GI symptoms worsening; No diagnosis received yet

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MissLeopard83

MissLeopard83

Joined
Jul 5, 2016
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I'm new here after seeing a GI specialist and getting tested for a few different disorders, I'm at wits' end. I have one more procedure lined up the middle of this month - colonoscopy.

It basically started with my GP since I was having pain and pressure (right upper abdomen), which were thought to be a gallbladder issue, so she sent me for an ultrasound which did not show any stones, but I did have a fatty liver (I lost weight within the past year). She was concerned, so she sent me to a GI specialist on referral.

He reviewed my chart and concluded that my liver is not causing my problems since it is not enlarged (he couldn't feel the borders). He sent me for an upper GI endoscopy for stomach ulcers and a HIDA scan for the gallbladder, but both were negative. I saw him that week after the HIDA scan and he decided to send me for a hydrogen breath test for SIBO and a colonoscopy. I had the breath test on Friday. I just spoke to his nurse after having worsening symptoms this weekend for no apparent reason (diarrhea, cramping, and bloating) and she let me know that the breath test was negative. Up 'til now, I've spent over $1,000 in tests and consults and nothing has been able to provide a diagnosis. I'm really frustrated. :frown:

Anyway, my doctor put me on Bentyl 10mg 4x on day and told me to avoid trigger foods. He originally put me on Prilosec OTC, as well, but that actually made my stomach feel like I had a brick sitting in it from a lack of stomach acid, so I discontinued it after talking to him. I don't want to pray for an illness, but I hope that the colonoscopy can help with a diagnosis so I don't have to spend any more money on tests. The doctor is thinking it may be IBS, but I was diagnosed with that in 2003, and these symptoms are much worse. My mom thought Crohn's disease or another IBD might be a possibility.

Some of the symptoms, other than pain and pressure, I've experienced are cramping, bloating (I feel like a balloon), pain in the center of my abdomen and upper right abdomen, diarrhea alternating with constipation (I feel the need to strain, as well).

I feel so alone in this and like all the symptoms are in my head or something, but I know they're not. Stress seems to worsen the symptoms, so I'm trying not to worry about it, though it's difficult.

Did it take anyone a long time to receive a diagnosis after getting tested for almost everything? Did you have similar symptoms to mine?
 
By the way, the nurse asked me if my BM was watery last night, but I said no. After reading one of the threads here, I looked at the Bristol stool chart and I would say it was definitely a 6 on the chart. I'm not sure if I should call her back, or not. I don't know if it was product of the Lactulose they gave me on Friday for the HBT or something else...
 
Welcome. You will find a great support system here. There is a support group in here for people who are undiagnosed. It feels a lot better emotionally after you know what is going on. Hope you feel better soon.
 
ronroush7 said:
Welcome. You will find a great support system here. There is a support group in here for people who are undiagnosed. It feels a lot better emotionally after you know what is going on. Hope you feel better soon.
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Thanks. I really hope I get a diagnosis soon so I can start treatment and get back to life. I've been so fatigued and achy lately (my hands started hurting quite a bit in the joints yesterday as well as my hips). My GP did a test for autoimmune disorders and it came back normal, so it's not lupus or RA. Sometimes, I wish I had x-ray vision...
 
Hi MissLeopard83, welcome to the forum. When you have your colonoscopy, make sure they take a lot of biopsies. Some illnesses (such as microscopic colitis) can only be found on biopsy, so make sure that the team knows ahead of time that even if everything looks fine visually, that they should take multiple random biopsies anyway.

Out of curiosity, what other tests have you had? Bloodwork? Stool tests? Have they checked your fecal calprotectin? (That's a stool test which checks inflammation markers specifically in your digestive tract, it's more specific than the blood tests ESR and CRP which can only generally check inflammation markers in the body as a whole.)
 
As for bloodwork, my iron (hematocrit) and B12 were in normal ranges when they were done, but that was a few months ago and I feel worse. As for the biopsies during the colonoscopy, the doctor told me he routinely does them (he did one on my upper GI endoscopy when he saw inflammation in my upper stomach lining; h. pylori was negative). I have not had any stool tests, but I may mention the fecal calprotectin to my GI doc if the colonoscopy is inconclusive. My mom and dad have both had diverticulitis, as well, so that is another possibility to consider, but I haven't seen any noticeable blood when I have a BM, just varying shades of brown - dark to lighter - (not sure about occult blood since I haven't had a test to check). I'm pretty sure I have inflammation of some sort in my GI tract since it just feels raw sometimes. I took Kaopectate last night which seems to have stopped the cramping some, but now I just feel gassy and backed up. :(
 
I woke up this morning feeling really fatigued, bloated, and gassy. I'm not able to take my Bentyl right when I wake up since I have to take my thyroid meds first. I just wanted to go back to bed. I hope I'm able to "snap out of it" while at work. I don't like feeling like this at all. :(
 
Mornings tend to be the worst time for me as far as nausea, bathroom trips, etc. Particularly first thing in the morning. Usually, as the day goes on, I tend to feel better - hopefully that's the case for you as well!
 
