UOAA Discussion Board

Apologies, all. It’s been a while since I posted. As usual, it’s good to see ostomates up here continuing to help others.

Most of you know I had major surgery about a year ago – switching from a colostomy to an ileostomy, removing my MACE tube which I used for irrigation, and excision of the anus and rectum due to diversion colitis. I’m grateful for that last part – exceedingly – and never thought I’d go that route when British Terry (miss him!) recommended it many years ago.

That was a tough surgery but with much support from you (missing Karen, too! Big sigh!) and others, made it. Then developed a post-surgical wound on my posterior that took from Jan to May (?) to heal with a visiting nurse coming. Then PT.

I’ve determined with my very good GI doc that I have SIBO – small intestinal bacterial overgrowth. So, all this time, I thought the gas and distention were coming from my large intestine – and much did – but the condition in my small intestine needs help. Yes, I’m on a probiotic but pre-biotics (e.g., sauerkraut) don’t work very well for me. I’ve also switched to Lactaid if I have dairy and we plan to work on this issue.
However, in the Spring, after my wound healed, I developed urogynecological symptoms. I met with many doctors – gyn, urogyn surgeon who insisted I had a vaginal fistula going into my small intestine and that I needed a colorectal surgeon, immunologist due to many antibiotics, esp Cipro. The bacteria that keep popping up when I have cultures tested are rather pernicious like Pseudomonas aeruginosa. I’ve had an xray called a vaginogram, a CT scan with contrast, and MRI. Nothing shows up but two doctors think I have a cyst that’s collecting the bacteria. During an exam, the cyst seems to get pierced and discharge pours out although I seem to have some other kind of constant infection from my bladder or above – uterus? I’m taking natural supplements for yeast and avoiding sugar. I feel nauseated, lack appetite, and am tired.

I consented to see a colorectal surgeon who works with the one who performed my surgery although I’d switch practices if I were to have more surgery. This surgeon suggested open, exploratory surgery since the X-rays have revealed nothing although agreed to do another MRI or CT. I am definitely NOT in the mood for more surgery. Yesterday, the urogyn surgeon (who’s about to go on maternity leave) prescribed a medication for my bladder (not an antibiotic) and I’m due to see my gyn again. It’s been a mystery and I’d rather read those in books. I’m trying to avoid more surgery and hope to get this solved but it’s been going on quite a while.

Two other items: I did write Cymed over a year ago and we’ve exchanged a few emails with someone keep promising to send me MicroSkin samples. They never arrived. At this point, I give up. Sad because I like the product and company. I hope it’s still alive.

My ileo output has been heavy so I use Immodium – but sometimes even that does not help. I’m still tinkering and switched from the liquid to the gel caps. It got to the point that I was wearing my irrigation sleeve under slacks if I knew I could not empty for a while. I recently ordered the Coloplast Sensura Mio Convex Flip in a 2-piece with high output pouches. I’m using a small company that helped me after last year’s surgery and the high output pouches are not covered by Medicare or insurance. Hmmm? So, I guess I’ll have to switch back to Edgepark or Byram. Seems odd. Do any of you use high output pouches and do you receive reimbursement? This time, I did NOT cut off the spout and find it easier to empty but I think ostomates are supposed to cut it off to turn it into a more regular pouch. Thoughts?

I’ve lurked a bit and am glad folks are getting help. I hope to find it here in the DC area! Take care.

Glad to see you are up to posting, Diane. Have been absent myself lately due to our ongoing health concerns. I have never tried the high output pouches except in hospital a long time ago, so cannot help you there. Have you checked out: https://www.wocn.org/page/Nurse_Referral
They may list someone in your area.
Keep improving & posting.

have you seen an infectious disease physician? if not that may be of some help. they treat hard to treat infectious diseases and infections. i have seen them a few times and they offer a lot as far as treatments that my other doctors never even thought about trying. i would also recommend they do the MRI and CT if they haven't done so already. and they possibly need to go in and see for themselves what is going on. i know you said you don't want surgery but you also don't want sepsis also from an untreated infection.

Hi,

I get occasional bouts of SIBO because I have no ileocecal valve to prevent Large Intestine contents from back flowing into the small intestine. There is a breath test. Have you had that yet. SIBO is fairly common in folks with significant loss of small intestine, no ileocecal valve and some large intestine. My only indicator is lots of output, gas and inappropriate weight loss. Flagyl has fixed it both times, but that’s a tough antibiotic to take for me.

Have you thought about going to some of the big teaching/research hospitals in your area..Johns Hopkins, GW, Georgetown, etc. I travel to Cedars-Sinai in Los Angeles every three months for their short bowel program. There help has been invaluable.

Good luck,

Linda

Thanks so much, all. I hadn't seen your helpful replies.

The vaginal or bladder leakage and infections have been continuing but I THINK we have found that somehow fluid is collecting near my uterus or bladder or somewhere rather high up in an abscess or other sac. Sometimes, bacteria grows in that fluid. When I see doctors who examine me manually, it appears that the speculum or instrument they are using pierces the sac and the fluid rushes out. That fluid seems contained but I was very concerned about the bacteria entering my bloodstream.

So, since about February, I've had a "vaginogram", a CT-scan, and an MRI. NOTHING was detected which is very odd, mystifying, and disappointing. In the last month, I changed some of my medical team and I'm working with a gynecologist, colorectal surgeon, and urogyn surgeon all out of the same facility -- where I did NOT have my ileostomy surgery in November 2018. They're supportive and seem to want to solve this dilemma. I have another MRI with contrast -- a slightly different one -- scheduled for this Friday (after Xmas).

