Ileostomy

[Diane C]

Whew! I do NOT think I'm getting surgery. Relieved but cautious. This gets quite biological but here goes. I developed a whopper of a vaginal infection which I rarely get. (I'm not currently in a relationship so caught nothing from anyone else.) For a month, I worked with my gynecologist and supposedly had yeast and then a staph infection. But then, a bacteria called Klebsiella popped up that's connected to the intestine, wounds, and rectum. Hmmm. My tissues are very thin after years of straining (which one should NOT do when constipated -- but relax the muscles -- via biofeedback, etc.) but I don't think bacteria can pass through them. The amount of the discharge and this bacteria led doctors to believe I had a genital fistula going into my small intestine. So I had a CT scan of my entire abdominal and pelvic area and then an xray called a "vaginogram" due to excess fluid and bubbles there. Meanwhile, I was prescribed Augmentin which seems to have helped a bit.

In addition, some of you may recall I had a wound following rectum removal due to diversion colitis. I went to the wound clinic and this sore is .6 cm deep -- as my previous wound had been but grew. The wound care clinic takes marching orders from the colorectal surgeon. He recommended Desitin and I hope he is right... hmmm. I keep it clean, wear sanitary pads, etc.

Meanwhile, my gynecologist had led me to a urogenital surgeon in a different hospital. He sounds fantastic. Just to be sure, I'm keeping my appointment with him next Tuesday afternoon in case there IS a fistula but xrays do not show it.

The colorectal surgeon did confirm that he found a lot of adhesions and scar tissue where my colostomy, hernia, abcess, and mesh had been on my left side -- and basically, that causes pain that I'll have to get used to.

My laptop is on the fritz again (grrrr) so I need to get it into the shop asap. I'll be without it for a while but hope you're all ok and that my situation is resolved. More surgery is NOT what any of us want. Thank you for thinking of me. And for those at the conference, I hope you're enjoying it -- and report back with news.

Diane C

[paula]

Diane, very glad that most likely you do not have to have surgery. As you said, no one wants that. I am doing well, the ileo still working over time, just have to get used to it. I also believe that with this last surgery, my bladder was affected, as it also is working more than usual, and at inoportune times, lol.

Please keep us posted and all the best to you.

paula

[Diane C]

Hmmm, it appears that my reply did not post. I'll update you, Paula, and others after tomorrow. I'm seeing a urogynecological surgeon for a second opinion.

The good news is that no, I don't think I need more surgery. For weeks, I've felt pain in my left side but surgery was exensive there. Long story short, I developed a bacteria in my, uh, vagina and the bacteria seemed to change over 6-7 weeks. First it was staph with yeast. Then just yeast. Took antibiotics which, of course, led to more yeast. When my gynecologist detected Klebsiella and many bubbles, she was concerned I had a fistula or some kind of tear leading to the small intestine. This bacteria is usually in the intestine or a wound. Augmentin seems to have wiped most of it out.

I ended up with a CT scan with contrast that showed that my vagina was filled with liquid bubbles. The discharge was very heavy. This led to getting what's called a vaginogram where dye is inserted to closely examine what's going on. The radiologist noted no fistula or opening as was suspected. My colorectal surgeon told me nothing is wrong -- but for weeks I felt exhausted, was VERY bloated (I always am pretty much -- less so on arising), and unproductive -- falling asleep and skipped my last PT appointment. Walking 3 blocks tired me out.

The vaginogram states that the contrast material seemed to flow into the left hemipelvis which corresponds to the endometrial cavity. The contrast didn't seem to track into bowel loops and a few small intestinal loops appeared to adhere to the "uterine fundus". My surgeon did finally say that my left side, where the colostomy, hernia, abcess, and mesh had been, had MANY adhesions and scar tissue which would probably cause ongoing pain -- and I do use Advil or Extra-Strength Tylenol at times. Not too much. I can live with the pain but the distention needs a solution and Gas-X, etc. are supposedly lousy for us. Btw, I recently stopped all use of Immodium -- no real change.

When I asked how this bacteria could get into my vagina, no one knew. Perhaps from leakage which can occur? A slightly soiled pouch? These days, the infection seems much less, I have more energy, and feel better. But I'm going to check this out with this surgeon tomorrow just to be sure and hope he'll examine me and check the status of the bacteria.

One of you suggested I may be dealing with SIBO: small intestinal bacterial overgrowth, esp because of the ongoing distention. At times, I still look 6 mos pregnant. My surgeon said I have no hernia but need to lose at least 35 pounds. I'd like to lose 45. Once I get my laptop fixed + returned, I'm probably going to Noom to lose weight. I need to walk and exercise. It's been a long haul since getting the ileostomy in Nov and then the wound from the rectum removal.

I'm hoping nothing is wrong but may seek some kind of nutritionist though feel I must experiment. I'm on probiotics -- but NOT fermented ones that cause more gas. Ever hear of Stephen Gundry? I take some of his gut supplements but his diet is challenging. I'm really trying to decrease eating foods that cause gas and eliminate dairy (or only consume lactose-free dairy) and gluten. Can't take soy and dislike coconut-based yogurts, etc. Frankly, sometimes sourdough seems to HELP my abdomen settle down so I'm in a quandry. There are breath tests one can take to help diagnose gas causes -- I guess I could have taken these years ago.

Anyway, I'll update this after tomorrow's visit to the urogenital surgeon and even am hoping for a manual exam. Ouch!

Diane C.

[Diane C]

Ooops, Paula, now I see that my update HAD posted. Ahhh, tech! Oh, well. I'm going to the surgeon tomorrow and hope I gain some clarification. I think what I REALLY need now is an expert to help me with SIBO -- small intestinal bacterial overgrowth -- as one of you had suggested.

Sorry to hear re your bladder, Paula. Well, that means you are hydrating. Good. I fell off the wagon on that and need to get back on PRONTO like NOW. I'm just not real hungry -- more thirsty than hungry -- pretty unusual for me.

More later. Sorry for the duplication but will probably just keep it there as I added info re SIBO.

G'night!

Diane C.

[paula]

Diane, no worries about the double post. Very interesting your post, I myself have slight pain on both sides of the abdomen, and my stitches are still a bit painful as well, when I touch them. But, I guess that will go away with time.

Keep us posted on your visits.

Stay well...............paula

[Diane C]

Hi Paula and others,

The latest is that I saw a urogenital surgeon with super credentials highly recommended by my gyn on Tuesday. He read through the tests and manually examined me. He's pretty sure I have a small hole or fistula. One report is vague about my small intestines adhering near my endometrium (in the uterus) and the test could not verify if the dye from the CT-scan followed that route. But he said that what's now showing up vaginally should not be there and thinks there's a small leak. He took cultures but I found out yesterday that he must re-take them this Tuesday as they couldn't see the results they wanted.

He also recommended two different colorectal surgeons in a different hospital than where I went and the first appmt I could get is August 23. IF I need surgery to close the fistula/hole, I'll need both surgeons. So, everything seems on hold til then.

I can tell I still have an infection but doctors have told me it's "safe" if I don't feel truly lousy and have a temp. I'm ok on that score though hate this delay.

I saw my GI doc yesterday but the visit was too short (my fault -- went to wrong bldg). We discussed this surgery and healing may take a while but I might not have to stay in the hospital long but would need to be on an IV at home. To my surprise, this GI doc whom I truly respect said that yes, SIBO or small intestinal bacterial overgrowth is real and he wants to help me with it after this surgical issue is resolved. He's always promoted probiotics -- Align -- which I don't think is the best around by far. (I actually use a brand I brought online from Gundry above. I used to take the VSL Double Strength powder but got lazy...) I asked him about the breathalyzer test which determines what's causing so much gas. He said that test is hard to find these days (I'm pretty sure insurance won't cover it). He agreed that you just never know until after surgery if gas is coming from the large or small intestine. In my case, probably both but I remain distended since my ileostomy in November except when I first wake up. Once I eat almost anything, I get distended and by late afternoon, it's often painful. I don't chew gum or use straws. We'll be looking at this again in about 3 months.

