if the healing truly slows down but am now very consistent with the recommended amount of protein and 2 packets of Juven (mostly collagen) daily. And willing to wait... and wait.

I truly hope you're not in severe pain these days and can find joy with the beginning of spring and sight of the sun.

Diane C.

Thank you, Sassie.

I agree with Karen about the benefit of checking with your physician. When I had my colostomy (and everything else -- rectum, etc.), I was prescribed Rowasa enemas to ease the irritation caused by diversion colitis. This won't "cure" the problem but supposedly helps to provide some relief. I didn't find these or Canasa suppositories much of a benefit but you might. When I felt pain near my stoma (I was also diagnosed with "colitis" and during my last surgery, much inflammation was found) my GI doctor suggested I insert the Rowasa directly into my stoma. Again, it didn't really help me. And now I have many enemas to take to the fire station to dispose of. Wish I could send to someone but they've expired and are prescription meds so it's unwise to share. But your doctor MIGHT want to prescribe this -- I don't know. Here's info: https://www.rxlist.com/rowasa-drug.htm#indications

Diane C.

Today's report after the visiting nurse measured my wound. It's less than 1 cm in depth now. Hooray! May progress continue and may you all have as good a Monday as possible. Off to drink my Juven powder in juice and water...

Diane C.

Diane:
That’s Gggggg-REAT news that the wound bed is showing healing progress. That’s news to celebrate.

The perianal wound is a s-l-o-w wound to heal. I think there needs to be more comprehensive conversation imparted to patients by surgeons/wound care nurses as to the prolonged length of time required. Even in the best of cases, 6-8 months for healing can be the norm.

You are getting there. The wound is making headway.

There may still take a few backsteps. Do not be alarmed. The perianal area is subjected to significant stretching forces of the surrounding tissue and day to day activities and movement (getting up to standing from sitting, twisting and reaching) can also interfere with continual progress. Do not panic if the wound should widen or deepen slightly or ooze with a bit more drainage. The wound’s healing is not unlike steps to the Fox Trot . . . Forward 1, 2, 3; Backstep 1.

Continued best wishes and encouragement,
Karen

Karen,

Yup, you are so right... 2 steps forward, 1 back. Not much progress this week after a major spurt of healing of my post-surgical "rectal" wound (rectum excised). My visiting nurse warned me this may happen, esp as the wound starts to heal. Still on Juven (collagen, protein, vit and mineral mix -- many of which I took anyway) and ordered 2 more boxe$$ at Amazon this week of Original flavor -- no sweeteners or flavorings. Most took 2 packs as required but 2 days only 1 pack. Must improve on that. I usually take it with apple juice and water -- somewhat warm. Only natural sweeteners in juice.

Also still taking the Biotrust Harvest Choc Protein powder but took with Lactaid and maybe the combo of juice and dairy were too close together. I used to believe in food combining and still do to some extent. The juice with the protein powderand/or Lactaid didn't sit well. This wkend, will take NO dairy to see the effect and use almond milk. Was so distended this week -- tho still spouting much from my ileostomy though increased Immodium as I was under-dosing. Dairy never affected me so much before (IF that's the culprit) -- but distention has been a chronic issue in the past due to constipation which is gone. Will test it. (Am actually ALLERGIC -- respiration -- to 1% and some skim milk but not 2% or whole or half n half -- odd. Probably best I eliminate it but can't consume soy and used to eat a lot of yogurt -- didn't have any Green Valley lactose-free or any yogurt this wk.)

On Wed and today, visiting nurse measured. Wound had been 1.8 cm but has stayed at 2.0 cm. The dressing a bit bloody today when I took it out. I was HOME most of the week and that did NOT help. I am happier when out and about -- and that's when I healed more. Go figure. At home, I am on my butt more which may not help. I try to lie on the side -- but not always. I think exercise, even when hobbling on one good foot, and being with people help my body and mind.

Bp is pretty low as posted elsewhere. Am hydrating but not enough so will push that. 88 or 91/50 is in regular limits but low for me. Keep waking at 4 AM no matter what time I go to bed. Not leaking but admit I wear an irrigation sleeve to bed to avoid worrying about overflow. Sill using Convatec 2-pieece. Have not yet tried the Sensura Mio Flip as I'm a bit raw on abdomen even from Convatec Ease trips. Sensitive skin! Feeling drained. Could be the to-do's I'm procrastinating on...

Ingredients in Bio-Trust Harvest Protein Powder (yummy) are: pea, pumpkin, and hemp protein -- never had a problem with those before. Also stevia -- fine. However inulin and erithrytol can cause digestive issues. The ingredients in this protein powder are better than most that I've tried. The attraction was and is 20 grams of protein (to heal a wound) in a serving of 2 scoops. So will try it in almond milk instead and see how that goes. And keep eating other small meals with protein though my appetite is not great. Eggs or chicken with veggies are good. Also a veggie protein burger I like.