When I saw the excellent urogyn surgeon (whom I last saw in the 1980s before any ostomy surgery), he examined me. He surmised that there's a sac or abscess of liquid rather high up. He didn't promise but indicated that after Friday's MRI, he may be able to apply anaesthesia without major open surgery (I have much scar tissue and adhesions now) and "get up there" to view the problem and perhaps make a fix. Here's hoping because I really don't want MORE open surgery after so much. I'll keep you posted.

As far as the SIBO, it's evident I have this issue although most of my small inestine is intact. I think I always had it -- even with my colostomy and before. My father and I are, well, gassy individuals and major distention along with intestinal motility problems were something I grew up with. Years ago, at Johns Hopkins, where I learned about biofeedback for my pelvic floor situation (and received excellent biofeedback in Chicago and Sherbrooke, Canada -- it was only 50% helpful), a very esteemed doctor mentioned the hydrogen breath test. With so much going on, I didn't follow through and no one seemed sure where to get this. I recently mentioned it to my very good GI doctor. We'll be focusing on SIBO in 2020 after this urogyn, leakage issue is solved -- or perhaps during treatment. He indicated the breath test isn't used too much now (??) and there are medications now for SIBO but I am interested in natural approaches if they exist. I can still get GERD and take Zegerid or Omemprazole on a limited as needed basis. I do wonder if the harmful bacteria I've been experiencing and "discharging" is related to the SIBO so am eager to get a handle on this.

I'm in Arlington, VA, and yes, teaching hospitals at Georgetown and elsewhere exist. I can also return to Balto's Johns Hopkins but will check with my GI doctor. Meanwhile, I'm using probiotic supplements that are high quality -- but that's clearly not enough. Since February, I've had 4 rounds of antibiotics (Cipro and Bactrim) and they make matters worse. Not on any antibiotics now as the last 2 lab tests came up negative for bacteria although some form of liquid is still collecting near my small intestine but apparently in my reproductive system somewhere and seeping out when I pee -- and I sometimes have a very urgent need to urinate. My appetite has also decreased. This last urogyn surgeon doubted I had a fistula going into my small intestine given the color of the discharge -- not brown. In fact, it's grown much lighter.

Yes, I did see an immunologist but was sent to him really to determine what kind of antibiotic to take when the harmful bacteria were present. He couldn't recommend any since he was unsure of the source of the bacteria although he thought Cipro might help. At this point, Cipro is probably out as my body may be resistant to it since other doctors prescribed it. I did read about other strong antibiotics taken via IV but am hoping to avoid them.

So, time will tell and I hope it's SOON. Thank you ALL for your help and support, including those who emailed some good ideas. I'll report back.

Meanwhile, Happy Chanukah, Merry Xmas, and here's to a healthier or healthy New Year! Hoping most of us up here can enjoy the holidays with peace.

Hi To Dream,

Hope you're doing better. I always remember about this useful forum but when feeling pretty lousy or worried -- or on overload (my mom turns 103 in February; she finally consented to having aides at her INDEPENDENT living home for a whopping total of 2 hours daily (!) as she refuses to move to Assisted Living -- and her situation seems improved for now though, of course, I remain concerned about her balance and cognition), sometimes I lack the motivation and ooomph to post. I'm missing Button/Karen who managed to give us so much info no matter how many challenges she faced. Procrastination does NOT help! So much useful info is offered up here!

Thanks for the idea to contact a wound care or ostomy nurse or professional. When I had my post-surgical wound in January 2019, I did get to know a team of wonderful wound care and ostomy nurses. And a couple of super helpful folks up here suggested the Coloplast SenSura Mio Convex Flip system. Although I was very impressed by the barrier or faceplate in the 2-piece especially, I never thought I'd like the Coloplast click and lock system -- but have been surprised. Years ago, I found it so difficult to use but less so now.

When a visiting nurse was helping with my post-surgical wound early last year and she had to order my ostomy supplies, she used this company: Mercy Surgical Supplies (800) 637-2950 | info@mercyscb.com. A woman named JOAN there has given me very personalized attention. I never had a problem with Edgepark but have switched for now and recommend Joan highly. Her company can't order "special" products (e.g., Cymed Microskin) and she performs some miracles to ensure I can get high output pouches, etc.

I realize that ostomates are "supposed to" cut off the spout in high output pouches that urostomates use but I've found the spout helpful in emptying. Since I've had the bacterial infection and odd collection of liquid in an absccess or sac soon, I hope, to be determined, I've had bouts of diarrhea at times and the spout helps. It's high profile -- but for now, I'm keeping it attached. It also seems to keep the output process cleaner. I may eventually return to Convatec, but for now, I'm pleased.

However, thanks for your encouragement and support. Much appreciated!

Update: Had a pelvic MRI with and without contrast. AGAIN, no source found for the increased discharge (now slightly PINK). Amount of discharge has increased and cultures reveal bacteria. On 2/6, the urogyn surgeon will perform "exploratory" surgery by "going in" using anaesthesia but minimal snipping. He thinks he can reach the area without surgery and find the culprit. I HOPE SO! I am tired, have loss of appetite (this is not how I recommend losing weight), feeling blah with little energy to exercise much less swing dance, and often experience diarrhea so trying to hydrate. Then, I'll have surgery to fix the problem if a discovery is made. If not, going to a teaching hospital but this surgeon is reliable and caring. Maybe a fistula but it is hiding. Stay tuned.

Meanwhile experimenting with high output pouches. I think I like Hollister's best. Convatec's become crinkly. Coloplast's are ok -- and surprised I don't mind it's clickable mechanism this time around but Hollister's are easier to manipulate. Any ileostomate using high output pouches?

Over and out!