Help! First Experience with Bowel Obstruction Nightmare - Seeking Advice on Prevention

I can totally relate to your hospital stay with your blockage and the ER docs not really knowing what to do. The NG tube experience was the worst to date. I think each and every person in the medical field should have to have one put in them so they fully understand how difficult it is on the patient.

I went to the hospital on Dec 6th and was there for 2 weeks with what started out as a bowel blockage. They finally got the blockage to clear after 5 days but I ended up with so many problems. My blood sugar plummeted so they had to change out the IV fluids, then my potassium dropped to a 2. The entire night my heart monitor would go off about the time I would doze off. I would have to get up and sit on the side of the bed or pace the floor to get it to shut off. I called the nurse and told her it kept going off and I couldn't sleep and she came in and adjusted the alarm settings but that didn't help. Little did I know that the potassium level was affecting my heart rate and causing the monitor to go off. At shift change they determined it was my low potassium level that was making it go off so they infused a bag of potassium into me. That was the most painful thing that I have had to experience in a long time. It is right up there with the level of pain the blockage created. I felt like my arm was going to fall off it hurt so bad. After that, I still couldn't eat anything not even liquids without feeling like it was backing up clear to my throat. After several other tests they found out there was still a partial blockage and the doctor decided to do surgery since it was getting worse. While he was in there he found a kink in my colon and as he tried to unkink it, he poked a hole in my colon and had to remove part of my small intestine. In addition to that, he said the mesh they had used to fix both of my earlier hernias was all twisted around the colon near the stoma and he had to clean that up. I was full of scar tissue that he removed and cleaned up too.

After being in the hospital for 2 full weeks, he finally gave me the option to go home since we were fast approaching the holidays. I jumped at the chance because I knew that I could get some rest at home that I can't get in the hospital. It took me almost a month and a half to get to feeling normal. This whole situation was the worst thing I have ever had.

Now since I have had the original colostomy surgery, 2 hernia surgeries, 2 stoma revisions, and this last surgery my stoma is almost non-existent. It is so far an innie that I can't keep flanges in place more than a day without having poo leak under it. The doctor said the only way to fix it is to relocate my stoma. My problem there is I have a morphine pain pump that eats up my entire right side. It is a big circle about the size of a CD only about 1/2 inch or more thick. In order to relocate my stoma, the pain pump has to be relocated and the surgeries cannot be done at the same time. The colon/rectal doctor would like the pain doctor to swap sides and relocate the pain pump to the left side and stoma to the right. But with all the issues that I have with scar tissue the pain doctor doesn't want the pain pump anywhere close to where the old stoma is. He says the only options are to put the pain pump either in my back or in my buttocks. After massive amounts of radiation in an attempt to kill the cancer, I have no butt left to speak of. Several years ago, I had to see a plastic surgeon where they original surgery to remove my anus and rectum never healed. He eventually used a vacuum pump and got it to heal most of the way. I still have a small opening that never healed and it was too small of an area to keep a sponge inside to keep the vacuum pump working. At that time he advised that within the next 5-10 years I would be back to see him to have him implant my butt. He said that with the amount of radiation damage that I had along with the way my pelvic bones are located and the position where they rest that I will continue to break down much like a paraplegic. At the time, I just wrote him off as not knowing what he was talking about. It will soon be 5 years and I literally have no butt left. Even my panties just hang there because there is nothing to fill them out. So that only leaves my back for him to use. And the colon/rectal doctor doesn't want it to be placed in my back on the right side because he would be relocating my stoma to the right side and he said that I am so thin there isn't enough space to have both a stoma and the pain pump on the same side. So we are at a standoff. Neither of them wants to give in and there seem to be no other options. We ask if there are smaller pain pumps and I have the smallest one that is currently available. The doctors both agreed that after all of my issues and numerous surgeries they wouldn't do anything until at least 3 months after my last surgery. I still have about a little over a month before they will do anything but between now and then I have to get them in agreement or find a new set of doctors that can agree on something to get me better.

I told the docs that the insurance will only pay for 20 flanges a month so anything over and above that is out of my pocket and those of us that are using ostomy supplies know it is a costly thing to have to change flanges daily.

I guess I got off track about my problems, but I just wanted you to know that you are not alone in your struggles with blockages and none of them are good. Just hang in there and hopefully things will get better for you soon.

Loretta: Oh my goodness. I am so sorry you had such a bad experience. I've had an ileostomy for almost 40 years (this June) and have run the gamut with problems, also Crohn's Disease. I'm on my 5th stoma. I've been through all kinds of complications, mostly due it seems to adhesions. I had a blockage like you experienced, tube in for 24 hours, etc. All of a sudden it just broke loose. I was only a 1-year ostomate at the time. Went to the ER, vomiting, they sent me home! Finally at 3 am called my surgeon and he met me at the hospital - this was in Washington DC. One of my docs in later years said the first rule if you can handle it: NEVER go to the Emergency Room. I went in one time with a blockage and the ER doc said "What do they normally do for you when this happens?" I swear that is true.
I said please go find a doctor who knows about ostomies. It scared me - what if I had been unconscious? Geez. I told him order a flat plate abdominal x-ray, then get a doc. Should it happen again, ask for a colon/rectal surgeon if there is one. In my experience, they have been the best to know what to do. Even GI's don't always know. Over the years, I have also learned what foods to avoid. I stay on a fairly limited low-fiber diet. And being lactose intolerant, dairy is not good either unless it is non-fat and lactose-free. It's been a challenge. Fortunately, I love to cook.

I doubt they hated you at the hospital. But we have a tendency to frustrate the medical community. Even in the DC area, my gynecologist told me once that I was his ONLY patient with an ostomy -- and he had an enormous practice. So we have to be patient with them and our own best advocates. Unfortunately, I have become too good at that role and I aggravate a lot of doctors. But we know our bodies. Now I live in a smaller area and it's not easy. My last surgery had me flown to the Cleveland Clinic because even the docs in DC didn't know what to do anymore. That was 14 years ago and all is well. Whew. I have an occasional partial obstruction and when that happens, drink about 4 cups of hot tea in a row, take a hot shower, use a heating pad on your abdomen. I usually pop a Valium to relax the gut as I am allergic to pain meds (yes, it's true). Also, another good laxative is apple juice. My last surgeon was kind enough to share that with me and I even used it as bowel prep prior to surgery rather than that vile concoction they make you drink. About 2 cups of apple juice and I am cleaned out. However, this would only apply if you have no colon.

I wish you the best. Above all, try very hard not to live in fear. I've had Last Rites twice now, and here I am years following that, and turned 67 in December. Never thought THAT would happen! So what I do with it is volunteer at a local Hospice -- since I know what it feels like to be told you're going to pass (I was even told to get my Will ready) -- I think I'm pretty good at volunteering with dying patients.
I'm a big believer in the UOA credo: if life hands you lemons, make lemonade. I don't particularly like the saying, but it's true. Once you feel well again, join a support group in your area, if there is one. And get to know an ET. (Now they're called Wound Specialists)
ET nurses are our angels as far as I'm concerned. And try to find an ostomy buddy with the same surgery you've had. It helps.

My family was supportive, but no one can understand our problems but those of us who've been through the fire. No more than I could comprehend the loss of a limb.

Hang in there. The sun will come out again, and you will be able to live a fairly normal existence. I like to think that all I do is S*** differently. It's just from the front instead of the back. Don't let that stoma daunt you! It's your lifeline.

Joyce

LilyJ ... Joyce ... what a great post. Thank you a thousand times. I am going to get my family and support people to read this and all the suggestions. Nothing informs like someone who has been through and come out the other side.

Maybe we should each have a notebook with these things in it - 'at the ready'.

Carol

Wow, I am blown away at all you have been through and kudos for being willing to share it with us. I am on my knees before so many of you.

It is so nice to see how supportive and caring everyone is on here. I used to have chronic blockages, every six months, triggered by stress or food. I have not been in hospital for over ten years from a blockage and a big reason is a medication my doctor gave me years ago called Modulon. It's an anti-spasm medication which I take when I start to get symptoms a blockage may be starting. Just a suggestion, I know everyone has different issues and it may not work for you but it has been a life saver for me.

Hi Loretta, I went into the hospital in Vegas 2 years ago... In my experience, I have never had a big bore tube put up my nose for a gastric drain... Except in the U.S.A. Burst my blood vessels in my nose... I used several expletives and some force and made the medics take it out, and I sued the hospital for damages... In the UK... Thank God for free medical help... i.e. National Health Service... I have only had a tiny small tube put up my nose, and most times I do it myself... American health is overpriced for the service you get... I love America and its people... But the healthcare needs sorting out... So watch what you eat... And take care... Dan Butler... Oh yes, when I get blocked, I tell the medics, "This is how you treat me"... Morphine for the pain... Anti-spasmodics for cramps and something to stop me vomiting... Then leave me... After a while, the morphine makes your gut relax, and it all starts working again... See you Octobersunrise... Great name... I have a Navajo name...

I am now following this post because I want to know that things get worked out for you, Loretta. TG you are doing better. I know you have some tough decisions to make and I feel for your poor mom, too. And someone else said something about staying away from your ex. He sounds like a really toxic person and that's probably good advice. And Carol, you are so amazing! You are always right there for others on this site as are so many others (you, too PB)...you are all so great. I'm so grateful to have found this place. I'm praying for you, Loretta. I have a stoma because of cancer. No one has ever said anything to me about possible blockages. You all sound like it is something inevitable. Is that the case? I'm a little worried. Love you all!

Tamarah

Oh, sweetie, don't stress. It will make you sick. I know what you mean about the PTSD though. I still have it from my surgery and it was 3 years ago. I, too, have a fear, but of drowning. As you probably remember all too well, with the NG tube, they keep yelling at you to "swallow, swallow, swallow" while you are drowning in vomit, blood, and bile. I'll never get that tube again. I'll follow all the esoteric rules out there and avoid fruits and veggies with membranes and foods especially Ramen, with preservatives.

http://www.geekosystem.com/ramen-during-digestion/

You'll be okay. Get help for the PTSD. You can't live your life in fear and avoiding everything that may remind you of suffocating. I'm finally able to drive on the passenger side of the car without hyperventilating. But I honestly would be nowhere without Ativan. I take about 4 a day now and I hate that, but I know that until I get further past this last episode, I have to have it or my blood pressure will skyrocket. I'm not pushing meds. I just want everyone to do what works for THEM. And I want everyone to remember what Carol said, "When you don't know what to do, DO SOMETHING!" Call in all the help you can. I was too embarrassed. Hell, the gal I called to foster my pup, I had not spoken to in 40 years! She was more than happy to come right over and pick up my little baby.

God bless you, dear.

Hi again Loretta, after reading your post I got to thinking of the past when i was having so many blockages and the inevitable 'hose in the nose' and all that entails it took me awhile to adopt what Tommy practiced but the hell of it is for the first few times i had those blockages, it was only words to me, no explanations, just the tube, morphine and pray for passing out. But the biggest bitch I have today, as back then, there was no information given as to why and what happened, just you had a blockage??OK, fine, now what the hell do we do to prevent this in the future. You would think after all these years that anyone having any one of the surgeries we have had to go through when leaving the hospital you would be given a booklet with what to expect, what to do and what not to do. Were it not for this forum I would still be in the dark about a lot of problems I've faced. As a printer for over four decades i can remember printing pamphlets for people leaving the hospital for different ailments and surgical procedures, but for us, nada, figure it out yourself.And the strange thing is it was specialists that got me into all this trouble in the first place and it was a local surgeon who finally fixed my guts so I no longer have these problems and I don't mean to piss anybody off but I can and do eat anything i want today. So I guess the only advice I would give to anybody is to grab any and all information you can get your hands on, and before I forget we have a couple of nurses on our site and willingly give as much information as they can give and because they've been there you can trust them, so take care fellow ostimates and good luck, Ed

Hi Ed,

I was just thinking the same thing. There should be a little library or resource something on this site that we can go to. I know that means having a moderator and no one wants anymore to do than they already have to do just coping with life on a bag. But you could have knocked me over with a wet noodle when I found out that oranges are bad for us. I was eating them by the bushel as they are the only sweet thing that I felt I could get away with. But, no, that webbing around the meat of the fruit can be deadly. Where can I post Carol's Diet Card and Blockage Card? I get the willies every time I think that surgeon sent me home the first night saying, "There's a quarter-sized black thing in your belly, but we don't know what it is. Follow up with your PCP in the morning." I could have died that night in bed. I did follow up with my PCP in the morning and she said, "Get to the hospital right now. They are waiting for you to do a CT scan!" I remember saying, "I don't have a ride", but that's all I remember before passing out until I woke up in the ER vomiting and in the worst pain imaginable. Then, these dorks come in and start shoving hoses up my brain. I never knew I had so many tears. They were just cascading in sheets down my face and snot rolling off my chin. I begged for pain meds and they said, 'No, you have to be awake and alert for this to work." Well, it's over for now, but I still wish I could shout from the rooftops to ostomates, "Don't eat foods with membranes like cabbage and preservatives that won't break down in your system like Top Ramen!" If you feel a fullness in your belly, massage it gently, take a warm bath, take an Ativan, ANYTHING to relax the gut. Bring your knees up and roll gently from side to side. Call an Ostomy hotline. Don't wait till you haven't pooped in two days. And if the NEG is the ONLY resort, make them numb your nose and the back of your throat with lidocaine. Make them ice the tube so it's stiff and won't keep sloshing around your brain and behind your eyes. If you feel like you are going to vomit, MAKE them stop pushing till you can catch your breath. Get someone experienced, not some lackey working two shifts. And for God's sake, make them administer pain meds as soon as the tube is in. Also, insist on the same numbing spray as often as you can get it which is not often. Make them give you numbing throat lozenges. I would give anything to know what it was that your surgeon did to prevent future blockages. As you know, hernias don't go away, they just get bigger, and scar tissue just gets thicker, so I know I'm headed back for the OR in the near future, but hopefully, not too near.

In Nov. 2010, I had this sudden nausea. Initially, I thought it was peanuts that somehow didn't digest. This started around midnight; through the night, every 2 hours. I went to work thinking maybe a bug or something. Anyway, I drank nothing but a couple of cups of green tea that day; also thinking maybe it was some peanuts that somehow didn't digest. About 4:00 at work, I had a severe nausea session that left me suddenly and extremely weak. Consequently, I was rushed from work to the hospital via ambulance. After many tests and x-rays, etc., I was diagnosed with an intestinal obstruction. After being placed on an IV and liquid diet in an attempt to relieve the blockage, nothing worked. Then on day 6, to avoid surgery, I had the tube-down-the-nose-to-the-stomach routine. It was the longest 2-minute walk through hell I've experienced. Keep in mind I had my ostomy since 1997. A nurse had to leave the room because she said she could not watch. It took some time before I could talk. But the nurse said I handled it like a champ - yeah right. Anyway, it did not work, so I had surgery the next day. After the surgery, my doctor told me I was a walking time bomb. I was in danger of getting a perforated bowel AND my appendix was greatly inflamed. It was probably caused by scar tissue from my cancer surgery in 1997 and whatever else. I've had crazy symptoms of colitis - diarrhea and chronic pain since then. It's tough getting through this. But I hope it does not happen again.

Lily3, how do you do it? 5 stomas? What happened to make the relocations necessary?

Hi Tommy,

I wanted to use expletives, but all I could form was screams. They burst blood vessels in my nose and I looked like Russell Crowe in "Cinderella Man" for a week. My ear has only stopped hurting from the pressure in the last few days. The doctor yelled, "We didn't go anywhere near your ear," but I could see he was worried by the expression on his face and all the blood everywhere.

I am so sorry you had to go through that and so happy you gave 'em hell. You know, I could not understand why they did that when your treatment is exactly what the Blockage Card Carol Dawn sent me said to do. If, God forbid, this happens again, I'm taking it in with me and making sure they follow it. I am doing what you said and watching everything I eat. The blockage cleared and I am now back to regular BM's, after praying, fasting, and taking anti-spasmodics. Today, I ate a small bowl of Cream of Wheat and it felt fine.

You are so right, the healthcare here sucks! I can't believe the doctors and hospitals get away with what they do. Three years ago I tried to sue using the biggest Medical Malpractice Firms in CA and they were certain we had a case. But the defendant's ER doctors were able to squash the case stating that because I was not running a fever nor vomiting, they eliminated "acute diverticulitis" as a diagnosis and refused me a CT scan. They did this 4 times when I went to the ER with a level 10 pain! Anyway, I lost. The surgeon who saved my life and finally went in on an emergency basis against the other doctors' advice said he'd NEVER seen a person as infected and close to death as I was with absolutely NO fever. I have been following the new research now, though, and in the past two years, medical writings are stating there does NOT have to be a fever as a presenting symptom for the patient to be having an acute diverticulitis episode. So maybe my case helped some other people get help before it was too late.

Well, bye, Tommy, and thanks for the compliment on my username. My grandmother was a full-blood Mescalero Apache. I've added her photo and mine to my photos. Carol Dawn made me realize what a proud heritage I have, as I had completely set that aside years ago and have not even been to the reservation in many years. I just took back my maiden name this week. I did all the paperwork with Social Security, MVD, etc. even though I was not feeling too well. My anger at my ex spurred me on. He picked me up at the hospital, dumped me off here at home, and left me all alone to care for myself and my mom. I had to foster out my poor little pup for three days to strangers. I was too weak to even feed her. Anyway, sometimes anger is a positive thing. It can move mountains. So I am back to my birth name: Loretta Ann Montoya. You take care, Tommy, and I'm sorry I ran on so long, but your anger at your treatment by the American healthcare system gave me mouthfuls to comment on. Loretta

Loretta Ann Montoya is a beautiful name. It reminds me of an October sunrise over the mountains, with purple and orange hues greeting the horizon.

A beautiful name for a strong, independent and beautiful woman.

Hope you are doing better, still. Sounds like you are on your way.

Darla

Thanks so much, Darla. I guess we all have hills and valleys with this condition. I appreciate your thoughts and hope you just keep getting better, too. I can't wait to read the post where you say "everything is back to normal". What a wonderful carrot for the rest of us. Loretta

Hi, I had blockage last June, was in a lot of pain and finally went to the ER... Do yourself a favor and go to your own doctor (specialist) if it happens again... I had to have the surgery to fix the blockage... It was from the scar tissue from the first surgery that had herniated... Since I had the surgery, I am back to normal... My doctor fixed it so it will not happen again... I have a really great doctor here in NY if you need one... Good luck!

Hi Brook,

Thanks for that information. Those guys in the ER here sure didn't seem to know what they were doing. I have had little pangs of the same sort since, but swore I would not go back to the ER. It was my PCP who called me and told me to get to the ER NOW as they were waiting for me to do a CT scan. I called her yesterday to refer me to a GI or someone else who would know about Carol Dawn's Blockage Card and could treat me using that method. I will NEVER have that NG tube again. I will go into surgery before I let them do that barbaric treatment on me again. It almost killed me. It must have been invented by an Afghan torture team! And I am researching other hospitals now. I found one 90 miles from here that got A's and B's on GI surgeries and aftercare.
I'm going to call them next week. I'm thinking of buying a used little motorhome and moving up there for a while, as well. I could not believe that such a tiny town had such a reputable hospital and medical personnel. However, it is a wealthy tourist town, so I guess the demand drives the supply, like everything else here in the States.
Loretta

Hi, I had that same tube put down my throat too for 2 days. It was disgusting, but they have to put it down there for a reason even though it sucks... Good luck! Keep me posted! xo

Oh yes..many blockages..4 times tube..2 major surgeries in the past year since ileo..Now I am on total liquids..Even soup goes through a strainer since the last blockage in January..I will be going to a Philadelphia Dr in 3 days to see what is causing these blockages and where about it is..This is my last hope as I have been to every hospital in NJ and even NY..I am losing so much weight..I am only 114lbs now..an average of 1lb a week..The slightest solid thing gives me a blockage..no bread, pasta, crackers, meat, veggies..nothing..Insure and strained soup and watered down baby food..If these people can't help, I think I am done..I just don't have the strength anymore..I can't even drive or barely clean my house and take care of my pets..And oh yes, they are very rotten when they have to put that tube down your nose..They should all have it done..There has to be a better way they just don't want to do it..It is cruel..I would rather just stay on liquids and if I die I die.

