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May 19, 2024 3:10:43 GMT
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Post by Deleted on Jul 1, 2016 23:51:22 GMT
Ok, so about 4 weeks ago my husband had another "flair" with whatever is ailing him. He is having several bloody bouts of diarrhea every day. The ones closer to the end of the day are mostly just blood. He will feel fine one minute, then the next completely exhausted. He is cramping and sometimes gets so tired he is out of breath. Other than this he is a healthy 43 year old.
He has met with his dr who did a colonoscopy and found no tumors or polyps. He also said there was no sign of Crohns or Colitis, but did send him home with an antibiotic (flagyl) that after a week was not helping so he put him on a steroid pack. It has not helped either.
4 years ago we went through the same thing except it was between Thanksgiving and the new year, and finding someone to see him was not happening. We eventually took him to the e/r after he passed out in the shower. He was in the hospital for 5 days on iv fluids, antibiotics, steroids and a blood transfusion. There was never a diagnosis given. They all seemed stumped and chalked it up to a good run of bad luck. But here we are again.
I know that if within the next week we dont get some help, he will be back there again. I can only imagine the amount of blood he is losing. It looks to me like every time he has a bm he is losing the same that we would lose on a very heavy flow day. And this is several times a day, like 7 plus.
Any advice?
**So he finally got a diagnosis of ulcerative colitis today. They have given him medication to put him into remission. There is no cure, and only time will tell how often he has a flair. Once we get to see the specialist she will tell us of any diet changes that need to be made to prevent a flair, if there is anything we can do to prevent it.
In the meantime, the medicine (Apriso) is like $480.00 a month and he does not have rx coverage! That is going to take a chunk out of the budget, but hopefully this will get him back to normal. Thanks everyone!
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Post by Zee on Jul 1, 2016 23:57:55 GMT
I don't know but I think he should be seeing a different GI specialist and if he's bleeding that much right now, I'd take him to the ER.
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lesley
Drama Llama
My best friend Turriff, desperately missed.
Posts: 7,180 
Location: Scotland, Scotland, Scotland
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Post by lesley on Jul 2, 2016 0:00:05 GMT
I'm sorry I have no advice, as you both must be so worried. I really hope you get some answers very soon - what he is experiencing is so not normal.
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IAmUnoriginal
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Jun 25, 2014 23:27:45 GMT
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Post by IAmUnoriginal on Jul 2, 2016 0:04:24 GMT
Diverticulitis?
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Post by Zee on Jul 2, 2016 0:04:37 GMT
And I don't know if you have a choice or have to worry about being in network for insurance reasons, but I'd take him to the biggest hospital around just to increase the odds that they'll have a specialist on call this weekend. Being a holiday weekend, the chances of them just keeping him stable and letting it wait until Tuesday are large. They might even just check him out in the ER and tell him to see his doc on Tuesday, but at least you'll know if his blood counts are dangerously low, if he needs IV fluids, etc.
I hope someone gets to the root cause soon, poor guy.
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Post by peasapie on Jul 2, 2016 0:06:01 GMT
I wish I had some idea. All I can think of is a food allergy, but that sounds more severe than any allergy I've known of. Poor thing needs something to calm his intestines.
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Post by hennybutton on Jul 2, 2016 0:10:52 GMT
Was it his primary care doctor who did the colonocopy? Or, did he get referred to a gastroenterologist? He needs to be under the care of a good gastro.
I believe Flagyl is an antifungal drug, not an antibiotic. Did the doctor run any tests that made him conclude an antifungal was in order? Or, did he just prescribe it because he didn't know what else to do?
Frankly, I'm really pissed off that the doctor isn't doing everything in his power to find a diagnosis. Your husband's symptoms are every bit as serious as chest pains.
In my experience, you sometimes have to be very persistent and insistent with doctors. In this case, make sure you ask for copies of all test results, read them, and research anything you don't understand. When the doctor prescribes a medication, ask why it's being prescribed, how it works and how long it should be before it takes effect. Confirm the information with the pharmacist.
I have no idea what is wrong with your husband, but I hope you get answers soon.
