Crohn's Disease Forum » Your Story » Strange, Unpleasant Symptoms? Any Feedback?


 
02-08-2018, 11:21 AM   #1
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Strange, Unpleasant Symptoms? Any Feedback?

So I've been hit with symptoms since July 2017 such as loss of appetite(happened first), weight loss(around eighty pounds), nausea, vomiting, chronic diarrhea, profuse sweating, fatigue, weakness, and most important of all everyday life has become a challenge. A lot of the time throughout the day I'm in bad pain, puking(or going to the bathroom), no desire to eat(I sometimes puke and except for a stretch of two days have had diarrhea). Yesterday for example...it was impossible to get out of bed knowing I had the day off and I spent the day vomiting and having diarrhea...Which really wears me down. I've never noticed any blood, and admit I don't really inspect my bathroom trips. The only blood work that was off was my serum calcium was slightly elevated at 10.8. It was thought I perhaps had hyperparathyroidism, however, the PTH test was normal... I was referred to the Gastroenterologist and since my Dad and paternal Grandmother had IBD, along with my symptoms, the Dr. scheduled me for the upper and lower scopes, as well as some test for the small intestine if the scopes turn up nothing.

The confusing part is certain symptoms according to what I've read don't point to either IBS or IBD. Symptoms not matching IBS as far as I can tell are unintentional weight loss, vomiting, and loss of appetite. As for IBD, I don't have any visible blood in the stool, my CRP level was normal, and as such, there is no sign of infection. I also had a stool culture to test for bacteria, viruses, and parasites, which was normal. I didn't go to the doctor at first as the loss of appetite was welcome as I'm severely overweight. I also didn't go to the doctor as I had similar symptoms years ago and was told it was anxiety...So I figured why waste money on going to the doctor to be told what your experiencing is all in your head? (even though I wasn't anxious when this happened years ago and I'm certainly not now =P ). If anything I'm frustrated that I waited so long to go in and annoyed by the symptoms being so hard to manage.

With all this being said...I know y'all are the experts on this side of things and was wondering for any feedback? Does this sound like possibly Crohn's disease(I have serious doubts as I've seen no blood and the inflammation CRP test didn't say I have some kind of infection...but all the other symptoms seem similar? Is it possible if the scopes turn up nothing I should inquire possibly about being tested for food allergies? The scopes are on the February 23rd and will both be done on the same day, so luckily that isn't too far away. Anything I could try in the meantime to help with the abdominal cramping, throbbing, pulsating sensation? (on a scale of 1-10, it's anywhere from an 8-9. When it's really bad it only gets a nine because of my chronic kidney stone issues...).
Thanks for any advice you may have! I appreciate anyone and everyone who takes the time to read this =). (by the way, I'm twenty-eight years old)
02-08-2018, 11:32 AM   #2
Scipio
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The confusing part is certain symptoms according to what I've read don't point to either IBS or IBD. Symptoms not matching IBS as far as I can tell are unintentional weight loss, vomiting, and loss of appetite. As for IBD, I don't have any visible blood in the stool, my CRP level was normal, and as such, there is no sign of infection.
It's very common for IBD patients to not have elevated CRP. Some sources say as many as 25% of Crohn's patients have normal CRP levels, including me. The same could be said for bloody stool. Not every Crohn's patient shows that. But the weight loss certainly is common for Crohn's, and the vomiting could be triggered if you have a blockage or partial blockage of the gut due to build up of scarring.

So I'd say it's not yet certain what you have, but IBD is not out of the running. Your upper endoscopy and colonoscopy will be crucial in determining what's going on down there.
02-08-2018, 12:41 PM   #3
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I agree with Scipio. Not everyone is the same. You may or may not have ibd. It doesn't have to be but there might be a greater chance of you having ibd became you have relatives who have ibd. Let us know how you are
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02-08-2018, 01:20 PM   #4
Jabee
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It certainly sounds like something is going wrong in your GI system. My CRP is only raised when Iím very ill (as in hospitalized), so normal blood work may mean nothing. I also suffer from constipation rather than diarrhea since the crohnís is located in my small intestine. Eighty pounds is a significant weight loss so itís good that youíre getting a work up. Your upper and lower scopes wonít show your entire intestines, and with the amount of pain you are in you should have the rest of your small intestine imaged. Your GP might be able to prescribe an anti-spasmodic that might help with the pain, but Iíve not found them to be particularly helpful. You should avoid ibuprofen, unfortunately, and I donít find Tylenol very helpful. I would definitely check in with your GP about the pain. GIs donít usually want to deal with that.
02-08-2018, 01:44 PM   #5
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From what I've been reading, everyone's symptoms are different. My only symptoms were severe pain and extremely loud rumbling in my intestines. I have Crohn's. Even though you may not check off all the IBD boxes you could still have IBD.

