What is wrong with my bowels?

[GeneralDisarray]

As a preteen I was diagnosed with IBS, but in the past few years my symptoms have gotten much worse. I have mucous in my stools, a lot of bloating, and cramping, but I expect that. These symptoms are chronic depending mostly on what I eat. What worries me are the episodic symptoms that started 5 years ago. It started with this pain in my stomach that felt like I was doing sit-ups, and nausea. I had recently given birth to a daughter who was 3 weeks premature, and weighed only 5lbs. I figured the pain was due to being pregnant, and it eventually went away. 2 years later I had my son who was full term, and weighed 10 lbs. I started having the tightness in my stomach again a few months after having him, and noticed that it was effecting my appetite. It went on for 6 months, in which time I lost 90lbs. My doctor was concerned, and ran some tests. He said there was a high level of blood in my stool, and referred me to get a colonoscopy, but I never did it because I was really scared, and then the symptoms stopped shortly after, and I gained 30lbs back. I had talked to my doctor about Crohns, but he insisted that I would have chronic diarrhea, and I am chronically constipated. I give myself water enemas just to take a dump. I find that I only get loose stools if I eat seeds or popcorn, and sometimes after I exercise. Anyway, 2 weeks ago the symptoms started up again. The nausea is a lot worse this time. I feel like I did during the first 3 months of my pregnancies, like I'm hungry and wanna puke at the same time. I am definitely not pregnant, and have little to no chance of getting pregnant again. The tightness in my stomach gets very intense at certain times a day, (in the morning and before bed) and it literally feels like I'm doing crunches. Last night in bed I found that laying on my stomach seemed to help. What I want to know is if anyone has ever experienced this type of pain with gastroduodenal Crohns, which from what I understand is the only type of Crohns that doesn't include diarrhea. However, it says that this type of Crohns effects the small intestine, and stomach, and is very rare. I'm wondering what people who suffer from this experience, and if anyone can relate to the tightening in my abdomen. Are my symptoms concerning enough to get tested for Crohns, or should I be contributing this to IBS?

 

[Lizzie]

Hello. Welcome to the forum. It sounds like you should definitely get a colonoscopy done, as this is the main thing that is done to get a diagnosis. If you're passing blood then that is definitely not a symptom of IBS, as you probably know. While it might just be from piles or something, it's often a sign of Crohns or ulcerative colitis. Many of us with Crohns suffer from diarrhoea and constipation, but some people with Crohns of the small intestine do only get constipation. It's less common but I don't get the impression from posts on this forum that's it's terribly rare either, and definitely doesn't rule out Crohns. Unfortunately, a colonoscopy is probably the way forward.

 

[ronroush7]

I agree with Lizzie.

 

[Jabee]

I'm one of the few who suffers constipation rather than diarrhea; my crohn's is located only in my small intestine.

 

[eleanor_rigby]

I also virtually never have diahorrea - the last time was probably once during the summer. My symptoms are cramps like waves of pain in the centre of my abdomen. My crohn's is located at the end of my small bowel (terminal ileum) where it meets the colon. My disease can be seen during a colonoscopy. I would strongly recommend you getting a colonoscopy based on what you have said.

 

[Sophabulous]