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Post by Zee on Jul 2, 2016 0:14:38 GMT
Was it his primary care doctor who did the colonocopy? Or, did he get referred to a gastroenterologist? He needs to be under the care of a good gastro. I believe Flagyl is an antifungal drug, not an antibiotic. Did the doctor run any tests that made him conclude an antifungal was in order? Or, did he just prescribe it because he didn't know what else to do? Frankly, I'm really pissed off that the doctor isn't doing everything in his power to find a diagnosis. Your husband's symptoms are every bit as serious as chest pains. In my experience, you sometimes have to be very persistent and insistent with doctors. In this case, make sure you ask for copies of all test results, read them, and research anything you don't understand. When the doctor prescribes a medication, ask why it's being prescribed, how it works and how long it should be before it takes effect. Confirm the information with the pharmacist. I have no idea what is wrong with your husband, but I hope you get answers soon. Actually Flagyl is commonly prescribed for bloody diarrhea as it's a simple fix IF it works, depends obviously on the cause but it's a valid rx to try for this. Both for humans and, don't laugh, my cat has IBS and chronic colitis and takes Flagyl every day to help control his bloody diarrhea. He's a hot mess without it. |
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Post by jemmls4 on Jul 2, 2016 0:23:38 GMT
It sounds like all the symptoms I had when I was a kid. Took many flare ups, hospitalizations and trips all over the country to finally be diagnosed with ulcerative colitis. While seeing all these docs my parents were told that a 10 y.o. "Doesn't get ulcerative colitis". But that's what it was.
I would do as others suggested and find a GI at a larger medical center and have your DH re-evaluated. You're really in a tough spot with the holiday weekend. You are your DH's best resource and advocate. Keep searching until you get an answer. That what my mom did for me...docs kept saying I was anxious, it was food, I worried too much etc.
Theres a reason they can it "practicing medicine". In the meantime I'd keep him hydrated with Gatorade and a super-bland diet if he can handle food. Avoid caffeine and I'd also have him stay away from anything with red dye. If his symptoms get bad enough and he has to go to the hospital and have another colonoscopy, you don't want the red dye to throw things off. You probably recall that from his previous colonoscopy (I've had 52 so I know the drill😜).
Good luck and I hope you get some answers soon!
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Deleted
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May 19, 2024 3:10:43 GMT
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Post by Deleted on Jul 2, 2016 0:23:42 GMT
I would say diverticulitis also. My mom suffered with that. I know the Dr's have to specifically for that.I hope you find answers soon. I can not imagine how scared you and he must be.
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gsquaredmom
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Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jul 2, 2016 0:24:31 GMT
Disclaimer: not a doc.
Red blood or black tarry looking?
Did they check his entire tract including stomach and small intestine? CT scans. MRIs?
ruled out things like ulcer, Ibs, cholitis, tumor?
Has he travelled in the last 25 years to any place like India, Africa or another place with parasites? Based on some experiences with my husband, if your DH has traveled to these places, I would be looking for a doctor/gastroenterologist who is actually from one of these countries. My husband had a parasite lay dormant for twenty years, then had diarrhea and bleeding. Several American docs missed it. An Indian doctor pegged it right away.
A less obvious specialist would be an infectious disease doc.
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Deleted
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May 19, 2024 3:10:43 GMT
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Post by Deleted on Jul 2, 2016 0:39:08 GMT
Thanks everyone for your replies. I just have to tell you that I was just googling doctors in the large metro area close to us and found a gastro doc. The name? Dr Annis!  I thought the rpeas would enjoy that! |
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Deleted
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May 19, 2024 3:10:43 GMT
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Post by Deleted on Jul 2, 2016 0:41:05 GMT
Disclaimer: not a doc. Red blood or black tarry looking? Did they check his entire tract including stomach and small intestine? CT scans. MRIs? ruled out things like ulcer, Ibs, cholitis, tumor? Has he travelled in the last 25 years to any place like India, Africa or another place with parasites? Based on some experiences with my husband, if your DH has traveled to these places, I would be looking for a doctor/gastroenterologist who is actually from one of these countries. My husband had a parasite lay dormant for twenty years, then had diarrhea and bleeding. Several American docs missed it. An Indian doctor pegged it right away. A less obvious specialist would be an infectious disease doc. Totally bright red. No ct or mri. He said no ulcers, tumors, polyps and no signs of colitis or crohns. We have never traveled to any of the above countries and had never been out of the US when his first problem arose 4 years ago. |
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Post by lurkingsince2001 on Jul 2, 2016 0:52:57 GMT
The fact there was no testing beyond a colonoscopy would concern me. Not to cause trouble or anything, but didn't 2peafaithful go through something similar with her oldest just a few months back? Maybe she has some insight. If not, I apologize. |
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Post by christine58 on Jul 2, 2016 0:53:54 GMT
The fact there was no testing beyond a colonoscopy would concern me. Not to cause trouble or anything, but didn't 2peafaithful go through something similar with her oldest just a few months back? Maybe she has some insight. If not, I apologize. She did..hoping she checks in |
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Post by pierkiss on Jul 2, 2016 1:06:06 GMT
You need to find another doctor. I don't know what this is, but bloody stool everyday for weeks on end is absolutely not normal and needs to be taken seriously by the doctors. I'm so sorry you guys are having to deal with this! So scary!