I'm really paying attention to what I'm eating. Oddly, sourdough bread (gluten) seems to settle my stomach and help but doesn't help my weight as I love carbs and moderation is tough for me! Smoothies with only bananas and strawberries -- sugary fruit -- make it much worse. So I'm pretty sure fructose is something I'll need to avoid. Dairy -- lactose-free -- is still a question but I'm fine eating/chewing almonds so my gut's saying switch to almond milk. I just don't like coconut drinks. Not a massive fan of alternative "milks" but heading in that direction. Coffee has acid -- only drink 1 cup a day but wonder if that affects me. Definitely must jump on the hydration and exercise boats again.

Time will still tell! Hope folks enjoyed the conference and have a healthy wkend.

Diane C.

[paula]

Well, here I am again. By my previous posts, after landing in the emergency room several times, it was decided I had scar tissue and that it had to be removed, which I was operated on back in February, having to do a second surgery and the first one did not go well. I was told that this would prevent, at least for a little while, my going to hospital with severe cramps and horrible vomiting. However, after 4 months of the surgery I ended up there again, and just last Friday once again, 2 months later. Spent weekend in the hospital, etc, my veins are all shot, and I'm truly getting so, that I don't know what to do. Losing weight, as when it seems I'm recovering a little, I end up in the hospital, with a tube in my nose and not able to eat a couple of days. I live outside of the States now, and am seriously thinking of going back to get new perspective. Any and all suggestions, comments are appreciated.

Thanks so much in advance for always being there..................paula

[BillGK]

Paula, your last sentence took the words right out of my mouth. I know nothing about your condition, expertise-wise, but you are clearly in some trouble and it seems that they aren't getting to the bottom of it. As I was reading my thought was, "Paula needs to find a source of greater expertise". Are you at a major medical center? There are plenty of good ones in the U.S. as you no doubt know. Good luck!

[WATERBOY]

we have to remember that ileo's just take awhile to settle in. Our large intestine will absorb a lot of the liquids and the final nutrition available in our waste. an ileo will be very wet' but, after a while, it too will begin to absorb the liquid part of our digestions (it's why we sometimes have ..."pudding" instead of watery stools). The amount of flow will get less with time, and keep a journal of what seems to cause "upset" stomach. You will have moments of....."second thoughts" , but trust me, once your body makes the adjustments, things will get progressively better!! praying for you. scott

[paula]

Scott and Billgk, thank you for taking the time to reply. Yes, I was operated on at a private medical center. Everything seemed to be well organized and the doctors , which I researched, respected in their fields. However, obviously, things did not go well, and I'm left with the same problem. Yes, my husband and I are thinking of going back to the States with all my records and see what they tell me.

Thanks again for the support....................paula

[provina]

Hello,
I have had my illeostomy for 30 years. The output did decrease eventually over time. It takes some time to get a feel for what you can eat and what effect it will have on output. The BRAT recommendations are golden for slowing output. I have found that peanut butter works for me. I eat a peanut butter bagel for breakfast and that sets me up. Water runs right through me and really increases the output. I have found that the syrup in colas tend to slow things down for me in terms of liquid. (i am a unique animal!) I also find that snacking and keeping some food going through helps slow things down a bit. I have to be very careful of spicy or acidic foods as those speed things up. It's a lot of trial and error. The immodium doesn't really work for me either. I hope you find the golden ticket for your system!! Good luck!

[paula]

Hi Provina:

Thank you for your input. I will try the peanut butter, which I really like anyway. The output seems to be getting a little less and its not as liquidy, which I think happens with time? Spicy foods are also a little iffy for me. As you said, its trial and error and getting used to the ileostomy, as you probably read I had a colostomy for almost 16 years and was totally used to that, but will have to get used to this now.

Thank you so much again.

paula

[Mirandarose]

I have had an Ileostomy for 13 years and had all sorts of issues but the worst is excessive output. It can be very dangerous if you get dehydrated. . You need to slow the path of your food. I finally had a good gastro MD who was very familiar with my situation give me a set of things to take. I take a good probiotic once a day, Pepcid twice a day, colestyromine 1-2 a day. The last one thicken and slows the output. Immodium as needed. There are also other things if these don’t work but this routine has helped me. Obviously, see your Dr before you do anything.

Things that thicken (and thereby slow) your output are things like rice, pasta,bananas, peanut butter. I really enjoy hot rice cereal. I find it very soothing and great for calming things down. I don’t drink a lot of fluids when I eat but certainly stay hydrated the rest of the day. High fiber foods and fruits should be eaten cautiously. I have also had blockages cased by pears and bananas.

I think if you get your system slowed down you will gain weight and feel in control.

[paula]

Hi Mirandarose, thank you for giving me your input. It all helps, as I said, I had a colostomy for 15 years and was totally used to it, and now I've had to get used to the ileostomy, which as you said, is a little different, as I also have a lot of output, and therefore, a little worried when I go out, etc. I will try your suggestions, though. Things are getting easier.

Again, thank you so much for taking the time to answer.

paula

[lbmaynard]

Hello, I am new to the forum. I have had my ileostomy for 8yrs and 5mths. My problem started when I was in my early 30's. I went in the hospital with severe pain in my abdomen. The dr told me I had a large cyst on my left ovary. He took me into emergency surgery to remove the cyst. The next morning, I started bleeding in my stomach. The doctor open my incision in the room. After that they rushed me to icu. He performed surgery and end up removing my left ovary. A few months later, I had complications and had to have emergency surgery again. This time, I had to have an hysterectomy. A year after that surgery, I had a bowel obstruction from scar tissue that I developed from the surgeries. From that point, I was having bowel obstruction and surgeries 2 and 3 times a year. On January 8, 2012, I was in Orlando on vacation. I had a bowel obstruction again. The doctor scheduled surgery the next morning. I went in surgery 9am and my husband said everytime the doctor close I would bleed. He said I was taking back to surgery 3 times. When I woke up, I was on life support. The doctor came in and explained to me, from all the the scar tissue I had my large intestine was like cement. He removed all of my large intestine and most of my small intestine, and gave me an ileostomy. I stayed in Orlando, FL. for 7wks in icu. I finally begged the doctor to let me come home. he agreed, as long as I found a doctor at UMC. My husband and son brought me home, that night I was rushed back to the hospital. I stayed in the hospital for 2 1/2 months. From the beginning I had a problem with high output. Rather I ate or not. My husband would constantly get up all through the night to empty my bag. He finally found a simple way for me and him to sleep. I started using the Convatec High Output Bags and I attach a urine bag to it. I sleep all night and when I am home I wear it. Using the urine bag,
alleviate you cleaning your ileostomy bag. You also can clean the urine bag much easier than the ileostomy bag. Anyway...since my surgery, I have been on TPN and IV fluids for 8yrs. I have tried the imodium and I have been on Gattex 2yrs. I have tried so many things to slow down my output, but nothing is concrete. The Gattex slow it down for maybe 30 or 40min, but after that it's high again. I constantly stay dehydrated and the IV fluids drop my sugar levels. I say to myself, I should be a pro by now with my ileostomy. To be honest, I have been very happy and positive. I also, love that I only have to change my bag once a week, until today. For some reason it just wouldn't stop leaking. I had to change it 3 times and I haven't had that problem since the first year I got my ileostomy. So, today was the first time I felt a little down and actually said God why me. To say all of this, is to ask. Is it anything anyone can tell me something I can try, to slow down my output? Thank you all for listening to my story.