Keep awaking at 4 AM no matter when I go to sleep. Admit I am still sleeping with Convatec irrigation sleeve to avoid stress of leaking and doing well on that score. However, even the Convatec Ease strips have irritated my abdomen so for now, have avoided using the 1-piece Sensura Mio Convex Flip. The home health nurse must order supplies. Wish she'd gotten the 2-piece as requested but soon will try this product and see how my skin reacts. Does look nifty and hope pouch is large enough.

Have a good wkend. DC is popping with Cherry Blossom Festival and the opening of baseball season -- and the tourists abound as does traffic congestion but I welcome Spring, sun, and warmer weather.

Diane C

Diane:
Do lie on your side more than lying on your back.

Do lie on your side or stand more than sitting in a chair or lying on your back.

A perianal wound also needs circulating fresh A-I-R.

I spent a lot of time lying on my side with my back-end opened to the air. A body pillow was helpful to hug and provide body support and alignment (one leg up on the body pillow, hip/knee bent also aided getting air to the wound). A small fan also helped circulate air to the wound.

Sending you positive karma and healing wishes,
Karen

Thanks so much, Karen. The wound is covered though -- does that matter? Dressing in the form of sort of a cotton thin ribbon is inserted with Prisma which dissolves. Then that is held in with a rubberized, adhesive covering so nothing falls out. The wound is not open to the air but sitting and lying on it -- not great ideas. I need more exercise to put it mildly.

Diane C.

I'm being patient. Frankly, I'm relieved. The post-surgical wound didn't hurt much before but now does. I'm hoping the pain is related to healing but don't know. It's not itching... more of a burn... I thought the depth of my wound had increased and glad it did not.

Anyway, yesterday, the visiting nurse came. After a burst of healing and the wound closing to a depth of 1.8 cm, it seems stuck at 2 cm deep and is a bit bloody. On Wednesday, I'm off to the Wound and Hyperbariatric Clinic at the hospital for an assessment. Still consuming Juven (much collagen in it) but today am holding off on the protein powder as I THINK it's causing distention, even in almond milk. Still off dairy. Have increased the liquid Immodium and try to take before eating (and wearing an irrigation sleeve -- a pouch filled up so fast... within 3 hours) and hope the output slows but since I'm eating much protein and was taking both of these supplements (and others) and also having a few veggies and small amount of fruit (mangoes) -- chewing, chewing, chewing, makes sense that my ileostomy would be active. I'm hoping this will change within the year. I'm back to hydrating alot.

Will keep you posted. Sure do hope good things come to those who wait! (Foot bones healing slowly, too! With luck, maybe no boot in 5 weeks.) Hope you're as healthy as possible.

Diane C

Hi Diane,

I have a different situation than you but also have a slow healing wound from surgery in late June 2018. I only have 5.5 feet of small intestine remaining and have malabsorption problems because of that. I finally had to stop taking Juven because, by process of elimination, it appears to be causing me watery diarrhea. I’ve eliminated it since Friday and it has stopped. I had been really good about taking it since my incisional wound was reopened in late February but I’m back to losing 5 lbs a week again. I’ve got my fingers crossed that Juven was the cause. Just an FYI for your consideration.

Good Luck,

Linda

Thanks, Linda. Hmmm on the Juven. My stool is pretty watery at times -- but, uhhh, kind of "oily" as if it's from the stomach or has bile but is brown, not green. I've chosen to stop the Biotrust Harvest Protein Powder which contains inulin -- quite a bit of it -- and can lead to distention. I'm feeling a BIT better in re gas but not a ton. Sigh, at the Wound and Hyperbaric Clinic yesterday, the depth of my wound was still 2 cm.

I'll go into this and another matter that I think folks will find of major interest about flattening out the abdominal surface if you have dips, scars, etc. later but the wound care nurse suggested that she graft a small piece of bovine tissue into the wound. It's not really surgery and takes 10 minutes as an out-patient in the wound clinic. I'm not sure if she also puts the dressing in -- I'd think some kind of dressing would accompany the bovine graft to keep it in place. The area is then covered and one can't shower for a week -- it must stay undisturbed. She's calling my insurance (and Medicare?) to see if this is covered. I'd better remind her. She'd do this on my next visit which is 2 wks away. I don't understand why she didn't mention this before I went to the plastic surgeon who suggested using my inner thigh muscle to fix the wound -- and I've decided I am not in favor of that. So we'll see.

My visiting nurse returns tomorrow and I'll see if the wound decreased at all. The width and length remain at .3 and .5 cm -- for weeks. I'm hydrating so much, it's hard to hold urine... but I'm 67 and my muscles there are weak -- and became so after back surgery in 2006. I can't believe I forgot to discuss that with the back surgeon -- too much was on my mind. (A nerve was pinched and caught in the vertebrae -- spinal stenosis -- and I had foot flop if that's what it's called -- and the surgery was emergency or I'd be limping forever.)

I don't know the reason but the nurse isn't thrilled with hyperbaric treatments. There n'Zseveral of these and I suppose her outcome hasn't been super with my kind of wound. She has.had about a 75% success rate with grafting the bovine tissue into my kind of wound.

So more waiting but I'm all for this. More info to come about the other matter. A busy day and I'll report back tomorrow.

