No answers for all this pain...so skinny and weak

[georgiabird]

Hi everyone, I'm new here and need to tell my story to someone.

Right now, the doctors don't know what's wrong with me. In the past 18 months, I've had 2 colonoscopies, 1 sigmoidoscopy, been admitted to the hospital 4 times, been to the ER 6 times, had 2 upper endoscopies, and seen 4 different gastros.

I'm currently in what I call a "flare"...although technically, I haven't been dx. with Crohn's or UC.

My symptoms are: chronic diarrhea (4-20+ times a day), extreme weight loss, dehydration, gas, bloating, chronic stomach cramps, rectal abscess, extreme urgency, hemorroids, ulcers, and incontinence.

Because of the illness, I weigh less than 110 pounds (I'm 5'8"). I was put on Lialda, but I stopped taking it b/c it wasn't helping. I have also been on prednisone (pill and IV). Right now, I'm taking lomotil (Rx for diarrhea) and I'm trying to change my diet too.

The doctors tested my blood and said I'm negative for an IBD. They all agree that I have colitis, but they don't know why my symptoms are so out of proportion to the amount of inflammation. The most recent GI told me that he wasn't willing to rule out Crohn's just yet...so it's wait and see for now. All I know is that I am sick and need some help.

Thanks for letting me vent. Everyone have a good day!

 

[Crohn's 35]

:welcome: to the forum, you have come to the right place and there are many who are on here with no diagnosis and have the same problem as you.

Your story was exactly like mine, and test would NOT so no markers for crohns... this went on for a year, and finally sent to a teaching Gi and he knew right away by an endoscopy follow through to the bowels, and boom they found it. Being on Prednisone can mask the problems whilst being tested. I have had crohns and still my stools wont show I have crohns...

I am so sorry you are struggling and I know your pain, but you can't give up. You need to see a Gi who specializes in crohns. Most times you can also tell by the smelly bm, smells like a vinnigar mixer and vulgar.

You cannot stay on Pred forever, it has so many nasty side effects and imodium isnt good either. I never had incontingence but you have all the makings of an IBD disease. Hope you find someone to help you. A low residue diet can help. Resting your bowels can help by just drinking Boost/Ensue at least you are getting nutrition. Sorry I can't help more, but if you do get the proper diagnosis sounds like you need Remicade for the abscesses. Hugs! Glad you are here!

 

[georgiabird]

Thank you for the welcome Pen!

As sad as I am to hear that others have to go through this, it's comforting to know that I'm not alone in this "limbo" period of no answers/conflicting answers.

The most recent GI that I was referred to was a specialist at a research hospital. He was the dept. head and very knowledgable. He is the one who told me that he is not willing to rule out Crohn's yet. Unfortunately, he told me on my last visit that he is going to another hospital out of state, and he has passed my case on to a colleague. I meet her next week.

I am just so tired of hurting and the fatigue. I also have epilepsy and other autoimmune diagnoses as well. I have a five year old little boy, and I want to be the fun mommy...not a mommy tied to the toilet day and night. And yes, my BMs smell horrible...like something died. lol...I laugh to keep from crying.

Again, thank you for responding! Have a wonderful, blessed day!

 

[Crohn's 35]

I know all about it, when I was at my worst and no dx, I was a single parent with a 4 year old daughter, but she is now my biggest fan and she is doing research in the university and just did a paper and I can't wait to see how she did.

Have a great day and hang in there I know it is hard.

 

[D Bergy]

I am also in a flare that has similar characteristics. I have only had one other flare and is was not nearly as bad as this one.

I have not been able to control it and it progressively got worse. Finally I got a lung infection and then I suspected Mycoplasma Pneumonia. This bacteria is not uncommon but what is uncommon is when it becomes a systematic infection. This can happen when the immune system is weak.

I have taken a course of Xithromax and the antibiotic has brought my pain level back down to something more controllable. All of my symptoms are not gone, but the pain level and inflammation is about 50% better than a week ago.

I do not know if the remaining symptoms are from the Mycoplasma or something else, but I will treat for Mycoplasma myself once the Xithromax is competely out of my system.

Mycoplasma is not something that any doctor will normally test for . The test is a DNA type test and is expensive. The only reason I managed to get the Zithromax was because of the lung infection. I made sure that the antibiotic prescribed would also work for Mycoplasma Pneumonia.

My symptoms that tipped me off were lower back pain which is not a normal kind of back pain. Thick yellow gunk that would occasionally appear from my lung, before I got the bad lung infection. My symptoms started after I had a lung infection. I treated it but not for long enough. Another symptom was the intense pain that was not effectively controlled by Prednosone even when combined with Lialda.

According to my nurse practitioner, it is unusual if you cannot control a typical Crohn's flare with Prednisone.

If you have had a recent bout of Pneumonia, or undiagnosed lung infection, I would be particularly suspicious of Mycoplasma Pneumonia. It may not be Crohn's at all.

One other suspect would be Actinomycosis, but that would be less likely than Mycoplasma.

Good Luck.

Dan

 

[dannysmom]

Hi and welcome. My son is in a similar boat. (He also has epilepsy)
I am glad you have a GI still trying for you.

Dan - Thanks for this post. Danny also has lung problems. He caught a cold this week and is now coughing up blood. (This happened for 6 months last year too)

 

[David]

Based upon your symptoms and lack of response to treatment, the first thing that pops into my head is Mastocytic Enterocolitis which requires a specialized staining of colonoscopy biopsies and most GIs do NOT test for it.

Here is a great research paper on it: http://www.rush.edu/Rush_Document/Mastocytic Enterocolitis,0.pdf

The problem is, to properly test for it, they'd have to do another colonoscopy. However, they could always put you on a couple antihistamines and see if your symptoms are lessened since that is the primary treatment regimen.

If any of this piques your interest, I'd print out the whole paper and take it to your doctor and highlight the key points such as:

Physicians managing patients with chronic intractable
diarrhea are encouraged to incorporate endoscopy,
random colonic or duodenal mucosal sampling, and MCT
immunostaining as part of their investigational protocol,
and if increased mast cells are found, they should consider
therapeutic options that alter mast cell mediator release
and function.

 

[D Bergy]

I just took a flash light and looked in the back of my throat. It felt kind of funky.

My tonsils and the surrounding area is loaded with white spots of infection. I have never seen this before. I must have been loaded with Mycoplasma.

I am not convinced it is all gone yet either. I will start treating it with a natural antibiotic (Nutramedix Cumanda) that is supposed to work for Mycoplasma. I have used it before for Pneumonia and it has worked well.

I hope it will get rid of my remaining symptoms.

If your son is coughing up blood, you had better have a TB test. I would suggest the Mycoplasma test also.

Dan

 

[georgiabird]

Thank you all for your input and feedback. David, I'm going to ask my GI about whether I was tested for M.E. when I go next week. Have a great evening!

 

[David]

Best of luck to you and keep us updated. We're here for you anytime

 

[allieinwonder]

Welcome to the forum! I am so sorry you are going through this.

My story is very similar to yours. I've been sick for 16 months now, and all my tests for IBD have come back normal, leaving doctors very confused as to why I'm sick. I have the same pain and weight loss, with nothing showing up on scopes. It is very frustrating!

We have an undiagnosed club here that you are welcome to come rant in! Its under the support forum. All of us there have experienced the normal test results and trying to deal with this without a diagnosis.

 

[jenny2]

david what kind of meds do they put you on if they find out that you have me? i am very interested in this subject because my symptoms are almost the same as georgia bird. i am going to ask my gastro about this also when i go back to find out about biopsy results. thanks

 

[totie]

I understand your frustration. I started having issues when I lost 30 lbs in like 3 months. I was tested for everything under the sun...The only thing that came up positive was my TB skin test (non active) epstein bar virus (non active), & h pyloria (active). I would get or still do get night sweats, but all this started a couple of months before first anal abscess. ( 3 yrs ago).

Too this day they still can't figure it out. But I think you have more issues than I do. I am still under weight, can't eat dairy, or bread very much, but they say all is fine in the stomach & bowels.

I just keep on pushing myself because after awhile you get tired of, "that's not it". I only go now to the doctor if I am running fever or can't keep food down.

I have had graves/hyper about 18 yrs ago. On regular medication and all is good with the dosage.
I hope you get to the bottom of this...

The only issue is the fistula/abcesses that I am just lucky to get..

Hang in there and continue to ask & seek..

 

[David]

david what kind of meds do they put you on if they find out that you have me? i am very interested in this subject because my symptoms are almost the same as georgia bird. i am going to ask my gastro about this also when i go back to find out about biopsy results. thanks

Antihistamines.

 

[Chase's Mommy]

Well, first off, welcome to the forum!! I've been a member for about a month now and it has been more helpful than any doctor could be. They're paid to help us, not be compassionate. So knowing that there are others out there who know what I'm going through, sympathize and are helpful with medications and pain releif and what not is the best thing ever!! Second, it really does sound like every single one of my symptoms. I have hemerroids, I have setons in for my abscesses, I am extremely excrusiating pains, I have constant diarrhea, bloating, dehydration, I'm anemic and the list goes on and on haha I would ask your dr about getting what is known in lamens terms as a pill cam test. They did all the colonoscopies and GI tests you can think of but what found my Crohn's was that pill cam test and after that is was surgeries and medications and a life long battle to stay healthy. Controlling your diet is the biggest help in it all!! I kept a journal the first year or so of being diagnosed. Every food and drink I had, I wrote down then wrote down how they made my stomach feel. Whether it hurt or didn't bother me or mildly irritated me or whatever. It was a such a big help and a nice reminder of what to stay away from I hope they diagnose you soon bc I remember the long and exhausting wait to find out what was wrong with me and it was awful. Good Luck to you and make sure to keep us all posted!! We love hearing news about everyone's developments!