Overwhelmed newbie

Hi guys, newbie here... not to crohns but to the forum. I've read my way through the pages over a few weeks and feel it's time I introduced myself as I'm having such a hard time right now and I'm not even sure if it is my crohn's anymore. I'm Tammy, I'm 27 and live in the UK and I have had one of my worst years health wise since I was diagnosed, I need to feel less like a lunatic and would really just appreciate having you guys around to make me feel I'm not alone in all of this... clearly I'm not alone, I have my family and a very loving partner but I feel so "alone" in dealing with my health and my pain I almost feel like I don't belong in the real world where "normal healthy" people function day to day taking their health for granted. I've pushed my closest friends away this year as I feel I just can't relate to anyone anymore and I feel far too ill to know how to communicate this to them, they all dealt with the onset of crohn's in my life and now I'm terrified I'm at the onset of something else, something just as serious as the crohn's because I'm functioning on auto pilot scraping through each day just praying for a miracle. I feel overwhelmed by the fast onset of some really odd symptoms over the last 6 months and have a Dr that is as much use as a toilet paper umbrella in a rain storm!!! I've lost my confidence in Dr's and am exhausted with trying to make them see something that isn't staring them right in the face. I've kind of got to the point where I don't want to draw any attention to myself in anyway, this includes being as open and honest with my Dr as I need to be because I just don't feel she cares.

I'm on anti-D's so don't fear, I've been on and off them all my life as I've dealt with an awful lot in my time, not just health wise either... I suffer from anxiety and am definately a worrier - however I am not a basketcase, or a hypercondriac! I'm sure my Dr just thinks I'm mental, she told me I had an eating disorder for 2 years when I was first ill with my crohn's (I certainly looked like I had) but that was because I was starving to death NOT STARVING MYSELF TO DEATH lol! Eventually I paid to go private and was told I had CD and that I was not far from death/malnutrition!!! Gee thanks Doc, another 6 months and I wouldn't have been here to tell the tale.

Just recently though things are definately not right, this year has been a downwards spiral, I appreciate any feedback as I know a lot of you seem to be very clued up on other conditions as well so here goes...

I really don't want to offend any one on here but I terminated a pregnancy in January for some very legitimate reasons, a lot were health related and it wasn't an easy decision. I appreciate there may be some of you who don't think what I did was right and I wouldn't mention it at all if I didn't think it was the catalyst for the roller coaster I've been on ever since.

I am a chronic anaemic, Dr's can't figure it out and after what happened I bled so much for at least two months, I had re-occuring yeast infections and cystitus until March, I then got a really nasty virus that floored me for a week, I had frequent infections in my mouth as a result of my wisdom teeth coming through and pushing my other teeth away from the gums and had numerous courses of antibiotics, I couldn't have the surgery I needed for my teeth until my iron stores were acceptable so had an iron infusion. I then had surgery to have all 4 wisdom teeth out (about 8 weeks ago). Through all of this I've had an enormous amount of stress to deal with with in the family, I only met my partner in November and kept feeling under an enormous amount of pressure to get well for the sake of a new relationship but it hasn't worked out that way. All of these things have messed with my system and now I feel it's failing me and I am scared.

I've lost a lot of weight, my crohn's is grumbling but it's not my main worry right now even though I know it may be causing some of my symptoms I'm sure there's something else going on. Im nauseous A LOT, off my food, anxious about food.

I'm chronically fatigued, worse than ever before. Can't function except to get to and from work and that is such a struggle.

I'm getting Migranes or tension headaches, suffering the worst insomnia and seem to be in pain not just in my tummy but all over. My back is KILLING me, my muscles are spasming all over and my ribs feel battered and bruised especially around the sternum. My chest ends up feeling constricted when these waves of pain rush over me, I have to breath through it. My body temp is all over the place, I'm freezing 90% of the time to the point I can not bear the cold and then I get feverish. My joints hurt as well, I honestly feel as if I've been hit by a truck. It's like horrific flu waves over me 10 times a day and the rest of it is spent waiting for that wave to come again.

