I haven’t posted an update in a while and thought I would share how I’ve been doing. I still do not have a diagnosis and it has been a huge struggle trying to get one. I have been trying to seek out alternative therapies for the colonoscopy. When I started the prep it did not go well (that can be expected on some levels) but it left me extra weak, nauseous, and downright sick so had to stop half way through.
My GI doctor suspected that I may have SIBO (small intestinal bacterial overgrowth), among a few other guesses such as diverticulitis, malabsorption, and slow bowel motility. Maybe even Crohns or IBS. IBS seems extremely likely but am not sure yet. It has been a pain trying to get the hydrogen breath test needed through insurance to see if I do have SIBO. I think this test can also diagnose h pylori and carbohydrate malabsorption. I will have to pay for this test out of pocket which I am totally willing to do. You can’t really put a price on health right? I have an appointment next week to discuss this test among a few other things.
The good news is I was able to get 4-5 lbs since I last updated. I did have a flare or episode last Saturday (still going through it but it’s tapering off, hopefully!) that prevented me from hardly eating once again and kept me in the bathroom a good portion of the time but am happy about the weight gain. I am hoping to be able to keep this up and not drop back down again.
I still struggle most days either with eating or bathroom problems. When I have these flares it also sends my anxiety into a frenzy as well, so that is no fun. If anyone has read my anxiety posts then you will know what I mean!
I am remaining optimistic that this will all get sorted out soon. I’ve heard there are a couple alternatives to colonscopy as I mentioned earlier so I will find out about those and update again when I have some new progress/news about this.
Thank you again to everyone who has sent me well wishes and sweet messages over the past few months. They all mean a lot to me!❤
In one week I have to go for the colonoscopy/endoscopy. I have to admit I’m quite nervous about it. I’ve had an endoscopy done before, yes, but that was a huge deal for me and and prayed and prayed and prayed some more that it would all turn out okay. It did, I’m thankful for that but the thought of being put under once again scares me every time! I’m also a bit afraid of waking up during the procdure and feeling the pain. I’ve heard a few people’s experiences turn out that way. This is all just my anxiety talking I’m sure. I’m trying to stay positive about this but I’ve still been having those “what ifs”.
Regardless I still have every intention of getting all these tests done and taken care of so I have some answers and can start to feel alive again. I’ve been spending a lot of time at home mostly in bed. I do still attempt yoga (on my better days) and I meditate/pray everyday.
In the meantime I will try to keep eating (very difficult to do still, if I’m getting 1200 calories I’m doing well) and most importantly try to stay calm. I’ve been mostly sticking to homemade chicken soup, crackers, toast, and avocados/bananas. Occasionally i am able to stomach a few Applegate nuggets and Amys rice Mac and cheese. Not the healthiest diet but I’ve come to learn that these things upset my stomach the least and is better than nothing! I am still on a multi vitamin and try to drink lots water. I’ve attempted both boost and ensure drinks to try to get those extra calories/vitamins, but they both upset my stomach too badly. I’m doing what I can though to survive.
I know I have really been MIA lately and I promise I will update after I have all of this taken care of. I miss all of you and can’t thank you enough for the concern, sweet messages, and well wishes. It’s means so much to me through this tough time in my life. I will try to be on more often and I will be replying to the messages I’ve received. ❤
Today I finally had my appointment with the new doctor. I feel confident that we will finally figure out what has been going on. He and his staff was really nice. They were aware of my anxiety issues a head of time and called me back right away to a private room where I could fill out papers. I did panic a little bit but overcame that pretty fast and did well at my appointment.
I had a bit of a wait before he came in. After about 30 minutes or so he came in and was very nice. He asked me a lot of questions and was really thorough. I had a rectal exam done (gross I know but had to be done)and he found no blood in the stool but did say I was very stopped up and said he thought I had slow motility and possibly an absorption issue as I have lost so much weight and am deficient in various vitamins/minerals.
I have been scheduled to have numerous tests done. The first is a pulmonary test because he noticed my nails are very curved and that is a sign of possible lung/cardiac problems. It can also be a sign (in 5% of people) that its gastrointestinal or hyperthyroidism (in 1% of people). That being said I am also getting a chest x-ray and abdominal x-ray. Next he wants to get labs retested a week before my scheduled endoscopy and colonoscopy.