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gsquaredmom
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Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jul 2, 2016 1:11:09 GMT
Did they check for hemorrhoids and anal fissures? Bright red usually means not a long residence time, so more likely colon or rectum, I believe.
My DH has diverticulosis/itis. He never bled.
My vote is see a good gastro person at a major hospital.
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Post by knit.pea on Jul 2, 2016 1:22:04 GMT
My son was put on Flagyl as treatment, as a toddler. It was for C-diff.
Long story, including withholding going, but he visited a petting zoo and swam in a brand new pool (chlorine).
My uneducated guess has always been the swallowed chlorine pool water wiped out all his intestinal bacteria (good and bad) and allowed whatever he picked up at the petting zoo (bad bacteria) to take over.
Withholding then also allowed way more time for the bad bacteria to stew.
He had to be on probiotics whenever he was put on an antibiotic, for years after that.
Just a few things to consider as possibilities.
Hope he gets well soon.
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Post by gailoh on Jul 2, 2016 1:38:44 GMT
I don't know but I think he should be seeing a different GI specialist and if he's bleeding that much right now, I'd take him to the ER. I agree.... |
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Post by mcscrapper on Jul 2, 2016 1:47:35 GMT
I just did a clinical rotation for NP school with the big GI group. Bright red blood is more indicative of a hemorrhoid or anal fissure. Darker blood would make me think more upper GI bleed.
If he is feeling weak and short of breath he needs to go to the ER and have some blood work done. He may be a pint or two low. It is possible the diarrhea is causing some dehydration symptoms but any shortness of breath is concerning to me for low hemoglobin and hematocrit.
Keep us posted.
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Post by mikklynn on Jul 2, 2016 12:29:16 GMT
I agree with the others who suggest a major medical center for additional tests and a diagnosis. Don't hesitate to go to the ER.
Keep us posted.
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Post by katlaw on Jul 2, 2016 14:59:55 GMT
I had similar symptoms. I had a colonoscopy and they found one tiny polyp which was not the cause of the symptoms. This was followed up by a Esophagogastroduodenoscopy. A sample of my stomach lining was removed and tested. In the end I was diagnosed with Celiac disease.
I would not be happy with a doctor who found nothing before and did not keep looking.
I agree with the Peas who suggest you find a good gastro doc.
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Post by petenthusiast on Jul 2, 2016 17:50:14 GMT
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mlana
Pearl Clutcher
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Post by mlana on Jul 2, 2016 18:20:15 GMT
I have internal and external hemorrhoids and diverticulitis. The div did not cause any bleeding, just swelling and pain. It was diagnosed by a CT scan with ingested contrast.
The hemorroids bleed frequently and have for years. Any time I have diarrhea, my roids kick in. It's not unusual for them to continue bleeding even after I've passed all the feces. (Sorry!).
Is your husband doing anything to treat the hemorroids? Preparation H is great for the internal ones, as well as the external. He could try it while y'all continue to look for a dr. I wouldn't stop looking for a better gi even if the PH helps because you need to know for sure that this is what the problem is.
Marcy
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smcast
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Post by smcast on Jul 2, 2016 23:29:40 GMT
Sounds like ulcerative colitis. They should do a stool sample for various culprits, colonoscopy, and move on from there if no results. Sometimes capsule endoscopy to find out if something in the small bowel is acting up. Bright red blood is lower in the track, though. Take him in, this is not ok.