As a preteen I was diagnosed with IBS, but in the past few years my symptoms have gotten much worse. I have mucous in my stools, a lot of bloating, and cramping, but I expect that. These symptoms are chronic depending mostly on what I eat. What worries me are the episodic symptoms that started 5 years ago. It started with this pain in my stomach that felt like I was doing sit-ups, and nausea. I had recently given birth to a daughter who was 3 weeks premature, and weighed only 5lbs. I figured the pain was due to being pregnant, and it eventually went away. 2 years later I had my son who was full term, and weighed 10 lbs. I started having the tightness in my stomach again a few months after having him, and noticed that it was effecting my appetite. It went on for 6 months, in which time I lost 90lbs. My doctor was concerned, and ran some tests. He said there was a high level of blood in my stool, and referred me to get a colonoscopy, but I never did it because I was really scared, and then the symptoms stopped shortly after, and I gained 30lbs back. I had talked to my doctor about Crohns, but he insisted that I would have chronic diarrhea, and I am chronically constipated. I give myself water enemas just to take a dump. I find that I only get loose stools if I eat seeds or popcorn, and sometimes after I exercise. Anyway, 2 weeks ago the symptoms started up again. The nausea is a lot worse this time. I feel like I did during the first 3 months of my pregnancies, like I'm hungry and wanna puke at the same time. I am definitely not pregnant, and have little to no chance of getting pregnant again. The tightness in my stomach gets very intense at certain times a day, (in the morning and before bed) and it literally feels like I'm doing crunches. Last night in bed I found that laying on my stomach seemed to help. What I want to know is if anyone has ever experienced this type of pain with gastroduodenal Crohns, which from what I understand is the only type of Crohns that doesn't include diarrhea. However, it says that this type of Crohns effects the small intestine, and stomach, and is very rare. I'm wondering what people who suffer from this experience, and if anyone can relate to the tightening in my abdomen. Are my symptoms concerning enough to get tested for Crohns, or should I be contributing this to IBS?

I have duodenal crohn's and what you describe is similar to what I experienced. Do you get heartburn or acid reflux at all? I never had much pain, but more a feeling of extreme fullness after eating. To be honest I was eating so little I'm not surprised I had no pain, and I would often vomit after eating more than a few mouthfuls anyway so maybe it never got to the point of being painful. I also had multiple duodenal ulcers which is nothing a good PPI medication won't sort out. Like you I completely lost my appetite and lost a lot of weight very quickly. I don't actually have any kids, but my understanding is crohn's can often settle down during pregnancy, and then flare up after giving birth from what I've read so what you say would fit. I can also completely relate to the feeling hungry but completely sick at the same time you described!

I actually had 2 upper GI endoscopes (they didn't take biopsies the first time and misdiagnosed me) and it was only after the second one when the results suggested crohn's, that I had a small bowel MRI and a colonoscopy. This revealed severe crohns in my terminal ileum too. In short I have a very severe patch at the beginning of my small intestine, and another at the end, but nothing in between. I don't think it's hugely common but not unheard of either!

My advice to you would be to push for an upper GI and go from there, but make sure you insist that they take biopsies if it does appear inflamed. It's honestly nothing to be worried about, and barely any preparation required. I had one without sedation and one with, but if you're nervous then definitely take the sedation as you won't remember much afterwards and you aren't aware of what's happening at the time. I believe all colonoscopies are done with sedation so don't worry, even though you aren't aware you are treated with a lot of dignity and respect.

If I'd been referred for a colonoscopy in the beginning I wouldn't have gone either, however I ended up so poorly in the end I would have let them open me up or do anything to get some answers and find out what was wrong.

I know it's scary, but I promise it's the best way to find out what's happening. I would also ask your doctor to check your iron and b12 as I believe these deficiencies are common with small bowel crohn's. I used to get terrible brain fog, anxiety, fatigue beyond belief, freezing cold extremities, very pale etc. All fairly common signs but I was a bit doctor phobic and wouldn't go to a GP unless I was at deaths door. I could have been diagnosed years ago if I wasn't so dismissive! ;-)

I've always been more prone to constipation although I do get occasional diarrhoea now, usually following being constipated. That's a few months down the line from diagnosis and trialling a few different medications though, so things are still settling down. I feel loads better overall and it's well worth getting checked out just to put your mind at rest.

Take care, everyone here is so knowledgable and we've all been through the same thing. Good luck and do let us know how you get on

 

[Clash]

Gastroduodendal CD isn't the only location of CD where patients don't experience diarrhea. My son's disease at dx was located at the ileocecal valve and up a bit into the terminal ileum. He didn't experience diarrhea. He did have some trouble with constipation though.

After surgery his disease has spread throughout his colin still he doesn't experience diarrhea.