Severe gastrointestinal issues- searching for answers

Hi, again! I'm officially that weirdo that hops around on all forums. Sorry to bother you guys, but I'm hoping that someone can help me figure something out. I'd really appreciate it!

I'm DX with Fibromyalgia but it's thought that I have an undiagnosed autoimmune disease on top of it. I suffer with a wide variety of severe symptoms (all over the body), and most frustratingly, they seem to resemble a few DIFFERENT autoimmune diseases (I know they tend to overlap). I have arthritic issues that resemble RA, neurological problems that resemble MS, severe gastrointestinal issues that are DX as IBS but I sometimes wonder if it's something else, etc.

I don't have insurance, and I drive myself crazy trying to get some answers as to why I am so sickly. I know you are not doctors nor do I expect you to be- I don't want to be that annoying person who asks "do I have this?" blah blah blah. But I may very well have an autoimmune disease- and I wonder with all of my gastrointestinal problems, whether it could be UC.

Of course, what I'm going to say here is probably going to sound gross (I'm sure you guys are used to that talk though)...!

Over the yrs, I have had constipation (it is worse for certain periods) and it hurts a lot to have a bowel movement. I strain a lot. I am DX with IBS. (And then other times, the BM is so loose, I have to run to the bathroom).

I also bleed moderately heavily when I have a BM. It is all in the toilet, on the toilet paper, as well as in my stool. It has been happening for a long time now and I was never able to get a colonoscopy (lost insurance).

On top of that, I get a lot of weird pus stuff come out, and it sometimes leaks into my pants.

I have taken some stool softeners and stuff for the "IBS" to see if it helps with the straining and bleeding. And although it makes me go (sometimes it takes days afterwards & sometimes causes diarrhea then), I still bleed at times regardless.

I feel SO fatigued after I go to the bathroom like that. It takes a lot of energy out of me. I think over time since this has not been resolved, I have maybe become anemic now too. My weakness and fatigue have reached whole new levels.

Do these issues sound like anything relevant to you guys? To UC? I know that my grandparents have UC. But I am only 26! Any young people with this disease?

Can UC cause severe joint/ body pain? Do any of you guys experience pain? My pain level has reached epic proportions! Debilitating!

My GERD has also intensified severely, sometimes burning all day long with nothing helping it. I wake up crying sometimes (almost feels like an ulcer). Just LOTS of stomach and bowel issues.

Help?

Thank you!

Eden

Actually sounds like it could be UC; with your family history it's even more likely. But to know for sure you need tests: diagnosis from symptoms alone is impossible.

As far as age is concerned, UC is most commonly a young adult's disease. Same for Crohn's.

Try to get insurance again, then some tests.

Yes UC can cause constipation and/or diarrhea. I would get on this immediately. Its not good to have been having bleeding for a few years with that said I myself held off going to a GI for almost a year.

Make the time to go sign up for insurance and start looking around for a GI because it can take awhile to get in to see one. You need a colonoscopy ASAP.

Thanks, ladies!!!

Do you/ have you ever suffered with severe headaches? I don't know if it has to do with my digestion issues or fibro or neck problems, whatever! But just wondering if you've had them.

Also, I have had persistent acne problems for yeeeears. Nothing I have done has helped, including changing of diet, etc. I wonder if my acne is caused from the digestive issues? Anyone relate? Maybe I could start a new thread about it.

Nice Cup,

It isn't just that I don't have a lot of spare time... really, I just have lost all faith in PA itself. I have been stigmatized, turned away, treated so badly throughout the years here. And I live in such a small area, there aren't many options for great clinics, etc. I just deal with a whole lot of BS and frustration!

I may be seeing a chiropractor soon- only because he is very inexpensive and affordable- for problems obviously unrelated to this (severe ongoing neck/ head/ back pain and severe stiffness). Perhaps I can even ask him for advice about what to do, tell him I have unrelated severe gastrointestinal issues that seem to only worsen, and that I need care promptly. Ask him what could be done about seeing someone inexpensively/ or about insurance.

Either way, I'm going to try to make an appt this week to actually SIT DOWN with someone to help fill things out for insurance- that is what they did yrs ago to help me sign up- at the lovely welfare office. (yes, I had state insurance, and they freaking took it away- a long story). But if they helped me sign up back then, they can help me again!

Thanks again for the replies. You're wonderful!

Eden

Do you/ have you ever suffered with severe headaches? I don't know if it has to do with my digestion issues or fibro or neck problems, whatever! But just wondering if you've had them.

I have suffered from headaches and a sore neck, yeah. The headaches took the form of a pulsating pain behind one or both eyes, and a sensitivity to light. They tended to come in clusters, and then disappear for weeks or months at a time, but I did notice they often started playing up with my Crohn's got worse. I can't remember exactly when these headaches started, but I think it was after I was diagnosed with Crohn's.