In addition to the scopes, I also recommend an MRI or CT scan.

For the pain, I had been given dicyclomine (Bentyl is the brand name). It did nothing for me, but was supposed to stop painful cramping. My GI at first told me he wouldn't prescribe pain medicine, but then gave me a prescription for Tramadol. I had already had some of that leftover from when I had my gallbladder removed and it did nothing for my intestinal pain. I filled the prescription but never took any. Shortly after, I was put on prednisone and that worked like a charm. I haven't had any pain since.
02-08-2018, 03:20 PM   #6
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It's very common for IBD patients to not have elevated CRP. Some sources say as many as 25% of Crohn's patients have normal CRP levels, including me. The same could be said for bloody stool. Not every Crohn's patient shows that. But the weight loss certainly is common for Crohn's, and the vomiting could be triggered if you have a blockage or partial blockage of the gut due to build up of scarring.

So I'd say it's not yet certain what you have, but IBD is not out of the running. Your upper endoscopy and colonoscopy will be crucial in determining what's going on down there.
Hi, Scipio and thanks for the reply. Thanks for all the information you provided in your reply and I certainly appreciate it! It's good information and I appreciate it! =)
02-08-2018, 03:25 PM   #7
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I agree with Scipio. Not everyone is the same. You may or may not have ibd. It doesn't have to be but there might be a greater chance of you having ibd became you have relatives who have ibd. Let us know how you are
Hi Ronroush7 and thank you for the reply and information on the family history side of things. I appreciate the feedback and will let everyone know what is found after these tests are completed.
02-08-2018, 03:44 PM   #8
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It certainly sounds like something is going wrong in your GI system. My CRP is only raised when Iím very ill (as in hospitalized), so normal blood work may mean nothing. I also suffer from constipation rather than diarrhea since the crohnís is located in my small intestine. Eighty pounds is a significant weight loss so itís good that youíre getting a work up. Your upper and lower scopes wonít show your entire intestines, and with the amount of pain you are in you should have the rest of your small intestine imaged. Your GP might be able to prescribe an anti-spasmodic that might help with the pain, but Iíve not found them to be particularly helpful. You should avoid ibuprofen, unfortunately, and I donít find Tylenol very helpful. I would definitely check in with your GP about the pain. GIs donít usually want to deal with that.
Hi Jabee and thank you for your reply and information on the CRP levels, your symptoms, and the suggestion about the CT scan/getting the rest of my intestine looked at. I remembered after I saw your post that I actually had a scan for something else two or so months ago. I had a kidney stone and besides another kidney stone in my left kidney, they said it looked normal. I also have a full month script of Tylenol with codeine prescribed for me in case the other stone dropped and I could call and ask if I could use that if I really, really need it for the pain, at least until the scopes and having a clearer picture of what is going on. As far as the small bowel this is what he is going to do, "Next of will be wireless capsule endoscopy versus CT enterography to evaluate small bowel".
02-08-2018, 03:55 PM   #9
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From what I've been reading, everyone's symptoms are different. My only symptoms were severe pain and extremely loud rumbling in my intestines. I have Crohn's. Even though you may not check off all the IBD boxes you could still have IBD.

In addition to the scopes, I also recommend an MRI or CT scan.

For the pain, I had been given dicyclomine (Bentyl is the brand name). It did nothing for me, but was supposed to stop painful cramping. My GI at first told me he wouldn't prescribe pain medicine, but then gave me a prescription for Tramadol. I had already had some of that leftover from when I had my gallbladder removed and it did nothing for my intestinal pain. I filled the prescription but never took any. Shortly after, I was put on prednisone and that worked like a charm. I haven't had any pain since.
Hi, CallieS and thanks for the reply and advice! I accidentally though it was the member above that mentioned the MRI or CT scans. I apologize, the Dr. plans on doing this, "Next of will be wireless capsule endoscopy versus CT enterography to evaluate small bowel". So the CT scan was alright except the other kidney stone in my left kidney *thank God that hasn't dropped yet...as the pain of that last time really messed me up and I was really sick for a couple days.* I will call and ask about the Tylenol with Codeine and if that can be taken for this. I didn't even think of the CT scan until you mentioned it as I've had so many due to chronic kidney stones...that it's such a commonplace test anymore. Said the Pancreas, gallbladder, and colon looked normal.
02-18-2018, 03:14 PM   #10
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*Update in symptoms*

