Help...so lost

[Catlady728]

Hi, really tired and confused and looking for answers. Ive been having ‘issues’ for over a year now. Things started in the summer of 2011 when I had my gallbladder removed due to it completely stopping in functioning. Things calmed down for awhile then. But then around Jan of 2012 I started experiences symptoms that were very similar to gallbladder pain. When back to the doc he put me on heart burn meds and told me to come back. Nothing changed so I went in for an upper GI which showed what they thought were small ulcers and some inflammation. I had to see a different doc (it’s a father/son team) when I went back in and the father ended up “deciding” that it was all food related and that I did not need the upper scope that was recommended (he gave me a list of foods to avoid – 98% of which I didn’t eat anyways-which he found out through asking me right then and there) I was suppose to go back….but I fell off my folks insurance and just didn’t have the money to keep going in every few weeks. Fast forward to June 2013 (I dealt with having issues off and on up till then) I am now constantly dealing with lower right and left (by the belly button and sometimes just near where gallbladder pain would be ) and upper pain (in the sternum area) Sometimes it gets worse after eating, some times there is no rhyme or reason….almost always have some kind of pain in my stomach/abdominal area. Im amostly always nausea which makes getting food down a how lot of fun.

I am currently seeing a GI and he has done scopes (both upper and lower) the lower one was completely clear. The upper showed I had a polyp and some irritation. Did a Small bowl follow through because doc said insurance was denying pillcam it came back saying there was inflammation and irritation in the small intestine….but he didn’t really take any action other than giving me acid reducing meds (which have done nothing!) I feel like I just keep getting ‘blown off’ and told your to young to have problems – its like well im not making them up! I certainly would not making something up so I can paying thousands in medical bills….so lost. As so what to do to help myself and what to do if I don’t get results (besides the obvious of getting a different doc)

 

[dannysmom]

Seems like you need a new doctor. Maybe with a positive result with the SBFT the insurance will pay for pillcam or MRE ...?? I hope you do get more tests and treatment.

 

[Beach bum]

I would second getting an MRI if at all possible , your symptoms sound very similar to mine which were eventually diagnosed as inflammation of the small intestines via MRI.
Before diagnosis the doc suspected gall bladder trouble amongst other things, they also gave me the acid reducing meds , which I personally believe made me worse and contributed to my ending up anaemic.
Hope you get sorted soon.

 

[Catlady728]

Ok so does it normally take doctors forever to decided? Not that I want a crohns diagnose or anything…I just want to know whats going on! My GP is an awesome doctor and VERY thoroughly he basically did everything/and ruled everything out b4 I got sent to the GI. Ive been dealing with this for over 3months now kinda depressing. Ive thought about changing doctors but the one im seeing now is suppose to be the top in my area…..it just seems like people are getting hung up on my age a lot (im 27 by the way)

Ive also had a MAJOR problem with “foggy” brain hear lately. Ive always had a little for the past few yrs due to taking topomax for migraines. But it seems to have gotten really bad. Like I can be at work (Im a CAN) and ill forget a residents name(I work at a nursing home and my ppl don’t really change) or a coworkers name. Or sometimes Ill forget the right “word” or term to describe what I want to say….or not be able to spell things right….so just FYI this explains spelling errors somewhat. 

 

[Catlady728]

oh should mention too.....I havent had a fever that I know off (i wake up almost every night up and sweating though....so dont know if its night sweats or if im spiking fevers) But Ive never benn prone to a fever even w/the typical childhood sickness. Also, BM I usually end up with a lot of....well what I eat in it. I know some stuff (like corn) doesnt digest but this is stuff like carrots and GF pasta?

 

[Marielle]

In a way I totally get what you're going through. I had issues for 5 years and just kept being told it was IBS. But every year it got worse; I had stomach cramps all the time, sharp shooting pains, not sleeping at night, I also woke up sweating a lot, in the bathroom after every meal, etc. I had a colonoscopy when I was 18 and they said I was fine and now I'm 23 and they did it again and finally found that I have Crohns. And to find that when I was 18 they didn't go far enough to see my small intestines. This summer before my results came in I was in and out of the doc and even went to emerg, and of course they tell me they "think" its Crohns and I felt that I was getting passed off to different doctors. I eventually found out and of course not a diagnosis I want but I was at the point of just figure it out already! I need to know so I know how to help myself.