No acne problems, though, not even on steroids.

It isn't just that I don't have a lot of spare time... really, I just have lost all faith in PA itself. I have been stigmatized, turned away, treated so badly throughout the years here. And I live in such a small area, there aren't many options for great clinics, etc. I just deal with a whole lot of BS and frustration!

I'm sorry; that sounds appalling :-/

It might be worth making a new topic about how you go about getting acceptable treatment when you don't have any insurance. I'm from the UK, and don't know what to suggest.

Well, it certainly won't hurt to discuss the gastro issues with the chiropractor for the time being, while I'm working on getting Obamacare.

Embersglow, you're totally right...who knows if they can help with stomach problems, but it's worth a shot telling him about it. Also, I'm going for my neck and headache issues anyway. At this point, I'm so fed up with the neck and head pain that I cry almost every day (which I know doesn't help with the pain and tension-- but it's all so overwhelming)!!!!

I don't know if the neck and head issues are from the fibro, but yes, it very well could be. But I notice most of my pain seems to come from the bones/ spine-- NOT the muscles necessarily. I've been in a lot of car accidents too, so it is quite possible that my neck has been screwed up all this time because of one of those!! But I bet you the tension from the fibro does NOT help it.

I shouldn't have said that I "know" I don't have Crohn's... obviously I don't KNOW what I have... I guess I just thought that Crohn's was characterized by a lot of diarrhea, which I don't get often at all (I have severe constipation issues). BUT I have read that it really depends on which part of the gastrointestinal tract is affected, which makes sense. I could have either, I could have neither. Who knows!

But my pain is getting worse, I know that!

NiceCup,
interesting about your experiences with headaches! Thanks for the reply!

Thanks to everyone!

Coffeencake, yes, ibuprofen can be terrible! I stay away from it. I try to stay away from all medications, although my bf has recently bought me zantac for the constant heartburn... it works a little better than everything else I've tried OTC... but it does not work enough. Nothing gets rid of the burning!

I do have a long history of psychiatric illness and hospital stays, so trust me, I have been on my share of meds in the past. But I think they always made my physical problems worse!

Eden

Coffee,

I actually was seeing a massage therapist for a few months here and there. But it's too expensive for me anymore. I would pay $70 + tip every time, which is way too much money added up when I'm not working. Oddly, I know massage is great for everyone (especially those of us with circulation problems) BUT I couldn't feel too much of an improvement afterwards. I would feel great for about 20 minutes after and then all of the tension and pain would come back full force no matter how much I tried to relax. It sucks though because I thoroughly enjoy the process of getting massaged (who doesn't!?) but it is too expensive for me.

I also realized (IF I am understanding it well enough) that I cannot even afford Obamacare! I am all signed up, everything good to go, but I did not commit to a plan because I won't be able to afford it every month. I'm unable to hold down a job and have no steady income. From what I'm understanding, I would still have to pay about $200 a month for it, then I get reimbursed at the end of the yr? But I don't have the money to shovel out every month. I don't know how it still works with the welfare office, but I'm just going to sit down with those idiots (never good experiences there) and have them fill me out for Medicaid or other state assistance again because that was completely free for me back when I was on it. (The Obamacare site said that they were contacting Medicaid for me since I am chronically-ill, and I never received anything about it after that). I'll try to take care of it myself.

The chiro was OK, but the manipulation did not relieve my head/ neck pain and pressure for too long. It always comes back! He said I have a lot of vertebrae severely misaligned though, which he will try to help relieve some of the pain from within a few sessions (he does not make patients keep coming back to him)... but he said I have other issues that he can't necessarily address. He believes I have an autoimmune disease, judging from my wide range of symptoms, along with a leaky gut (which he said for me to fix, and many, if not all of my issues will most likely fade away within 6 months after healing). Hmmm

Eden

That's exactly what I mean! How does welfare work now with Obamacare in effect?

I'm going to try to call the office tomorrow and make an appt. to sit down with someone. Things are getting really bad for me, and I need help.

And I feel pathetic that I have so much trouble working. I had to leave my retail job back in Oct. because I couldn't perform the labor anymore (I would leave everyday crying my eyes out because the pain was so bad), and they would not work with me to get me a less physical position there. So I left. That's not worth it for minimum wage.

Then I was training with Brown Daub a month ago (they train you before officially hiring you), things looked hopeful (it would have been a nice desk job)... and then from being in a new environment around new people and new germs, I got severely sick (it happens every time). Some people had colds there and still came to work, and when people around me have colds, I get sick very easily, and it turned into walking pneumonia. I got so sick, they told me to not come back anymore!

It's a pattern though... this always happens. I always get sicker, and get fired, or I cannot physically go on any longer.. And I'm forced to leave for the sake of my health & sanity!

Being poor and being sick SUCKS!

OK *Rant over* Sorry!

How are you tonight, coffeencake?

Eden