Crohn's new to me ** Am I going CRAZY **

[jersey]

Hi Everyone,

I recently advised via biopsy that I have Crohn's.. Can you guys tell me if this is a for sure confirmation of the disease? It was done via a biopsy of the lip oddly enough.

I have been waiting over 3 months to get into a GI specialist and have always had stomach issues and just thought I had a sensitive stomach.

My symptoms include:
Severe constipation for up to 1 week or 2 weeks and then I will get severe diarrhea for the same amount of time.. I find I only oddly enough get severe diarrhea during day hours and by evening I am fine.. I do tend not to eat anything all day as I work and fear of always being sick at work, which happens most days so now I just avoid it.

As the day progress I start to get super bloated and instead of losing weight it seems I gain it quickly which is odd since I barely eat.

I find I can't have milk, salad, granola bars, fruit, anything and everything makes me sick.

I was just wondering are common things with Crohns?

I am starting to feel like I am making this all up in my head!! if that makes sense is it me telling myself I am going to get sick if I eat and sure enough I try to eat lunch and about 40 minutes later I get sick.. sometimes I get sick after dinner but seems more anywhere for 6 am to 5 p.m.

HELP!!

Thanks everyone for hearing my story.

 

[DJW]

Hi and welcome.

Biopsies are the gold standard for diagnosis.
It is NOT all in your head.

Sending you my support.

 

[crohns510]

sounds like my day with crohn's dealing with a obstruction or partial blockage the size of a pencil

 

[UnXmas]

Biopsies are one of the best tools of diagnosis, though I must admit I've not come across anyone being diagnosed by a lip biopsy before. What was the reason for the lip being the place from which the biopsy was obtained? Have you had any tests on the rest of your digestive system?

Your symptoms sound a lot more than just a sensitive stomach. Constipation is less common than diarrhoea with Crohn's. If you've not yet had a colonoscopy and other scopes or imaging tests of your digestive system, they may be needed to determine why your disease is presenting this way, and your doctor will need the test results to determine the best treatment.

If you're gaining weight but eating little, it is probably a short term fluctuation due to water retention or constipation, i.e. the increase of waste in your body causes your weight to increase rather than you actually gaining fat.

When are you next seeing a doctor? It sounds like you need more information from tests to get a better understanding of what is going on.

 

[jersey]

Thanks Everyone for the reply.. Again i wake up and the stomach cramps start.. So I am trying some crackers hopefully it won't make me sick.

I had a lip biopsy as this all really took effect about 2 years ago.. it started with my face swelling and then it made my lips swell to about 2 twice the size.. So they ended up doing a normal biopsy in the hip which seems to come back okay.. they still could not figure it out.. as my lips and face were so swollen they decided to give me a lip biopsy and that came back as Melkersson- Rosenthal syndrome and Crohns .. So they treated me for the lip issue ( BTW none of the medication helped for that I was on pills for a year with no improvement) they ended up giving me cortisone injections into my lips which I have to say worked wonders has taken my swelling down a lot!! But I still have the stomach issues which is why they are now sending to a GI specialist, but being that it is lovely Canada that can take up to a year before I can even get in to see him.

So I am torn and what to do, I can't eat, I am tired, grumpy and just over this whole thing. Is it really Crohns since it came back that I had both I am more confused with ever .

I have researched and been on this site.. and it seems I have a lot of the symptoms and at the same time a lot of different ones too.. or that mine are not as severe as other people, I guess it makes me more confused because I don't know if there is different levels to Crohns .. what I should eat?

Thanks again,

 

[UnXmas]

You will need tests to determine what is going on with your digestive system. I am not familiar with your lip problems, but if a biopsy suggested Crohn's and you have digestive issues, it seems likely that Crohn's is causing those too.

As you alternate between constipation and diarrhoea, it may be difficult to find a diet that suits you. A low fibre diet can help with diarrhoea, but may not be the best thing for constipation. Usually a lot of trial and error is necessary to work out what is best to eat. Don't worry about following any of the extreme diets you read about or contradictory advice. If you feel food is provoking symptoms it may be best to try a diet of soft, bland food. How did the crackers go?

 

[jersey]

Well, I ate the cracker and my stomach is hurting.. it is starting to get sore and bloated and I feel like by later afternoon I will get sick.. Does that make sense? it is like I know and feel it is starting. It is hard to explain but first it starts like this the stomach cramps and then I get sick... and I def know if I eat anything else right now or the rest of the day I will for sure be sick.

It feels like it is on the brink of getting sick, but sometimes I can stop it by not eating anymore for the day, until I get home (as I work full time) and then I will eat and get sick.. I am so confused by this whole thing.

 

[Pixie100]

Well, I ate the cracker and my stomach is hurting.. it is starting to get sore and bloated and I feel like by later afternoon I will get sick.. Does that make sense? it is like I know and feel it is starting. It is hard to explain but first it starts like this the stomach cramps and then I get sick... and I def know if I eat anything else right now or the rest of the day I will for sure be sick.

It feels like it is on the brink of getting sick, but sometimes I can stop it by not eating anymore for the day, until I get home (as I work full time) and then I will eat and get sick.. I am so confused by this whole thing.

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Hi Jersey,

It sounds like you and I have a similar presentation.

I have been diagnosed with both Crohn's and Behcet's and was just released from hospital after a Behcet's flare. My symptoms, too, include severe bloating, mouth and throat ulcers, fatigue, and joint pain. (I have also had a section of tongue removed due to ulcers that became dysplasic). When the bloating is out of control, I require clothes 2 sizes larger than normal.

I have been on Remicade for the last 8 years with great success until recently. My symptoms returned over the last 6 months and eventually flattened me. My doctor added Methotrexate to the mix, and much to my surprise, the bloating has disappeared and the pain has subsided.

Your symptoms make sense to me.

 

[rubberduckie1313]

I have almost the same issue. I always gain weight during flare-ups. This is usually because they put me on Prednisone right away, but I can also attribute it to not being able to eat very healthily during a flare up. I also, usually suffer from severe bouts of constipation. Last time I was hospitalized, it was because they were afraid if things didn't start moving I would get a blockage as a result of inflammation. In many cases, constipation can be a worse foe than chronic diarrhea but, both are not fun. Every case is unique with this disease, you are not crazy. Do what you need for you and I hope you are able to get things moving in the right direction soon!!