Till I was actually taken seriously I tried to avoid foods that I knew irritated my body like spicy food, dairy when I could etc. It helped a bit. I also found that the pain and symptoms were worse when I was stressed (in school or stressed at work). I did notice before after meals I felt nauseous, always bloated, when I have to pee the cramps would get worse. I try to eat smaller meals to avoid feeling sick and I'm not sure how it is for you but when I eat I don't feel myself getting full, Id notice when I was at the point that I was in pain.

oh and try rice pasta- I find that is easier to digest than GF. Try avoiding raw veggies, seeds, nuts, fruit peels, soy or almond milk and see if that helps at all. Worth a try.

Hopefully this helps,

 

[Beach bum]

I find my night sweats are associated with low iron (anemea) so when I have a bout of them I double up for a bit till I see them off.
I also had memory problems before I was diagnosed, I think I read somewhere it can be associated with anaemia and low B12 too, as vitamin B12 helps to keep the nervous system (brain, nerves and spinal cord) healthy.

 

[Catlady728]

ok so this may sound really stupid. but what is a night sweat considered to be? Ill 9 times out of 10 wake up anywhere from 1-3 VERY hot dont always feel "sweaty" just hot.....like the fan in my room cant keep me cool enough. Ive taken to sleeping with a regular fan (ceiling) and a portable one that I use every nite.....Dont wake up every nite now....but still do on sme. This (early Friday around 2am) was really bad had to get a ice pack and lay uncovered till I finally cooled off and feel back alseep.

 

[Beach bum]

Well for me personally - I usually wake in the night from a bad or strange dream, to find I am actually covered in sweat, as in there are pools of it sat on my skin and I am not in normal day to day life prone to sweating.In fact I am far more likely to be shivering with cold.
But what you describe sounds like it could be your version of a a night sweat , we are all different.

 

[Catlady728]

Yeah I dont really sweat "normally" during the day.....I work as and Aid and it can be super hot in the buidling at times.....the other aids can be dripping with sweat.....and while Im hot and burning up....Im never dripping sweat. Lol until the middle of the night....then I get sweat. :-/ Thanks everyone though for the input/suggestions. Still trying to figure things out and deal with what the insurance will/wont allow me to have done. Suppose to be getting a Sed rate CBC done..... and my GI is suppose to be getting the camera test worked out to be approved...... really hoping I can get it, for piece of mind if nothing else.

 

[Catlady728]

also does anyone know how common it is to have constipation and have crohns? I have very few BMS and what I usually do have are rock hard and very hard to pass. And then after all the work its only a little and I am lift with the feeling I still needing to go....but nothing being there. I do have D but it is not near as bad as what some people say they have had it usually tends to be C and I think that is partly why my GI is convinced that there is nothing going on....even though Im in constant pain and always nauseas....(I do ok with eating but there are days when Im taking nausea meds around the clock...just to ensure Im not puking up everything)

 

[Beach bum]

I actually don't have D much and do suffer from C more. I usually put it down to being dehydrated and try to up my water intake.
Meds can do it to me too, ironically the iron that I take when I feel bad can block me up and when I was taking some pain meds everything seemed to grind to a halt so I ate some dried apricots which always get me going.
Don't let anyone tell you its not crohns just because you are not on the loo all the time.

 

[Catlady728]

thanks I went to my GP today since its impossible to get into GI at short notice....first thing he asked was what about pillcam have they done that yet? when I said it was denied the first timme my GI tired and he hasnt tried since....he said he would see what he could do. so maybe I will get somewhere with that now? Dealing with a TON of pain these last few days.....its at the point where it wakes me up usually around 1-3 in morning then I never turly get back to sleep. Anyone got anytips on how to handle deal with pain? I have tramadol (sp) but it doesnt really help all that much. I also take Northriptyline HCL at bed time. I use a heating pad a lot too.