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03-17-2014, 03:43 AM   #1
Jennifer
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Sufferers of Multiple Illnesses & IBD Support Group

About this Support Group

This support group is for members who seem to suffer from almost everything under that sun (or at least it feels that way sometimes). "If it's not one thing it's another," takes on a whole new meaning here.

In this group we can discuss multiple topics including:

- What do you have?
- How do you juggle all your appointments?
- Do you still manage to work?
- Taking meds takes on a whole new meaning, how many are you taking?
- Why does it seem like everything is a small white pill? Hope I took the right one...
- Do your doctors get along?
- How do you know if it's X, Y or Z acting up again?
- Any tips for the best tests out there for your specific medical conditions?

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03-17-2014, 04:23 AM   #2
valleysangel92
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I don't quite suffer from everything under the sun (yet, I think my doctors are determined I will though ) but I have a few little beauties that love to cause chaos, so maybe I qualify for this.

What I have -

Coeliac disease - autoimmune gluten intolerance/allergy, severe case (TTG supposed to be under 10, they gave up counting mine when they got to 200, this happened on about 6 repeat tests), currently under good control (no thanks to doctors) diagnosed at age 14 after a year of testing.

Familial Hypocalcuric Hypercalcimia - Too much calcium in my blood stream, my body is not realising when calcium levels get higher than normal, until they are at most people's danger levels, so it doesn't get rid of it through urine unlike most peoples, I have probably had this all my life, so my body learnt to cope. I have to have careful monitioring and stay away from calcium supplements. Diagnosed age 15.

Osteopenia - Just like many others here, I have thinning bones, I can't remember what my bone score is, and my various specialists cannot agree a suitable treatment, or which of them is even responsible for finding one. Diagnosed age 17/18 (Can't fully remember)

A variant of TMJ - When I was growing, my jaws didn't grow correctly, which has resulted in my bottom jaw being a little too short and my top jaw being a little too long.. I am currently in discussion about having braces and surgery to create a better bite and make eating etc easier. Diagnosed at 17.

Asthma- diagnosed at 18, when I was diagnosed I was catergorised as modertate-severe now catergorised as mild, still use a steroid inhaler every day.

Query inflammatory arthritis/chronic pain/fibromyalgia Currently don't know which, but my rheumy is saying that all the joint pain and tenderness is more than likely down to one of these three things, so I'm having Isotope scans in April to look for inflammation.

And of course.. the lovely crohns, which isn't behaving itself as much as I'd like it to at the moment..

I currently don't work, per doctors advice.

I'm currently taking - Vit D3 800IU x 4, Mini-pill (extreme period pain, endometriosis has been mentioned several times, never had tests), Steroid inhaler x2 daily, buscopan 2x 10mg when needed, cocodamol 8/500 when needed, tramadol 1-2 x 50mg when needed (very rarely use it) and my doctors are arguing amongst themselves over me taking Alendronic Acid, currently not taking. I'm not taking any crohns meds, another thing my doctors are arguing about. I would feel safer if I was.

I keep track of meds with a weekly pill dispenser, or at least I did last year when I was taking something silly like 28 pills a day..

My doctors get along some times, currently, they can't agree who is supposed to treat the osteopenia, I have 2 GIs, one of them is an IBD specialist, but I only see him about once a year, so I have to see the non specialist most of the time.. I used to really like him, but my last appointment made me less sure.. My rheumy spent the first ten mins of our appointment correcting other doctors mistakes, and my endocrinologist doesn't think the high calcium is his problem, and made me feel like a little kid, telling his registra to 'reassure me and send me home'. I was only there because one of the GIs sent me there because he wasn't sure what to do..

