Sufferers of Multiple Illnesses & IBD Support Group

Crohn's Disease Forum

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Hello,
I have depression, migraines, epilepsy, sciatica, spinal arthritis and newly diagnosed with recurrent ischemic colitis with ulcers. Trying to get a good plan of treatment.
I'm a normal size 2 wearing size 12 pants. I am in pain (not like when I went into the hospital but it's still there) and am hoping to come in contact with others who have this and can help me deal with it. I'm a 43 year old female and most information says that it's a disease mostly in 60 plus year olds...
 
Scifimom said:
My doc says is normal and I have to learn to live with that.
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My wife was once told by a neurologist that 2-3 migraines a week was "just normal for some people." Not much later she found a new neurologist.

That many BM's is not normal and you should not have to just "live with that". I am in remission and I have 1 to 2 BM's, which are normal looking, per day.

Scifimom, is there another GI doctor you could see for another opinion?
 
Pray777 said:
Hello,
I have depression, migraines, epilepsy, sciatica, spinal arthritis and newly diagnosed with recurrent ischemic colitis with ulcers. Trying to get a good plan of treatment.
I'm a normal size 2 wearing size 12 pants. I am in pain (not like when I went into the hospital but it's still there) and am hoping to come in contact with others who have this and can help me deal with it. I'm a 43 year old female and most information says that it's a disease mostly in 60 plus year olds...
Click to expand...

I love your avatar!!!

I'm praying you get the answers and treatment you need for all those ailments!:ghug:
 
DougUte said:
My wife was once told by a neurologist that 2-3 migraines a week was "just normal for some people." Not much later she found a new neurologist.

That many BM's is not normal and you should not have to just "live with that". I am in remission and I have 1 to 2 BM's, which are normal looking, per day.

Scifimom, is there another GI doctor you could see for another opinion?
Click to expand...

As a matter of fact no... I live in Greece in the vice capital which is Thessaloniki, we only have one IBD specialized public hospital (For the whole northern Greece) and my GI is the head of the department I was REALLY lucky to get accepted, they only take a couple new cases per year and only very severe cases (Which mine is, my dx is "severe both inflammatory and ulcerative crohns disease"). Going private is not an option as in Greece Humira can be prescribed by hospital doctors (We have universal healthcare). This is an advantage since I don't need private insurance and all my tests and medication are totally free, some problems though exist, one of them is that when I have the "best" GI in town I cannot change to someone else.
 
I just saw this and realised just how much other people are going through. I have had Crohns for 30 years with 1 major resection and 1 repair and a bunch of other stuff including peripheral neuropathy, hiatus hernia, gluten and lactose intolerance (in recent years) anal fissures and fistula, but have been very lucky really. I have been able to have a successful career (now retired) have been able to support my husband who has MS and had to retire at 35 due to walking issues, I have supported 2 kids through university (1 also has MS) and weddings, and now help my daughter with her 3 autistic children. Are all these illnesses related - probably, but there is no definitive answer yet. I get frustrated when something else is added, but know that this body is what I have so I need to get on with it! I feel for those of you who have such pain and anxiety, my thoughts are with you all. I am glad for the opportunity this forum brings to allow us to vent, share and learn from others, thanks.
 
Hello everyone reading this.. I too suffer from a few different medical issues, including Crohn's. My biggest challenge is actually the mental illness I've developed as a result of having chronic illnesses. Does anyone else have emotional issues as a result of their illnesses? I'd really love to start a thread in my new support group "IBD and Mental Health Support Group".

I look forward to hearing from some people.
 
Yes barbie_ferrari members often mention dealing with depression and anxiety after their diagnosis of IBD.
 
Dear Valley: Okay, I am new here and I just read an old post you had written. You have really opened my eyes !

I am going through a myriad of doctors right now too. I am seeing a Urologist for a cyst on my right kidney ( I had a cyst taken off of my left kidney in 2007. I recently had an ultrasound and CT scan of my kidneys. My doctor and I will be monitoring the cyst. I told him I DO NOT want another kidney surgery unless I really, really have to have it. I don't believe I should have had the FIRST kidney surgery, but the doctors made it sound like it was life or death and I must have the surgery. The cyst was only 1.5cm and when they took it out it was benign. I will see my new Urologist every 6 months.

I have been seeing an Endocrinologist for a few years now, but never was put on medication. I had had regular visits, blood tests and ultrasounds of my thyroid. I have three nodules on my thyroid and the ultrasound showed that nodule was growing. I had a needle biopsy of the nodule and cells were taken. The cells were negative for cancer. I was just currently put on thyroid medication for the first time.

My Endocrinologist will now be in charge of my Osteoporosis. My Gynecologist used to be in charge of monitoring that, but he isn't on my new insurance plan. I have regular DEXA scans. I take Fosamax and vitamin D3. I will see my Endocrinologist every 6-8 weeks to monitor my new medication and to have a blood test.

I just saw my Rheumatologist the other day. I had seen him in 2012, but I did not have health insurance then, so I could not follow what he recommended me to do. I originally saw him in 2007 and had Physical Therapy for the arthritis in my neck. My neck pain and arthritis has recently gotten way worse, so I went to see him. Basically I am just going to go to PT twice a week for six weeks. I didn't get any pain medication. I can barely move my neck at all. I will follow up with him in a month or two.

I am seeing an Orthopedic doctor about my shoulder/shoulders tomorrow. I have joint disease in my left shoulder ( since 2010 ) and it has been quite painful since June 2014. My other shoulder is bothering me too, plus I have limited mobility in both. I am not sure what he is going to say, but the left shoulder is my biggest pain issue and I want pain medication for the left shoulder. I cannot stand the pain in that shoulder any longer. This is a new Orthopedic doctor from the one I saw in 2010.

Starting in June 2014 I have been having issues with my Ulcerative Colitis, Hip Arthritis, Left Shoulder Joint Disease and Neck Arthritis. Surely all of these things are connected but I will be seeing a different doctor for each disease/illness. When I go to each Specialist I try to explain all of the other things that I have had wrong with me since June and that I believe they are all related ( inflammatory ). I don't know which doctor is going to give me some medication for pain, but someone better do it.

I am seeing a new Gastroenterologist. I made sure my old medical records from my last doctor were faxed over to his office so that he would know my colon history. I doubt he even read those records. I saw my last doctor for 8 years ( he was not on my new health insurance plan ). I hope the new doctor can figure out my sudden constipation problem, again since May 2014 ). He is a new doctor to me and I am very nervous about the colonoscopy next week, as the colonoscopy is done in his doctor building and not in a SurgiCenter. I was very concerned about the kind of drug I would be given to knock me out during the surgery and how the "in house" colonoscopy procedure works, so I was given the phone number to the actual Anesthesiologist and I called him ! He was very nice and explained the process and what the drug was that he was going to give me. He assured me that I would be totally knocked out and not just in a light or twilight sleep.

Sorry this is so long.
 
Barbie: I think your idea is a great one ! I suffer from many illnesses ( see long list in my last post ) and I suffer from Major Depressive Disorder and Anxiety. I don't think my depression is directly linked to all of my illnesses, but I think the illnesses make the depression way worse.

Lynda
Anal Fistulectomy 1992
Gallbladder removed 1995
Diarrhea started in 1997
Misdiagnosed in the late 1990's
Started on Questran Powder in late 1990's or early 2000's
Rectal Abscess surgery in 2002
Properly diagnosed in 2006 with Ulcerative Colitis
First I was on Asacol
Now I am on Lialda and the Questran Powder
Rectal Abscess surgery in 2009
Recently started having constipation and seeing a new Gastroenterologist
I am 54 years old
I am new to this website and I finding out so much new information about my disease
Also taking D3 vitamin and B12 vitamin
 
I actually got some good news for a change,,I don't need surgery on my knees!! Yay. Being referred to rheumatology at last,, there is a strong chance I have sero-negative arthritis, for years I've being saying I thought my joint pains (hands,, hips,, SI joint, knees and now feet) were related so to finally have someone agree feels amazing.


My other good news is that I have diabetic retinopathy and have had laser to try and halt the leakage. A cyst had formed that I was told would sadly be permanent but amazingly at my last appointment it has gone, my Dr was even surprised.

Ann Morgan....I also have shoulder problems and an on a waiting list to have my right shoulder operated on,,I have impingement syndrome which means extra bone has developed in the joint which cuts into the tendon. I had the same surgery 3 years ago on my left shoulder and it was a great success.
 
Nice to find this.

Im diagnosed with migraine headaches (of some indeterminate cause), hypoglycemia (sometimes called hyperinsulinism), the Crohn's of course, and Moderately severe asthma.. oh and the random unexplained pyloric stenosis

Taking Asacol HD, Prednisone, Hyoscamine, Nexium, (about to start Entocort soon as insurance figures their crap out), Symbicort, and Ventolin.
 
lizbeth: I went to an Orthopedic shoulder doctor the other day. My left shoulder was hurting like hell. He gave me an injection in each shoulder. This helped me tremendously. He is going to send me to Physical Therapy for my shoulders. I have had PT before and had "ok" results. I really would like something for the pain, but the doctor and I both agreed that narcotics are not a long term solution to my shoulder problems. This doctor was new to me but he was very nice and I liked him. If I don't feel comfortable with a doctor then I don't have much confidence in any treatment I may get from him/her.
I just get pissed off a lot of the time because I have limited mobility, I get embarrassed at the grocery store because every time I go there I have to ask for assistance from the employees or from other customers to reach items that are above my reach. Why do most of the items I want to buy HAVE to be on the top shelf:lol:
 
I have had two PT sessions on my neck. Well, I don't know if I can say this here, but my PT guy is a nice looking, young guy who gives me neck massages while I am there. That alone makes me feel better ( LOL ). I have started to think that I may want to find a reputable massage therapist and get some regular massages to make me feel better. I will ask my PT guy if he can recommend anyone. I used to get massages occasionally and they felt great ( my muscles are so tight ). I will start PT on my shoulders next month, completely different from the sessions I am getting on my neck at this time. The cost is not cheap, but I need the help. Part of me really wanted some pain pills for my arthritis and joint disease, but after chatting with my Orthopedic Doctor we decided not to go that route. I have been on hydrocodone before and I really liked it. Of course it is a narcotic and it is addictive. I used to call them my "happy pills".
 
aideen: I had migraine headaches back in 2006 and 2007. I was in the ER one time for a really terrible migraine headache. The waiting room was packed. It took me 6 hours to be seen by a doctor. I sat in a wheelchair in the large waiting room lobby for 6 hours in terrible pain. Once I did get to see an ER doctor they did a CT Scan ( I think ) and then they gave me a cocktail of medications in a shot or an IV ( I cannot exactly remember ). Once I got the cocktail of medications I felt great. I no longer get the migraines. I believe they were caused by anxiety and psychological issues. In 2006 I was suffering from depression and anxiety and I did not even know it. By 2007 I ended up in the psyche ward, but it was the best place for me at the time. I did not have any more migraines after being diagnosed and receiving psychiatric medications. I DID go back to work after a five month short term disability, but two years later I got let go due to "workforce reduction" . Do doctors even KNOW what causes migraines ? I used to have terrible pain in my left temple area. I heard on TV that they use Botox for migraines ?
 
