Lost 30lbs in two months

[forum contributor]

:angry-banghead: <~That's how I feel today.

I'll try to keep this as short as possible. Here's a quick background on me:

Got sick when I was 10 with H. Pylori and have had stomach problems ever since. No one could figure out what was wrong with me until I turned 27 (28 now). I have since been tested again and cleared for H. Pylori.

Last June, my husband, Josh, and I went on a cruise for our anniversary. On the 2nd day, I got sick (constant diarrhea <some bloody>, nausea, and then in about 2 months, a 30-pound weight loss <huge loss - I'm only 5ft tall>).

In August, 2 months after I got sick, I was diagnosed with UC. Everything's in my colon/rectum. Fine - diagnose me, treat me, and then I can go into remission. Not quite. I haven't been in remission yet. Hell, I've barely had any relief yet!!!!!!!!!!!!

I had a(nother) colonoscopy 3 weeks ago and went to my GI/PCP today for the results. The appt I thought would answer questions only frustrated and confused me even more. Now no one knows what I have. This c-oscopy showed a pattern of inflammation that looks like Crohn's, but no signs of granulomas.

I'm so confused... and angry... and depressed...

Does anyone have any ideas? Thoughts? I'll take anything at this point.

 

[D Bergy]

I would guess you still have an H-Pylori infection. While I was having my initial Crohn's symptoms I acquired an H-Pylori infection in my stomach. I did not know what it was at the time, but my stomach lining was inflamed as the endoscopy confirmed. I had three H-Pylori tests and the last one was a biopsy. All came back negative.

I had to get some relief as this stomach inflammation was worse than my yet undiagnosed Crohn's symptoms. Finally I decided they were wrong, as there were not that many bacteria that can cause stomach inflammation. I treated myself using an alternative treatment that I knew was likely to work, and I never had that problem again.

I believe my use of antacids trying to relieve my Crohn's symptoms allowed the bacteria to move into my stomach. The H-Pylori bacteria in my intestinal tract may be connected to Crohn's although I think it is a co-infection and not the main cause.

The tests they use for detecting H-Pylori are apparently not sensitive enough to detect low levels of infection. You may still have it although you test negative.

Dan

 

[forum contributor]

I'm so frustrated.... beyond frustrated at this point. Hopeless? IDK...

 

[Jerman]

Try to hang in Santos, I am in a similar situation as nothing "of concern" has shown up on any of the tests. after my appt the other day, i was prescribed bentyl 30mg 3times per day. Well it settled the spasms but now I am living in the bathroom again and my legs are rubbery. So ...WTF?, is definately how i feel lately too. I suppose i may a bit stuck in the "anger" stage of dealing with this crapshoot (couldnt help myself).

I have had trouble lately with isolating myself, even from the family because i feel so lousy and dont want them to see me in pain. The one thing I have going for me is that my wife and i are very supportive of each other. We talk about everything and it helps us to regroup. sometimes even a 5minute break where you can just be with each other and say nothing at all does the trick.

Take good care.

 

[forum contributor]

Thanks, Jerman.
Luckily, my husband is also very understanding and supportive. It really, really helps.
What is bugging the crap out of me (ha!) is my MOM. Mind you, I'm 28. I'm married. Myhusband and I have our own home. No children. She will not stop saying "go into Boston and have a full work-up done." I'm gonna lose it.

 

[forum contributor]

Thanks, Kim :smile:

I actually just ranted about her on Anything Goes :lol:

Those people truly are ignorant about the immunity boosters. Don't you love how everyone has "the" answer??

 

[Jerman]

Santos,

I know it gets annoying having everyone tell you what to do but...... the Hospitals in Boston have people come from all over the world for medical care. I had seen 3 doctors at appointments and four different docs at the two different hospitals i went to. I was told that I didn't have "enough evidence of symptoms" to warrant my pain level, called med seeking, and even told that maybe my joint pain was due to my depression.

There are certainly wonderful doctors in everytown usa but the ones up there have seen many difficult cases and are hopefully more likely to catch a complex issue. I actually have an appointment coming up with a specialist, If you are interested I will let you know if it was worth the drive up. Try to keep your chin up, Hope you feel better.

 

[drew_wymore]

Hey Santos,
I know how you feel. My parents were always like "just make them hospitalize you until they figure it out" .. uh yeah how are they going to go about doing that, insurance won't pay for that. No yogurt isn't the answer, no eating cheetos isn't the problem. Yes I've been tested for sprue.

