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Wildmtn, I don't know what could cause "stasis", I hadn't heard of that before. Is it similar to gastroparesis? Are there further tests they can do to look for the cause? It sounds like a sensible plan in the meantime to eat smaller meals and stay upright and so on. With my GERD and hiatal hernia, I've definitely learned the value of staying upright (stomach contents tend to pour up my throat if I bend over forward too much, like if I'm shoveling snow - it's not a fun time). I hope you can get more answers soon.
 
Cat I'm so sorry your grandma isn't doing so good. My grandma had early onset alzheimers and it really is a terrible thing to have to watch :(
Also I will be thinking of all of you across the pond who will be negatively affected by tomorrow's events, I'm so sorry it has come to this for you all. I can't bring myself to watch any of the footage which will be shown over here, I can't stand that man. Most of the UK view him as a joke in all honesty.

I got some good news this morning, the gastro dieticians decided to put me on the urgent list so I'm seeing them on Thursday about the possible tube feeds! Then I see the gastro consultant on Friday! I'm so so hoping something positive comes of both appointments.

One thing I'm struggling with more than normal right now is mucus :/ like a lot more than usual in my BM's and sometimes I'm passing only mucus which is pretty gross and frustrating to be honest. No idea why either! I've had more bowel pain than usual but no loose BM's so far. So odd! I will make sure I mention it at my appointment next week though.
 
Hey Cat,

Did you wear a pink hat with the neat cat ears? I hope your march went well and you are OK. Some people acted a little wild i heard. I am so glad that here in Canada and in the United States we have the right to free speech and peaceful protest. I think it is always good and right to stand up for what you believe in! Women's rights are human rights! we are all equal! Good on you for making your stance known. It takes a lot of courage.

Peace and positive thoughts, not only to you but your entire nation.:hug:

All the best,

cmack
 
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I didn't end up going to the march. On Friday (inauguration day) I had this overwhelming sense of dread, and on Saturday morning I woke up and remembered that we have a new president, and I just couldn't stop crying. Could not pull myself together enough to pass as a functional human and just wanted to be alone, so I stayed home and just basically cried all day. I had really wanted to go, but I just couldn't. I cried for a full week after the election, so I guess I should have figured that I'd also cry after the inauguration.
 
Cat,

Sorry to hear that. AWWWW don't cry, I hope you are feeling a little better. Just remember you do get to vote again in four years. Maybe just try not to think about it. I wont be bringing it up again. I would rather not talk about it either!

Peace and love from "The Frozen North" We call Canada,

cmack
 
Okay so I've had my dietician appointment and gastroenterology appointment! Both went better than expected!

Dietician has given me another supplement to try, so I need to drink three per day altogether including the new one which is higer calorie and partially broken down. If I'm struggling with that then we will go down the tube route most likely. I have lost weight again sadly so my BMI is now 14.9 which sucks!

GI is ordering the gastric emptying test! I'm so relieved! I didn't have to beg or use my prepared case studies or anything! I should get that in the next 6 weeks :)
The GI is also in communication with the dietician and importantly is in agreement regarding tube feeding etc. I've also been given metaclopromide to try after not doing well with domperidone.

I came home and celebrated with a small portion of turkey bolognaise and an iced bun and within half an hour I've had to very urgent episodes of D which were quite watery :( I'm so scared it's a bug and because I've just eaten quite a lot for me that I will be horribly sick :( I'm really hoping it's just like pent up anxiety over the last 2 days coming out but either way I feel awful and scared and I can just tell I'm going to have to run to the toilet again any minute :(
 
sarahfh said:
Okay so I've had my dietician appointment and gastroenterology appointment! Both went better than expected!

Dietician has given me another supplement to try, so I need to drink three per day altogether including the new one which is higer calorie and partially broken down. If I'm struggling with that then we will go down the tube route most likely. I have lost weight again sadly so my BMI is now 14.9 which sucks!

GI is ordering the gastric emptying test! I'm so relieved! I didn't have to beg or use my prepared case studies or anything! I should get that in the next 6 weeks :)
The GI is also in communication with the dietician and importantly is in agreement regarding tube feeding etc. I've also been given metaclopromide to try after not doing well with domperidone.

I came home and celebrated with a small portion of turkey bolognaise and an iced bun and within half an hour I've had to very urgent episodes of D which were quite watery :( I'm so scared it's a bug and because I've just eaten quite a lot for me that I will be horribly sick :( I'm really hoping it's just like pent up anxiety over the last 2 days coming out but either way I feel awful and scared and I can just tell I'm going to have to run to the toilet again any minute :(
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I hope you feel better soon
 
Sarah, it's most likely anxiety and not a bug, please try to relax. I know that's easier said than done. Glad to hear that things went better than expected! I've also brought case studies to my GI (when I was asking for LDN in particular), glad to hear you didn't even need them, it's nice when you and the doctor are on the same page without having to argue why you want something. I hope the new meds and drinks help, and I hope you get a worthwhile result from the gastric emptying test. Please keep us updated of how that all goes!
 
Dear Sarahfh,

I hope you get well soon. I also think anxiety is a factor. I am on Valium myself as I suffer from high anxiety levels. I find keeping my mind preoccupied with something else also helps, like hobbies or reading. Sometimes I just go and build a bird house or do some other small project like organize my tools.

All the best and wishing you well,

cmack
 
Sarah, I completely understand that feeling of anxiety! I get it too. I consider myself a germaphobe and a sick-a-phobe? But I'm so glad your appointments went well! It sounds like they're finally listening to you. I can't believe your BMI is so low! But I'm so glad that tube feeding is becoming a real option now. It sounds like it might be what you need. Keep us posted!

Cmack, I totally bought a build and paint birdhouse kit this week! :)

A week ago I decided to up my dose of LDN a little to 0.75mg. It has definitely affected my sleep! I haven't been sleeping much at all. I also have really bad gas for some reason. I'm hoping my body will get used to it soon and these side effects will go away. I joined a couple LDN groups on Facebook, and it's been helpful to hear other people's success stories and advice and stuff.

I hope everyone is having a good weekend.
 
Thankfully my stomach settled around 2am. But it was rough going for a few hours.

I'm really struggling to manage the 3 supplements a day the dietician wants, especially with food too. So I expect my next appointment may discuss tube feeding more seriously. Although over the last couple of days I've been hungry because I have a slight cold so hopefully I will put a little bit of weight back on soon!
At least I like the new drink and it settles well! One flavour is basically an iced coffee with a few sugars in so that's actually quite nice!

akgirl I hope you do well on LDN :)

How is everyone else?
 
Time to complain. I feel like that's mostly what I do on here, but I have to get it out or I'd lose my mind. I always feel horrible, but these past three weeks have been extra bad for some reason. I've been sooo nauseous. Ugh. And last night I was up until like 3am because LDN is still affecting my sleep. I think I'm going to try to take some melatonin and see if that'll help at all. I always have a plan B and C and D for what I'm going to do next as far as trying to get diagnosed. But right now, I don't have any plans and it's scary. The doctor I'd been seeing for a year basically gave up on me (well she said, "My gut feeling is that you're depressed, and that's what's causing all of your symptoms.") I consider that giving up. That's usually what doctors say when they're out of ideas.

I'm currently not on any special diet, but I'm considering starting. I was on the SCD diet for a couple months for my SIBO, but it didn't make me feel any better. But I was also on antibiotics at the time, and they definitely made me feel worse. So I was thinking about trying it again. I'm hardly ever hungry, so I'm not too concerned about missing the foods that I love. I'd do anything to feel better!! But I also don't want to get too skinny. And sticking to that diet is a lot of work (tons of cooking), which I don't feel up to right now. So I don't know.