Hi Ann,
I am on a new opiate pill called targin . It is a combination of oxycodone and naloxone which is an opiate antagonist. My nephrologist told me that it is nigh on impossible to get high on targin because of the naloxone. I am on 20mg/10mg twice a day. I am due for a rise probably to 25 in the next week of so. I suspect that the naloxone ,intended to prevent opiate induced constipation , is actually acting like low dose naltrexone which is almost exactly the same drug. The oxy handles the spondylitis and psoriatic arthritis pain and the naloxone has completely removed the burn from my neuropathy. Unfortunately is has absolutely no control over the constipation and acting on the docs orders I take 2 dulcolax tabs each time I take Targin, My nephrologist ,gp and rheumy all think it is a wonder drug, Cheers Ron.
 
Ron I'm also on the same drug which does help with my pain but doesn't get rid of it, though I'm very thankful for the relief it gives.
 
What dose are you on Liz?
My gp is aiming to get me thru the twelve hours without breakthrough pain. It worked for a short time but he is pretty sure I will need to double my current dose of 20/10 twice a day before I achieve that goal. Before I went on this drug I was terrified of opiate pain killers . I can honestly say that apart from pain relief I have not noticed any strange or nasty side effects( Well not after I got the constipation sorted).. Ron.
 
Hi everyone and please excuse the length of this post,

I'm about to be sent on another round of 'let's figure out what this is' and running another gamut of doctors, tests, and more tests, and because of past experiences, I am both skeptical and just really really frustrated and tired of both the experiences and of the amount of money this is going to cost me (again).

The reason I am posting here is because in addition to what has become a chronic series of GI issues which is making my doctor want to screen for possible IBD issues as opposed to just IBS (or my blood disorder acting up badly), I also manage a lifelong genetic blood disorder which has its own set of symptoms, problems, and also exam and labs-related abnormalities.

That said, I was wondering if anyone who has another pre-existing condition besides IBD which can possibly alter the results of blood tests and/or other lab exams that are used to help diagnose or interpret GI-related symptoms can share their experience with doctor(s) interpreting lab results and the like and 'fighting' over how to interpret the results.

What I mean is: How do the doctors (or you) know that the results are from Problem 1 as opposed to Problem 2 and what is their approach to differentiating?

The blood disorder I mentioned previously shows up in certain blood tests and general exams and labs. Unfortunately, some of the values that this condition can alter are also values used in determining GI-related health. Some symtoms can overlap, too.

I've struggled with severe GI issues for 7 years now and though I have had some 'unusual' test results that were considered 'more unusual than what my normal would be', my doctors have almost always attributed the results to a flare-up of my blood disorder as opposed to anything GI-related. Mostly because they KNOW I absolutely HAVE the blood disorder as opposed to 'We don't know what kind of a GI issue this is, so it's more likely the former as opposed to the latter and you're also getting older so maybe the pre-existing condition is getting worse.'

The whole bit about me getting older and my blood condition getting worse resulted in me seeing a very special blood specialist who specialized in my particular disorder... only to have them disagree with my doctors. My condition was/is likely more stable than what the exams/labs/whatevers were showing so it's probably something else!

According to the blood specialist, GI pains (and pain in general) COULD be a problem with my condition worsening with age, BUT it would be more of generalized pain and not the episodic weeklong-ish bouts of D, extreme pain, 'feeling blocked', extreme bloating at times, mouth ulcers, occasional C, and extreme fatigue. In his opinion, the unusual blood test results possibly warranted another look from another angle.

This was communicated to my other doctors... who pretty much all disagreed at the time because previous x-rays, CT, ultrasound, and upper endoscopy (but no colonoscopy) done in years past ended up being fairly unremarkable... and so it's been like a game of ping pong and at some point, I just quit getting labs done, seeing the doctors, and just shut up and dealt with the GI issues as well as I could with the blood issue already being more than a handful to deal with.

After all these years, though, with my GI issues only getting worse and worse and my lab values in some departments getting more and more skewed, my primary doctor is actually rethinking the interpretations of my past lab tests and is wanting me to undergo another series of exams and such to look for other non-blood issues.

This means more specialists, more exams, more labs, more diagnostics... and more money.

Thing is, I STILL might/probably will! get values that could be interpreted as 'blood disorder flare' as opposed to 'anything else disorder' and so I'm skeptical. What good will exams do if anything that comes of it is going to be read as, "Your pre-existing condition is getting worse and it's making your GI issues worse so go see a blood specialist (who's going to turn around and point back in the other direction)?"

Can anyone relate to this? How was it/did you dealt/deal with/with it?

:(
 
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Hi Ice, I'm not sure how comparable my situation is - I have another, extremely rare medical condition which is classed as rheumatological, which affects every part of my body including my digestive tract, where it causes major motility problems. It has proven extremely difficult to work out which symptoms are caused by which condition. Lab tests haven't been quite so confusing, however.

I think it's worth remembering though, that even when someone's known to have only one disease, deciding whether or not to undergo extensive testing can be more difficult that it first seems. Questions still come up surrounding, how useful with the information be? Is it going to affect the course of treatment? I don't think there's an easy answer.

But I guess one key question you could ask yourself is whether you would feel more at peace if you knew IBD had been thoroughly ruled out? If it turns out the reason things are getting worse is to be put down to your blood disorder, would you feel better knowing that information? Would it give your blood specialist a clearer idea of what's going on and convince him to work harder to come up with ways of treating it? I guess the main test you'd be looking at next would be a colonoscopy?

Also, is your blood condition very rare? Are there online communities for it where you could sound out your GI symptoms to other sufferers and see how out of the ordinary your current symptoms are?

I would also ask whether you have a intuitive sense about this at all, though I know for myself my intuition hasn't always been that great, but there have been times when I've simply known something about my illness - one specific example being when some doctors were questioning whether new symptoms were to be considered the result of my existing condition or something new. I just knew for certain that they were from my existing condition. People do get multiple illnesses, new complications do crop up, but there also comes a point where you can recognise it would be very unlikely that yet another new thing has come along when you already have an illness that could potentially be responsible for it. If your existing condition is known to cause GI problems, it may not make sense to start looking for another cause when you've got one possible cause right there already. That was my experience anyway.

Sorry, I've reread my post and realised I'm probably just confusing you even more! And as I said, my experience has been mostly about trying to decipher what is causing which symptoms rather than what is causing test abnormalities.

One final thought: how good are your doctors at communicating? Can you get copies, not just of your test results, but written statements of each doctor's interpretation of the results, and why they think you do/do not have additional GI issues, so that you can show them to the others?

And just to add - one of my doctors gives me his honest opinion when he thinks my other doctors are wrong - he's very unprofessional in that way. ;) Sometimes "fighting" can help to bring out more potentially good ideas. And I guess you at least know that more options are being considered than would be if you just had one doctor set on one particular view. I also find I tend to know which doctor's "side" I'm on - does one of your doctors come across to you as the one who's most knowledgeable about your condition, or who has helped you most in the past?
 
Can I join this group, even if most of my diseases are Extra-intestinal manifestations of Crohns?

I have:
Crohns
Episcleritis
Psoriasis
Hidradenitis
Bursa or Arthritis (not diagnosed yet)
Adenomyosis


I have been prescribed long term antibiotics for the Hidradenitis but they killed my gut. I'm currently taking a break from them until my next Derm appointment in 3 weeks. they will try another kind. I have an appointment with my GI two days afterwards so I will discuss it with her.
 
I have a very practical nephrologist. He has done three kidney biopsies on me . They are very unpleasant. He has no worthwhile results from them. They show I have a problem but it does not relate to any known kidney disease. He has stated clearly that there will be no more biopsies. I have therefore been diagnosed with an auto immune kidney disease of unknown type and cause. He treats the symptoms as they arise. So I guess in the end I will die of Ï don't know" I can handle that. Ron.
 
ron50 said:
What dose are you on Liz?
My gp is aiming to get me thru the twelve hours without breakthrough pain. It worked for a short time but he is pretty sure I will need to double my current dose of 20/10 twice a day before I achieve that goal. Before I went on this drug I was terrified of opiate pain killers . I can honestly say that apart from pain relief I have not noticed any strange or nasty side effects( Well not after I got the constipation sorted).. Ron.
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Ron I'm on targinact 20/10 but also take oxycodone 10 twice a day at the same time and have oxynorm for breakthrough pain. I was on 40/20 but thought it made me worse, turned out I had a virus so I'm going to go back to the 40/20 dose. My Dr is also trying to reduce my pain as much as possible.
 
I have a few little problems that just sort of popped up. My GI doctor doesn't believe a word I tell him about the stuff outside of his specialty unless I make lab results and doctor's notes appear in front of his face, because "people don't have so many issues going on - there has to be a unifying diagnosis".

Diagnoses to Date
-Crohn's Disease: diagnosed, undiagnosed, then rediagnosed all within a year, currently on no medications for Crohn's because my old GI doc left me high and dry while I was in the process of relocating, and apparently I'm in the middle of a flare. Thanks, dude. Way to look out for your favorite customer. The ER doc told me to stick to liquids until I get in to see my new primary doctor on Thursday, then we'll discuss what needs to be done until I can be seen at the GI clinic. Stricture + inflammation = partial obstruction.

-Chronic Kidney Disease Stage 4: idiopathic, not otherwise specified, suspected to be auto-immune. I was stage 3 after diagnosis for 6 months, and have already progressed to stage 4. Progression was expected to be slow, staying at my previous level of function for YEARS, not months. More intensive testing needs to be done with my new nephrologist as soon as possible. CKD will make finding appropriate medication for Crohn's a whole lot more complicated.

-Hypoglycemia: Happens when I don't eat for more than a couple of hours, but is more severe after eating 'crohn's safe' meals. The endo blames this on malabsorption causing hyperinsulinemia aka he blames Crohn's.

-Bradycardia & Hypotension: No structural heart disease, slightly leaky valves, idiopathic (just like everything else). Given a trial of florinef, but didn't react favorably. I find eating frequently helps, so it's possible that it's tied in with my endocrine problems, which could be a side effect of Crohn's. :eek2:

-Adjustment Disorder with Depressed Mood & Anxiety; Chronic: That's just a fancy term for 'I move a lot and I have a difficult time adjusting'. It's normal for everyone, so I think the actual dx is silly, but hey, they have to put something down on that piece of paper when you go to see a counselor. Took a low dose of cymbalta to keep myself from murdering my in-laws during the move in July. It worked great!