I'll come back with some tips another time.. this post is turning into an essay


Edit- I forgot to add, that I also have fluid around my lungs, and I've had cysts on my kidneys (not sure if they have ruptured or not) .
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin

Last edited by valleysangel92; 04-01-2014 at 04:34 PM.
03-17-2014, 05:31 AM   #3
mdd
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Thanks Jennifer for this support group. I know lots have other issues we are dealing with. I my self have heart trouble, bypass, kidney stones, PSC(liver disease), and crohns . With those comes lots of meds. Attacking my body. In the last 4 years Changing meds. Because of side effects! And being in the middle of two or more doctors arguing about why that doctor change My meds and why. Cannot function. It's hard ! When you feel something's wrong, pain. You have to stop and figur out what is it , Heart, ,crohns ect. Then who to call? As I did this weekend went to the ER with chest pain. But my heart doctor was upset that my PC doctor took me off Lipator. I'm home now and have to see my PC doctor. Tomorrow and hear him yell.( sorry for the spelling) lots of trauma with heart surgery may show up. Because it's a shock to your body. It's amazing that the Crohns takes a back seat to the other illnesses. Until it wants it's time!! Haha . I know why I get depressed and low. And I cannot work any more on SS DISABILTY I want to help people. But cannot commit because I never know how I feel each day. thanks. Guys Maria
03-17-2014, 06:51 AM   #4
UnXmas
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· Stoma
I'll join. But my primary illness is a unique genetic condition causing progressive neurological/rheumatological deterioration, with no clear diagnosis. I also have endocrine problems (undiagnosed but including ovarian failure). I have osteoporosis but I barely remember I have it as it causes me no symptoms.

I find it kind of hard to discuss my other illnesses on this forum. I'm so much sicker than the vast majority of forum members, it's difficult to see people saying they are suffering with being ill, when Crohn's is the least of my medical worries. It concerns me that I'll come across as unsympathetic, whilst at the same time it frustrates me greatly to see people so oblivious to being really sick (I mean dependent on carers, no chance to work or have kids, knowing it will only get worse even though I'm so young). People don't understand physical and emotional pain.

That's just something I had to unburden myself of; this thread seemed like a place to do that as perhaps there is someone else feeling the same.

Last edited by UnXmas; 03-17-2014 at 07:16 AM.
03-17-2014, 08:44 AM   #5
Kero
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undiagnosed Colitis or Crohn's, I also have TMJ and had endometriosis issues in the past. I also have depression/anxiety issues

Last edited by Kero; 03-17-2014 at 08:45 AM. Reason: editing to add something I forgot
03-17-2014, 10:43 AM   #6
Mike58
 
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Great idea Jennifer.
I have Crohn's, Heart Failure (HFpEF), Diabetes, Hypertension, Peripheral Neuropathy.
I had to quit my job officially in February this year even though I haven't been able to work since July 2013. I've applied for SSDI and am still waiting.
It does take some planning and juggling skills to work out all the appointment. For example, I will see 4 different doctors in 2 days plus labwork.
It becomes a full time job just managing your own health as I now have to track my sodium input, glucose monitoring 4 times daily, and then try to figure out what to eat that won't unbalance one of these diseases. My uncle asked me what am I doing with myself now that I am not working, I told him I just sit around counting my pills!!!

My doctors are somewhat online with each other but I'm not convinved they care talking to each other all that much. Are we having fun yet?
__________________
Crohn's DX October 2012. Ileum and small bowel resection August 2013. On Remicade, Methotrexate, Percocet, Lipitor, Insulin (type 2 diabetes), Metformin, Hypertension meds.
03-17-2014, 06:09 PM   #7
mdd
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Yea I'm going to two doctors this week. And I'm in the middle again! One change meds the other gets mad. I have two Gi doctors two heart doctors, urologist , one Liver doctor PSC, therapy for my depression, anxiety attacks, I believe I see some one each month of the year. I go to the office like people go to the store. I bring my iPad, headphones. I get ready to Waite a long time I'm used to it . Do not plain anything . I know my doctor will take time with me when I go in the exam room. I have patient about waiting. And hear people say they've been waiting a long time. Wow cool it! As long their is a bathroom I'm cool!!! Haha
03-17-2014, 08:31 PM   #8
Essieluv
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I have Crohn's, Asthma, Chronic Migraines, autoimmune arthritis, chronic tachycardia without syncope, lactose intolerance, IBS, Pilonidal disease, an esophageal condition, and a sleeping disorder. I also suffer from chronic and sever nausea unrelated to Crohn's, although we can't pinpoint a diagnoses yet (I suspect gastroparesis).