As a random side note.....do any of you know anything about the Epstein Barr virus? It's the one that causes mono. I've been hearing more about it lately. I watched this video about how the virus can be the cause of "mystery illnesses." And it has a link to autoimmune diseases. I had mono about 8 years ago. It's definitely a stretch, but I guess you never know??
 
Hi Everyone. I'm new here. 25 year old female having increasingly worsening symptoms. Here's a little bit of my backstory.

I have had digestive issues my whole life. I went through numerous upper GIs and ultrasounds as a kid, and my PCP chalked it up to having a sensitive stomach, and a mild case of IBS.

In 2014, my symptoms got worse including bouts of 7-10 days of constipation followed by a day of diarrhea, loss of appetite, nausea every single day, vomiting, severe abdominal cramping, fevers/chills, and night sweats. My PCP recommended an elimination diet, suspecting a food sensitivity. When I reintroduced gluten, I was sick for 4 days straight with diarrhea, bloating, and chills. My PCP said to eat a gluten free diet but did not pursue any further testing.

I have been gluten free since 2014, but that has not alleviated the symptoms. Since Nov. 2016, my symptoms have worsened. I have been forced to miss time from work. 10+ days at a time with no bowel movement, followed by violent diarrhea, oftentimes with no notice. Crippling abdominal pain mostly in my upper left hand abdomen and around my belly button area. Nausea every single day. Vomiting at least once a week. Cramping and abdominal pain worsens, particularly within 15 minutes of eating. I have had two accidents with diarrhea in public. The cramping is usually accompanied by fever/chills. Complete loss of appetite. Since Nov. 2016, I have lost nearly 20 lbs. (I currently weight 155lbs at 5'1")

I met with my PCP late December. I mentioned my symptoms, and she suspected IBS. She had me do a 7-day dulcolax cleanse (hell on earth, truly) before sending me for an ultrasound and bloodwork. The CBC came back "normal" with no red flags. Ultrasound didn't show any enlarged organs or ulcers. I had a follow up appointment with my PCP after following her recommended IBS regimine of dulcolax and colace. My symptoms continued to get worse, so she sent me to a gastroenterologist.

Met with my new gastroenterologist. He suspected IBS. Put me on a low-FODMAP diet, has me taking Citrucel twice a day, and miralax after 4 days with no bowel movement. He prescribed zofran for the nausea, which hasn't helped at all. He also scheduled me for an endoscopy and colonoscopy yesterday (1/30/17). He also sent me for bloodwork.

In terms of the bloodwork, it came back with a vitamin B12 deficiency, vitamin D deficiency, and elevated inflammation markers via a c-protein reactive test. He called and said it suggested something was going on other than IBS. As weird as it sounds, I felt elated that something showed up - closer to getting answers/treatment!

Prior to the coli/endo combo, I hadn't had a BM in 6 days. He prescibed Linzess, which didn't produce a BM, even after 2 days of taking it. I started prep on Sunday, which I had no problems with. I used Suprep, and was cleared out after the first dose (still took the second dose). I had the coli/endoscopy yesterday. He took a bunch of biopsies. Said that he didn't see any concerning inflammation and that we would wait to see what the biopsies show. He said he was back to thinking it was just a more severe case of IBS.

As weird as this sounds, I felt defeated. I have tried all the recommended IBS medications. Nothing seems to work. Stool softeners, high fiber, low fiber, citrucel, dulcolax, milk of magnesia, gluten free, everything. Nothing seems to help, and I can't keep missing work. I need answers.

Hoping for the best, but what is the best? I feel terrible saying this, but I hope the biopsies show something. I can't deal with another crappy (no pun intended) IBS diagnosis. It seems that my blood work suggests that something else is going on. The nurses told me that I would hear back about the biopsies in 3 weeks or less. Ughh, so long! After years of GI issues, I just want some answers!!

Doing my research to help advocate for myself in case the biopsies come back negative. Not sure what my next steps should be. I haven't had the pill camera test or a stool sample test, yet.

Thanks for reading.
 
Hi Megan, welcome to the forum. One thing stands out for me right away from reading your post - you mentioned pain in the upper left abdomen and in the belly button area. That might indicate that your illness is located in the small intestine. Unfortunately, the upper and lower scopes don't see much of the small intestine, only the very beginning and very end, and there's a whole lot of small intestine that they cannot see/take biopsies from. The pill cam can see the small intestine, although it cannot take biopsies. If it were me, I'd definitely be pursuing a pill cam if the scopes don't find anything. You might also want to ask about MRE, which is an MRI-enterography - it uses special contrast and looks specifically at the small intestines as well. It also can't take biopsies, but it can see things like narrowing or thickening of the small intestine.

You also mentioned feeling sick within minutes of eating - have you been looked at for gastroparesis? A gastric emptying test can diagnose that. I haven't had that test myself so I don't know much about it. I'm going to tag Maya142 as she knows a lot about gastroparesis.

I hope the biopsies do give you some answers, but don't get too discouraged if they don't. It doesn't mean that you don't have a legitimate illness, it just means they haven't found it yet (it also doesn't mean it's automatically IBS). Unfortunately sometimes we have to fight to get answers, but we've all been there & done that too and we're here to help you along the way. You've come to the right place. :)
 
Crippling abdominal pain mostly in my upper left hand abdomen and around my belly button area. Nausea every single day. Vomiting at least once a week. Cramping and abdominal pain worsens, particularly within 15 minutes of eating
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Some of your symptoms do sound like Gastroparesis (delayed gastric emptying). Gastroparesis is when your stomach does not empty properly. As a result, food sits in your stomach and causes all sorts of symptoms - especially nausea, early satiety, pain etc.

Do you get nauseous with meals? Full after taking a few bites? Vomit after eating?

Pain and weight loss are also common. Many patients with Gastroparesis also deal with constipation (slow motility through their GI tracts).

The test for Gastroparesis is pretty simple - it's called a gastric emptying test. You eat a meal (typically eggs and toast) which has a radioactive tracer in it. Then they take pictures of your stomach at intervals to determine how much of the meal has left your stomach. At the end of 4 hours, if you have more than 10% of the meal left, you have Gastroparesis.

Gastroparesis is typically treated with motility medications. Diet can help - low fat and low fiber meals are the easiest to digest.

Some of your other symptoms - night sweats, fevers, diarrhea, elevated inflammatory markers - sound more like IBD than Gastroparesis. I agree that a pillcam or an MRE to check your small bowel is a good idea - sometimes Crohn's can hide in there.

Good luck!!
 
Hi Megan,

I wonder if you might have strictures in there somewhere. Maybe something to talk to the Doc about. I'm never taking the pill cam as I have suspected strictures and sometimes it can get stuck in them.............Then its off to the surgeon to get the darn thing out! No thanks I don't want a robot pill stuck in my belly!

I wish you all the best and then some,

cmack
 
Hi Cat & Maya!

I have not been tested for gastroparesis, but I will definitely bring it up at my next GI appointment. I have been told by my gastroenterologist not to google because I will just worry myself, but at this point, I am googling so that I can be prepared enough to advocate for myself.

I am not sure if I feel full after eating a little - I guess I consider that lack of appetite. I have been forcing myself to eat to get some sort of nutrients, but my bloodwork showed that I am deficient in a bunch of vitamins. I will have to pay more attention the next time I eat to see if it is a loss of appetite after a few bites or a feeling of fullness.