My glands seem to be coming up a lot and I don't know whether it's my headaches or not but my vision is squiffy, I'm sensitive to light quite often and feel really not with it most of the time. I'm getting very scatty, can't remember things and keep leaving the cooker on lol. Quite honestly I feel half mad... I hate going to the Dr's, I never seem to feel confident to go in there so now these symptoms have all built up and I don't want to go in there and list off all this incase she thinks I'm quite mad too!

My partner has been so great but I'm a wreck right now, I'm lost! I don't know how he's managing to deal with all this but he is, I'm just so tired... I feel like I know I have something else wrong and am petrified I may have another disease, I haven't dealt so well with the crohn's emotionally and don't want something else robbing me of the quality of life I deserve. Events robbed me of my childhood, crohn's of my teens and early twenties and now this. I'm a grumpy moody poo shoes and am definately having a bit of a pity party. I need a good kick in the bot bot!

HELP???

Tammy x

Hi Tammy,

And welcome to Healingwell. Only sorry for the reason you have to be here. First off, I agree with IrishMom4, is there any way you could get another opinion from a different GI? This doctor doesn't sounds like they want to do anything to help you at all, and if you leave things as is, it could get really bad. So here's firstly hoping you can get a second opinion. Also, are you on any Crohns meds right now? If so, what are you taking?

As for the joint pain, many of us suffer with joint pain. I personally have been diagnosed with Fibromyalgia and Osteoarthritis. Others have been diagnosed with another autoimmune condition called Ankolysing Spondylitis. So I would recommend you getting a referral to a Rheumatologist. They can help to get the joint pain figured out.

Also, you have mentioned that you have been on alot of antibiotics recently. Sometimes when you have to use alot antibiotics it can throw off the bacteria balance in your intestines. If you are not yet on any, I would recommend getting on probiotics. Probiotics are good bacteria you add back into your system to help combat the bad bacteria and help even out your good/bad bacteria in your intestines. I take a Lactobacillus that works well for me. One the doctors recommend is VSL#3, but these can be pricey.

Also, you mentioned having alot of nausea lately. Have you have a scope done recently? The reason I ask is I am wondering if you might have a stricture or some narrowing going on in your intestines. I know when I had stricture I was always nauseous. But also GERD can cause similar problems. So if you have not had a colonoscopy or endoscopy lately I would request them to get a better look at whats going on with you.

Sending hugs your way, we do understand what its like to be sick and tired of being sick and tired.

Hugs
Gail*Nanners*

Nausea is a common symptom of gastritis (MayoClinic.com) and 32% of Crohn's patients in one study had associated gastritis without any H pylori.

Ankylosing Spondylitis is also a condition that is also a possible cause of your problems (Wikipedia)
It mentions joint and muscle pain, nausea, eye pain and photophobia, fatigue and several other symptoms. There is a similar spondyloarthropathy associated with Crohn's, so they can happen together. You really need to see a rheumy if your GI does not connect the dots. In fact he should be referring you to a rheumy if you have told him about your symptoms. Maybe you should suggest it to him since your GP seems a bit useless.

I can't comment on everything you wrote because I haven't been sick for that long and I don't have any complications due to my Crohn's other than gastritis/stomach ulcers, but actually, a lot of what you described reminds me a lot of how I felt a few months before I got diagnosed when I believe I had an obstruction - I would get the fever/chills, throwing up constantly (couldn't even keep down water), etc. Those can also be symptoms of gastritis and stomach ulcers though, especially the constriction in your chest... The way I describe the pain from mine is "pain that takes my breath away", so it seems like a pretty good match haha. I would consider getting an endoscopy done to check out your stomach, and consider going on a medication like Pantoloc (what I'm on) or Prevacid (more common, I didn't react to it well though haha). Not sure about the glands or anything like that because I haven't had any problems with them.

Good luck and I hope you feel better!