And last, but not least, I was diagnosed as married in 2006. He is my favorite disease, yet is sometimes the biggest pain in my ass :lol:

I hate to say misery loves company because it's so cliché, but it's true. It's nice to not feel like a freak of nature. Sad that we all are going through what we are, but grateful to be in contact with so many amazing people who keep on trucking, in spite of their many challenges. :ghug:
 
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UnXmas said:
Hi Ice, I'm not sure how comparable my situation is - I have another, extremely rare medical condition which is classed as rheumatological, which affects every part of my body including my digestive tract, where it causes major motility problems. It has proven extremely difficult to work out which symptoms are caused by which condition. Lab tests haven't been quite so confusing, however...
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Hi UnXmas :)

Just wanted to say that I ended up addressing this post and another one you wrote for me in my thread because I felt the conversation was perhaps getting better geared for there.

http://www.crohnsforum.com/showpost.php?p=810207&postcount=13
 
Thanks Liz,
I went from 20/10 to thirty fifteen today. He also gave me some standard oxy tablets to use when I get breakthrough pain. I am to take notes on how much straight oxy I take and when and what for so that he can try and formulate a medication plan for me. He does not want me to get to the point where the naloxone component dose is getting too high. He would rather it not go over the fifteen I am now on and to bolster it with a timed release straight oxy pill to get me thru the twelve hours. I take it at 6.15 in the morning and 18.15 in the afternoon. I am a bit concerned that the naloxone is not keeping the constipation in check. In the last month or so on two occasions the motility of my colon has completely shut down and has made me extremely unwell. I have a lot of adhesions from the colon cancer surgery and I really have trouble starting things moving. I am now taking two biscodyl with the targin dose as well as a couple of sachets of movicol each evening. I have gone right off food as I get scared to eat a normal meal in case of blockages. I have lost close to 22 lbs since I started targin. I take my blood sugars every morning and I have not gone above 5.8 in the past fortnight . Mostly sitting around 5.5. Targin has really helped me with the pain from the spondylitis and to a lesser degree the psoriatic arthritis. The relief from the neuropathy is at least letting me get some sleep. I really don't want to go back to the pain again as I know it will come back with a massive flare. I hope We can both find a management plan that will let us get some well earned relief....Hugs ron.
 
RON: Are kidney issues part of these diseases we are talking about here ? I was just wondering because I have Ulcerative Colitis and in 2007 I had a Partial Nephrectomy on my left kidney ( a little 1.5cm thing). It was removed during major surgery at the hospital and was found to be benign. I have recently found out ( during a routine ultra sound and then later followed by a CT Scan) that I have a 1cm "thing" on my RIGHT kidney now. My Urologist and I are keeping an eye on it with regular CT Scans right now. I told him about my previous surgery on my left kidney and how the doctors made it sound like it was SO urgent to get the "cyst" removed. I told him I don't want kidney surgery THIS time unless it is very, very necessary. I will have another CT Scan on my kidneys in October/November 2014.
 
Unfortunately Ann that is a yes. I have had three biopsies that tell my neph nothing . I went thru a rough patch with kidney stones some years back. They were only little uric acid stones but they are SHARP and they take the smile off my face when passing. And the blood in my urine usually leads to a myriad of tests for bladder cancer etc. etc. My main kidney problem is protein loss thru my urine. In jan I was losing over 7 grams a day. 150 mg a day is the high end of normal. Because of the protein loss there is nothing to keep the blood in my veins and I suffer badly from peripheral and pulmonary Oedema. I have lung problems ,they are not sure if it is asthma which I have been diagnosed with or bamboo spine from ankylosing spondylitis which I also have. We are pretty sure my auto immune problems are hereditary combined with medication side effects (mainly chemo for colon cancer). Whatever it is I only have 70% lung capacity and I suffer panic attacks when I wake at night unable to breathe. They have done a lot of ultrasounds on my kidneys and they never seem to worry about the small cysts. My neph said that most people have them and it is only when they grow that he worries. I can understand your reluctance to have surgery. After my first biopsy I vowed and declared I would never turn my back on another kidney specialist as long as I live. Stay well mate . all the best Ron.
 
Ron: Thanks for your reply. I am so sorry that you have had to endure so much pain and suffering.

I think my sister has auto immune problems. She has RA and I think she takes methotrexate for it. She also has Sjogren's Syndrome. She has dry mouth. I think she now has scoliosis. And she has some form of lupus. I know there are more things that she has not told me or that I don't know about.

She is one of those people that does not talk about what is wrong with them. I am just the opposite, I whine and complain about every ache and pain and discomfort that I have.

But there is a guy that works at a grocery store here that I frequent and he is very handicapped and he works at the store doing many different things. He is not old, but he has a cane. His legs are all messed up and it looks like one of his legs is really bent in the wrong direction at his knee area. So when I start feeling sorry for myself, then I think of him because he is a great guy and he is working at a job regardless of his disabilities. He is always happy.

Stay strong and don't give up.
 
We do get by Ann . And it is sites like this that give us that leg up when we need it. Pain and suffering is relative , the person who has just one auto-immune problem is suffering just as badly as one who has twenty. And we are in the position to be kind and supportive to both. Support groups are quite incredible, we are the ultimate placebo. Without doing a single physical thing we can raise someones spirits and give them the incentive to just keep on going. Why because there are several other people out there in cyberland who are doing it just as tough as us and just knowing that helps. I don't believe you whine and complain you probably just tell it as it is. the difference is that here you are telling it to someone who understands. All the best ,Hugs Ron.
 
ron50 said:
We do get by Ann . And it is sites like this that give us that leg up when we need it. Pain and suffering is relative , the person who has just one auto-immune problem is suffering just as badly as one who has twenty. And we are in the position to be kind and supportive to both. Support groups are quite incredible, we are the ultimate placebo. Without doing a single physical thing we can raise someones spirits and give them the incentive to just keep on going. Why because there are several other people out there in cyberland who are doing it just as tough as us and just knowing that helps. I don't believe you whine and complain you probably just tell it as it is. the difference is that here you are telling it to someone who understands. All the best ,Hugs Ron.
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I couldn't agree more, I would be lost without the support and kindness here.

The naxalone component of targinact isn't enough for me either and I use lactulose everyday too, if I don't I get terrible pain from firmer stools. I'm having a bit more luck in controlling my blood sugars thankfully but it's hard work. I don't have a good appetite cos the thought of food makes me want to barf and after making a meal I just can't stand the smell. Though for some reason I've put on over a stone in the last few weeks, going to see the Dr about it this week.

Keralin I was diagnosed with same matrimonial condition as you 25 years ago and couldn't agree more, while it can be a right royal pain is one condition I'm happy to have :) lol.
 
Hi All, I've been using this forum for a while, but really glad I found this support group. I am a sufferer of:
Crohns Disease
Psoriasis - Plaque and palmoplantar pustulosis
Psoriatic arthritis - hands, feet and knees
Acid reflux

I'm still working full time, but juggling appointments with all specialists including gynecology every 6 months for colposcopy's due to HPV virus in a few cells and up till 8 weeks ago, was going for Infliximab treatment every 8 weeks.

My question for everyone is, when discussing treatment for your different conditions, do your consultants liase properly with each other? Do you feel like you have a say in what treatment you would like to consider?
 
My gp and nephrologist work togeather all the time, my rheumatologist does not care , He once did an mri on me that showed grade two ankylosing spondylitis. Not my field he said see a back specialist my neurologist was ,is no better. Ron.PS every AS group I have been on have said that AS needs to be treated by a rheumatologist just not mine!
 
Amanda89 said:
My question for everyone is, when discussing treatment for your different conditions, do your consultants liase properly with each other? Do you feel like you have a say in what treatment you would like to consider?
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I've recently acquired a gastroenterologist who I really don't like, and am trying to get rid of, and my surgeon was so mad that she didn't consult with him, when he's known me so long. He has done all my planned surgeries, but recently I needed an emergency surgery, and so had a different surgeon. My regular surgeon, when he heard I was in the hospital, came to see me on the ward and after hearing the details of my surgery, left a message for the emergency surgeon, giving her all the details of my medical history that he thought could be helpful. He also has a friend who is a urologist, and they do joint consultations together. He's so good at communicating! My GP also acts as a coordinator.

My surgeon has always given me a say in treatment for my elective surgeries - he wouldn't have given me a stoma, etc. if I'd said I didn't want one. My emergency surgery, well I didn't get much choice. First the surgeon asked me if I wanted surgery or not - my bowel was blocked and had perforated, but because I have another medical condition that made the surgery very risky, she was worrying about whether it was better to operate or to try and treat the perforation with antibiotics. My other medical condition is very rare and had been dealt with only by specialists in London. I was pretty incoherent at the time, and it was the middle of the night, so there was no way of contacting London, and she had never met me before. She actually ended up speaking to my parents to get details from them. She told me that once she'd operated, I would be in for a long and difficult recovery, and I needed to know what I was going to be in for. I was just starting to feel like I couldn't face going through another surgery, and saying to her I'd rather treat it with antibiotics, when something changed her mind and she rushed me into theatre. Which actually turned out to be the right call.

So I've had both sides - some communicate, some refuse to. My gastroenterologist seems to just want to go her own way all the time, and ignore everyone else, including me!
 
Just add fibromyalgia and a cyst in my armpit that needs removed to my list, guess it's safe to say I'm not too happy :(.
 
Okay, I have been on doctor overload for most of this year......and I still have one more

doctor to see but I will have to wait until next year. I have not seen my Gynecologist this

year yet. After many, many years of good office visits with my Gynecologist, in

2013 he found something wrong and I had to have a procedure called a

Hysteroscopy. I am 54 years old and that was the only visit where he found

something wrong with me ( go figure .... I have so many other things

wrong with me, so why not add one more ? ). So, I really need to follow up

on that. I will need my mammogram too. Unfortunately, because I have new health

insurance, I cannot return to the Gynecologist that I was seeing ( and he was a guy I

really trusted ). Finding a new doctor that is professional and knowledgeable is

sometimes difficult. Because of my new health insurance plan this year I had to give

up a great Gastroenterologist and a great Gynecologist this year. I went to a new

Gastroenterologist this year and I am not sure if I am going to keep him or not. I have a

follow up visit with him in November, I will see how that visit goes before I make

my decision. I started collecting Disability benefits in January of 2013.

I do not work any longer.

I cannot imagine having to go to all of my many,

many doctors for my many, many health issues and then still have to go to work 40

hours a week. I am sure that most of you guys work full time ? How do you do it !

I am going to my Primary Care Physician this Monday to talk to him about my fatigue !

I want him to do a blood draw to check my iron, thyroid, B12 and Glucose. I know that

I have multiple health issues, but I am getting more tired by the minute. There must

be an answer to this fatigue question. Thanks for listening. Hope you all have a

great weekend. :)
 
I am having another sleep study on Monday night. I had one several years ago the results were that I don't stop breathing , I just stop absorbing oxygen, No suggestions were made at that stage for further investigation. Now I wake in panic at night. I can breathe ok I just don't get any results for my effort. It will be interesting to hear what they say. I was dxed with my third arthritis type this week . I have grade two ankylosing spondylitis , psoriatic arthritis and now osteo arthritis. I am developing nodules on the joints of my hands rather quickly. I am pretty tired of it all. I wold not mind if the world stopped and I could get off for a little while... Ron.
 