Thank you both so much for the suggestions. I am ready to fight for treatment. I worry about losing my job (I'm an attorney) and need to start feeling better.
 
Hi, Megan. I hope you get answers soon. Early on, you mentioned about the gluten. Have you tried keeping a food diary to see what foods aggravate your system? Again, I hope you get answers soon.
 
Cmack, there is the patency capsule that you could do before trying the pill cam - it's the same size and shape, and will dissolve if it gets stuck. However, when I had my pill cam (this was back in 2010 so things may have changed since then), I was told that insurance typically does not cover the patency capsule. I was also told that it sometimes costs more than the pill cam itself! I do not understand how that can be, but it may at least be worth asking about if you ever do consider trying the pill cam.

Megan, I agree that advocating for yourself is one of the most important things you can do right now. Do take your googling with a large grain of salt - most people don't go onto the internet to talk about how things are going great, they go to talk about their horror stories. So you may find that you encounter a lot of horror stories, but that doesn't necessarily represent the general experience of this illness or these tests, etc. This forum is a great place to start, feel free to ask us any questions on here or just vent or get support, whatever you need. ccfa.org is the Crohn's and Colitis Foundation of America and they've got some good information as well. I hope that's helpful. Good luck and keep us posted!
 
Hey Cat,

Thanks for the info. I had never heard of a patency capsule I will look into that and mention it to my GP. You hit the ball out of the park about the horror stories. That is very true that the people with bad experiences definitely tend to be ten times as vocal (or more) than those who are happy and had good results.

All the best and thanks again,

cmack
 
Megan, I've also always had stomach issues, but my symptoms got way worse and debilitating in 2014 as well. And I'm 26, so we're around the same age too. Your symptoms definitely sound like more than IBS to me. I'm impressed that you're still able to work. I ended up having to quit my job and drop out of grad school because I was just too sick. I completely understand how frustrating this can be! Doctors aren't very helpful, and it feels like no one gets it. Except everyone on this forum, of course. :) Keep us posted on everything. I'll be hoping the best for you!
 
akgirl said:
Megan, I've also always had stomach issues, but my symptoms got way worse and debilitating in 2014 as well. And I'm 26, so we're around the same age too. Your symptoms definitely sound like more than IBS to me. I'm impressed that you're still able to work. I ended up having to quit my job and drop out of grad school because I was just too sick. I completely understand how frustrating this can be! Doctors aren't very helpful, and it feels like no one gets it. Except everyone on this forum, of course. :) Keep us posted on everything. I'll be hoping the best for you!
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Hi Akgirl,

I feel like the more I tell my doctor my symptoms, the crazier I sound. It's strange hoping for a positive biopsy, but at least that would confirm my symptoms.

I am not sure how I made it through law school (graduated in May) with all this going on. I managed to do well and only to have one accident while there. Now, I am working in a year-long position which only affords 10 sick days. I have burned through almost all of them and am here until the end of July.

None of these dietary changes or over the counter meds are doing anything. I am hoping that the b12 supplement will help my energy levels because my last blood work showed that I am extremely deficient. Amy improvement on quality of life would help! I am taking it day by day, but it is so hard to get out of bed (and leave the comfort of my own bathroom) to go to work.


I am so sorry that you had to quit your job and drop out of school. That is awful! I hope that your doctors can help you so that you can get back to pursuing your dreams.
 
Hi Megan,

I have been taking time release B12 after my Doc recommended it a year ago. I think it upped my energy. I can't be sure though because I also switched to being vegetarian and to mainly organic foods at the same time.

Hope the B12 helps and congrats on graduating law school despite your illness.

All the best,


cmack
 
After one endoscopy that showed severe ulceration and a structure in my duodenum, CT scans that show severe inflammation in my small intestine (duodenum through ileum, skip pattern), high CRP, and two separate week-long hospitalizations for partial obstructions, I saw an IBD "specialist" who told me my regular GI was wrong and I did not have crohn's. He based his opinion on the fact that I heal really well on high doses of prednisone. In his opinion, crohn's patients never achieve full mucosal healing. He offered no explanation for the inflammation in my small intestine, the intense pain, loss of appetite, etc. My regular GI, fortunately, reassured me that although I respond well to steroids, I have all the other symptoms of crohn's, even if I do not present with "classical symptoms" (my ESR isn't usually raised when I'm sick although my CRP is, for example). In between bouts of inflammation I am chronically constipated. I tried 6MP last spring but it gave me severe pancreatitis, so I am taking Entocort with limited success right now (lots of severe pain and constipation alternating with diarrhea, nausea, no appetite, etc.).

One of the biggest problems in diagnosing crohn's is that GIs want to see and biopsy inflamed tissue. If the inflammation is in the small intestine that can be difficult. In addition, patients are often scoped after being on steroids, when the likelihood of finding inflammation is lower.

It sounds like you have something more than IBS since your inflammatory markers were elevated. I agree that you should ask for a pill cam, MRE, CTE, or even a barium swallow with small bowel follow through. Your GI needs to take a look at your 23 feet of small bowel! Since constipation is one of your primary symptoms I am surprised he didn't already suggest small bowel imaging.

Let us know how you're doing.
 
Jabee said:
After one endoscopy that showed severe ulceration and a structure in my duodenum, CT scans that show severe inflammation in my small intestine (duodenum through ileum, skip pattern), high CRP, and two separate week-long hospitalizations for partial obstructions, I saw an IBD "specialist" who told me my regular GI was wrong and I did not have crohn's. He based his opinion on the fact that I heal really well on high doses of prednisone. In his opinion, crohn's patients never achieve full mucosal healing. He offered no explanation for the inflammation in my small intestine, the intense pain, loss of appetite, etc. My regular GI, fortunately, reassured me that although I respond well to steroids, I have all the other symptoms of crohn's, even if I do not present with "classical symptoms" (my ESR isn't usually raised when I'm sick although my CRP is, for example). In between bouts of inflammation I am chronically constipated. I tried 6MP last spring but it gave me severe pancreatitis, so I am taking Entocort with limited success right now (lots of severe pain and constipation alternating with diarrhea, nausea, no appetite, etc.).

One of the biggest problems in diagnosing crohn's is that GIs want to see and biopsy inflamed tissue. If the inflammation is in the small intestine that can be difficult. In addition, patients are often scoped after being on steroids, when the likelihood of finding inflammation is lower.

It sounds like you have something more than IBS since your inflammatory markers were elevated. I agree that you should ask for a pill cam, MRE, CTE, or even a barium swallow with small bowel follow through. Your GI needs to take a look at your 23 feet of small bowel! Since constipation is one of your primary symptoms I am surprised he didn't already suggest small bowel imaging.

Let us know how you're doing.
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Jabee,

You obviously know what you are talking about. It sounds like you have been to hell and back yourself.


All the best,


cmack
 
Update:

Received a message from my GI through the patient portal saying that he is convinced that I have IBS, and that a lot of times IBS patients experience a reset after a colonoscopy, so I should just wait and see.


He went from saying that my b12 level was very deficient to saying that it is the lower and of normal and that the fatigue is unrelated to any digestive issues I "may or may not have" and to see my PCP about it.

I am at a loss. Asked about the camera pill and he said no need because it is IBS. Doesn't make any sense based on my symptoms and blood work. seeing my PCP this morning, but I feel defeated and discouraged.

