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Broken Faery
New Member

Date Joined Aug 2009
Total Posts : 7
   Posted 8/6/2009 4:23 AM (GMT -7)   
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!


Tammy x
Crohn's terminal ileum, 27 now (dx'd age 21)

Regular Member

Date Joined Sep 2008
Total Posts : 457
   Posted 8/6/2009 5:59 AM (GMT -7)   
I am sorry to hear you are having such a rough time. I don't know much about the UK health system but is it possible to find a new GI?

Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/6/2009 6:27 AM (GMT -7)   
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.

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Broken Faery
New Member

Date Joined Aug 2009
Total Posts : 7
   Posted 8/6/2009 7:08 AM (GMT -7)   
Thank you for your replies, it's not my GI that's the problem it's my regular Dr, my GI is such a lovely guy but seems to think the only problems you can have are IBS and crohn's symptoms... i've had nausea issues the whole way through and there seems to be little explanation for it... anti nausea meds don't touch it either and I know anxiety doesn't help in that respect. My GI has taken stool samples to see whether I'm bleeding higher up to see if that is causing my anaemia, he want's to do a colonoscopy as well but it's a way off (things are so slow this side of the pond unless you pay privately for everything)!

I went to see a natural Dr last week (they are helpful but it's a shame they don't have any credibility with the medical profession), he basically said my spine was in a bad way - which i'm well aware of and it's clearly visible with out having to touch it but my regular Dr keeps fobbing me off... it's normal to have a crooked spine apparently! I've just had thoracic xrays done on it and they came back normal... I nearly had a fit and the natural Dr says things are regularly missed if it isn't a specialist that examines your xrays however I saw a fill in Dr the other day because mine is away and she agrees i need some physio at least... if the physio feels it's a bone problem i may get a referral to a rheumy but that's the only way to get one. My GI won't refer me as he says the xrays are fine and he doesn't seem to be making the link between spines and crohns... Your Dr's seem so much more "ON THE BALL" over there.

I'm on azathioprine right now, I do take probiotics as well and I am desperate to see a Rheumy (my other half will pay privately for me if I have no luck with the physio bless him). The back problem started at age 15 but I've never been taken seriously with it and I think after a few too many rejections in the Dr's office you lose your confidence and just think oh well... maybe this is normal!

I have looked over the Fibro forum, it all sounds very familiar indeed and I guess there's a part of me that worries I may have that or some kind of thyroid or adrenal insufficiency, I've done a lot of reading about the adrenals and wouldn't be suprised if mine were utterly exhausted lol, they have had an awful lot of responding to do to an awful lot of stress in my life and i remember saying at the beginning of the year i felt like my body was giving up on me and couldn't cope with all the stress any more... maybe that's it.

Thank you again, you seem a lovely bunch x
Crohn's terminal ileum, 27 now (dx'd age 21), IBS, Anxiety/Depression, Anaemia

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 8/6/2009 2:00 PM (GMT -7)   
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.

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 8/8/2009 12:30 PM (GMT -7)   
Please know that you are not alone...many of us, like you, are in similar situations. Me...haven't been able to work for 2+ years. One day I feel "okay" and the next day I have a hard time making it from the bed to the couch. Oh and it can change from hour to hour too...You feel great in the morning, make plans, but by lunch, you're praying to the porcelain God for mercy. It makes it hard to plan time with friends and even family.

I have the crohn's ulcerations in my stomach,I mouth, and to a lesser extent, my esophagus...I don't have H. pylori. The constant nausea is tiring in and of itself. I have been on PPI's for the last 6 years or so...but I also need the phenergan, and the Remicaide and Cimzia (been on both, now on Cimzia) have been wondrous for helping with the stomach issues.

Keeper and Nanners had good ideas. Also, have them check your SED rate and CRP in addition to the standard CBC and chem panel blood work. Both tests can show inflammation that may be going on throughout your body, even there may not be "gross" (easily identifiable) manifestations...These blood tests give a better picture of what is going on...but also know that they are not difinative if they show up negative. (Mine tend to be very high...I also have many of the external manifestations)

Here's seeing you around on the forums...take care... wink
"The earth laughs in flowers"

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 8/9/2009 9:39 AM (GMT -7)   
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!

Broken Faery
New Member

Date Joined Aug 2009
Total Posts : 7
   Posted 8/11/2009 1:21 PM (GMT -7)   
Thank you so much again guys, I'm seeing my GI in a couple of weeks so I'm going to mention the gastritis possibility... i know he wants to do a colonoscopy (OH SUCH JOY) so i may see if he will do an upper endo as well as i truly believe my symptoms are higher up. I will push for the Rheumy referral as well as I'm desperate to get this back issue diagnosed once and for all. I really appreciate your feedback and will hopefully be seeing you guys around much more from now on. My boss keeps telling me i'm a tough cookie and i don't think we give ourselves enough credit in dealing daily with pain, he took me off for a talk the other day and said he could see i was having a bad time... he discussed it all extensively with me and it felt so good to have his compassion. He's a good friend and i was his bridesmaid 2 years ago, i don't want to let him down and have him see this cookie crumble before his very eyes so having you guys around for support will be my saving grace i reckon.

Thank you, for you advice and warm welcome x
Crohn's terminal ileum, 27 now (dx'd age 21), IBS, Anxiety/Depression, Anaemia

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