Ron if you find a way of stopping the ride for a bit would you let me know? I would love a break from this all. I've recently had acupuncture which to my amazement helped ease my symptoms but the effects have worn off and I found myself thinking that I didn't want that to happen again, I didn't want the pain to ease bc when it came back it was harder to deal with, for a little while I felt good but now that it's back again I'm so sad that I can't function again, it's hard to explain but I'd nearly rather just be sore than to get better for a while and then lose it again.
 
I know exactly what you mean Liz. I was lucky enough to have Friday off so I put the boast in and went fishing. It was a very hot day and by one thirty I was totally had it. It is Sunday afternoon now and I am still wondering if it was worth it. To add to my problems I was watching tv on Friday night and the tv remote fell on the floor. I stretched over the arm of the chair to get it and something popped in my left rib cage. I don't know if it was rib cartilage or weather my rib has been weakened by steroid caused osteoperosis and it has cracked but for a while I was in really serious pain . It is still not good. I don't want to see the doctor , I see him enough. My pain killers are not doing the job very well at the moment. I think we are upping the dose next appointment. I must admit I am struggling at the moment . At work last week on at least two days I had a series of funny turns where I start sweating profusely and feel really off. Monday I think it happened about ten times. I keep wondering if and when I am going to have a really serious medical incident. Our bodies just cannot take all of this stress without something happening. Hugs ron.
 
When is your next appointment Ron cos it sounds like you should get the sweating and weird feeling checked putt sooner rather than later? I know what you mean about not wanting to go but it could be important given what else is going on in your body. Whatever you decide take care of yourself cos there's only one of you. Big hug right back at ya :). X
 
ron50 said:
I am having another sleep study on Monday night. I had one several years ago the results were that I don't stop breathing , I just stop absorbing oxygen, No suggestions were made at that stage for further investigation. Now I wake in panic at night. I can breathe ok I just don't get any results for my effort. It will be interesting to hear what they say. I was dxed with my third arthritis type this week . I have grade two ankylosing spondylitis , psoriatic arthritis and now osteo arthritis. I am developing nodules on the joints of my hands rather quickly. I am pretty tired of it all. I wold not mind if the world stopped and I could get off for a little while... Ron.
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Hi. I have had two doctors recently suggest that I do a sleep study. I am going to check with my Primary Care Doctor and my Health Insurance Company next year. I am going to too many other doctors this year already. I have had problems with my sleep for several years. During the past month it has gotten worse. I wake up in the early morning hours with what appears to be hip pain ( I have hip arthritis ). And NOW my back is starting to hurt ! The other day I was so tire that I had to sleep for three hours during the middle of the day. This happened a few weeks ago too. I have been tired for years, but starting in May the tired turned into exhaustion, and now the exhaustion has turned into full blown fatigue. It affects every part of my life. Keep in touch and tell me how the study went. PS: I am having doctor overload this year ! I wanted to take a "doctor break" at the beginning of next year but I am not sure this is going to be possible. Thanks for listening. :sign0085:
 
Hugs Mate,
I got thru the sleep study. It was a blessing in disguise . WE had 35c that night and a wild storm so for once I got to sleep in airconditioned comfort. Not that having around forty leads attached to you is comfort. I now have to wait three weeks to get results. I am sorry you are so tired all of the time. A lot of people don't understand . They think that every one gets tired . They just don't understand waking in the morning and sitting on the side of the bed. You look at the alarm clock and it is six fifteen. You glance back a second later and it is ten to seven. Where did thirty five minutes just go. I hate waking in the middle of the night from a bad dream . Then it becomes a waking nightmare because I am breathing but getting no oxy. I have to grab the ventolin ,I always use a spacer and have a couple of deep breaths. I settle down after fifteen minutes but my sleep pattern is destroyed and I am almost scared to lay down unless it all happens again. Wishing you well Ann, Ron.
 
This is me:

1991: I felt something very painful going on "down there". I was on a two day Greyhound Bus ride from Idaho to Arizona and I was totally miserable. I had no idea what was causing the pain, maybe a bad hemorrhoid ? I get home, I look at the painful situation "down there". It looked like a blister. This is going to sound gross, but I popped it. Liquid came out and it smelled nasty. I did not go to the doctor. I spent almost a year wearing panty shields so that it would not leak onto my underwear. Almost a year later I went to a doctor and I found out I had an anal fistula. The doctor I went to was not a nice doctor. He did the operation and my fistula was taken care of. It was a terrible experience because of the mean doctor I went to. I had the operation in 1992. A colon/rectal surgeon did the operation. I have a lot of scaring from this operation. Every doctor that looks at me "down there" tells me they see a lot of scaring.

In 1995 I went to my Primary Care Physician. He was an old guy. I hate old guy doctors. Anyhow, he ordered me to have an Upper GI because I was having health issues and he felt that this test was necessary. He basically sent me home with a bunch of anti-acids or something like that. The next year I had a Laparascopic Cholestectomy. I had my gallbladder taken out because I had gallstones I had been sick for about a year. A general surgeon did the operation. Even though I had to wait a month to get scheduled for this operation I was totally appreciative.

So, now it was 1997. I started to have terrible diarrhea. Watery, yellow diarrhea. I was miserable. I eventually went to my Primary Care Physician and he prescribed something called Cholestyramine Powder. I did not know what this powder was, but it helped me with some of the diarrhea issues, but not 100% effective. I did not know how the powder worked and what kind of health issues it was prescribed for, I just knew that my doctor prescribed it for me and it helped me out. I never questioned anything. Obviously I was not interested in learning about my own health and what was going on with me ?

Late 1990's: I had a lower GI and a Flexible Sigmoidoscopy. I was seeing an Internal Medicine Doctor. Both tests made me feel uncomfortable. Nothing was found. I believe they said I had IBS ? My memory isn't the greatest. All I remember is still being miserable and not having the proper diagnosis. I gave up on doctors for a while after that. I mean, tell me why I am having this crazy diarrhea already !

2002: OMG, it was so painful "down there". I thought I had a huge hemorrhoid or something, so I suffered over an entire two day weekend. I showed up at my Primary Care Physicians office sobbing because of the pain. He examined me. He gave me a prescription for pain killers and I had an appointment the very next day to see a general surgeon. I drove to the general surgeons office the next day ( sitting on my donut pillow in my vehicle and also bringing the donut pillow with me to the doctors office lobby ). The general surgeon saw me and sent me right to the hospital ! I had a rectal abscess. I had no idea what a rectal abscess was or what caused them to happen. I was in so much pain that after I was admitted to the hospital the nurses just kept giving me Demoral until I had the operation. Afterward I felt so much better. I had no idea what caused a rectal abscess and no one told me either.

2006: I go to a Gastroenterologist and I get my first colonoscopy ( which should have been performed in the late 1990's when I was seeing the Internal Medicine Doctor ). I was diagnosed with Ulcerative Colitis and started on Asacol. Then later on I went on Lialda. I continued on with the Cholestyramine Powder. I was so happy to have a diagnosis and I liked this doctor. He knew my surgical history. He did not say anything about the anal fistulectomy or the rectal abscess being part of this whole Ulcerative Colitis thing. I was totally unimformed.

In 2009 I felt like something was going on "down there" and I recognized the symptoms. Instead of waiting to see my Primary Care Doctor or a Specialist I just drove right to the hospital emergency room before the issue became very painful. I was diagnosed with another rectal abscess. The doctors did the operation the next day. I was just so glad that I did not have to endure the pain this time than I had the last time. I still had no idea that rectal abscesses had something to do with a colon disease.

2014: I start having terrible constipation ! I almost could not even go to the bathroom at all ! I go to a new GI because my health insurance plan changed. He performed a colonoscopy and my results came back "normal". His office gal called me with my colonoscopy results ( why didn't I have a follow up visit to talk to the doctor in person ? ). She said the results were normal and the doctor wanted me to discontinue all of my colon medications. SAY WHAT ! I told the gal that I could not do that. If I don't take the Cholestyramine Powder I will get very sick and have terrible yellow, watery diarrhea. She talked to the doctor and she called me back. She told me that the doctor said I could take the Powder "as needed". I had been taking two packets a day for many years. I knew that now, in 2014, two packets would cause me constipation and that no packets would make me very, very sick. So I started to take only one Powder packet a day. This one packet a day has been working out for me, not 100% effective, but enough to make me feel more comfortable and I have only had two or three "emergency diarrhea" situations since just taking one Packet a day. I am still taking the Lialda pills because I still have some of the pills left in my pill bottle and I figured I would just keep taking them until they were all used up. I see this new GI tomorrow for a "follow-up". I am honest will all of my doctors, so I will tell him that I am still taking one Packet a day and I am still taking my 2 Lialda pills a day.

2014: Until I joined this site I had no idea what Bile Malabsorption was or what it was all about. I recently looked it up on the Internet and I am 100% sure that I have it. I have all of the symptoms. When the Internet article mentioned yellow diarrhea I knew that was what I had ! The article mentioned the Gallbladder, etc. Not one of my Primary Care Doctors or my Specialists had ever mentioned Bile Acid Malabsorption to me. So now I know why I get the yellow watery diarrhea if I don't take the Questran Powder, it is because of the bile problem.

So, now here I am. I now know that the anal fistula, the rectal abscesses, the bile malabsoption issues all have something to do with my Ulcerative Colitis. So why did it take 22 years to figure this out. Does this happen to everyone ! I suffered with terrible diarrhea for so many years and I had accidents and I even had to travel for my job while I was having the diarrhea symptoms. I was very uncomfortable and felt very sick most of the time. I was on a vacation in San Francisco in 2001 with my sister. She remembers found memories of the trip. I remember having diarrhea the whole time and also vomiting and feeling absolutely terrible.

That is my story, for now. Thank you for listening.
I know that I don't have it very bad at all compared to a lot of you folks, so I shouldn't be whining. I have never had colon surgery or a seton or humira or stuff like that. But this disease is chronic, so I know it won't ever go away. Family members don't understand this stuff. They don't understand that when you say you have to use the restroom that you mean NOW, and not ten seconds from now. But NOW. I was so happy at my mother's graveside service over Labor Day weekend in Minnesota that I did not have to have a BM all day long. I mean, where is a person going to find a restroom in the middle of farm country in rural Minnesota !

PS: I have also had a Partial Nephrectomy in 2007 on my left kidney. I now have a cyst on my right kidney. I have arthritis in my shoulders, neck and hips. I have iron and B12 deficiency. From what I have read on this website, all of the above health issues could be connected somehow with the Ulcerative Colitis ? I just started taking thyroid medication too. I really don't know what else could happen to me. Oh, and I suffer from Major Depressive Disorder and Anxiety. I am so sick and tired of being sick and tired. I am only 54 years old. :sign0085:
 
It is a shame we did not meet years ago. The bile salt malabsorption is a result of the gall bladder surgery. Ten percent of people who have their gall bladder removed suffer from bile salt mal absorption. Cholestramine ( mine goes under the heading of questran lite) is an old cholesterol medication used in conjunction with early statins. It binds the bile salts and cholesterol and takes the whole lot thru undigested. Tah Dahh no more diahorrea , I found one sachet was enough. I suffered for a year after I lost my gall bladder. I have used the questran for around four years and have found I no longer need it.Ann if I were you I would be trying to find a GI who specialises in Crohn's or even better one you can discuss issues with. I have trained a nephrologist and a gp. (Training starts with a rolled up news paper ). I talk with these guys and we actually dscuss the pros and cons of things before I go on them. Take care mate.. Ron.
 
Ron:

Thanks for your support.

I was writing a long response, when I hit a wrong button on my computer
keyboard and then my whole post was lost ! Ahhhhhhhhhhh !

Thanks for listening.

PS: I AM NOT GOING BACK TO THE GASTROENTEROLOGIST THAT
I SAW THIS YEAR. I CAN CHOOSE A NEW ONE NEXT YEAR.
 
PS: Okay, I know this is crazy, but I have been tracking all of

my doctors visits this year ( including tests I have had also ).

The total is currently at : 57.

That is not a "typo". Yes, 57 "doctors" visits so far for me in 2014

( including blood draws, x-rays, scans, urine test, and ultrasounds.)

I still have four more "appointments" scheduled for November/December 2014.

:yfaint:
 
Ann Morgan said:
PS: Okay, I know this is crazy, but I have been tracking all of

my doctors visits this year ( including tests I have had also ).

The total is currently at : 57.

That is not a "typo". Yes, 57 "doctors" visits so far for me in 2014

( including blood draws, x-rays, scans, urine test, and ultrasounds.)

I still have four more "appointments" scheduled for November/December 2014.

:yfaint:
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Sounds like my life. Except that I count in weeks/months spent in hospital, where tests, consultations, etc. happen multiple times daily. :(

I often think, though, that many outpatient consultations could be done over the phone or by e-mail. Do you get those appointments where you make a long trip to the hospital, wait for hours to see the consultant, who just ends up scheduling the next test, or referring you to someone else, or giving you a simple prescription? Don't they realise the time, money and energy that could be saved if they would just email or use a phone?!
 
UnXmas said:
Sounds like my life. Except that I count in weeks/months spent in hospital, where tests, consultations, etc. happen multiple times daily. :(

I often think, though, that many outpatient consultations could be done over the phone or by e-mail. Do you get those appointments where you make a long trip to the hospital, wait for hours to see the consultant, who just ends up scheduling the next test, or referring you to someone else, or giving you a simple prescription? Don't they realise the time, money and energy that could be saved if they would just email or use a phone?!
Click to expand...

It annoys me greatly about the effort I go to to be able to make it to an appointment, then maybe have to wait a couple of hours to have a 5 minute session with my Dr and come out feeling under valued, unheard and as though I'm making it up. It's so frustrating.

I've never thought to count my drs visits but I will tomorrow, just out of curiosity.
 
Got the results of my sleep tests today. Normal sleep , mild to medium sleep apnea. REM sleep severe sleep apnea. They are recommending a cpap machine. I will spend another night at the sleep clinic to see what mask best suits me and the settings for the machine then they write out a script for it and send it to my gp. They are making some alarming noises about whether I will be allowed to continue driving. I had better get my gp to start writing supporting notes.... Ron.
 
I actually would like both my wife and I to take a doctor break for a while, but that isn't going to happen.

I have Centralized Sleep Apnea (as opposed to Obstructive Sleep Apnea) and I am suppose to use a CPAP at night. I find the mask to be most irritating. I usually sleep with it about 4 hours a night then take off the mask so I can sleep better. Centralized sleep apnea is the type that occurs when the brain forgets to send signals for the lungs to breath. If the CPAP is one my face I get panicked - feeling I am being smothered. If the CPAP is not on my face I then will wake up gasping for air (at times). I feel like it is a nasty trade off.
 
If I don't use the cpap they are going to take my licence off me and not let me drive. I go to the sleep clinic tomorrow night to get it sorted out as to what mask and what pressure I need. I also see my nephrologist tomorrow. I am still taking cyclosporine for nephrotic syndrome, It does not look like I will ever reach remission tho. I don't really want to go off the cyclo . I have heard too many stories where people come out of nephrotic syndrome and they go off the drug. The protein loss starts up again and now the cyclo does nothing. I have another strange problem I need to ask him about. Six years ago I was dxed with benign prostate enlargement. My prostate was estimated at 46cc and dimpling the bottom of my bladder. A month ago I had another ultrasound to see how much it has grown. It is now 27cc, nearly half the size it was . I can't find any information about prostate enlargement reversing????? Ron.
 
Hi my name is Jane. I do have multiple illness and almost all my body except by brest have scars or is mishapened or swollen by my disease and illnesess. For today I am just going to list and go to bed because I am hurting. MY medical history looks like this: RENAL - End stage renal disease (R) glomerulonephritis (L) congenital malformation, never developed. Kidney transplant x3 Hemodialysis HEARING - severe hearing loss form birth, (R) & (L) hearing aids. ORTHOPEADIC - Avascular necrosis in all leg and arm joints, rheumatoid arthtritis, osteoarthritis in all joints as well as lower back, osteoporosis. Several surgeries including bilateral knee repalcements and subsequent revisions and repairs. Multiple stress fractures (mainly in feet when walking) displacements and broken bones. ENDOCRINE - hypogonadism, hyperpara- thyroidism. Situational diabetes, Vitamin D deficiency and transient hypercrolactinemia. Lymphedema (R) right arm from one enlarged lympnode being removed. GASTROINTESTINAL - polyps, colon cancer x2, Crohn's disease, small intestinal blockage, GERD=reflux, pain nausea, gall stones, stomach ulcers and polyps, ileostomy. GYN - benign ovarian mass x2, abnormal pap smears, HPV, pregnancy=D&C w/ tubal ligation and more.
 
yosemitegirl said:
... DNR on record... do not resuscitate. And I mean it. Not depressed as much as realistic.
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And this is why DNR's/Advanced directives are up to each individual and should stay that way. I've nearly died from Crohn's as well. I was quite happy when I woke up each time.

When I got my last colonoscopy they asked if I have an advanced directive/DNR. I said "Nope. And if you have to put clock gears and a mini-steam engine in me to keep me going... Do it!"

And I stand by that statement. This is what I view as best, and realistic, for me.

For context: I've had a moderate to occasionally severe, treatment resistant, cas of Crohn's for 31 years (allergic to all TNF-alph blockers, 6MP didn't work, only damaged the liver, Methotrexate is sortta working). Some years have been amazingly good. This last decade... not so much.

I hope your doctors start taking your DNR seriously. This is what you view as best for you. They need to respect it, even if it isn't what they would choose for themselves.
 
As for my illnesses:
1. Crohn's Disease, with peripheral arthritis

2. Kleine Levin Syndrome

3. Asthma (mild)

4. GAD with Comorbid Major Depression (very much affected by activity of other medical issues)

5. ADD (mild)

6. Osteopenia (thinning bones) due to being on and off prednisone all these years.

7. B12 and blie-salt malabsorbtion due to losing the terminal ileum (the result of 3, soon to be 4, resections for Crohn's)

8. Possible IBS, but this is unclear given the overlap in symptoms with Crohn's.

9. Chronic upper back pain. (Possibly due to Crohn's peripheral arthritis, but seems to act up independently...)

10. Numerous food sensitivities, including but not limited to lactose intolerance.

11. Mild to Moderate (depends on the week) bursitis in the right hip.

**edit, forgot one** 12. Recurring kidney stones. 6 since 1997.

Am I working?
Barely. The combination of KLS and Crohn's have put me in a position of not being able to find new work should I lose my current job. Depending on the relative activity of each I've missed up to 3 weeks out a month a few times in the past year. My current employer is being insanely good about things... for now.

The backup plan?
Assuming long term disability insurance can kick in, I'll go with that as long as I can. (I started this job less than a year ago) Also, to better my chances of getting on SSDI, should I need to do that instead, I've started the process already. A law firm will be taking a look at the paperwork my doctors have been filling out and will let me know what the odds are of me getting SSDI approved (i.e. are they willing to take my case)
 
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Jason: You should be approved immediately ! If your lawyers don't take your case call Binder & Binder. They did a good job for me. Obviously with all of your health issues you should have an enormous amount of medical records and that will work in your favor. Some folks get approved right away. I had to wait 21 months for my SSD hearing. I won my case that day. Good luck to you and keep in touch. I cannot believe you are still working a job with all the health issues you have ! You sound like a very strong person. PS: I grew up in Minneapolis. I am now in Arizona.
 
Ann Morgan said:
... you should have an enormous amount of medical records and that will work in your favor. Some folks get approved right away. I had to wait 21 months for my SSD hearing. ... You sound like a very strong person. PS: I grew up in Minneapolis. I am now in Arizona.
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Hi Ann,
I hope AZ is treating you well.

Thanks for your kind words. My hope is to NOT have to go on SSDI. As for strong or not... All I know is that I program computers for a living, and that my brain is always in overdrive (go ADD and GAD!) As such I find it difficult to not do something that people would consider work-like ... when I'm feeling well, or even so-so... which as you probably guessed, happens at random.

That and I'm quite belligerent. It's been a since birth trend I'm afraid. You see I was born with my umbilical cord around my neck... twice ... if there was any restricted blood flow to the brain I refused to let it stop me from getting out of the womb and demanding food. I literally I refused to stop crying until they fed me. (It was lunch time, da**it and I was hungry!) Not much has changed since. :lol2:

As for the severity of the issues I have: most are readily manageable and don't degrade my ability to work or generally enjoy life outside of when the symptoms are active. In some instances ADD actually helps (hyperfixation can lead to tremendous productivity, and yes, sometimes, burnout)

The two biggest concerns are Crohn's and KLS. And they are quite the pair to have going on at the same time! Ultimately I need both under better control. The silver lining is KLS usually spontaneously resolves in a decade or so.

To quote Carl, the grounds keeper, from Caddyshack "...So I got that goin' for me, which is nice."
 
UnXmas said:
... Don't they realise the time, money and energy that could be saved if they would just email or use a phone?!
Click to expand...

My doctors have finally entered the early to mid 2000s with their technical ability and the use of technology to facilitate communication. I started hounding them over a decade ago about this. They adopted the it about 4 years ago. I was quite glad when they did.

Before that I was in the same boat as you. It sucks. So if you have other options for doctors/facilities that embrace technology and open lines of communication via the phone, or email, explore those options. Driving hours to be shuffled off to someone else after a cursory inspection is neither convenient, nor cost effective for anyone... (i.e. assuming, of course, this doc is already familiar with you and you've clearly communicated your concerns/symptoms.)

When used properly, communicating via the phone or email saves money, and improves the quality of care!

By properly I mean as NOT a substitute for a lab work, radiology, palpation or other physical exams that tell the doc how things are progressing; and where there is an established history of clear, concise, effective communication between you two. This means a handful of visits that may fall into the annoying seeming waste of time category at the start, with them growing fewer and farther between.

By way of example, if my GI doc hears out my symptoms and says "I would like to see you before we try X,Y, or Z." I don't question it. He is the expert and I trust him to know when a hands on approach is warranted. And I've been seeing him for over a decade. On the other hand, my Primary Care Provider (PCP) left the clinic I prefer a few months ago, and I had been bouncing among various PAC's and MDs for a while.

I think I've finally settled on a PAC who knows her stuff. However, since we're still building the rapport, right now I expect her to insist on seeing me, where my other PCP would may consulted with me over the phone. She needs the "Jason experience" to be able to best judge when just a phone consult or an in person visit is warranted.

And of course, any doc that I feel I've established a rapport with who then later cops an "appointments first, ask questions later" attitude gets replaced the moment that becomes evident. Or worse yet, with whom I fail to establish a rapport. Both situations have been very rare in my life, but sadly, not absent.
 
Hi JasonD, I just looked up Kleine-Levin syndrome as I'd not heard of it before. I'd be interested to hear how it affects you and whether you've found any treatments that help with it, if you don't mind talking about it (only if you're happy to do so).

Sleep disorders interest me as I have all sorts of weird sleep behaviours. I recently started on modafinil, which is supposed to improve concentration and promote wakefulness. I'd read a lot before hand about how it causes insomnia, how people take it to help themselves concentrate but then are awake even when they want to sleep, and have to wait for the medication to wear off before they can sleep again. But I can take it, feel desperately tired and have to take naps during the day, and still sleep all night. I started a thread about it: http://www.crohnsforum.com/showthread.php?t=67990

I expect my sleepiness is nothing like your sleep disorder, but would still like to hear about your experiences if you ever want to talk about them.
 
UnXmas said:
I'd be interested to hear how it affects you and whether you've found any treatments that help with it, if you don't mind talking about it (only if you're happy to do so)....
Click to expand...

Hi UnX.
Wow. By the sounds of it, if you're not seeing a doctor specializing in sleep disorders, you should really consider it!

Sure, I'll share.

The ultra-short version:
I sleep lots, up to 20 hours a day. When awake I'm a zombie. Modafinil kept me awake, after taking its sweet time to kick in, but didn't help the zombification. It also triggered anxiety. Hence the new med.

The long version:
First, I was diagnosed with it this past July. It started a year ago, just on the heels of, or mid-Crohn's flare up. So it was tough to even figure out it was a separate issue. After many tests to rule out all sorts of other stuff (addisons, thyroid...etc.) the diagnosis came in. KLS is a diagnosis by exclusion.

When it's acting up I feel tired beyond anything I've ever felt before and want nothing more than to sleep. All day. All night. I can't stress enough that for me, the urge to sleep is so all consuming so that it's downright scary. Food, which I love, doesn't rouse me enough to do more than consume enough to fall back to sleep. Sometimes I overeat while in this state and don't realize it until I'm out of an episode. I sleep through alarms and phone calls or don't remember turning them off/answering. And all memories I have of events that happened during an episode are blurry and fragmentary. It's as if I'm remembering a long forgotten dream, even though I know its real.

When I am awake, it is at random times day or night with no discernible sleep pattern. Wakefulness seldom lasts more than 4 hours, usually 2 or less. When awake, I'm a zombie; I could literally, and easily, be outsmarted by a 5 year old. Also I'm usually clumsy enough so I don't trust myself driving, even toward the tail end of an episode. No amount of caffeine helps wake me.

Occasionally at the very tail end of an episode (especially multi-week ones) I will have a couple of days of insomnia and probably hypo-mania (I feel TERRIFIC, even despite the lack of sleep) Then I crash, sleep a lot one night and everything is back to a nearly normal sleep schedule.

I tried modafinil for a while. It physically woke me up if I took twice the initially prescribed dose. It took 4 hours to kick in, sometimes longer, and it didn't cognitively wake me much... A ten year old could have outsmarted me as opposed to a five year old. And worst of all it would trigger anxiety episodes. (So much for being able to do household chores when it's active!)

Interestingly, just after my last KLS flare, I bought CoQ10 on a whim. That stuff gave me insomnia as I took it in the evening. So then I read about it. (Bad Jason! Read about supplements before buying and taking!)

Basically, it's what our cells (specifically the mitochondria in our cells) use to make energy. It *seems* to be helping a little for overall energy related to my current Crohn's flare. Now if only it would take care of the rest of the Crohn's issues! I'm hoping it'll also help reduce the severity of a KLS flare up too.
 
Thanks so much for sharing.

Wow. By the sounds of it, if you're not seeing a doctor specializing in sleep disorders, you should really consider it!
Click to expand...

I have enough diagnoses already, and see enough doctors already to want to go adding any more! I've been sleepwalking since I was a small child (and by "walking", I mean waking, talking, getting dressed, moving furniture around... basically anything I can do while awake, I can do while asleep). I also have night terrors, and recently found that there is a name for something else I've had my whole life: hypnogogic hallucinations. But these have never bothered me enough to see a doctor. The excessive sleepiness, my GP views it as just an inevitable result of being so ill, and it is true that that sleep symptom didn't come on until I was in my teens, which was when I started developing other health problems.

I know what it's like to start resorting to trying anything and everything, uping the doses, in an effort to feel better. Do you see a sleep specialist? Are your doctors still trying to find treatments for you, or did they just diagnose you and leave you to it?
 
Just joined this group so thought I'd post my list. It is NOTHING like some of you. But I definitely have enough going on that doctors sometimes disagree about what to do -- a drug will help one issue but make another worse.

Most of what's happening lately is related to auto-immune issues that started just 6 years ago (arthritis, hidrodenitis, PG ulcers, canker sores, nonhealing wounds, permanent muscle weakness from past steroid use, etc.) Other stuff:

- Meniere's disease dx about 20 years ago; mild nausea most days, occasionally severe
- Asthma on and off about 30 years
- Borderline glaucoma (eyedrops sometimes)
- Gall bladder removed (multi drug resistant infection picked up during hospitalization for Crohn's; settled in gb)
- Reflux for 10+ years

The pill situation is ridiculous! But I've become good at taking several on just a sip of water. I feel such a triumph when I can stop taking something.

So far, I have kept my job but it has been touch and go. Nearly lost it in 2013 but my boss stuck up for me when others wanted me out. However, he said it's the last time he can help so there's a good chance I will loose it after the next surgery -- flap surgery in June 2015 with a 50-50 chance it will make things better rather than worse. Since I'm 53, it's unlikely I will find another job in my (very specialized) field.

This is when it sucks to be single! I'm worried about becoming jobless, homeless, etc.
 
- What do you have?

I have been diagnosed with:
Crohn's
Seizures
Ehler's Danlos
Small brain tumor
Fibromyalgia
Chronic Bronchitits
Eearly stage Lung Disease(never smoked)

I have 2 masses in my breast that I am being followed for(ultrasound every 6mos)
I am currently being tested for thyroid cancer b/c they found a 3cm mass on my thyroid

- How do you juggle all your appointments?
Sometimes I find myself double booking. I have different drs for different days. Example: Tuesdays and Thursdays are reserved for Physical therapy. MWF are for regular doctors.
- Do you still manage to work?
I manage work but they made me agree to part time. I kept my pay but lost paid vacations.
- Taking meds takes on a whole new meaning, how many are you taking?
I take 9 a day but have taken 15.
- Why does it seem like everything is a small white pill? Hope I took the right one...
- Do your doctors get along?
I hate my neurologist. I was fired from the one I liked b/c he said I was too complex of a case. The new one has an office-literally-a desk and 2 chairs.

I love my PCP-he has been my saving grace. We butt heads quite a bit but not in a negative way. It's a good thing b/c I see him almost weekly.
- How do you know if it's X, Y or Z acting up again?
I am in limbo with that. The drs tend to point the finger at other illnesses.
 
My illnesses consist of:

Crohn's
Ankylosing Spondylitis
Hemochromatosis
Hashimoto's Disease
Reynaud's Phenomenon

When I had my resection surgery, they found a serrated adenoma in my colon, and I have a history of elevated LFTs.

I love my doctors, they are some of the best in the nation.

I agree with you, cantthinkstr8t...I am also in limbo as to which condition is causing me the most anguish at any given time. I am sick and tired of being both SICK AND TIRED!! Hope you get well soon!
 
I have Crohn's, asthma, POTS, and a genetic connective tissue disease called Ehlers Danlos Syndrome. It's difficult to tell what is a symptom, and what is a condition in its own right, and how to treat each one.
 
Hop said:
I have Crohn's, asthma, POTS, and a genetic connective tissue disease called Ehlers Danlos Syndrome. It's difficult to tell what is a symptom, and what is a condition in its own right, and how to treat each one.
Click to expand...
I agree with you. Which disorder or disease is causing which symptom ? It gets so frustating. I have multiple illnesses too. All I know for sure is that they all cause me fatigue. There is a thread here for fatigue ( Thank goodness).
Have a great weekend. :)
 
Hop said:
I have Crohn's, asthma, POTS, and a genetic connective tissue disease called Ehlers Danlos Syndrome. It's difficult to tell what is a symptom, and what is a condition in its own right, and how to treat each one.
Click to expand...

I have all but the POTS as well. I also have fibromyalgia, RA and seizures. Not every day you see someone with Ehlers Danlos.
 
ron50 said:
Got the results of my sleep tests today. Normal sleep , mild to medium sleep apnea. REM sleep severe sleep apnea. They are recommending a cpap machine. I will spend another night at the sleep clinic to see what mask best suits me and the settings for the machine then they write out a script for it and send it to my gp. They are making some alarming noises about whether I will be allowed to continue driving. I had better get my gp to start writing supporting notes.... Ron.
Click to expand...

I want to request a sleep test. Would my insurance company pay for it ?
 
lollyadverb said:
Just joined this group so thought I'd post my list. It is NOTHING like some of you. But I definitely have enough going on that doctors sometimes disagree about what to do -- a drug will help one issue but make another worse.

Most of what's happening lately is related to auto-immune issues that started just 6 years ago (arthritis, hidrodenitis, PG ulcers, canker sores, nonhealing wounds, permanent muscle weakness from past steroid use, etc.) Other stuff:

- Meniere's disease dx about 20 years ago; mild nausea most days, occasionally severe
- Asthma on and off about 30 years
- Borderline glaucoma (eyedrops sometimes)
- Gall bladder removed (multi drug resistant infection picked up during hospitalization for Crohn's; settled in gb)
- Reflux for 10+ years

The pill situation is ridiculous! But I've become good at taking several on just a sip of water. I feel such a triumph when I can stop taking something.