I finally submitted and understood that as parents they simply can't bear to see their child sick (I'm 30 and my mom insists on going to my appts with me) and they feel helpless because they can't fix it for you like a skinned knee or kiss it to make it feel better.

I'm like you though. Test after test after test after test without a concrete answer and the various docs wabbling back and forth. Crohns? Not Crohns? Gastroparesis? Not Gastroparesis?

I finally got a referral to a Uni hospital and they've been working on me since last August and only yesterday does it appear I got a concrete answer and it isn't Crohns even though I showed all the symptoms of a Crohnie.

I know the feeling of wanting to just give up far too well. At times last summer I really did seem to give up. I simply stopped eating and slept all the time because those were the only times when I wasn't in pain. But giving up won't resolve anything. You have to keep reminding yourself that you don't need and deserve to live in pain all the time.

Summon all the energy you can, and some days it's tough enough to simply get out of bed, I know, and keep fighting and searching. Find new doctors if you need to, get a 2nd, 3rd, 4th opinion if necessary. Repeat the tests as many times as you have to even though they suck. Take time to research all your symptoms using Google or Yahoo (this is how I found the test I asked for which has now given me my answer).

Keep posting here as much as you need to, we're all here to listen and we've all been in your position and have felt like you have. You are not alone and we might be streams of texts but behind that, we are people who care about you.

So keep your chin up and keep fighting, knowing that at some point you'll get the proper diagnosis and treatment and all the anger, frustration, hatred, depression and everything else will have been worth it.

 

[forum contributor]

Thanks, Drew.
My mom had (has?) that "make them hospitalize you until they figure it out" thing going for a long time, too. Gastroparesis too, huh? They didn't know if I had that, but my old doctors guessed I did from December 2006 to April 2007. Did they bother to find out? Nooo.... they called me the $10,000 patient (I guess in regards to how much testing I had done... but was it coming out of their pockets?!)
I could understand if my mom seemed like she cared instead of acting annoyed at me when I "look" sick, almost insisting on going to my appts with me (I don't let her), and demanding I go into Boston (it's like shut up already). But no, she doesn't act like she actually CARES. She seems irritated when I don't feel good. She wants to be in constant control.
I hope this is worth it someday. I thought I had an answer and was working toward remission. Now I have nothing to hold on to, nevermind look forward to.
I'm happy I can talk to you guys about this. I'm not happy you guys are all sick, but it's just nice to not feel alone.

 

[xX_LittleMissValentine_Xx]

As far as I know, they didnt find any granulomas when i had my colonoscopy, just inflamation. But I still got the diagnosis because there was clearly something wrong because of my other symptoms. I think he had already decided it was crohn's and the colonoscopy told him he just hadnt found where it was yet. So i guess the inflamation was enough to give me the diagnosis. Then I started pred and an improvement was seen so that must have concluded it.
Hang in there, maybe try another doctor?
Dont take no for an answer!
xXxXx

 

[forum contributor]

Do you have to have granulomas to have Crohn's?
I still don't know what I have... and I'm very confused

 

[neverwouldhaveguessed]

just out of curiousity what is a granuloma?

 

[forum contributor]

Hey NWHG, I asked the same thing in a different post the other day. This is what I found:

A granuloma is a small area of inflammation in tissue due to injury, such as from an infection. Granulomas most often occur in the lungs but can occur in other parts of the body as well. They typically cause no signs or symptoms and are found incidentally on a chest X-ray done for some other reason. Although granulomas are noncancerous (benign), they may resemble cancer on an X-ray.

The most common cause of granuloma is histoplasmosis, a fungal infection that primarily affects the lungs. Most people with pulmonary histoplasmosis never suspect that they have the disease. Granulomas due to histoplasmosis are usually visible on X-rays because they become calcified and have the same density as bone.

A doctor may make a diagnosis of granuloma by a chest X-ray or computerized tomography (CT) scan. The images of affected tissue usually show scarring and calcification characteristic of a granuloma.

 

[cheeky]

well i'm sorry you're experiencing so much frustration.

i am new to all of this, and i'm not super informed, but i heard that there is 'indeterminate colitis' don't know much about it, but maybe you are one of these cases?

i agree that you should try getting a second or third opinion, whatever it takes.

good luck to you, and hang in there... hopefully you'll get some answers and relief soon.

take care

 

[forum contributor]

Thanks, Cheeky :redface: