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I am BarbC's husband. She is not up to speed on the computer, yet. She has been quite debilitated since September 2010. She is just now getting to do routine things.
Her ileostomy takedown was on November 17, 2011, and the first few weeks it was diarrhea with the accompanying 'butt burn' due to clear liquid and then plain liquid diet and on to pureed food.
Then with regular food and the solidifying of the stood (somewhat) the BB went away and a routine set into place. The surgeon recommended Imodium to help with the solidifying and Citrucel to help 'bulk' the stool. Here at six weeks after takedown, she is starting to have some rectal bleeding. She is also experiencing nausea at mealtimes. She has no pain and she is not taking any pain pills.
We saw the surgeon on Wednesday. His comment about the bleeding was that some should be expected as the staples in the anal attachment moved every time that she had a movement and the staples cause some internal chaffing. He indicated that that would cease after the scarring took place. He also cautioned against 'straining' too much when having a movement.
Last night, the amount of blood picked up and this morning, she lost her breakfast -- not just nausea this time, but vomiting.
We do not suspect a blockage, since she has no pain or discomfort in her abdomen. Any suggestions or comments would be greatly appreciated. Has anyone out there experienced similar circumstances? How did you deal with the nausea at meals? One added comment -- she is on blood thinners due to DVT (blood clots) in her arm, which has me quite concerned with the bleeding.
If this nausea has been around for more than a few days then I definitely think you should call her GI or surgeon. Can you relate the onset to starting the immodium or citrucel (or any other meds?) At the very least they can help you figure out if there are any environmental triggers, do a stool culture to rule out c-diff (with the increase in blood) and prescribe anti-nausea meds if necessary. (My personal favorite is Zofran for helping to reduce the vomiting while not making me feel like a zombie.)
I hope she is feeling better soon!
Ulcerative colitis 5/09
Step 1 9-23-09
Step 2 1-15-10
Developed Gastroparesis 4/10
Gallbladder removal 6-17-10
I'm so sorry she is having all these problems. Nothing seemed to go by the textbook for me either. In addition to the advice above I have a few suggestions.
Is she being seen for surgery follow-up by her primary care doctor or internist? My internist was very helpful when I had post surgical problems. Some others do follow-up with their GI's. My experience has been that surgeon's cut and pass me off to my primary care doctor - after they do surgical follow-ups and make sure things are healing well.
The vomiting bothers me for several reasons specifically dehydration. That can make you nauseous and to throw-up, it happened to me quite a bit after my 1st surgery. Has she been having any headaches or muscle cramping? Is she drinking electrolyte replacement drinks? There are a lot of good ones out there. Drinking water alone is not enough. Coconut water is great, I usually add a little of another kind of juice to splash it up.
About not feeling well at meal time. I would suggest she eat bland foods and eat smaller meals instead of the usual 3. Other good things for the stomach are chicken or beef broth, plain old campbells chicken noodle soup, tea - warm things. The BRAT diet, bananas, rice, applesauce and toast is the basic diet they put people on when sick.
Could the rectal bleeding be because she is going so much? I still get that sometimes a year later. I didn't believe it but Charmin Ultra Soft TP is the best to use and just dab versus wipe. After the area is clean use something like calmoseptine cream around her bottom. It stings a little at first if the skin is cracked and bleeding but will help to clear that us. Also lots of sitz baths are a goof idea.
Please let her know she's in my prayers, you are too. Let us know how she;s doing.
~~~~~~~~I have not gone through all of this to give up now~~~~~~~~
A few other things as well.
Is she drinking enough water? When i do not drink enough, my stool gets to thick and i can bleed. As a result, i do not take any immodium or anything else that might bulk me up. The thicker i am, the harder things are to pass. I drink 90-120 ounces of fluid a day to help keep things easy.
second, there is a nasty stomach flu going around. It is hopefully just a coincidence. But i would hit the BRAT diet and start hydrating as much as possible.
Hope you get better soon
UC 22 years since 18
Step 1- April 29, 2010
Step 2- November 8, 2010
Step 3- May 2, 2011
Can't believe how i feel!!!!!
I thank everyone for their response.
The bleeding is consistent with ‘going’ way too often. The surgeon had said that she would be going 8-10 times a day. She is going about every hour that she is awake and she wakes at night about every two hours. The bleeding is not every time and it goes for several hours before she sees it again. Not a lot, but enough to know that she is bleeding -- mainly on the tissue.
She is keeping up with her liquid intake; she drinks in the neighborhood of 80 ounces a day – for her 101 pounds, the urologist says that it is a good amount and it may be a little high. At a minimum, she drinks twenty ounces of Gatorade (recommended by the doctor over Pedialyte for electrolytes). She drinks warm peppermint or orange herbal tea when she gets up in the morning and throughout the day will have a cup or two. She drinks three bottles of Ensure to supplement nutritional needs.
The nausea is probably a bad term for what happens to her. She will be eating and at some point, it just starts to come back up. That induces nausea. She takes a Tums (also recommended by the doctor when this occurs). They seem to help with the nausea, but it stops her cold as far as eating is concerned. It is not with every meal, but most of them and we have not identified any problem foods. She is not vomiting every time; it is more like acid reflux. It has come out several times, but not routinely.
Yes, we have encountered a lot of finger pointing as to whom we should turn. The surgeon passed us off to the primary care, who says that all of this is out of his field of expertise. When Barb had an infection at the incision site, the primary did not even recognize it as infection. I thought that it was at a beginning stage of infection, no red streaks emanating from the area, it was just a little too pink. When it erupted, we went to emergency and the wound was opened to drain; I am now dressing an open wound as well. At least I see a CWOCN weekly to monitor the progress.
We are looking for another GI doctor; the first one nearly killed Barb. She kept up with medications long after she should have turned the case over to the surgeons. There was a rupture in the colon and an abscess had formed attaching the colon to the ovaries.
This is way too much for a forum; I guess that I needed to vent a little.
I will be going over the suggestions in the next few days. I really appreciate the inputs.
This is what the forum is for, venting is allowed and done quite often.
Did they do blood tests on her to see if she had an infection and or any other items out of wack - Vit D, B12, Iron, etc. My Internist, primary care doctor, does my blood tesing. Or the doctor that has her on the blood thinning medication.
I was told by my surgeon my incision drainage was normal and he cancelled a biopsy of the drainage my Internist had collected for testing. I ended up having a big abcess growing under the incision.
Pepto Bismol might help with the nausea, I chew 2 tabs twice a day for other reasons and they help nausea. also saltine crackers help me alot as well.
Preparation H is ok to use and can be inserted just inside the anal opening. Maybe that would help the bleeding too.
Gaytorade has a lot of sugar and food coloring in it. I take NUUN, that I order directly from them. It's tablets that disolve in water. It is available in some retail stores that you can look up on their web site. A lot of people here use Pedialyte and the WHO (world health organizatoin) powder too. If you do a search there are several discussions on here about drinks for dehydration.
Coconut water is a good natural one too. You might need to flavor it with a little of another fruit juice to make it taste better as well.
In case you haven't searched before you go to the forums page and find the magnifying glass with the word "find"?
Is she on an antibiotic, flagyl makes me nauseaous?
I hope she is feeling better soon.
~~~~~~~~I have not gone through all of this to give up now~~~~~~~~
When she was fighting the original abscess, after her initial surgery, she was receiving Flagyl and had no trouble with it. But, she was not eating solid food at that time. After we thought all the pain and suffering was over, she could not stay hydrated and it became apparent that she had more infection than the little abscess they found originally. There was a puddle of abscess in the abdominal cavity in the pelvic area. She had a drain pigtail installed that was horribly painful and it remained for several weeks. Then the bout with infection ended. Her eating was restored to the ileostomy diet. She was still on Flagyl at the time and solid foods made her ill. The doctor changed the antibiotic taking her off Flagyl and her symptoms went away.
Then came the takedown surgery. For two weeks she was on liquids first only clear, and then pureed foods. She had no trouble with them. Again everything looked like we were out of the woods. She graduated to solid food. Then the only problem was that she could not eat much – with her stomach shrinking from all the lack of use over the last five months.
Then the abscess beneath the stitches made itself apparent with a nasty eruption between the stitches. On the day before Thanksgiving, they removed the stitches and opened the wound to drain. The wound is fast closing and there does not appear to be any infection at the site. There is a little undercut at the top of the wound, that is moist, but not really doing much draining. I hope that the undercut closes in before the opening sealing it does. Otherwise we are looking at having the surgeon open the wound to complete the inside out healing. Then two weeks ago, this problem started. Oddly, it is not every meal and it is not any specific food.
So, she is not taking any medicine that we know to have side effects of nausea. The anticoagulation clinic sends out a mobile phlebotomist every other week to draw blood, but that is to verify that her INR is in the range they want to help with the blood clots. I suspect that they would notice if the white count was out of kilter, or, if she had an infection resent.
She had very little dinner last night, but she did eat a little without incident. I will check into the drinks that you mentioned, especially NUUN. Coconut water is out; she hates the taste of coconut, one of my favorites.
I had best stop this ‘book’ for now. Again thanks for your response.
Dehydration can cause nausea similar to how you describe. Drinking Gatorade is probably very bad as it is very sugary, causing more output, and can also increase her dehydration. And then once you become that dehydrated.. its like a vicious cylce, because you can't eat.
Try very small meals several times a day to see if that helps. Just a few bites of chicken and rice. Or peanut butter on half a piece of bread.
There are relatively harmless anti-nausea meds. Seems like a she needs to see a good GI.
We are using the low sugar G2 series to reduce the sugar, but we need to keep her electrolytes up. Any suggestions on what is best to do that? I am still looking at the NUUN as a substitute.
Two of our slew of doctors recommended Gatorade over other drinks.
G2 is still very sugary. There is a recent post on dehydration somewhere.. check it out.
Thanks. I checked out the latest posts and they make sense. Barb has no other symptoms of dehydration, but I want to get on top of this before it means a visit to ER. I have stopped the Gatorade for now and I am switching to more water. I want to try the NUUN, which has no sugar and plenty of electrolytes.
I buy this water called Essentia it tastes just like water and has electrolytes in it and is a pH of 9.5
Mom of Rowan (4) UC
Protocolectomy April 17, 2012
Take down June 23, 2012
I just want to clarify that gatorade is what you need for dehydration. Although it tastes sugary it actually does not have that much sugar. It helps to restore the diffusion gradient, as water cannot diffuse into the cell if the cell does not first contain the necessary electrolytes. Gatorade has put thousands of dollars into researching their product so that it prevents dehydration. That being said, you don't need to replace every water bottle you drink with gatorade, but it is important if you feel you are becoming dehydrated or if you get the flu. I know this is an older post, I just wanted to clarify for future reference. This information also aligns with current best practice.
We tend to forget that happiness doesn’t come as a result of getting something we don’t have, but rather of recognizing and appreciating what we do have.
I guess that I should have come back with an update and closed out this thread. I am glad that I did not close it out, or I would not have gotten the last two posts.
Gatorade was the element that kept Barb hydrated. Nutrients were provided by Ensure Plus – not an endorsement, just our course of action.
After an endoscopy and a stomach emptying test (which involved radiated turkey sandwich on an otherwise empty stomach) in January and February, it was determined that Barb had Gastroparesis. That was the major contributor to the nausea and vomiting. The test showed that instead of 45 minutes to an hour, her stomach was still nearly full after 90 minutes. The doctor said that it could be a case of traumatized nerves (from the initial surgery). In such cases, the recovery would not involve more surgery. The doctor told us that sometimes the condition goes away and in the meantime to eat small and frequent meals. All of that worked quite well. Barb is eating almost anything that she once did -- without any trouble.
In the following months, Barb developed other problems, the worst of which is Polymyalgia rheumatica (severe joint and muscle pains that had her debilitated to the point of not being able to get out of bed alone). She is taking Prednisone for that and the pain is all gone. We are now on the dosage reduction cycle and she does not seem to be having pain breakthrough. So, she is recovering nicely. Her energy level is returning. We are getting into a routine very close to what we had over two years ago -- before she was hit with the UC. She still gets tired easily, so she naps if we plan to go out for the evening.
Now, her goal is to get her J-pouch trained so that she can sleep a little more of the night. She is getting up three to four times a night. She is ‘going’ about fifteen times a day, but diarrhea is getting to be a rare happening.
Thank all of you who had added to this thread.
Stan (Mr. BarbC)
Thanks for the update Stan. Polymyalgia rheumatica is horrible, my step-mother has it. I'm glad she is doing better with treatment.
It seems as many of us end up with more than one autoimmune disease/disorder. I have fibromylgia along with the UC.
It turned out, when I was giving you two advice above, that I had cuffitis - which I found out about mid January at my first annual scope. then discovered I had a C-diff infection, which was causing blood in my stools etc. It' was Months, 2 GI flex scopes and a Mayo trip later it appears as it's chronic.
~~~~~~~~I have not gone through all of this to give up now~~~~~~~~
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