So far, I have kept my job but it has been touch and go. Nearly lost it in 2013 but my boss stuck up for me when others wanted me out. However, he said it's the last time he can help so there's a good chance I will loose it after the next surgery -- flap surgery in June 2015 with a 50-50 chance it will make things better rather than worse. Since I'm 53, it's unlikely I will find another job in my (very specialized) field.

This is when it sucks to be single! I'm worried about becoming jobless, homeless, etc.
Click to expand...

Check the Disability thread here if you need help with SSD.
:)
 
cantthinkstr8t said:
- What do you have?

I have been diagnosed with:
Crohn's
Seizures
Ehler's Danlos
Small brain tumor
Fibromyalgia
Chronic Bronchitits
Eearly stage Lung Disease(never smoked)

I have 2 masses in my breast that I am being followed for(ultrasound every 6mos)
I am currently being tested for thyroid cancer b/c they found a 3cm mass on my thyroid

- How do you juggle all your appointments?
Sometimes I find myself double booking. I have different drs for different days. Example: Tuesdays and Thursdays are reserved for Physical therapy. MWF are for regular doctors.
- Do you still manage to work?
I manage work but they made me agree to part time. I kept my pay but lost paid vacations.
- Taking meds takes on a whole new meaning, how many are you taking?
I take 9 a day but have taken 15.
- Why does it seem like everything is a small white pill? Hope I took the right one...
- Do your doctors get along?
I hate my neurologist. I was fired from the one I liked b/c he said I was too complex of a case. The new one has an office-literally-a desk and 2 chairs.

I love my PCP-he has been my saving grace. We butt heads quite a bit but not in a negative way. It's a good thing b/c I see him almost weekly.
- How do you know if it's X, Y or Z acting up again?
I am in limbo with that. The drs tend to point the finger at other illnesses.
Click to expand...

I have three nodules on my thyroid and one of them is growing. I had a needle biopsy on the one that is growing last year. I get regular ultrasounds on my thyroid in my Endocrinologists office. I get blood work done too. My next ultrasound is in December 2015. I take Levothyroxine for Hypothyroidism. I really don't know too much about this disease. I don't remember the dimensions of my three nodules .... but I have the ultrasound test results in my files. Have a good weekend.
 
My sister has many health issues too, like I do, but she doesn't complain about them like I do. She does not talk about them with me very often at all. She is not much for sharing stuff like that. She does not dwell on her illnesses ? Or maybe she believes in not talking about them ? Anyhow, I am the opposite. Every illness and every symptom effects every part of my life. Why am I so different in the way I approach my multiple illnesses ? I know I have Major Depressive Disorder and Anxiety and she does not. Is this the "missing link" between her and I ? She has RA, Sjogrens Syndrome, survived breast cancer in 1987, a type of lupus, some sort of scoliosis, maybe some basal cell carcinoma. She lives in Idaho but is retiring here in Arizona for three months of the year. I told her to consider seeing some doctors here to get some second opinions about her diagnosis and treatments because we are a large city and have many good doctors and hospitals here. Boise, Idaho is not a very large city and probably has less options for doctors and treatments ? Thanks for listening. I am awake all night tonight. Just means more tiredness all day Sunday. ( Sigh)
 
- What do you have?
Bipolar 2. Diagnosed about 5 years ago. Lamotrigine has kept me 'balanced' and normal. It's like a miracle med for me. Also, haven't been suicidal since I started using it. Type 2 has to do more with depression, and the type of 'mania' is feeling like you can do a million things at once, racing thoughts, anger easily, etc. Nothing like how type 1 gets euphoria. But, I haven't had those weird swings since I started that med years ago.

Menorrhagia and Dysmenorrhea. Diagnosed in 2008. Found out after bleeding heavily and in immense pain for 8 months straight. Having an IUD has been a lifesaver for it.

Agoraphobia. I've had this one for most of my life.

Eczema. Diagnosed in 2011. It was really bad in my armpits. I was scratching them so much, I was ripping off layers of skin and bleeding. They thought it was a fungal infection at first. I have to stay away from certain chemicals in products now.

Problems with my Eustachian tubes. I've always had this, but wasn't diagnosed until about 6 years ago. My ears produce too much fluid and wax. Even air pressure affects it. It can be very painful, and my sense of balance can be off. I'm actually told by doctors to use q-tips in my ears every day. I also have to use a kit to really clean them out. I can hear really well after that cleaning.

Keratitis pilaris. Was diagnosed with this when I was around 8. My skin makes weird pillars, and sometimes they can painfully open. Or clog folicles, dry out my skin, etc. It reacts when I shower too much or too little, with the weather, if I pick at them, etc.

PTSD.

I've had clots in the past, and have to watch out for them. That time I had them, I had 60x the normal clotting factor and every air sac in my lungs had a clot. I had to be hospitalized for a week.

A weird reaction where I was throwing up all day with no warning each time. Never figured out what it really was, but omprezole helps with it. I rarely throw up while on it.

Diagnosed with Crohn's at the end of July.

- How do you juggle all your appointments?
I actually don't have many apointments. When I do have appointments, I just add them to my calender, and set up reminders.

- Taking meds takes on a whole new meaning, how many are you taking?
I'm taking omeprazole (one pill before breakfast), azathioprine (1 small pill 3 times a day), balsalazide (3 huge pills twice a day. Was taking them 3 times a day, but luckily I went down in dosage), lamotrigine (1 pill 2 times a day), and a multivitamin. So, for the entire day, I'm taking 13 pills.

- Do your doctors get along?
Yeah, I think so. My gastroenterologist was recommended by my new primary. So, they get along ok. I haven't seen a therapist or psychiatrist in a while, though. (I should. Especially since I've been diagnosed with Crohn's, and my mom passed away 3 years ago...) But, they wouldn't have to get along, really.

I like the idea of a support group for people who suffer from multiple things.
 
Besides Crohn's Disease I have mild cerebral palsy, hypothyroidism, mild arthritis in the back and psoriasis.
 
Just a quick hello as I just picked up on this group when the Admin replied to a personal thread. I have multiple illnesses but crohns is the one that causes me not to be able to work. I have retired early upon medical advice on an invalids benefit - I will be on an old age pension in another 5 years. I am a very young at heart 60 and when the arthritis isnt too bad I ride a motorbike ;)

I have Crohns, developed in my early thirties but mis-diagnosed for 25 years until I became bed-ridden and an overseas intern working in the little country town I was in at the time recognised the symptoms and begged me to go private and sort it out even if it meant taking out a loan to do so, I went private and the rest is history. 5 years later Im facing a resection right now following crohnic pain, vomitting, nausia and spasms due to a complicated restriction recently identified in an MRI. The symptoms of this disease define my life in an unpleasant way

I have Type 2 diabetes which is a pain as crohns allows me to eat sugary stuff like jelly lollies, some cake etc etc without any problem. Having diabetes AND crohns is a pain as following both food regimes means there is almost zip left on the eatable list - I cheat :(

I have Hypothyroidism diagnosed so long ago Ive almost forgotten what the symptoms were that I take meds for. I am allergic to thyroid pills that are not Goldshield brand.

I have sleep apnoea - I used a CPAP breathing machine for a while but woke up every morning with the mask ripped out of the machine (with the machine on the floor sometimes) and the mask on the other side of the room - clearly in my sleep I didnt like it! I gave up on it.

I have Hypertension - well who wouldnt have high blood pressure with all that lot going on! hahaha

Anxiety and depression - hereditary weakness in 4 generations but also not helped by crohns.

Knee osteoarthritis - ouch - damn those stairs! :)

Hearing loss - classic industrial hearing loss loosing the ability to hear in the lower decibel range up to around 30.

Psoriasis on elbows and knees

I also had to have a hysterectomy and ovaries taken out recently due to abmormalities.

And lastly a very debilitating side of crohns that some people get - arthritis spondyloarthropathy. That just means all my joints hurt.

Other than that Im quite normal bwaahahahahaha. Seriously - the motorbike crowd I get around with, other than my closest friends, have no idea at all - other than perhaps the rattle when I hit a bump on the road - taking 20 pills a day tends to make you rattle ;)
 
Sorry to hear about everything you're all going through. Also sorry I haven't been active in this thread lately. My husband has a wealth of health problems too so I'm his only caregiver right now. Lots to do. :ybatty:

rcmacdo, I hope you don't mind my asking but what caused the PTSD? My husband has it too. It was brought on by waking during surgery. :(

JennyT I'm glad you're able to still get out and do something you love. :) I've never been on a motorbike (I'm assuming is the same thing as a motorcycle), always been afraid I'd just fall over at a high speed even though I can ride a bicycle ok. :shifty:
 
I have Gerd , high blood pressure , Cd, Depression - anxiety , cyst on overy had this for a while now , suffer from migrains, kidneys make some problems for me to and i feel my joints are a problem now and again sometimes i cant even pick a cup
 
Hi I'm new to this thread. I have multiple issues too unfortunately:

What do you have?
  • Thyroid Cancer
  • Crohn's
  • GERD
  • Anxiety/Depression
  • Back/Hip Pain - just now finding out this could be related to Crohn's
  • Chronic Idiopathic Urticaria (hives)

Juggling appointments? Google Calendar rules my life. Seriously...not sure how I'd keep anything straight w/o it. Not just my own doctor's appointments but the kiddo's activities, my husband's appts, etc.

Medications - ugh too many to remember, I hate having to fill out the medication form at the doc office....I need a cheat sheet and an extra sheet of paper. :lol:

Doctors - they do colloborate at times but I feel like I am the middle man and that can be so tiring. For example I just recently started seeing a rheumotoglogist. She wants to put me on Imuran to help with the back/hip pain and the Crohn's. My GI doc is hesitant to put me on that because of the slight risk of malignancy and my history of thyroid cancer. My endo who manages my thyroid cancer said he didn't think it'd be a problem to take Imuran or even to step up to biologics, but he would do some research. So now it's like a waiting game for all 3 of them to figure out what is the best course of action. In the meantime the GI doc Rx'd another med (Cholestyramine) to take in addition to the Pentasa, Canasa, and Entocort plus he sent me for a CT Enterography and I need to do a pill cam next.

My biggest complaint at the moment is that because my crohn's isn't controlled, it's affected my absorption of my thyroid meds (levothyroxine). I take a high dose to keep my TSH (thryoid stimulating hormone) supressed in order to decrease chances of cancer recurrence. Apparently I'm not absorbing the meds properly anymore so even though my doc bumped my dosage up my TSH doubled since the last test. Endo Rx'd higher dose and is hoping that helps bring it down. GI rx'd the Cholestyramine which I haven't taken yet because one of the big side effects is 'malabsorption' of other medications and levothyroixine is on that list. It's like a no win situation! :yrolleyes:
 
cheryl888 said:
Hi I'm new to this thread. I have multiple issues too unfortunately:

What do you have?
  • Thyroid Cancer
  • Crohn's
  • GERD
  • Anxiety/Depression
  • Back/Hip Pain - just now finding out this could be related to Crohn's
  • Chronic Idiopathic Urticaria (hives)

Juggling appointments? Google Calendar rules my life. Seriously...not sure how I'd keep anything straight w/o it. Not just my own doctor's appointments but the kiddo's activities, my husband's appts, etc.

Medications - ugh too many to remember, I hate having to fill out the medication form at the doc office....I need a cheat sheet and an extra sheet of paper. [emoji38]
Doctors - they do colloborate at times but I feel like I am the middle man and that can be so tiring. For example I just recently started seeing a rheumotoglogist. She wants to put me on Imuran to help with the back/hip pain and the Crohn's. My GI doc is hesitant to put me on that because of the slight risk of malignancy and my history of thyroid cancer. My endo who manages my thyroid cancer said he didn't think it'd be a problem to take Imuran or even to step up to biologics, but he would do some research. So now it's like a waiting game for all 3 of them to figure out what is the best course of action. In the meantime the GI doc Rx'd another med (Cholestyramine) to take in addition to the Pentasa, Canasa, and Entocort plus he sent me for a CT Enterography and I need to do a pill cam next.

My biggest complaint at the moment is that because my crohn's isn't controlled, it's affected my absorption of my thyroid meds (levothyroxine). I take a high dose to keep my TSH (thryoid stimulating hormone) supressed in order to decrease chances of cancer recurrence. Apparently I'm not absorbing the meds properly anymore so even though my doc bumped my dosage up my TSH doubled since the last test. Endo Rx'd higher dose and is hoping that helps bring it down. GI rx'd the Cholestyramine which I haven't taken yet because one of the big side effects is 'malabsorption' of other medications and levothyroixine is on that list. It's like a no win situation! :yrolleyes:
Click to expand...
Welcome. I am sorry you have all this going on. If you haven't already, we have a section in here called Your At ry
You might want to go over there and tell us your story. As far as remembering your meds for doctor's appointments, I believe there are apps on any other of your devices to help with that.
 
Hi Cheryl,
Sorry to see you with so many problems. I fully understand the implications with the cancer. I had stage 3c colon cancer. For whatever reason I have survived that for over 18 years but it appears that the chemo agents I had have caused some long term side effects. One of which is nephrotic syndrome of the kidneys. I am taking cyclosporine twice a day and at the moment it is controlling my protein loss. It also seems to be controlling my psoriatic arthritis but I have major hip and back pain. They think the back pain is a result of degeneration from two years of very high dose prednisone (75 mg daily). I have a history of peptic and duodenal ulceration and inflammatory bowel . I lost my gallbladder after a stone blocked my pancreatic duct and put me into acute pancreatitis. Since losing my gallbladder I suffer bile salt malabsorption. It has been treated successfully with cholestramine. It binds the bile acids and cholesterol and takes them thru undigested. I used to take my morning meds before breakfast then take the cholestramine (questran lite) after breakfast with some fruit juice 4 grm sachet. It did not seem to compromise my other meds. My nephrologist worries about the cyclosporine with cancer and I have to have six monthly skin checks for skin ca. The pred also put me into type two diabetes and I have an underactive thyroid and low testosterone. I hope you can manage the questran to get some relief , it was a miracle drug for me ,I went from around 15 bms a day to 2. It may help with the Crohn's as well , Best wishes Ron.
 
Hi all
Apart from the ibs/ibd/abdominal distension which has been continuous for over 2 decades with no relief i have copd stage 2 hypertension and nafld being checked out for possible sleep apnea did have cluster headaches and migraine which fortunately seem to have subsided. At the moment I'm on just 1 med which is for the hypertension and inhalers for the copd. Have an mri due later on today. Don't work
 
Oh my cheryl888, that's awful. :( Any chance of getting your endo to step on it (the research that is)? Crohn's can definitely cause absorption issues and you've gotta have those meds to make sure that the cancer stays away. I can understand why your GI is reluctant but that's a double edged sword and I'm hoping that the Imuran etc is the dull side of the blade. I can't think of a member off the top of my head who had cancer caused by one of the medications but it is possible that there are some members. People rarely mention it as a diagnosis of theirs on the forum. I hope you can get something working for you soon. :)
 
I saw my gp today. The main point of my visit is my continuing journey of withdrawel from targin (oxycodone//naloxone). I had been built up to a dose of 80mg a day. Unfortunately it was no longer stopping pain but causing it, hypo-algesia they call it. It is taking 32 weeks to get off it and I am down to 5mg morning and ten at night. It has been a long haul strewn with opiate induced constipation and bottles of coloxyl and dulcolax. I got my usual scripts but I am becoming increasingly concerned about not getting enough air when I breathe. I use cpap at night for apnea but at times it does not seem effective. A few years ago I spent time in hospital with parainfluenza. It hit me so hard I was leaking troponin the heart attack enzyme. Whilst I was in hospital they told me I had severe asthma and sent me home with a symbicort turbohaler preventative and ventolin with a spacer.. I did the spirometer thing today plus the second test after 4 puffs of ventolin. The ventolin did not make that much difference. My doc looked at the results and came to the conclusion that what I had did not really behave like asthma but more like copd. Today I started a new inhaler for copd. I don't know whether I can stay on it tho. When I read the side effects it said that it was not kidney friendly and I suffer nephrotic syndrome (an unknown auto-immune form). I am going to have to be very careful and run it past my nephrologist before I commit to it. Sadly the dose I took this morning helped my breathing. It might be like nsaids anther drug that works but I can't take because of my kidneys. I have had some severe breathing difficulties during the past weeks. Ventoloin struggled to alleviate them and when I did three days on the symbicort preventer my blood pressure went off the scale and I am on five bp meds a day. I am getting tired of juggling hand grenades all the time. Why can't life be simpler. Ron.
 
ron50 said:
I saw my gp today. The main point of my visit is my continuing journey of withdrawel from targin (oxycodone//naloxone). I had been built up to a dose of 80mg a day. Unfortunately it was no longer stopping pain but causing it, hypo-algesia they call it. It is taking 32 weeks to get off it and I am down to 5mg morning and ten at night. It has been a long haul strewn with opiate induced constipation and bottles of coloxyl and dulcolax. I got my usual scripts but I am becoming increasingly concerned about not getting enough air when I breathe. I use cpap at night for apnea but at times it does not seem effective. A few years ago I spent time in hospital with parainfluenza. It hit me so hard I was leaking troponin the heart attack enzyme. Whilst I was in hospital they told me I had severe asthma and sent me home with a symbicort turbohaler preventative and ventolin with a spacer.. I did the spirometer thing today plus the second test after 4 puffs of ventolin. The ventolin did not make that much difference. My doc looked at the results and came to the conclusion that what I had did not really behave like asthma but more like copd. Today I started a new inhaler for copd. I don't know whether I can stay on it tho. When I read the side effects it said that it was not kidney friendly and I suffer nephrotic syndrome (an unknown auto-immune form). I am going to have to be very careful and run it past my nephrologist before I commit to it. Sadly the dose I took this morning helped my breathing. It might be like nsaids anther drug that works but I can't take because of my kidneys. I have had some severe breathing difficulties during the past weeks. Ventoloin struggled to alleviate them and when I did three days on the symbicort preventer my blood pressure went off the scale and I am on five bp meds a day. I am getting tired of juggling hand grenades all the time. Why can't life be simpler. Ron.
Click to expand...
I hope you find the right medicine to help you.
 
Thanks Ron , the new med is called Spiriva. I read up on it last night . apparently it is highly addictive( the last thing I need is another drug like oxycodone ) They also said it could cause severe nephrotic syndrome. I really think I need to talk to my nephrologist before I touch this stuff. Ron50
 
ron50 said:
Thanks Ron , the new med is called Spiriva. I read up on it last night . apparently it is highly addictive( the last thing I need is another drug like oxycodone ) They also said it could cause severe nephrotic syndrome. I really think I need to talk to my nephrologist before I touch this stuff. Ron50
Click to expand...
Agrref
 
Hello - not been on the forum for a while, and jusy came across this thread!
I'm 18 (female).

What do I have?:
• Crohn's disease (obviously :ylol2: )
• Polycystic Ovarian Syndrome
• Ankylosing Spondylitis, effects my hips and knees as well as my back.
• Osteoporosis (thanks steroids!!) - spinal fractures T6, T8 and T12 from sneezing... I have very weak bones.
• Psoriasis
• Depression

Appointments:
Luckily, I have a joint Ank Spond and Crohns clinic. My rheumatologist also looks after my osteoporosis. So, my appointments are all almost compacted into one.

Medications: (15-17 in total but I'll probably forget some...)
Humira (Crohn's and Ankylosing spondylitis), Fluoxetine (Depression), Oxycodone, Omeperazole (Crohns), Ranitidine (Crohns), Folic Acid (low folate), Calceos (Osteoporosis), Zoledronic Acid (Osteoporosis), Clonidine (Pain & sleeping tablet), Paracetamol (pain), Cyclzine, Ondansetron (I vomit in pain and during Crohns flares), Cholecalciferol (very low Vit D), and Fresubin Energy (weight loss).
Occasionally, if my Ankylosing Spokdylitis is really bad I have to take Etoricoxib - but if I take this my Crohns Flares. So, I have to weigh up which will be worse.

Do my doctors get along?:
Mostly, my rheumy gets along with the gastro Doctor (I suppose they have to if they are sharing a clinic together). Nobody likes my spinal surgeon (long story). My physiotherapists get along with everyone too!! I see an endocrinologist once a year, and he's useless - my rheumatologist could ring, write, and email and she never gets any response. I've been told my hormones are out of balance (PCOS), and he's pretty much the only one who can sort it out, yet he says I only need to see him once a year because I'm fine ("fine" with my bone density score of nearly -4).

Sorry... I went on a bit of a rant!! I think this thread is a great idea, there seems to be plenty of us with more than one problem :)
 
Saw my nephrologist today. My kidneys are behaving and the cyclosporine is keeping the nephrotic syndrome under control. He asked how I was and I said fine except for wasting my time breathing. He checked my chest heart and lungs. He was taken aback when I said my neuropathy and oedema were both out of control. He checked my legs. the oedema is almost past the knees. his other checks revealed fluid in my lower lungs. He is suspecting pulmonary oedema and congestive heart failure. He also said that he can hear a murmur in my heart that is consistent with a leaky valve. I have to double my daily lasik dose whilst cutting my fluid intake to one litre a day. he wants me to shed at least two kilos of fluid and then see if It helps me sleep at night.Ron.
 

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