Overall, most of my docs are pretty easy to work with and don't mind "sharing" me. The best have definitely been my Rheum, Colorectal Surgeon, and PCP. The worst have been my GIs. They are a breed all their own, for sure.
__________________
Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
03-18-2014, 01:55 PM   #9
Essieluv
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I think the hardest part of dealing with multiple illnesses is trying to determine which symptom belongs to which disease/illness. Especially when the conditions you have share similar symptoms. It can be very frustrating and overwhelming. But I do think that, after time, it becomes easier to recognize what disease/illness is acting up.
03-19-2014, 04:23 PM   #10
Jennifer
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I have Crohn's disease, Osteoarthritis, Tachycardia, insomnia, depression, panic disorder, Agoraphobia, bad acid reflux (never diagnosed as GERD), bruxism (not being treated), overactive bladder, asthma (however it's not bad enough to require medication), I also get many migraines (with visuals sometimes) and I have multiple bulging disks in my spine which put pressure on the spinal cord causing various parts of my body to go numb and hurt. Just started having allergies too so yay, another small white pill. :P

@ Mike58 - I completely agree that taking care of our own health with all of these issues really is a full time job. I still manage to do my job here on the forum though which I think also helps distract me from everything else.

I'd love to be able to start working again but I'm not currently able because of active Crohn's, the panic attacks, arthritis and bulging disks. I'm in pain and constantly tired. I manage to get all my blood work and tests and appointments done on time as if it were my job.

This might sound silly to some of you but I was diagnosed when I was pretty young (9 years old) so when I started taking a lot of meds, a new one added always seemed like a trophy. I would brag about how many I could take all at once and in a way enjoyed it (nothing better to do when you're really sick I guess) but now that I'm 31 years old, I hate the site of how many I have and try to get rid of the ones I feel aren't necessary. For instance I do have overactive bladder but each medication I tried only made things worse so I stopped taking it and feel better so there are times when dealing with a health problem could be better than taking the medication for it, just depends on how the meds affect you and whether or not it's really benefiting you in any way. I don't take any medication for depression either but I do take medication for anxiety which I believe is helping with the depression and the Agoraphobia. Wish there was one pill to tackle them all.

Edit: I'd also like to have children but with SSI you don't get a lot of money and every extra cent my husband makes that goes over a certain amount at his part time job get's taken out of my SSI check. We can't even afford a car. I'd love to have a car at least and find a two bedroom somewhere where my husband and I can eventually start a family. With all my meds on top of all that though, that's going to be one hell of a planned pregnancy for sure. I hope we can some day. If it's even possible for me to conceive. Never tried before and have been on birth control for over 15 years.

Edit 2: There's also various forms of cancer in my family, diabetes and heart disease. I'm hoping that I don't go down any of those roads as well but it's a very real possibility. Hence another reason to see your doctors often no matter how minor you think the new symptom is.
03-19-2014, 05:03 PM   #11
Essieluv
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Just curious, @Jennifer do you know what causes your tachycardia? My cardiologist can't seem to pinpoint anything, and it's driving me nuts.
03-19-2014, 06:05 PM   #12
valleysangel92
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@essieluv and Jennifer, I've got tachycardia too, didn't even think to mention it. I've had a few ECGs but to be honest it's never really been looked into that much for me.. My doctors seem to think it's not something they should be 'poking me about ' over.

Essie have you had your calcium levels checked? high calcium was thought to be the cause with me for a while, but then they decided it probably wasn't related and it was just coincidence, but it could be something for you to get looked at.
03-19-2014, 08:57 PM   #13
Jennifer
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Nope, no idea. Apparently it's too mild they they don't want to bother with it either. I've had stress tests, many EKGs and a couple holter monitors but the tests never pick up anything major worth noting. So I take a beta blocker to reduce the palpitations.