I am worried about losing my job because I am so tired all the time. On top of all the digestive issues. I just don't know what to do. Am feeling discouraged, crazy/hypochondriac, and tired.
 
Megan, if it were me, I'd look for a new GI. It sounds like your current GI is being very dismissive of your symptoms. And IBS is typically a diagnosis of exclusion, meaning they've ruled out every other possibility - and it sure sounds to me like they haven't, if they haven't looked at your small intestine at all. You're not a hypochondriac, don't let your doctor make you feel that way. Sometimes doctors are too lazy or just want to put a label on something, so they call it IBS even when that doesn't seem right. You know your body best and you know that something more than "just IBS" is going on, so don't stop fighting. I know you're tired and frustrated, and it's okay to give up for a little while, but after that you know you need to pick up the fight again and keep looking for proper answers. I feel for you, because I've been there & done that for 7 years and counting. It's incredibly exhausting and endlessly frustrating, but we're here for you. Don't give up. Ask your PCP for a referral to a new, better GI. Your PCP might know of a good one, if not, check with your insurance company to see which GIs are covered under your plan, then do some googling and look at the doctor reviews here on the forum to see which ones sound the best to you.

Here's the link to the forum's doctor directory and doctor reviews:
http://www.crohnsforum.com/doctor/
http://www.crohnsforum.com/forumdisplay.php?f=79

As for B12 deficiency - it's extremely common in Crohn's. B12 is absorbed in the terminal ileum, which is the last part of the small intestine, and that's the spot where Crohn's most commonly manifests. If the terminal ileum is inflamed or has scar tissue, then it's not able to absorb B12 as well as healthy tissue would, and as a result, a deficiency occurs. So look for a new GI, and ask them to check out your small intestine. That's what I would do.
 
Cat-a-Tonic said:
Megan, if it were me, I'd look for a new GI. It sounds like your current GI is being very dismissive of your symptoms. And IBS is typically a diagnosis of exclusion, meaning they've ruled out every other possibility - and it sure sounds to me like they haven't, if they haven't looked at your small intestine at all. You're not a hypochondriac, don't let your doctor make you feel that way. Sometimes doctors are too lazy or just want to put a label on something, so they call it IBS even when that doesn't seem right. You know your body best and you know that something more than "just IBS" is going on, so don't stop fighting. I know you're tired and frustrated, and it's okay to give up for a little while, but after that you know you need to pick up the fight again and keep looking for proper answers. I feel for you, because I've been there & done that for 7 years and counting. It's incredibly exhausting and endlessly frustrating, but we're here for you. Don't give up. Ask your PCP for a referral to a new, better GI. Your PCP might know of a good one, if not, check with your insurance company to see which GIs are covered under your plan, then do some googling and look at the doctor reviews here on the forum to see which ones sound the best to you.

Here's the link to the forum's doctor directory and doctor reviews:
http://www.crohnsforum.com/doctor/
http://www.crohnsforum.com/forumdisplay.php?f=79

As for B12 deficiency - it's extremely common in Crohn's. B12 is absorbed in the terminal ileum, which is the last part of the small intestine, and that's the spot where Crohn's most commonly manifests. If the terminal ileum is inflamed or has scar tissue, then it's not able to absorb B12 as well as healthy tissue would, and as a result, a deficiency occurs. So look for a new GI, and ask them to check out your small intestine. That's what I would do.
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Thank you, Cat! My appointment with my PCP went well. She started me on b12 injections and is fairly certain that whatever is wrong with me is autoimmune. So she is sending me for a bunch of blood work to rule other autoimmune diseases out. Still waiting on my GI to send me the biopsy results and other records so I can bring them to a new GI. Thank you for that link to doctors. I will be googling this weekend.

You all are the best. I have felt so alone in all this. Nice to know that there are people who understand.
 
meganshealthjourney said:
Update:

Received a message from my GI through the patient portal saying that he is convinced that I have IBS, and that a lot of times IBS patients experience a reset after a colonoscopy, so I should just wait and see.


He went from saying that my b12 level was very deficient to saying that it is the lower and of normal and that the fatigue is unrelated to any digestive issues I "may or may not have" and to see my PCP about it.

I am at a loss. Asked about the camera pill and he said no need because it is IBS. Doesn't make any sense based on my symptoms and blood work. seeing my PCP this morning, but I feel defeated and discouraged.

I am worried about losing my job because I am so tired all the time. On top of all the digestive issues. I just don't know what to do. Am feeling discouraged, crazy/hypochondriac, and tired.
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I am sorry for what you are going through. You know your body better than anyone else. If you don't feel the doctor is right, keep pushing for answers.
 
Megan,

You have to keep fighting this misdiagnosis. That is what I believe it to be is plain old wrong. You might need to find a different doctor. I never did get a diagnosis and I clearly have IBD. I suspect you have a form of IBD as well. Keep on fighting till you win.

cmack


"First they ignore you, then they laugh at you, then they fight you, then you win."

-Gandhi
 
Cmack, may I ask, how long have you been undiagnosed? It's been just over 7 years for me - I got sick in October 2009. Like you, it's almost certainly IBD for me, as we've ruled out most everything else and I respond well to IBD meds (currently on pred, Lialda, and LDN). But for whatever reason, it hides really well when it comes time to have tests. I know I should be patient - I have an aunt who was diagnosed with Crohn's fairly recently, and she suffered for something like 30+ years with symptoms before being properly diagnosed (she said that after all those years she finally developed scar tissue which was seen on a scope, and that's what led to her getting her diagnosis - nobody actually wants scar tissue though as that's something that can only be removed surgically). I just hope it doesn't take me 30 years like it did for my aunt!

Megan, your PCP sounds very good, sounds like she's taking you seriously and that's huge. My primary care doc is similar, when I first got sick I hadn't seen him for awhile but he's in the same system as my GI, so he could see all the tests that I was having done. When I did finally go to see him, the first thing he said to me was, "So, do you have Crohn's or Colitis?" I was like, I don't know, I was hoping you could tell me! He's always taken me seriously - he even writes down that I've been diagnosed with "IBD/colitis" when I send him FMLA paperwork. So yeah, I'm very glad to hear that you've at least got one good doctor - hopefully you can find a great GI as well and have a good team working to get you a diagnosis and feeling better.
 
Cat,

I have had all sorts of digestive issues (cramps, urgency, rectal irritation) For as long as I can remember. My first major problem(age 27) manifested as a very severe perianal abscess that became a complex series of fistulas. I am 38 now. My new GP believes I have IBD based on all my past problems(his wife has IBD as well). He doesn't really think I need a diagnosis because he has declared me permanently disabled due to surgical procedures as there is proof of many. I may never get a diagnosis of IBD. Now I have to jump through hoops for the government to put me on disability assistance. I admittedly have been dragging my heels on that one as I have a very hard time with getting a paycheck for doing nothing. I'm going to have to do it though as I have truly no other choice. I need money to enroll in some courses from B.C.I.T. to Earn a 2 year diploma in computer science technology related areas. I need to be able to work from home. I am not reliable enough to hold down a regular job anymore.

cmack
 
cmack said:
Megan,

You have to keep fighting this misdiagnosis. That is what I believe it to be is plain old wrong. You might need to find a different doctor. I never did get a diagnosis and I clearly have IBD. I suspect you have a form of IBD as well. Keep on fighting till you win.

cmack


"First they ignore you, then they laugh at you, then they fight you, then you win."