I have to start an enema along with Dulcolax and Miralax this weekend and I will have to do it again before the colonscopy as well. I’m not scheduled to have the latter done until a month from now but I hope to finally have some answers. He did mention that he didn’t think celiac disease was my problem and encouraged me to not eat gluten-free anymore. I will probably stick to it though because I’m used to being without it now.
I will post more updates after I have all of these tests done. I really feared going today but am glad I made the right decision.
I have been feeling very run down the past few weeks. I get to see the new specialist on the 9th and I’m hoping to God that they can help figure out what has been going on. Everyday is a struggle and I can tell my body is paying the price for it. I’ve lost so much weight, look pale, and hardly ever eat.
I spoke to my doctor today and basically demanded that I needed to know what my consistent lab results mean. They have been consistent for the past year (maybe even longer). I didn’t want to hear that they all looked okay because I know that is simply not true. He told me the mixes of highs and lows meant that I was malnourished and may have a malabsorption problem. He thinks my body is not absorbing all of the vitamins and nutrients my body needs from food/supplements. He also thinks my motility may be slowed down. He is also wanting me to retest again for celiac disease. I have been tested for this twice in the past but it was negative. I am more scared of it being IBD or something worse (I had an online doctor tell me my labs pointed to cancer).
I have been taking a multi-vitamin (and a few other vitamins on and off as needed) for years and it is not making a difference with my labs. I really need to get to the bottom of this. I feel as if I am running on empty and struggle to go on most days. Not to mention it is emotionally draining.
The past few days I have been feeling a strange “cold water/burning” feeling on my left leg (thigh) and I could not fall asleep the past 2 nights because of it. I read somewhere that this can be a sign of deficiency as well but it of course could be a lot of other things too.
I will update next week sometime after my doctors visit and will try to remain positive. I just hope I am really close to being diagnosed so I can treat this and start to feel better.
Hi all. Sorry I’ve been away for a while once again. I have not been feeling well at all lately. My stomach has been acting up a lot and I have been having tremendous issues going on with this. It seems to constantly hurt. I always feel bloated and nauseous. Literally ALWAYS. I’ve lost so much weight, honestly guys I weigh about 85 lbs now. That is how bad it has gotten. Usually I am unable to eat because of it either hurting or me feeling as if I’m going to throw up. I am extremely upset and depressed about what is happening. To tell you the truth, I really don’t know what is going on.
Last week I had stomach flu that I caught from my daughter and I lost two pounds just from that that I was unable to gain back. I’ve really been trying to just eat and try not to let it bother me but it’s a huge struggle. I’ve tried cutting out gluten and dairy (with the exception of yogurt). It seems to make no difference. Everything I eat causes my stomach to get upset. This means I don’t have any “trigger” foods, even just water will do it sometimes.
I went to the hospital to try to get some kind of help because when I was feeling my worst it was on a Saturday morning. I paged my DR and he told me to go to the ER. Well, that was a waste of time. They basically said they wouldn’t be able to help me in any way unless I was pretty much dying. He said they are there for emergencies and what I have going on isn’t one apparently.
They gave me labs and said everything was alright. Naturally, I didn’t believe them so I asked for copies and of course there were a lot of things in mostly low ranges and a few things were in high ranges. I’m beyond frustrated and so sick and tired of being sick and tired. All I want to do is be able to EAT!
Sometimes I think the hospital DR’s think I am anorexic or something (based on my current weight and not eating much) but I swear I’m not. I love food and want to eat more than anything!! I do feel sometimes I have to avoid food to keep from getting sick or having a terrible stomachache.
I really hate that I only come here now to write usually about something bad or negative going on. I don’t mean to sound like I’m always complaining, I just really need to vent and want to keep everyone updated with my goals. I miss being able to provide you guys with more positive entries.
So, there is one last DR left in my area I can see for these issues I have been having. I’m going to call him in a few hours and explain my situation and what has been going on. This guy is seriously my last hope. I am no longer going to Mayo Clinic because the referral did not go through. I really just want to be able to feel better more than anything.