My mom and her father both have really bad heart problems. My mom hasn't said that she has it (even though she takes all the meds for it) but I know my grandpa has heart disease and now congestive heart failure and had a pacemaker put in recently. So hopefully my heart will just keep it's little palpitations and minor pains to a minimum and nothing more. You guys too. Heart problems scare the crap out of me.
03-20-2014, 02:03 PM   #14
carrollco
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*sigh* I have Crohn's, Diabetes, currently under control with weight loss, hiatal hernia, Hashimotos, spondylitis something or another, degenerative disc disease, and right now, I have 2 discs out in the lumbar region, one in the middle back area, and my neck is toast. Of, yeah, arthritis, and they thought I had RA because of the knots on my hands but the test came back negative. Thank God.

__________________
Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
03-20-2014, 02:12 PM   #15
carrollco
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Oh, I also have tachycardia that I take meds for. It is quite a struggle to keep the heart rate somewhat low without bottoming out the blood pressure. My cardio said that sometimes the autonomic something or other breaks and the heart rate speeds up. In any case, my heart and all my blood vessels are great.
03-22-2014, 02:29 PM   #16
HorseLover!!
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Other then Crohn's I have TMJ (currently still being treated possibly having surgery ), depression, anxiety attacks, asthma(currently not taking anything), possible arthritis(not been fully diagnosed yet, waiting to my doctor about it), also had ulnar nerve entrapment-had surgery last year to put it right.
__________________


Had my first Colonoscopy and Endoscopy at age 2 1/2 years old

Diagnosed with Crohn's in 1998 when I turned 3

19 Years and counting with Crohn's!

Previous: Prednisolone and Pentasa slow release, Had tube feeding at age 3, Azathioprine

Currently in a flare but not taking any medication because doctor hasn't bothered to prescribe anything

My HORSE is not just a HORSE, he is my SANITY, my HAPPINESS, my THERAPIST and my BEST FRIEND



Last edited by HorseLover!!; 03-24-2014 at 08:00 AM.
03-23-2014, 11:37 PM   #17
Jennifer
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I'll join. But my primary illness is a unique genetic condition causing progressive neurological/rheumatological deterioration, with no clear diagnosis. I also have endocrine problems (undiagnosed but including ovarian failure). I have osteoporosis but I barely remember I have it as it causes me no symptoms.

I find it kind of hard to discuss my other illnesses on this forum. I'm so much sicker than the vast majority of forum members, it's difficult to see people saying they are suffering with being ill, when Crohn's is the least of my medical worries. It concerns me that I'll come across as unsympathetic, whilst at the same time it frustrates me greatly to see people so oblivious to being really sick (I mean dependent on carers, no chance to work or have kids, knowing it will only get worse even though I'm so young). People don't understand physical and emotional pain.

That's just something I had to unburden myself of; this thread seemed like a place to do that as perhaps there is someone else feeling the same.
I had been meaning to respond to this. I was diagnosed with Crohn's when I was 9 years old (I'm 31 now) and as I got older I was diagnosed with more and more illnesses and problems. Having more than one illness is extremely difficult. That doesn't mean that we don't care about those who are newly diagnosed with Crohn's or still seeking a diagnosis. We don't want anyone to have any illness or deal with any symptoms.

My hope is that with our combined knowledge of having IBD and other illnesses we can help others figure out what's going on with them so it can be caught early on and treated properly. Some IBD symptoms may not even be IBD related. Certain heart problems, diabetes etc can bring on gastrointestinal symptoms. So in a way dealing with so much allows us to help others from hopefully not suffering as much or at least not as bad.

When I was in the ER for a bowel obstruction, there was another women there complaining about diarrhea. The doctor asked her a lot of questions including how often, are you in pain, do you see blood or mucus etc. She said she goes about 3 times a day, no pain, just liquid stool. It just started happening and freaked her out so much that she didn't want to wait to see her regular doctor so she went to the ER for a mild case of diarrhea. Mild to me but apparently the worse thing in the world for her. Turns out according to the ER doctor it was a side effect from a medication she had just started taking and suggested a stool hardener to help with the symptom and go see her regular doctor. Having Crohn's for so long, it all seemed quite comical at the time. I thought, "you're lucky that's all you have. If you had Crohn's you'd pass out or something." Yet again, I cannot judge, that was clearly an awful thing for her to deal with yet I wouldn't give her as much sympathy as I would to someone who actually needed emergency medical attention.