-Gandhi
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Cmack, thank you. I know that I have to fight, I'm just tired. I know I haven't been fighting as long as some, only since 2014, but the last few months have been terrible health-wise.

Hoping to start fresh on Monday by finding a new GI.
 
Cmack, my goodness, you really have been through the wringer! I wish you luck with getting disability and also with your classes. My brother taught himself computer programming and it can be a pretty lucrative field (and he doesn't even have a degree).

I hope everybody has a calm and restful weekend. I think I'm getting a cold so I plan to rest up tonight and hopefully feel better tomorrow. I'd really like to go hiking this weekend but I need both my body and the weather to cooperate, so I don't know if the odds of that are very good!
 
Hey all,

Megan,

You have been fighting. It makes the best of us tired to have this illness. I appreciate your comments on here and I look forward to being here to help you get things headed in the right direction.

Cat,

Thank you for appreciating my struggle. And also thanks for the encouragement. Better go have a cat nap if you need one.


I consider you both allies and friends,

cmack
 
Cat-a-Tonic said:
Megan, if it were me, I'd look for a new GI. It sounds like your current GI is being very dismissive of your symptoms. And IBS is typically a diagnosis of exclusion, meaning they've ruled out every other possibility - and it sure sounds to me like they haven't, if they haven't looked at your small intestine at all. You're not a hypochondriac, don't let your doctor make you feel that way. Sometimes doctors are too lazy or just want to put a label on something, so they call it IBS even when that doesn't seem right. You know your body best and you know that something more than "just IBS" is going on, so don't stop fighting. I know you're tired and frustrated, and it's okay to give up for a little while, but after that you know you need to pick up the fight again and keep looking for proper answers. I feel for you, because I've been there & done that for 7 years and counting. It's incredibly exhausting and endlessly frustrating, but we're here for you. Don't give up. Ask your PCP for a referral to a new, better GI. Your PCP might know of a good one, if not, check with your insurance company to see which GIs are covered under your plan, then do some googling and look at the doctor reviews here on the forum to see which ones sound the best to you.

Here's the link to the forum's doctor directory and doctor reviews:
http://www.crohnsforum.com/doctor/
http://www.crohnsforum.com/forumdisplay.php?f=79

As for B12 deficiency - it's extremely common in Crohn's. B12 is absorbed in the terminal ileum, which is the last part of the small intestine, and that's the spot where Crohn's most commonly manifests. If the terminal ileum is inflamed or has scar tissue, then it's not able to absorb B12 as well as healthy tissue would, and as a result, a deficiency occurs. So look for a new GI, and ask them to check out your small intestine. That's what I would do.
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I could not agree with this more. Megan, I am sorry to hear that your GI is being so dismissive of your symptoms. I went to a GI doctor last year based on the referral of my PCP because she ruled out gallbladder disease and couldn't figure out why I was having symptoms. The guy was rude and all-around obnoxious because he acted like every one of my symptoms - intense pain that seemed to come from upper left abdomen, bloating, cramps, constipation alternating with diarrhea - could be explained away by the IBS diagnosis. Trying to be a good patient, I went along with his recommendations and took Bentyl, fiber, and Gas-X - none of which even made a dent in my symptoms. Then he said to take Peppermint Oil (which worsened my GERD) and probiotics (not a bad thing, but it didn't help my symptoms). He did a HIDA scan, an upper and lower endoscopy, SIBO breath test, and a CTE but nothing was ever found. Finally, my insurance switched at work and the group was no longer covered so I discontinued going to him.

About 2 weeks later, I made an ER visit because of intense lower back pain. They did bloodwork and a urine test (my BP was 162/97 which is VERY abnormal for me) but the ER doctor was worthless and sent me home to follow up with my PCP since the pain was mostly gone 2 hours later (it went from an 8 to a 3). I saw her 2 days later and she was very concerned (more concerned than the ER doctor, I might add) and sent me to my OB/Gyn because she was worried it was an ovarian cyst that had ruptured. I saw my gynecologist a week later and he immediately did a pelvic ultrasound and, due to other symptoms like abnormal bleeding, he recommended a laparoscopy and a D&C to find out what was causing my symptoms. 2 months later (there was a LONG waiting list), he went in thinking he would find endometriosis which would explain the so-called GI symptoms but found a BASEBALL-sized ovarian cyst on my left ovary that was pushing into my intestines and causing pain to radiate to my upper abdomen! My PCP was right! He drained the cyst and I am feeling so much better!

Anyway, the point I am trying to make is that doctors don't know everything. It is your body and clearly you know that something is not right. It bothers me that your doctor is reneging on what he told you about your lab results and it appears that he is simply using that as a pass to get you to admit defeat. IBS is like a band-aid on a large wound - you can use it, but it will eventually fall off and the wound will not heal properly. You owe it to yourself to find a doctor who will take you seriously and work together. It may take a bit of trial and error, but there are some great doctors out there - I have 3 (my PCP, ENT, and OB/Gyn) - but it takes some research to find them. Use the doctor directory here and/or Healthgrades. Also, it helps if you can read their biography before you see them so you know what their special interests are in medicine. There are many GIs but not all of them know well enough about IBD - mine certainly didn't. Best of luck to you! :)
 
Thank you, Miss Leopard! I have my yearly appointment with my OB/GYN on Feb. 13th, an appointment with an allergist (my PCP suspects a wheat allergy on top of everything else) on the 24th, and a follow up with my PCP on the 24th. Attacking this from all sides and trying to get as many good doctors in my corner as possible. Thank you for the support!
 
meganshealthjourney said:
Thank you, Miss Leopard! I have my yearly appointment with my OB/GYN on Feb. 13th, an appointment with an allergist (my PCP suspects a wheat allergy on top of everything else) on the 24th, and a follow up with my PCP on the 24th. Attacking this from all sides and trying to get as many good doctors in my corner as possible. Thank you for the support!
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Ick! Wheat/gluten allergies suck! I have both and Celiac disease so I can't use anything topical with wheat in it and I cannot eat it or I get very sick. When I was first diagnosed, I had no idea how many products contain wheat. I bought a tube of Physician's Formula tinted moisturizer and broke out in hives all over my face - it felt like ants crawling all over my face. I couldn't figure out what was going on until I looked at the ingredients and found that it contained "wheat bran glycosides." Why that was in tinted moisturizer, I'll never know. It's in a LOT of hair products, too. :(
 
Yeah, gluten is in everything. I'm fine with eating gluten but my mother is gluten-free (by choice, not because of illness - but when you're gluten-free for a long time, your body starts to lose the ability to break down gluten, so as a result she now has to be gluten-free or she will get sick! I'm the same way with beef).

So my mother and I went to Japan last year. We figured it'd be easy to find food for her to eat, because it should just be a lot of fish and rice and veggies, right? Nope. I should add that she's also soy-free and it turns out she has an allergy to raw fish. And all those cute little onigiri rice balls that you can buy literally everywhere? They have gluten. Except for maybe some of the plum ones. (Some things got lost in translation, and I don't speak/read Japanese.) They really don't know what gluten is in Japan, you ask them to make something gluten-free (she even had a card printed in Japanese saying she couldn't have gluten or wheat), but they'd just look at you like you're insane. Fortunately, pretty early on in our trip, we discovered kaiten-sushi - conveyor belt sushi. And my mom found that cooked shrimp sushi was something she could reliably eat without feeling ill - it's got no soy sauce, it's cooked and not raw, and there's no gluten hidden anywhere. She ate so much cooked shrimp sushi, we actually had at least one sushi chef make fun of us. :p At a kaiten-sushi place in Kyoto, they had something called ebi avocado (cooked shrimp sushi with avocado). It was delicious and we kept ordering more - you could wait for it to come around on the conveyor belt, or you could just order it directly from the chef. So we kept ordering 3 plates of it, we'd each have one and then we'd split one. And then we'd order more. The word for 3 is san, so we kept asking for san ebi avocado. And the chef kept saying, "San!??" He was like, really? :p Yep, really. It was delicious and belly-friendly for both of us so that's mainly what we ate.