Hi everyone, so I've begun having tingling in my hands (pins and needles like sensation), dizziness which can be bad at times, and trouble concentrating. Not sure if that's even related to what's going on with me. The abdominal pain has also increased... The good news is this coming Friday is the date for my scopes and so I'm just going to hang tight until then. I am also sweating during these episodes and wake up drenched in sweat in the morning. I'm really, really hopeful that the scopes will give the Dr. a direction to go from here. This last development of added symptoms is a little concerning to me as I hate the dizziness especially. The fatigue has increased as well. No idea what's going on or why it's happening now. I'll leave that up to the Dr. to figure out. Just needed to vent a little bit about it somewhere.
02-18-2018, 04:09 PM   #11
Glockola
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dizziness is probably anemia?
02-18-2018, 04:11 PM   #12
Glockola
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it sounds like something seriously bad is going on with you. Go to the emergency if you would start to feel dehydrated or like about to faint.
Honestly sounds like some infection going on or possible new onset IBD.

Last edited by Glockola; 02-18-2018 at 04:26 PM.
02-18-2018, 04:33 PM   #13
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it sounds like something seriously bad is going on with you. Go to the emergency if you would start to feel dehydrated or like about to faint.
Hi Glockola, well I was tested for anemia when I saw my GP at first three months ago or so. My RBC was fine then. *Not sure what it is now though* I had the CT scan when I had a kidney stone and like...they said things down there looked fine. I don't see blood in my stool...the toilet is just a dark brown, although there are black things on the TP. That's the only weird thing I've noticed about them. Kind of like coffee grounds. I forgot to mention above in my initial post that my vitamin D levels were low, in the deficiency range. I've tried to address that by going outside more and also by vitamin D3 2000 MG tablets. I'm going to keep an eye on this and if it gets worse go to the ER for sure... I'm just trying not to do that with the scope so close. *Due to finances* Maybe I have these symptoms because I'm not eating much? I'm not really sure.
F MONOCYTES 13.2 H 4.0-13.0 (%) That was a little high, I was told nothing to worry about.

F VITAMIN D, 25 OH 12 L SEE BELOW (NG/ML)
This is weird...As I can be outside fishing for hours at times...although not lately. It's been low before but never like that.

F CALCIUM 10.8 H 8.5-10.5 (MG/DL) That's the one I remembered to include above, it was slightly elevated.

F WBC 10.5 4.0-11.0 (K/UL) This was normal as well but thought I would show you Glockola as you seem really knowledgeable.
02-18-2018, 04:45 PM   #14
Glockola
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Everyone is vitamin D deficient these days, even "healthy" people, so that doesn't mean anything. I think your calcium is almost within range so I do not think any doctor would think much of it.
The most important labs are CBC, CRP, Albumin and stool tests f-elastase f-hemoglobin f-calprotectin.
Something could be going wrong with your pancreas or could be some infection. Honestly IBD is quite rare but it is definitely a possibility. Especially since you have it in the close family.
02-18-2018, 04:52 PM   #15
Glockola
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Sorry, just saw you wrote that they checked your pancreas and liver already.
Will be interesting to know what is going on. Keep us updated.
02-18-2018, 04:56 PM   #16
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Yeah. I mean the pancreas looked fine on the CT scan they said and I also had a blood test to check for Pancreatitis. Which was normal. I'm not sure how the heck to eat when I'm never hungry and stuff all the time. It will be interesting to see if anything is found in the scopes on the 23rd. I'm honestly hoping so as I will have some idea as to what is going on. Sigh...Just sick of not knowing is the main thing and it's frustrating as heck. I am going to feel pretty deflated if some kind of idea hasn't gleamed from all of this.
02-18-2018, 05:10 PM   #17
Glockola
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if you had pancreatitis you would probably shit pale yellow stools and not dark brown.
Have you tried any antihistamine for the nausea? or you can just hold out until Friday.