I think it's ok and perfectly natural to have these feelings of being worse off than most. I get them too otherwise why would I want to be rid of all of these illnesses? I want them all gone, I just want to be normal. We all do. Saying all this though can come off as being unsympathetic towards others but that doesn't mean we don't care about them or that we have absolutely no sympathy. We're being open and honest by finally venting out what's been frustrating us for so long since we always get to hear, "it could always be worse." Well it is worse and it's only going to get worse. We can still do our best to live our lives the best we can. We got a shitty hand dealt but I'm a sore loser so I'm still going to do my best to win this hand.

Hopefully others will never experience what we've gone through and will go through in the future as we're all still pretty young. All we can do is help each other which is why I made this support group and so we can share our knowledge with those who are just starting out. Maybe we can help them avoid this fate, and in the meantime help each other through these feelings we get when we wish that we could just swap symptoms or diseases with someone else.

We're all in this together no matter what or how many illnesses and problems we have.
03-24-2014, 06:32 AM   #18
Axelfl3333
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I have some odds and sods going on besides the wonderful crohns I,ve got ongoing carpal tunnel and ulnar nerve compression 13 operations and counting,broke both ankles playing 5 a side,surgery on one so now I,ve got arthritis in my ankles and knees that my lot and hopefully won,t have any more.
03-24-2014, 04:10 PM   #19
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UnXmas... I'll start where you left off. I completely understand how you feel with all the betrayals of your body... more than you know. Which is why you might avoid dismissing Crohn's for others, though it is the least of your problems. Depends how bad your other stuff is, depends how bad the Crohn's is and most importantly, for how long. Also, so many other variabilities.

I have had Crohn's for 45 years with 10 surgeries. Close to death twice and actually disappointed when I woke up I was so miserable. I since have a DNR on record... do not resuscitate. And I mean it. Not depressed as much as realistic.

Suffering, by definition, is very subjective. I will never discount another's suffering nor list ALL my ailments to prove it.

We all need to be heard.

Take care... Michele Lea
03-24-2014, 07:30 PM   #20
rrhood1
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Wow - what a list!

Dx: I have Crohns, just diagnosed with thyroid cancer (waiting for surgery), spondylosis of C6 & 7 vertebrae (waiting for nerve blocks for pain & surgery), renal failure of right kidney caused by endometriosis. Also fibromyalgia and high blood pressure (at time). What a list!

I have multiple specialists - thank god they all seem to get along. My GP is my primary - she looks after me as a whole. I have a GI, Rheumatologist, Urologist, and now a Oncology surgeon. Lots of appointments ( because no one seems to share the ultrasounds, X-rays, MRI's, C-scans). In a three month period a year ago I had 4 Cat scans - I refused the 5th because it wasn't needed and made the dr pull the others. My poor pharmacist keeps a good eye for any possible drug interactions. I love all my doctors (most are female) and they are so accessible - love it!

I'm currently off work due to the cancer and the neck problems. Don't know when I can return. Am probably going to look for something other than what I used to do. My last job as a condominium manager was extremely stressful - I don't know if I want to go back to it.

Meds - way too many. Handfuls of pills morning and night. Pills / injections for Crohns, pills for pain, piles for high blood pressure, pills for tachycardia, pills for reflux caused by the other pills. Lots of Vitamins - B, C, D and calcium.

How do I tell what is acting up? No idea - sometimes it's a crap shoot. My GP has a secret diagnosis to rule out Crohns - she puts me on prednisone for 5 days. I'm lucky I respond to prednisone really quickly so if the symptoms disappear right away we know it's Crohns, if it doesn't then it's not Crohns. It's the best test my GP and I could come up with and it seems to work well. We don't do this very often - just when something is not making sense diagnosis wise.

I think that's all - or it's more than enough.
__________________
Alison

Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
03-24-2014, 09:23 PM   #21
SarahBear
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I'll join in.

The only condition I've formally been diagnosed with so far is Crohn's, but it's evident that there's more going on.

My chart reads, "endometriosis by symptoms," as at this point, the symptoms are being controlled decently with birth control and my GYN and I don't feel that surgery to confirm the diagnosis is necessary.

My rheumatologist suspects some form of arthritis and I also appear to have symptoms of fibromyalgia, but of course, I haven't yet managed to get in to see her while that is flaring. So for now that one is a big question mark, as the symptoms could certainly point in another direction as well. Fibromyalgia is my best guess primarily because my mother has it and it seems to have a genetic component.

My Crohn's is behaving, so I don't currently have any appointments with my GI. We're on a, "Call if you need us," sort of basis right now. The rheumatologist is about the same. I have a follow up coming up at some point in the future (I sure hope they call to remind me…) and she wants to me to call as soon as my possibly-fibro symptoms start to flare again so she can see me then.

The only medication I'm taking is birth control (for the endo symptoms). I can't do pills (I throw them back up for whatever reason) and my GI doesn't want to risk the complications associated with a stronger med that could be done via injection since my Crohn's has been in remission without medication for a while anyway. Nothing else has been diagnosed to be treated yet.

I am working, but sometimes it's a struggle. I work with people with similar health problems, so I get a decent level of understanding. My job is somewhat physically demanding though, and often emotionally draining. Sometimes it just completely wears me down.

As for knowing what condition is acting up… beats me. Everything has so many overlapping symptoms that it could even be one condition (although testing has determined that to be highly unlikely). I generally assume the possibly-fibro condition is to blame however, as either I have primarily non-stomach related symptoms, or the stomach symptoms I do get aren't typical of what Crohn's causes for me.

Ugh.
__________________


Sarah.
Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

03-25-2014, 01:21 PM   #22
carrollco
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Since I have so many autoimmune problems from Crohn's to Hashimoto's to Spondylitis, it is obvious to me that for some reason my body is attacking my body. I've ruled out self-hate, considered all the diet crap out there, and am left with the fact that my mom had Crohn's, my sister diverticulitis, my daughter UC leaving me with the rest. *sigh* I've learned to self - adjust my thyroid meds, lost the weight to get rid of diabetes, and Remicade has wiped Crohn's off the map for now. So I am feeling pretty good at the moment, oh yeah, SCD diet works on lessening symptoms but didn't cure me and I gave it a good shot. It will lessen symptoms and give Diabetes a run for the money. This is hard, but worth it. And I do sneak a cookie now and then.

03-25-2014, 01:50 PM   #23
yosemitegirl
 
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Join Date: Mar 2014
Location: Cameron Park, California

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Carollco... For whatever it's worth, I believe that these auto immune diseases have a genetic component. Then whatever is the trigger is the unanswered question. After 45 years with Crohn's and the subsequent multitude of other medical problems, I wonder if having a body that attacks itself is just messed up in ways they haven't yet identified. I don't know of many who just have Crohn's... that being awful enough.

I am glad that the Crohn's is behaving itself. Best wishes to you.

I also want to thank everyone on here for sharing their other ailments. Sometimes I even dismiss my other crap since the Crohn's rules. And everyone around me has a hard enough time with that alone.

This forum is for everyone to freely list all that they deal with, from minimal to the worst. It is synergistic, it all adds up to interfering with your life, your spontaneity.

This forum is NOT to compare who has it the worst and make judgments on others' supposed lack of understanding of real emotional and physical pain, or not knowing what it feels to be REALLY sick. Pretty sure each of us knows that stuff all too well. I have empathy for every one of you. It is a very tough hand to be dealt, and play it out to the best of your ability.