Thanks for the notice about Juven. It is grainy. I usually drink it in juice but once put it in a fish and veggie warm dish -- disliked the taste. It's the original, not flavored, Juven. I don't THINK it's causing distention but there are so many variables. I don't think dairy causes it but am taking Lactaid chewables in case as I had a small bit of half n half yesterday.

Mysteries...possible solutions... and more to come.

Many thanks. Sorry for any typos.

Diane C.

Update after visiting the Wound and Hyperbaric Wound Clinic.

Saw the wound care nurse about the wound where the surgeon closed up my rectal area. STILL 2 cm in depth but seems to be decreasing in size. It had gone down to 1.8 cm but has plateaued. Other dimensions .3 X .5.

Disappointed I can no longer take the Biotrust Harvest Chocolate (or Vanilla Caramel) Protein Powder drink but the inulin in it was causing much distention. Doing a bit better with that now and a nurse practitioner pal suggested a different source of protein: BodyCrunch Whey Protein Crunchies with 15 grams of protein per 1/4 cup. Whey is dairy -- but I seem ok with it. Still experimenting... I don't have much... mostly drinking almond milk or Lactaid. (Protein subject could be a different post... I may repeat this later under a new subject header.)

Inulin is in MANY processed foods so if gas is an issue, take notice. Per Wikipedia, "Inulins are a group of naturally occurring polysaccharides produced by many types of plants, industrially most often extracted from chicory... Inulin is used by some plants as a means of storing energy and is typically found in roots or rhizomes." It's often in stevia -- so watch out for that.

Posted above that in about 2 wks when I go to the Wound Clinic, the nurse will graft (it's not surgery -- she just inserts into the wound) bovine tissue. We don't know yet if insurance/Medicare (???) will cover this. I'm willing to assume a certain cost but we'll see. Here's more info about this procedure: https://www.woundsresearch.com/article/ ... lex-wounds If this is done, can't get the wound area wet -- no showering, baths, etc. for about a week or a bit more. Meanwhile the visiting nurse still comes every other week day and while she does, she has to order my supplies per Medicare rules.

This should also be a new post and I bet someone has already brought up this subject. Will search later. Am going to head to Amazon or Ebay later and try to find a good belt to wear around my abdomen to keep the area "tighter" without pain despite ongoing distention. Would prefer a wide belt with an outlet for the pouch (or in my case -- irrigation sleeve due to heavy output. Medicae does not cover this and an ostomy nurse had suggested this about a month ago. Had asked the nurse to order this but since I must pay for it myself, I'll take care of that: Safe N Simple Security Support Belt http://sns-medical.com/wp-content/uploa ... ocrops.pdf Does anyone wear one you find comfy and helpful? Meanwhile, I'm inhaling and holding my ab muscles in -- and exhaling but must beef up the exercise. There's much I can do -- even though I'm wearing a boot due to 2 broken foot bones that are now healing. Time seems to escape me too fast...

It's warmer in the DC area although we have hordes of tourists because of the beautiful cherry blossoms.

Spring has sprung at last. Grateful!

Wishing all well or improvement and sanity. Many thanks for support! Literally perhaps!

Diane C.

QWIK and positive update. Visiting nurse left a few hrs ago. My post-surgical wound has decreased from 2 cm in depth to 1.8 cm which is where it had been about 1.5 wks ago but increased a bit and plateaued. Other dimensions seem less, too -- is smaller overall. Hope trend continues. If it closes, no need for bovine graft (6 min procedure; not surgery -- just place the graft in the wound) on April 18 when I return to the hospital's wound care clinic. Fingers crossed.

Still on Juven for collagen and other ingredients that seem to be helping the healing. Eating protein. More hydration necessary.

Have a good day and be as healthy as possible.

Diane C.

Glad to read your post & pray all continues to improve for you. Have not been a regular on the board lately due to my husband's health issues. He had surgery last week & seems to be on the mend. So my prayers & best thoughts go out to you, Diane, & all other members of our group.

To Dream,

I was away a few days too. (Just love tax time... NOT!)

My wound increased in size but now -- at least the last 2 weeks -- has been healing. I can feel the tightness and slight pain. Last Friday, it was down to 1.5 cm in depth which is the smallest it's been. When I consume protein via food, that seems to help so much. Still on Juven and need to get back to taking it TWICE daily. But I went off the Biotrust Harvest Protein drink that I loved. I do think the inulin in it (and many protein drinks and foods) led to major distention. The company even refunded me part of my funds so I recommend it if inulin doesn't affect you.

Really appreciate my home health nurse who's on vacation this week. Had a substitute on Monday who did 1/3 the work she does. (Doesn't seem easy being such a nurse -- a full caseload -- and running from one patient to another although nurses at the Wound Care Clinic and hospital always seem so busy and overworked.)

I go to the Wound Clinic on Thursday. Don't know if I'll be given a bovine graft to heal the wound or not. I guess it depends on the progress of healing. Again, this is not surgery. The nurse just places the bovine tissue in the wound and it can't be disturbed for a week. I'll report back.

Wishing all well.

Diane C.