So yeah, if anybody here is planning a trip to Japan and you're gluten-free, plan on eating a lot of sushi and not much else. (I should add that I'm not complaining - I love sushi and it was all wonderful and delicious!)
 
Cat-a-Tonic said:
Yeah, gluten is in everything. I'm fine with eating gluten but my mother is gluten-free (by choice, not because of illness - but when you're gluten-free for a long time, your body starts to lose the ability to break down gluten, so as a result she now has to be gluten-free or she will get sick! I'm the same way with beef).
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I've never understood why gluten is in candy such as Twizzlers. When I was diagnosed with Celiac, I researched online what to stay away from and it was definitely difficult at first. Then, the wheat allergy issue came later (I didn't get the Physician Formula stuff until 1 year into my diagnosis) so I had to be really careful. I've found that I am VERY sensitive to any sort of wheat/gluten products - even more so than before I went gluten-free. I know almost immediately when I've been "glutened" because my body is not shy about telling me. I break out in either zits or hives, I have BAD GI upset, and my body is not right for weeks afterward. :(
 
whining ahead:

I quit my job due to health reasons last week. I am still waiting on word from my disability hearing.

I have had sudden, severe watery D today, after enough pain last night that I took opioids (which should have constipated me, right?) just to sleep.

I can't decide if I'm brave enough to have anything much other water now.
 
Sometimes even the opiates don't stop the flow. I hear ya on that one. I don't have a job anymore either. Feel free to reach out to me any time. We can have a good old rant.



Hope it gets better soon,

cmack
 
Wildmtnhoney said:
whining ahead:

I quit my job due to health reasons last week. I am still waiting on word from my disability hearing.

I have had sudden, severe watery D today, after enough pain last night that I took opioids (which should have constipated me, right?) just to sleep.

I can't decide if I'm brave enough to have anything much other water now.
Click to expand...
Maybe you should just do a bland diet right now
 
Wildmtn, if the flare (or whatever is going on - c diff infection?) is severe enough, then even opioids might not be enough to slow things down. I don't take opioids, but I take zofran sometimes for nausea. When I'm reasonably well otherwise, one zofran is enough to constipate me for at least several days. But when I'm ill/flaring, I can take like 6 zofran in a day and still have 20+ urgent watery BMs. So in my experience, just because it slows things down sometimes, that doesn't mean it's a match for severe symptoms/flare. I realize that's not super helpful, but I've been there & done that too and it's not a fun time.

Definitely call your doctor and let them know what's going on. And maybe try a liquid diet for a day or two to see if that helps at all.
 
Wildmtn, I'm sorry you had to quit your job, but I hope you feel relieved by doing so. I quit my job after being sick for a year. Technically I quit to go to school, but in reality, I figured that a few hours in class would be easier than 8 hours at work every day. I eventually had to quit school too, because although I thought I'd be better after three years, I'm still not. Quitting school was a hard decision for me, and I cried A LOT about it, but I haven't once regretted my decision. I wish I was still in school, but I know that it'd be impossible with how sick I am. So I hope you have similar feelings! I know it can be hard, but it sounds like it's what you needed to do. I'm sorry you're feeling extra bad right now, but if it makes you feel any better, I'm having a horrible day too. 2017 is already not my year. I told myself that this was the year that I was going to get better......but I'm pretty sure I'm worse. I've been crying all day long, which I do most days. I hope you start feeling better soon though!
 
Wildmtnhoney said:
whining ahead:

I quit my job due to health reasons last week. I am still waiting on word from my disability hearing.

I have had sudden, severe watery D today, after enough pain last night that I took opioids (which should have constipated me, right?) just to sleep.

I can't decide if I'm brave enough to have anything much other water now.
Click to expand...
Sorry about your job
 
akgirl said:
Wildmtn, I'm sorry you had to quit your job, but I hope you feel relieved by doing so. I quit my job after being sick for a year. Technically I quit to go to school, but in reality, I figured that a few hours in class would be easier than 8 hours at work every day. I eventually had to quit school too, because although I thought I'd be better after three years, I'm still not. Quitting school was a hard decision for me, and I cried A LOT about it, but I haven't once regretted my decision. I wish I was still in school, but I know that it'd be impossible with how sick I am. So I hope you have similar feelings! I know it can be hard, but it sounds like it's what you needed to do. I'm sorry you're feeling extra bad right now, but if it makes you feel any better, I'm having a horrible day too. 2017 is already not my year. I told myself that this was the year that I was going to get better......but I'm pretty sure I'm worse. I've been crying all day long, which I do most days. I hope you start feeling better soon though!
Click to expand...



I am looking into online education. There seems to be a lot of decent schools offering online credentials. Maybe you will find your calling? The course I want to take is 5G plus so I guess I'll be saving up though. Any option is better than no options I do suppose. :hug:

Lots of hugs,

cmack
 
Thanks so much all!

Cat, I don't think it's C-Diff this time, it's been quite awhile that I've been off antibiotics (whew!) and I had been doing amazingly well for a couple of weeks even! Which was why it was such a shock. I nearly had an accident :( The pain the night before was my typical lower right pain -- and some bad joint pain, but that is because I'm trying really hard to be more active lately!

I did try eating some bland soft things (white tortillas and white rice) for lunch yesterday, and promptly had green watery D, so I think liquids it is for sure all day today.

I also cut my thumb really bad yesterday trying to open a box! I thought I needed stitches, but it turns out I cut out a hunk of skin (called an avulsion) so there was nothing to stitch together :( I have to keep a pressure dressing on it to keep it from bleeding for now, and watch carefully for infection.
 
Wildmtnhoney said:
Thanks so much all!

Cat, I don't think it's C-Diff this time, it's been quite awhile that I've been off antibiotics (whew!) and I had been doing amazingly well for a couple of weeks even! Which was why it was such a shock. I nearly had an accident :( The pain the night before was my typical lower right pain -- and some bad joint pain, but that is because I'm trying really hard to be more active lately!

I did try eating some bland soft things (white tortillas and white rice) for lunch yesterday, and promptly had green watery D, so I think liquids it is for sure all day today.

I also cut my thumb really bad yesterday trying to open a box! I thought I needed stitches, but it turns out I cut out a hunk of skin (called an avulsion) so there was nothing to stitch together :( I have to keep a pressure dressing on it to keep it from bleeding for now, and watch carefully for infection.
Click to expand...
Is corn a trigger food for you? You said you had a tortilla.
 
RonR - it was a wheat tortilla - but thanks for the thought!

I'm starting to think it might be a diverticulitis flare? the pain is in the "usual" spot, and the change was sudden. I was leaning toward liquid diet anyway, so I'll hope that that helps.
 
Wildmtnhoney said:
RonR - it was a wheat tortilla - but thanks for the thought!

I'm starting to think it might be a diverticulitis flare? the pain is in the "usual" spot, and the change was sudden. I was leaning toward liquid diet anyway, so I'll hope that that helps.
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Hope you feel better.
 