Thanks to you all, take care. Michele Lea

Last edited by yosemitegirl; 03-31-2014 at 10:04 PM.
03-27-2014, 10:44 PM   #24
afidz
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Join Date: Jun 2012
Location: Mckinney, Texas

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I am stuck between a rock and a hard place...
In 2008 I had emergency surgery on my abdomen that left me with a 12 inch incision. Since then I have had 13 other surgeries trying to either clear infections or correct hernias. I don't know if you would consider this an additional illness, but it is chronic. This is always something that I will have to worry about. Right now, my entire digestive tract is outside of my abdominal cavity, and since there is nothing in the cavity, it is shrinking making it difficult for the surgeons to be able to successfully repair. Because of the amount of surgeries I have had, I probably can't safely carry a pregnancy to term. There is a lot more behind it that I won't get into unless asked. Its a really big mess.
Other than that, I probably have AS or some other form of arthritis in my spine and or ribs, hips and knees. I am waiting to be able to see a rheumy, but it doesn't matter anyway because I can't be on any of the meds that will help me until my hernia is finally corrected and heals properly. My mental health is unstable but everything that I have been through, its expected. Everything else that is wrong isn't worth mentioning.
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
03-31-2014, 09:25 PM   #25
cdepaola
 
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Join Date: Mar 2012
Location: Naperville, Illinois

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I'll join. But my primary illness is a unique genetic condition causing progressive neurological/rheumatological deterioration, with no clear diagnosis. I also have endocrine problems (undiagnosed but including ovarian failure). I have osteoporosis but I barely remember I have it as it causes me no symptoms.

I find it kind of hard to discuss my other illnesses on this forum. I'm so much sicker than the vast majority of forum members, it's difficult to see people saying they are suffering with being ill, when Crohn's is the least of my medical worries. It concerns me that I'll come across as unsympathetic, whilst at the same time it frustrates me greatly to see people so oblivious to being really sick (I mean dependent on carers, no chance to work or have kids, knowing it will only get worse even though I'm so young). People don't understand physical and emotional pain.

That's just something I had to unburden myself of; this thread seemed like a place to do that as perhaps there is someone else feeling the same.

First, I know you didn't mean to have this come off the way that it did but it could be taken very negatively by some. How "sick" someone is or more importantly "how sick they feel" is relative and different for every single person. Yes some people are sicker then others but how someone physically or mentally feels can differ greatly.

Here is an example: I am by most Dr's opinions fairly sick.... I've had crohn's for 15 years with numerous fistulas and perforated bowls that have lead to three resections.

Thanks to my crohn's I also have secondary Amyloidosis which sent me into renal failure. Six years ago I received a kidney transplant which failed in the first 10 hours due to a surgical error and was cut wide open three times in 48 hours. First to put the new kidney in, second to repair a suture that caused blood to clot around the new kidney, and third to remove the kidney. Six months later I had a second transplant which was successful but for which I was in the hospital for over a month getting chemo and plasmapheresis to avoid rejection thanks to an antigen that was found late.

Six months ago I suffered a Pulmonary Embolism and over 10 clots in one of my legs, of which the cause is still unknown at this time.

I am a 43 year old firefighter/medic and I continue to work to this day and worked the day before my kidney transplant. I ran my first half marathon 6 months after my transplant. People who don't know my story would never say I was sick or think I looked sick in any way. I don't feel sick though I understand and have had both mental and physical pain involved in all of this. I don't consider myself sick and don't live my life like I'm sick. God only knows how long I'm on this earth and I'm going to take full advantage of it.

I agree that some people do not understand what being sick really is, I deal with them every day. However they still feel that they are sick and may very well be suffering physically and or mentally. While I may not agree with them, that they are so sick that they need to go to an "Emergency Room", it is not our place to judge.

With that said I'm glad to join this thread, its some place we can all go to vent or just talk about whats going on. Someplace we can remind ourselves that other people are sick too and its not just us. Someplace we can give and get understanding and sympathy. Things we all need from time to time.