Bunkie, who is the doctor in Philly? That's where I went for my surgery....

I have had too many NG tubes to count, and at this point can no longer handle the prep for colonoscopy or surgery so I ask for an NG tube to get the stuff down.

The trick I use is to insist on a pediatric NG tube and insist on 1-2 milligrams of Ativan IV prior to the attempt to put one down.

Oh yes, I've been through the torture of having an NG tube ripped out with no warning!

By the way, I didn't read all the numerous posts here, but...I have been irrigating my colostomy every morning since June 2009. I wouldn't have things any other way! I had one very serious blockage (due to raw pineapple) which kept me irrigating all through one day, but it finally cleared the blockage. At times I have trouble with mushrooms, but that's about it.

I am the world's greatest advocate for irrigating. If you are a candidate, I urge you to see your WOCN about managing your colostomy this way.

CAW. Sorry I'm so lax in reading my notifications! You ask, "How do you do it?" You just do what you have to do to live life as comfortably as possible. My second stoma was my favorite: it was definitely a TEN! When I awoke and saw this one, the 5th, I said, "OMG, I could hang my purse on this one." It prolapsed immediately and hangs over. But you know what? That was about 14 years ago, and I haven't leaked at all, and the skin around the stoma remains pristine. So I'm not complaining. Just have to be careful not to wear anything too tight, because I've done that and it cut my stoma. Also, I have to take my appliance off more carefully, because one time I cut the stoma in my hasty changing. I am Type A all the way. One thing for sure: having an ostomy has taught me great patience.

I am so sorry for your pain and sickness!

I didn't have an ostomy, but did have a total colectomy due to colon cancer.
For me, I have to regulate my diet to white foods which seem to break down easily, and I have to use Benefiber and Imodium to avoid constant diarrhea and cramping.

I also take Bentyl prescription to relax the stomach....not sure if that will work for you.

I am so sorry your treatment was so cruel. I have a great colorectal surgeon here in Boston at Brigham Women's/Dana Farber, but it sounds like you have been referred to Arizona and Texas docs already.

I hope you can be given pain meds and have liquids and nutrients that go through properly.

Hugs!

Bunkie, I have the best doc in Boston if that is not too far? Dr. Joel Goldberg at Brigham Womens/Dana Farber.

He did my total colectomy and as laparoscopically as he could, so less scarring, and unlike the doc I saw in CA, he said I didn't have to have an ostomy yet. I'm 59. He said when I am older, like in my mid to late 70s maybe.

Please check him out! He is responsive via email and phone and has a wonderful assistant.

Let me know if you need his phone.

Loretta,

I am just reading these posts, so I am late in letting you know how glad I am that you are better and how impressed I am with this group.

I, too, was trying to take care of my 90+ mom and was told, like you were, that it was either her or me. I ended up placing her in an assisted living situation on (what they call here in MN) an elderly waiver. It pays for everything for her. Now, I can visit and enjoy her company instead of just about killing myself trying to be her caregiver...

Susan

Hi Tommy,

Just wanted to see how you were doing? I have not had another blockage and have been turned down by two excellent surgeons for a reversal as they fear there is too much scarring over my vital organs to take the chance. Anyway, it is the 4th of July here again in the Alien City and it made me think of you. Hope you are well. Take care.

Loretta (Octobersunrise)

I have had a similar experience about a year ago. I had eaten an orange and about 15 whole wheat crackers. I went through the NG tube before but that was after surgery and I was doped up on pain medication. This time was very painful and I felt like a sissy at the time because all I did was cry. Looking back now and reading of your experience - I don't see myself as a sissy - it was a horrible experience. I hope that you are doing well and have had no repeats of your experience!