I'm also in the "cut finger" club although mine is finally healed. Back in June, I was doing some yard work, and a bird flew up and distracted me, so I inadvertently touched my right index finger to the moving blade of a hedge trimmer. Ouch! That required 7 stitches and it's now a big scar and I don't think that finger will ever be the same. It's lost some sensation.
 
Cat,

Big OUCH! You gotta love those random birds. Sometimes the sensation starts to come back even after years. I had a bad one from glass like that and it was numb for a couple years. It is pretty normal now. It is a bit of a battle scar but it works. Hope you eat some chocolate and your finger gets better.

cmack
 
Thanks Cmack. My finger is mostly better at this point, I only really notice the loss of sensation when I'm crocheting. The yarn feels different, it's hard to explain. I can still crochet, it just feels a bit different on my finger than it used to. I'm getting used to it at this point. I'm right-handed though and the scar is right on the pad of my right index finger, so especially at first it was a very inconvenient place to have an injury.

Oh, and if anybody else here does end up needing stitches on a finger - for future reference, if you're given the option of a nerve block or novocaine, go for the nerve block! I didn't know which one to choose so I asked the ER doctor what he would do and he said novocaine, so I went for the novocaine, but that turned out to be a big mistake. Because my cut was so deep, the novocaine wouldn't stay in the finger. So the ER doctor injected the novocaine, my finger felt reasonably numb, and he started doing the stitches. But then, the novocaine started coming out of my wound! I didn't realize such a thing could happen, but it did. And I stopped being numb. But the doctor decided to just press on and continue doing the stitches anyway. So I felt at least half of the stitches that he did. That was a really bad, painful time. I had never had stitches before in my life, but I really don't recommend feeling every stitch as it is done. That's just not fun.
 
Cat,

(Keep in mind my GP is a two tour veteran of the middle east)

I was in the ER getting help and my GP was on call and was looking at a local hockey player for a cut on his nose from a puck to the snout. The doc said, "are you a tough guy, a defensive guy or a goal scorer?" The young player(20 or so) replied, "I'm a triple threat." The doc said "All the tough guys don't need any freezing." The player said, "neither do I." He was stitched up in 3 minutes with 3-4 stitches on his face. The trainer said, "You got your looks back son, now lets go play some more hockey." And with smiles they both went back to the rink.

I was amazed at his toughness. I think that guy must have a lot of pain tolerance.

strange but true. I never could have made that one up.


I prefer the novocaine personally,

cmack
 
I had a colonoscopy and endoscopy last Thursday with biopsies and they we're all normal so I have now been told it's just IBS. So sitting here crying coz I don't think it's just IBS as I'm in so much pain and have had Diarrhea for over 3 months now. And low iron as well as high inflammation markers. Now I just giving up because I don't think my Doctor cares anymore. I didn't even get to actually see a Gastroenterologist just some Medical Doctor at the hospital 😐😣🙁
 
Lissy32 said:
I had a colonoscopy and endoscopy last Thursday with biopsies and they we're all normal so I have now been told it's just IBS. So sitting here crying coz I don't think it's just IBS as I'm in so much pain and have had Diarrhea for over 3 months now. And low iron as well as high inflammation markers. Now I just giving up because I don't think my Doctor cares anymore. I didn't even get to actually see a Gastroenterologist just some Medical Doctor at the hospital 😐😣🙁
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Lissy, I would go for a second opinion.
 
I had a colonoscopy and endoscopy last Thursday with biopsies and they all came back normal so I have been told it's just IBS. But I think it's more then IBS I have Diarrhea for over 3 months and have low iron and high inflammation markers I'm in so much pain I'm also losing weight 😐😣🙁 I feel like just giving up I don't think my doctor 👨⚕️ even cares anymore. I didn't even get to see a gastroenterologist just a medical Doctor at the hospital
 
Thank you 😊 for your quick reply. I know I know my own body well at least I think I do anyway. But Mum will only go by what the Doctor and the tests and biopsies say 😣
 
I agree,

Keep on trying till somebody listens. I have been there too. I think it's kind of like with cops, the doctors get lied to a lot, so some of them don't believe people unless it is blatantly obvious. If it doesn't stand out like a broken leg they tend to be dismissive. Just because you don't look terrible doesn't mean you don't feel that way.

Hoping you the best,

cmack
 
Lissy, I know it's so hard when you feel like they don't believe you! I agree a 2nd opinion makes sense.

--------------------

I did end up going in today. Suspected diverticulitis so I've got Cipro, Flagyl, Zofran, and some Bentyl. Here's hoping I feel well enough to make it to my cousin's wedding on Saturday!
 
Hello!
I recently started going to the GI to address some serious stomach cramping and diarrhea. Around 2012 I started having serious stomach pains shortly followed by the sweats, and diarrhea. These "episodes" lasted for an entire day and occurred about once a month. I went to my local physician in April of 2013 and he had an ultrasound taken of abdominal region. This came back completely normal, so I decided the stomach pain I was having was probably nothing to worry about. I still had days like this but nothing had seemed to be getting much worse. Around 2015 this started to happen more and more often but still chose to ignore it. Towards October of 2016 my symptoms got much worse. I began having diarrhea and intense stomach cramps weekly. It got so painful that anything I ate resulted in stomach pains. I began losing weight by about 7-10lbs/month and it wasn't until this January that I decided to see a GI. My doctor ordered CT scan, blood tests, stool sample, and breath test. (I don't have the tests in front of me so I'm not sure exactly what was tested in each) My blood, stool and breath test all came back "normal" but my CT scan showed thickening of my colon and generic inflammation. This prompted my GI to perform a colonoscopy. He found inflammation around the ileum but the biopsy came back normal. After speaking with the GI he said that because everything came back as normal, he cannot provide me with a diagnosis and suggested "trying out different foods and see what seems to be causing it." This undiagnosed phase is awful because it feels like people think I'm making it up. As some of you have said, I'm sure depression is related, but I'd rather deal with the root of the problem. I hope that we can all receive the proper diagnosis soon!
 
austinandrewt said:
Hello!
I recently started going to the GI to address some serious stomach cramping and diarrhea. Around 2012 I started having serious stomach pains shortly followed by the sweats, and diarrhea. These "episodes" lasted for an entire day and occurred about once a month. I went to my local physician in April of 2013 and he had an ultrasound taken of abdominal region. This came back completely normal, so I decided the stomach pain I was having was probably nothing to worry about. I still had days like this but nothing had seemed to be getting much worse. Around 2015 this started to happen more and more often but still chose to ignore it. Towards October of 2016 my symptoms got much worse. I began having diarrhea and intense stomach cramps weekly. It got so painful that anything I ate resulted in stomach pains. I began losing weight by about 7-10lbs/month and it wasn't until this January that I decided to see a GI. My doctor ordered CT scan, blood tests, stool sample, and breath test. (I don't have the tests in front of me so I'm not sure exactly what was tested in each) My blood, stool and breath test all came back "normal" but my CT scan showed thickening of my colon and generic inflammation. This prompted my GI to perform a colonoscopy. He found inflammation around the ileum but the biopsy came back normal. After speaking with the GI he said that because everything came back as normal, he cannot provide me with a diagnosis and suggested "trying out different foods and see what seems to be causing it." This undiagnosed phase is awful because it feels like people think I'm making it up. As some of you have said, I'm sure depression is related, but I'd rather deal with the root of the problem. I hope that we can all receive the proper diagnosis soon!
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Sounds like he should keep digging. I hope you get a diagnosis soon.
 
austinanddrewt,

I never did get a diagnosis other than, "permanently disabled due to surgical procedures." I sincerely hope that is not what happens to you too. In retrospect I would have gone to see anybody in the health care field who would take the time to listen. I know you need another opinion, maybe several. You are obviously sick. You have to be your own best advocate! I figured it out too late. Hindsight is always 20/20. Keep trying until somebody gets it.