Last edited by cdepaola; 03-31-2014 at 09:42 PM.
03-31-2014, 09:31 PM   #26
lisakuney
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Join Date: Sep 2011
Location: Jacksonville, North Carolina

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I'll chime in with multiple health issues besides Crohn's. Managing my health is a full time job. ME/CFS, Fibro, Hashimoto's, tachycardia, GERD, arthritis, various and sundry other inconveniences. I am worried I will end up in a wheelchair soon if something doesn't happen with new doctors and treatments for the ME/CFS.
03-31-2014, 09:34 PM   #27
Essieluv
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I'll chime in with multiple health issues besides Crohn's. Managing my health is a full time job. ME/CFS, Fibro, Hashimoto's, tachycardia, GERD, arthritis, various and sundry other inconveniences. I am worried I will end up in a wheelchair soon if something doesn't happen with new doctors and treatments for the ME/CFS.
Do you mind me asking what your ME/CFS symptoms are? I have some friend with this and have been considering talking to my doctor about it being a possibility for me as we have very similar symptoms....I hope you get some treatment and get on the road to recovery
03-31-2014, 10:14 PM   #28
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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I'll speak up. In addition to Crohn's I have PTSD from family abuse that means I have panic attacks when I try to look people in the eye and a crippling fear of unfamiliar men. I also have an "at risk mental state" ie I'm suspected to be developing schizophrenia or some other form of psychotic illness but it's too early for a psychiatrist to say for sure.

I was constantly paranoid I was being watched or filmed, that life was fake or some giant Illumanti plot was happening just under the seams. I heard a chorus whispering to me about them. I saw people running in the edge of my vision, when it happened it always came with a profound feeling of violated personal space, as if someone was standing right behind me. Sometimes I'd hear them whisper too. They were talking about me, plotting.

Thankfully instead of pills I was sent to a therapist here named Ron Unger who is an expert on treating psychosis with CBT and strongly advocates against medication in mental illness. That was about two years ago and I still haven't progressed to the point where they can say I'm mad or in the clear. I honestly think he saved my sanity. Nowdays the worst hallucination I see is rats scurrying at the edge of my vision (my apartment is less then five years old and I'm obsessively clean, so I know there's no actual rats).

Last edited by Orchid; 03-31-2014 at 10:30 PM.
03-31-2014, 10:31 PM   #29
yosemitegirl
 
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Join Date: Mar 2014
Location: Cameron Park, California

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Cdepaola... I happen to be one who felt the negativity from this post. Didn't mind the claim that she has it worst, though that would never be my approach. However, the statements that negated others' feelings... we don't know what real physical and emotional pain is, and worse, we don't know what it is like to be really sick. And it was hard for her to read such minor problems. Everyone should feel free to list it all, minor to major, without being discounted.

I received a private message suggesting that I was singling this person out, and to consider editing my comment. I certainly didn't say anything unkind, while this post seemed very unkind. At the least, not understanding at all.

Your story is very inspiring with great points made. Thanks for sharing.

Best wishes to you... Michele Lea

(Crohn's X 45 years, 10 surgeries and too much other crap to list.)
04-01-2014, 12:51 AM   #30
Catherina
 
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Join Date: May 2011
Location: Paleo Faliro, Greece

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Hi everybody,
I just now discovered this new group......
Yes, I am suffering from other 'stuff' as well besides Crohn's
I also have Spondyloarthritis and CIDP, both being officially diagnosed. Together with these three I also have some other 'inconveniences' like
remvokrano, infection of my facial nerves and a sudden onset of 70% astigmatism which the physicians cannot place (thank God nothing is to be found in my brain).
I am generally trying to ignore symptoms being weary of those pill describing doctors.
Having been anything but symptomfree for eight years now, living in a fog because of medication as well as making it my full time job to arrange appointments, finding medication and going in and out of the hospital I decided to quit all medication (yes, on myself) approx nine months ago.
The only thing I can say is that I have pain, sometimes pretty much everywhere but ................. at least I am me
__________________
CIDP: Immunoglobin IV every 1 to 2 months and Neurontin
Psoriatic Arthritis
partial ileo/colectomy, galbladder removed.
Medication: salofalk, vit. D, Folic Acid, Prednizolone, probiotics, Flagyl, Ciproxin, Azathiprine, L-Carnitine, Magnesium, Budesonide Methotrexate and Prednizolone (which covers all three autoimmunes
probiotics, vit. D, folic Acid (injections), Magnesium
I quit all medication (by myself) nine months ago and am searching into natural healing methods and meds.
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