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zella
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Post by zella on Jul 3, 2016 1:05:33 GMT
Disclaimer: not a doc. Red blood or black tarry looking? Did they check his entire tract including stomach and small intestine? CT scans. MRIs? ruled out things like ulcer, Ibs, cholitis, tumor? Has he travelled in the last 25 years to any place like India, Africa or another place with parasites? Based on some experiences with my husband, if your DH has traveled to these places, I would be looking for a doctor/gastroenterologist who is actually from one of these countries. My husband had a parasite lay dormant for twenty years, then had diarrhea and bleeding. Several American docs missed it. An Indian doctor pegged it right away. A less obvious specialist would be an infectious disease doc. I knew someone who had recurrent bouts of gastroenteritis for many years after visiting India and getting dysentery. What you are describing is NOT NORMAL OR ACCEPTABLE! Is it possible the blood is from hemorrhoids or a fissure? Either one can cause large amounts of bright red blood. And diarrhea can lead to hemorrhoids and fissures. Was his stool checked for parasites, bacterial infection (e-coli leads to bloody diarrhea), viruses (MRSA comes to mind)? Was he told he could use immodium? Has he used it? When my diarrhea is very bad I have to take immodium at much higher than normal doses. Not suggesting this as I'm not a dr, but it can be done. There's also another drug for very severe diarrhea that is by prescription (lomotil). Depending on the cause, using drugs to stop the diarrhea may or may not be the correct thing to do, which is why it's really important to know the cause. With this amount of both fluid and blood loss, he probably needs IV fluids at the very least. Don't hesitate to go to an ER; severe diarrhea like this can quickly become an emergency. |
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scrapngranny
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Post by scrapngranny on Jul 3, 2016 3:51:20 GMT
My DH has diverticulitis and has many spontaneous bleeds with little or no pain. He just got out of the hospital week before last from one. One time he needed 9 units of blood before it stopped. Most of the time the bleeding stops on its own before he needs a blood transfusion. He has bright red blood, clots and diarrhea when he has a flare. He always goes to ER when he starts to bleed and they always admit him. He has nothing by mouth until the colon has had a chance to rest and heal itself.
He has diverticulosis throughout his entire colon, so removed the affected portion of the colon is not an option.
Hope you DH finds an answer soon.
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Peamac
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Post by Peamac on Jul 3, 2016 7:23:51 GMT
A lot of that sounds like my FIL and his diverticulitis or diverticulosis.
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Post by genny on Jul 3, 2016 12:45:58 GMT
DS (then 18) went though something similar last year. Diahrea for days and days with bright red bleeding. We at first though it was food poisoning (he'd had Taco Bell the day before it started) but then it didn't stop. He missed several graduation activities and a lot of work and was miserable - he couldn't stay off the toilet. I had to buy baby wipes for the poor thing he was so tender and inflamed while we waited to see the gastro, which was a 2 weeks from the time we were referred. He took Imodium during that time and it helped but did not stop it completely.
The gastro ordered a colonoscopy right away and said his colon was normal and completely healthy looking, but he took a biopsy while he was there for good measure. DS was diagnosed with lymphocytic colitis, which can only be found via biopsy and has on been 'discovered' and named in the last 7 or 8 years I think. He took a 3 month course of steroids which stopped the diahrea and bleeding. He hasn't had a flare up since he stopped the steroids but the dr warned us it could start up the day he stopped the steroids, in 4 days, 4 months or years from now. THere are no known causes, triggers or cures and he didn't fit the commonly known profile for the disease - not even one aspect of it fit him.
I hope you find answers soon, keep pushing and don't give up. Iknow how miserable it is for him and you both!
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Post by genny on Jul 3, 2016 12:46:13 GMT
DS (then 18) went though something similar last year. Diahrea for days and days with bright red bleeding. We at first though it was food poisoning (he'd had Taco Bell the day before it started) but then it didn't stop. He missed several graduation activities and a lot of work and was miserable - he couldn't stay off the toilet. I had to buy baby wipes for the poor thing he was so tender and inflamed while we waited to see the gastro, which was a 2 weeks from the time we were referred. He took Imodium during that time and it helped but did not stop it completely.
The gastro ordered a colonoscopy right away and said his colon was normal and completely healthy looking, but he took a biopsy while he was there for good measure. DS was diagnosed with lymphocytic colitis, which can only be found via biopsy and has on been 'discovered' and named in the last 7 or 8 years I think. He took a 3 month course of steroids which stopped the diahrea and bleeding. He hasn't had a flare up since he stopped the steroids but the dr warned us it could start up the day he stopped the steroids, in 4 days, 4 months or years from now. THere are no known causes, triggers or cures and he didn't fit the commonly known profile for the disease - not even one aspect of it fit him.
I hope you find answers soon, keep pushing and don't give up. Iknow how miserable it is for him and you both!
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I thought the rpeas would enjoy that!
Refupea #39