That's my best advice, I wish you all the very best,

cmack
 
austinandrewt, I think most of us can relate to what you're going through. It's the most frustrating thing in the world to know that there's something wrong with you and not have your doctor believe you. But don't give up! I've seen so many doctors that either don't believe me or are too lazy to actually put in the needed effort. And it sucks! I'm still trying to find a good doctor, honestly. And I've seen a lot of them. I'd say definitely get a second opinion.

So far LDN is not going well for me. :( I started at 0.5mg and increased to 0.75 and now I'm at 1.0. I've been on it for 5 weeks now, I think. But I'm pretty sure it's making me worse. I have this weird, uncomfortable feeling in my stomach that I can't even describe. I also feel SO anxious, which is not normal for me. Like I've had mini panic attacks at the store twice now, where I'm checking out and I just get super anxious and start uncontrollably shaking and stuff. So now I'm terrified to go to the store. But now I also feel too horrible to even leave my house. I also now feel anxious when I'm just at home doing nothing. It's like I can feel it in my stomach and my chest, and it's just horrible. I shouldn't even be surprised though, because medications always make me worse.

I hope everyone else is doing well and can have a good weekend!
 
Akgirl, I'm so sorry to hear it, that's really frustrating and disappointing. I know that LDN works for a lot of people but not for everybody. I was really hoping you'd at least get some relief from it though. For what it's worth, I feel like this is the first week that I've been on it that I've actually been sleeping really well. I don't even remember when exactly I started LDN, I think it's been close to 3 months now. So it apparently took that long for me to get fully over the sleep disturbances. I don't know if you want to wait that long to see if the anxiety eases up as your body adjusts to it, I know if it were me I probably wouldn't want to wait that long. But I just thought I'd mention that. I had read that it can take "weeks or months" to fully kick in, and 3 months seems to be about right for me I guess.

Hi Austinandrewt, welcome to the forum and the club. That definitely is frustrating and I think all of us here can relate. It's like banging your head into a brick wall, to know that there is something definitely very wrong but to be told that your doctors can't figure out why (or to be told it's all in your head, it's "just IBS", it's stress, etc). I agree with the others who have suggested you get a second opinion. Sometimes getting a fresh set of eyes on your case can make a big difference. Finding a good doctor who takes you seriously is very important, too. It sounds like your current doc isn't taking things seriously if they've found inflammation and thickening but are only suggesting dietary changes. Obviously the inflammation and thickening are being caused by something, and it's likely not dietary. (I should add that some diets can help with IBD symptoms, and things like liquid elemental diets can sometimes bring about remission, but food triggers aren't going to cause a flare nor are they going to cause visible thickening/inflammation - they may exacerbate symptoms but not cause them.)
 
Hi thank you for starting this thread I am at the end of what I can take right now...

My story starts back in June last year started getting really bad diarrhoea to the point where I was bleeding... went to my doctors they sent me for a colonoscopy which showed an ulcer and inflammation in my terminal ilum was sent to a GI it was a 4 month wait so my husband sorted out a private appointment through his work... my consultant was not convinced I have Crohns ordered further tests which came back normal... believes I have IBS so been on restricted diet since Jan last 2 weeks I have suffered with really bad pain and my doctors and a&e won't touch me until I see my consultant again with isn't for another 2 weeks... when I saw my doctor the other day he said that he can't help me as my consultant hasn't given them any direction to treat me... I have now asked for a second opinion as when I called my consultant the other day for advice he told me to take peppermint oil for the pain
 
Blu's Tale said:
Hi thank you for starting this thread I am at the end of what I can take right now...

My story starts back in June last year started getting really bad diarrhoea to the point where I was bleeding... went to my doctors they sent me for a colonoscopy which showed an ulcer and inflammation in my terminal ilum was sent to a GI it was a 4 month wait so my husband sorted out a private appointment through his work... my consultant was not convinced I have Crohns ordered further tests which came back normal... believes I have IBS so been on restricted diet since Jan last 2 weeks I have suffered with really bad pain and my doctors and a&e won't touch me until I see my consultant again with isn't for another 2 weeks... when I saw my doctor the other day he said that he can't help me as my consultant hasn't given them any direction to treat me... I have now asked for a second opinion as when I called my consultant the other day for advice he told me to take peppermint oil for the pain
Click to expand...
That is a good idea to get a second opinion.
 
I have to go and see my GP again in 2 weeks time. But I still don't think he is going to change his mind about it just being IBS. Can IBS even cause mucus and bleeding from the bowels?
 
It took me a few years and several dr's to get a diagnosis
I ended up going to an IBD specialist and was finally diagnosed with Crohn's (small bowel) it took testing regular GI's don't do
 
Thanks for all the good wishes.

Hello to the new people - I'm glad you've found us, even though I'm so sorry for the symptoms that lead you here!

So I over did it yesterday. Thought I was feeling well enough to take a leisurely stroll through Ikea. Dumb. Good thing they have a lot of restrooms! Still nearly had an accident because I got brave and tried to EAT while there :( And got dizzy a few times and had to sit and rest.

I still think I want to go to the wedding tonight, but am seriously wondering if my big clutch would fit the small adult diapers I still have on hand :( Is that an awful idea?? My dress has a big full skirt, with tulle under layers, so it wouldn't show that I'm wearing one. I just don't know if that is an awful idea or not. Everything is happening at a hotel, so I feel it's maybe more relaxed than if it were a church then reception. Still I'd hate to have to run out during the ceremony...ugh Hopefully if I don't eat several hours ahead of time, I'd be ok?
 
Wildmtn, speaking from personal experience, I went to a wedding a few years ago on a day when I wasn't feeling particularly well. I thought I'd be okay because it was at a place I was familiar with, there were bathrooms nearby, and the food at the reception seemed safe. And I was okay at the wedding itself. But the next day, I sure paid for it. I'm not sure if I overdid it activity-wise or if it was the food or what, but I felt pretty horrendous the next day. That's just my experience of course. Weddings just involve a lot of activity and energy, plus the food that may not be so safe, so be prepared that if you do go, that tomorrow might be a rest & recover type of day.
 
Change of plans --- pain is getting worse, and I think I'm starting to get a fever. Putting myself on what I call "ED watch" where I sit quietly at home and decide if I'm ok at home or need to go in :(
 
Oh gosh, Wildmtn, that's not good. I hope you start feeling better, soon. You know what we always say on the forum - if you're questioning whether or not to go to the ER, you should just go to the ER. Don't overthink it, just go. That's my opinion. If you're insistent on waiting, maybe use that time to put together a bag to take to the ER, with slippers and things to keep you occupied (I always have a little sudoku book in my bag) and phone charger and whatever else you'd need. And whether or not you go in, I hope you feel tons better very soon! Keep us posted, worried about you.
 
mtnhoney,

I think if in doubt just go and be examined.Bringing a few things with you is a great idea, it gets boring pretty quick in there. I hope things settle down for you.

Best wishes,


cmack
 
Wildmtn, still worried about you - did you go to ER? I'm hoping no news is good news, but please update us when you can.
 

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