You might also want to get tested for gastroparesis. Do you have nausea? I avoid some of the FODMAP foods since they tend to give me a lot of gas/bloating/distress. Particularly onions, garlic, cruciferous veggies. You might also want to get a pill cam test which will tell you what is going on in the small intestines(since the colonoscopy and upper GI can't reach). Good luck!
 
Cat-a-Tonic said:
Mornings tend to be the worst time for me as far as nausea, bathroom trips, etc. Particularly first thing in the morning. Usually, as the day goes on, I tend to feel better - hopefully that's the case for you as well!
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Actually, it seems the opposite to me - my symptoms tend to get worse at night, but that could be because I usually don't eat breakfast. Right now, though, I'm having pain and pressure in my RUQ again. My doc upped my Bentyl 10mg to 4x a day instead of 3x a day because it was helping a little. He also told me to stay away from NSAIDs since I was taking Aleve quite often for the pain.
 
Eridon2002 said:
You might also want to get tested for gastroparesis. Do you have nausea? I avoid some of the FODMAP foods since they tend to give me a lot of gas/bloating/distress. Particularly onions, garlic, cruciferous veggies. You might also want to get a pill cam test which will tell you what is going on in the small intestines(since the colonoscopy and upper GI can't reach). Good luck!
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I have nausea sometimes, but it seems to be better when I'm on Bentyl (now 4x a day - 30 min before each meal and 1 at bedtime. I was told by my GI doc to take digestive enzymes when I eat because he wondered if my gas was caused by foods, but it isn't making a difference at all. If the colonoscopy comes back with no diagnosis, I'll mention the pill cam test. He didn't mention anything more about my stomach being a possibility, so I don't think he is thinking gastroparesis. He showed me a diagram of where the transverse colon comes up under the liver (hepatic flexure) and said that, if I have inflammation, he thinks it will be found there.
 
MissLeopard83 said:
Actually, it seems the opposite to me - my symptoms tend to get worse at night, but that could be because I usually don't eat breakfast. Right now, though, I'm having pain and pressure in my RUQ again. My doc upped my Bentyl 10mg to 4x a day instead of 3x a day because it was helping a little. He also told me to stay away from NSAIDs since I was taking Aleve quite often for the pain.
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Mine tend to be worse at night.
 
After reading over my posts, I forgot to mention that I usually get mild hot flashes - kind of like the feeling you get after eating hot soup and you get flushed. It's worse now that the hot summer has arrived. I've taken my temperature on a few occasions when I'm at home and noticed my temperature is slightly elevated. I've always had a "normal" temperature in the 97.2-97.6 range, so, when it hits 98.6 or above, that is a mild fever to me. I noticed, one time, I was at 99.4 and I felt really bad so I took some Tylenol, which helped. I'm thinking of carrying my digital thermometer with me to work so I can take my temp during certain times of the day when my symptoms worsen and see if it coincides.
 
It took me a long time to get a diagnosis too. I had a CT scan that showed inflammation in my terminal ileum and a colonoscopy, which when they did they told me I had a tortuous bowel, but told me it was inconclusive and left it at that. A year later I couldn't take the symptoms anymore so went to my Family Practice Dr and he did blood work(The IBD9 panel test I think it's called) Which showed markers for crohns and he sent me to another GI that did a capsule endoscopy and that's where I got my final diagnosis. It's been 10 years now, so hopefully they understand crohns a little better where you are. Everything you say sounds a lot like what I deal with. A heating pad and tylenol help a lot. Good luck with everything and just keep pushing your dr. It stinks to have so much money into tests, but once you have your diagnosis it'll all settle down.

I should also note, a GI bug can cause inflammation in your bowels called gastroenteritis which can cause very similar symptoms to crohns too. So just bc you're having similar symptoms don't stress out that you have something so serious as that. It may just be a bad bug that's caused issues in your gut. So don't give up hope that everything will resolve is what I'm trying to say :)
 
JaimeM said:
It took me a long time to get a diagnosis too. I had a CT scan that showed inflammation in my terminal ileum and a colonoscopy, which when they did they told me I had a tortuous bowel, but told me it was inconclusive and left it at that. A year later I couldn't take the symptoms anymore so went to my Family Practice Dr and he did blood work(The IBD9 panel test I think it's called) Which showed markers for crohns and he sent me to another GI that did a capsule endoscopy and that's where I got my final diagnosis. It's been 10 years now, so hopefully they understand crohns a little better where you are. Everything you say sounds a lot like what I deal with. A heating pad and tylenol help a lot. Good luck with everything and just keep pushing your dr. It stinks to have so much money into tests, but once you have your diagnosis it'll all settle down.

I should also note, a GI bug can cause inflammation in your bowels called gastroenteritis which can cause very similar symptoms to crohns too. So just bc you're having similar symptoms don't stress out that you have something so serious as that. It may just be a bad bug that's caused issues in your gut. So don't give up hope that everything will resolve is what I'm trying to say :)
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Thanks. My GI doc is being really thorough and assured me he will do everything he can to find the cause of my problems. Back in April, I had my first calloff ever at my job (I started in Dec 2015) due to severe intestinal cramping (I was in a fetal position on my bed when I wasn't running back and forth to the bathroom) and diarrhea. I saw my new GP the week after and mentioned that I thought I had a case of food poisoning or I was "glutened" since I have Celiac disease (I had just tried the GF soup on offer at the cafe). I really couldn't trace the cause. The symptoms lasted for about 3 days and several people at work had similar symptoms, including my friend who is also GF (she didn't eat the soup, though). However, the abdominal pain was there before this happened, and it didn't seem to change - just got worse. I'm not ruling a bug out, though.
 
Hi and welcome to the forum.

I had several tests in the beginning to help diagnose. IBD can be very complicated and shows up in different parts of the GI tract. Also, there are some conditions or infections that can have similar symptoms. A colonoscopy should give more info. I had a CT scan, Upper GI series, lots of blood work, poop tests, and a colonoscopy. I was not diagnosed till the colonoscopy...that's when they could see the Crohn's in my colon. That being said there are people that never get a definitive diagnosis either.

After that I went through some trial and error with medications. So, don't be discouraged if after an IBD diagnosis you end up trying different meds. Everyone's body is different and a med that works great for me, might be ineffective for someone else.

Some people also believe that a bout of food poisoning may have triggered their disease. I think mine was a perfect storm of taking Aleve daily, stress, eating poorly, and genetics.

Good luck on the colonoscopy! The prep is the worst part...keep us updated on the results. Crossing my fingers you don't have IBD, but that they find something easier to treat and you start feeling better soon.
 
I just picked up the prescription prep today - MoviPrep - which cost me $60 with insurance. I did a ton of research and realized this was the easiest, most effective colonoscopy prep after my doctor prescribed it (I was expecting to use Gatorade and Miralax since that's what my mom used). My wallet is definitely taking a hit, as of late.

Lately, I've noticed that dairy worsens my symptoms, so I'm trying to avoid it as much as possible. I take lactase enzyme when I do consume it. I'm thinking of trying those GoVeggie or Daiya products to see if it makes a difference. I know I have lactose intolerance from Celiac disease, but I used to be able to get away with eating it and not having many problems. Not so anymore. It really sucks because I love cheese, but I don't love what comes afterward when it makes me feel bloated, gassy, and in pain. I almost bought some Lactaid milk at the store when I picked up my prescription, but put it back while at the register when I saw the label and how many preservatives and additives were in it (including carageenan which I know causes inflammation). I should have gotten the Organic Valley lactose-free version, instead.

I'm really trying to eat as healthy as possible. I love eating organic and I try to eat leaner meats. My GI doctor told me to stop eating red meat, so I've been focusing on eating chicken, turkey, and fish. It's hard sometimes because I am a "meat and potatoes" gal, but I'm hoping it will help my liver detoxify and get rid of the fat that accumulated. I also stay away from sugar as much as possible - especially the refined kind. The one thing I really need help with is my addiction to caffeine. My fatigue is so bad that I need caffeine to function, but I've read that caffeine can actually worsen symptoms, so I need to get rid of it, and it's difficult. I am trying to drink plenty of water, too, so I don't get dehydrated.
 
The bloating and gas was so bad last night, I woke up mid-sleep from a tense lower abdomen. I've gotten such bad sleep in the last week or so, I needed to do something to relieve the discomfort. I ended up taking Phazyme and Pamabrom. About an hour later, I was able to get back to sleep with the abdominal distention greatly reduced. Not sure which medication helped, but I was relieved to be able to sleep normally. I know Phazyme is relatively harmless, but I don't like taking the Pamabrom that often. I used it when I had my menstrual cycle because I would get REALLY bad water retention in my abdomen. I've been on the shot since March, however, due to endometriosis and PCOS, so I don't get a cycle much anymore. I've only had one since starting on it and a lot of spotting in the first few months (sorry for the TMI). I'm at work and I'm bright-eyed, which is way better than the last few days where I've been so fatigued that I nearly fall asleep at my desk.
 
After having surgery last week to remove my endometrium and a large ovarian cyst, I see all the signs on here of the cyst. Bloating, pain in lower abdomen, fatigue, etc. I don't know why it didn't occur to either of my doctors to look for other causes until I ended up in the ER (I believe the cyst was leaking fluid into my abdomen causing the lower back pain). Now that the cyst is gone, I feel better, but I'm still recovering from my surgery. Unfortunately, it appears that I will have to have further surgery down the line. It depends on the treatment offered - either I will have to be on progesterone for the rest of my life (I have two disorders caused by excess estrogen - endometrial hyperplasia and ovarian cysts) and have a D&C every few months to check the lining for cell changes (it can lead to cancer, which my grandmother had) or have a total hysterectomy with removal of the ovaries. The last would send me in to early menopause and I'm only 33, single, with no children. I'm considering it, though, to prevent cancer and constant D&Cs. I have a post-op appointment tomorrow.

I also wrote a letter to my former GI doctor explaining what has happened because I'm angry that he kept brushing it off as simple IBS. Even when I told him the symptoms were worsening, he didn't listen and told me nothing was wrong. Ovarian cysts can cause GI symptoms and mine was large enough that it had to be drained before it could be removed. :(
 

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