I saw my new GI doctor today. I brought in all lab results, x-rays/results from procedures, and list of symptoms. He said there isn’t a thing he could do for me. He said I’ve had the “million dollar work-up” and if anything is truly wrong it is something off the radar or rare. Since I am so young, feel so unwell and have lost so much weight; he is referring me to the Mayo Clinic in Scottsdale.
I am so very upset and my anxiety is literally through the roof today. I had a full blown attack in his office and just didn’t want to hear the things I was hearing. I was crying, shaking, fast HR, nauseous, & felt like I was going to pass out. I have seen every specialist and have gotten almost every test we can all think of to no avail.
I truly feel something is wrong with my body. I feel it on a daily basis that something is just not right. I have pain in my upper stomach on a daily basis and have had two ultrasounds that show nothing in this area. Since my anxiety is so bad again from all of this, and the depression from all this has been eating me alive – I decided to make another appointment tomorrow to talk to somebody about all of this. I really need it.
I know I have anxiety and depression – that is a no brainer. But it has been significantly worse while trying to get a proper diagnosis for other health problems. I can feel that something is just not right. I have a had a few tests come back positive or in high or low ranges but nothing that is serious to them or would cause me to feel so terribly.
So, tonight I am filling out papers for Mayo Clinic and making another appointment with my GP to gather more notes for this. Mayo Clinic is my last ultimate hope for a diagnosis and I hope I can finally get one.
I need to make an appointment to see the GI doctor. My stomach has been acting up again. I’ve lost 18 lbs unintentionally due to not eating as often or as much as I should. I’m very underweight. The thought of me being so underweight is wreaking havok on me emotionally. My upper stomach is in constant pain with lots of pressure. I’ve had this problem in the past due to my hiatal hernia but I think something else might be up since I’ve never lost this much weight or had pain this intense. I have quite a few other nasty symptoms that I won’t go into detail with. I also haven’t had relief with any medications or home remedies. sigh I just want these health issues to be over with..
I got my test results back from the iron test I had done a couple weeks ago. It’s no wonder I’ve been feeling so bad lately! My iron level was 17 and my ferritin is 3! My TBIC is 345 which is a high reading though. He is sending me iron supplements and also told me of another to get at Walgreens that is coated with Vitamin C to help better absorb it.
I will start taking these and will hopefully begin to feel a bit better soon. It’s been so bad lately that I barely leave home anymore. They believe it’s from poor nutrition since I haven’t had much of an appetite lately. We are still unsure if this is the cause or not. My main concern is finding out the cause.
On another note- the event monitor is off for now. It started to leave blisters so I had to take it off. They said it was fine that I do this, although I would like to leave it on – I simply can’t.
I’ll post another update in a week or so to document how well the iron supplements are working.
I have been wearing my event monitor for one week today. I am starting to get used to it, although I do forget sometimes that I am hooked up to it and drop it! I have three more weeks to go before I can remove it. I’ve had to push the “record” button on it about 3-4 times since I’ve been hooked up to it. This alerts them when I am having an “episode” or symptoms rather, the company then calls me to check on me.
I am due for my Echocardiogram on Friday at 3pm. I am hoping to have some answers soon about my heart and why I am having the symptoms I have.
I also have an appointment with a doctor on September 27th for my disability case.
I’ve had to cancel my counseling appointments the past few weeks due to my daughter having an upper respiratory infection and I myself caught it the week after. It’s been hectic.
I will update more on all of this soon. Thank you to everyone who has messaged me over the past couple of weeks. I can’t thank you all enough for the support and concern.
They gave me another EKG which they said was fine this time. They also ordered an echocardiogram and hooked me up to a holter monitor for 30 days. I also have a heart murmur which they have told me in the past. I’m still very nervous about everything that’s been going on and happening. It’s been very stressful but I think a lot of it has to do with my anxiety issues. I even had a panic/anxiety attack in the waiting room of the cardiologist. I hope some of these tests will tell me for sure what’s been going on if anything at all. I really feel something else is wrong and it’s not completely anxiety. I will update about this in a month or so and let everyone know how it goes.