You are losing weight because you are not eating enough. You are probably still absorbing food. What happened in July, did it just start up randomly?
02-18-2018, 05:22 PM   #18
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It all started as not having the desire to eat as much.Lack of appetite.I thought it was great as I was really overweight and I didn't pay much attention to it. Then I noticed weight loss, the other symptoms followed gradually after that.Some came along around the same time as the others. I researched IBS and figured I had that. So I attempted to alter my diet before going to the Dr. When that didn't help I decided to see my GP. I had been sick on and off with bouts of bronchitis and was on antibiotics for awhile. Other than that and being obese...I was fine. I had gone to Mexico on vacation for my honeymoon and the doctor did a bacteria, viral, and parasite test which was negative... I was hopeful it was one of those when he mentioned it because it sounded like it would be a quick fix. When I was a kid I had boughts of vomiting and had an upper endoscopy and was diagnosed with GERD. I took omeprazole for years and it helped.

You are losing weight because you are not eating enough. You are probably still absorbing food. What happened in July, did it just start up randomly?[/QUOTE]
02-18-2018, 05:32 PM   #19
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What kind of antibiotics? I am thinking of antibiotics associated diarrhoea, clostridium difficile or post infectious ibs. Especially if you have been taking a wide spectrum antibiotic.
C. difficile infection and antibiotics associated diarrhoea will not show up on bacteria, viral, and parasite test.
It is actually very common.
02-18-2018, 05:46 PM   #20
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I can't remember what either one of them was. I know one was one of those booster packs where you start at day seven and work your way down. The other was in a standard prescription bottle...That doesn't help =/. But that's all I remember. I threw the packaging away after I was done with them months ago. The last antibiotic course was around the time all this did start to occur... You may be on to something here! It was either the month before or the month we got back from Mexico I got sick with bronchitis again. So any of the three you mentioned could very well be the key to this.

Last edited by IAFisherman1989; 02-18-2018 at 05:50 PM. Reason: More info
02-18-2018, 05:55 PM   #21
Glockola
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Two different ones? If your problems started during or after taking them and you also went to Mexico. That is a big red flag.
I would mention it to the doctor on your next visit. Clostridium difficile toxin A and B you should really test for to make sure.
Antibiotics are famous for messing up the intestines real bad.
02-18-2018, 06:02 PM   #22
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Yes two I believe. They a few months apart. The last one I took was the zpack. I don't believe I was tested for this Clostridium difficile thing. Yeah, I'm pretty sure that the lack of appetite started after the zpack. My GP knew about the bronchitis episodes, but I didn't think to mention it to the Gastroenterologist. Honestly...had no idea an antibiotic could cause something like that. I will mention it to him for sure.
02-18-2018, 06:09 PM   #23
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Zpack is Azitromycin. It is the most dangerous one. Now I am even more concerned for you.
Why did not your doctor ask you? Azitromycin is the most likely to give you C difficile associated diarrhoea or other antibiotic associated diarrhoea.
02-18-2018, 06:32 PM   #24
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I'm not sure... But I wasn't too impressed with the GP as she seemed to downplay my weight loss as I was obese. I don't see how she wasn't concerned with so much weight loss... Now I'm even more unimpressed as from what you say this should've been checked for as my symptoms started... uggh. Will this sort of thing show on the scopes I'm having done I hope?
02-18-2018, 07:00 PM   #25
Glockola
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They may find some inflammation going on.
02-18-2018, 07:38 PM   #26
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Hi IAFisherman1989,

I would keep pressing the doctors for answers. There is something that needs to first be identified and then treated. I hope you get a diagnosis and treatment soon. Best wishes.
02-18-2018, 09:14 PM   #27
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Thank you Glockola for the info about this Clostridium difficile and thank you Cmack for the well wishes. I will certainly press for answers as I am nearing the end of my proverbial rope here. Hopefully, the scopes reveal something. I will inform my wife to ask about this Clostridium difficile thing and such. I've read you don't always remember to ask questions after these types of procedures. I feel relieved to have people that I can actually talk to on here about this stuff. I will post a post colonoscopy update on Friday in the afternoon sometime.
02-18-2018, 09:23 PM   #28
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I would write a list of questions you want answered, that way when you go to see the doctor you wont forget to mention anything. I do it all the time, it helps.
02-20-2018, 11:29 PM   #29
Lynda Lynda
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Fisherman, Welcome. Wishing you well on Friday.
02-21-2018, 01:05 PM   #30
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Hi Lynda Lynda. Thanks so much. I appreciate the well wishes for Friday and am hopeful for answers of some kind!
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