Hello, I'm new! Need lots of help.

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New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/26/2010 12:06 PM (GMT -6)   
Hello, This is my first time on or involved in any support group. You would think that I would have reached out by now since I was diagnosed in 1999. I was 21 and I think I didn't want to accept it. Never had surgery, thank God. Had about two years where I didn't have a solid stool. This caused hemmroids. about three years ago I developed a fistula in my vaginal rectal wall. I am so tired of the doctors. So tired I can't even write about all the round about treatment. It took them about a year of going through every test to prove there was a hole when I was telling them from the beginning that I am absolutly sure Its there. There is no mistake when you find stool where it does not belong. Well over this time It continued to develope and made its way into the Bartholin gland. This is painful and swells. They are telling me that surgery is not a good idea for this area and the only other thing they want to try is remicade which I've told them I have tried. So sick of doctors not working WITH me. They never listen to me as the person who might have informative information being that I AM the person living with this. I was told one visit, basically bullied, that remicade has closed vaginal rectal fistulas and then I went in yesterday and they were telling me they haven't heard of any cases. I have no insurance, so I go to a hospital that is on a rating scale. I have applied for disability because If I poop I swell and can't move much. This sucks. Disability is saying crohn's is a managable disease with meds and that I'm not sick enough to recieve it. Come to find out they never even recieved any records from my doctors and if they do this time I'm afraid they will get incomplete records. This new doctor I've seen twice and he has still yet to examin me and see what I am talking about. I am taking Azathiroprine and 2 antibiotics and trying to eat healthy take vitamins, flax oil, aloe vera juice, probiotics. I'm concerned that all these things I'm doing to boost my health which involves my immune system is being counter attacked by the other meds which are suppose to lower my white blood cell count. I ask questions to doctors and they seem to not know the answers and avoid the question. One time I was seeing The top doctor in the top clinic in the nation and I asked him " do you think If the acticity level in your stomach is off and can't break the food down proper that it might cause your intestines more stress to do its job?" His response was "I don't know anything about the stomach." But Isn't your job specializing in the digestive system? doctor- I just study the disease, you need to take this medicine. AHHHHHHHH. I just want someone who has studied the body to say mmmm, lets think about somethings for a second instead of functioning on liabilities and their perscription pad. Well, hello everyone(lol) after all my ranting now you know a bit about what's up here. Anyone have any info that might help? Any cases similar?

Veteran Member

Date Joined Jan 2010
Total Posts : 8410
   Posted 2/26/2010 3:44 PM (GMT -6)   
Hello. I'm fairly new here, and was diagnosed in the same year that you were. No solid stools for 11 years, and only one case of piles which went away with diligent application of Anusol <_<.

But seriously, the first question which sprang to mind was why wouldn't you try Remicade again? What are you hoping that the doctors will offer you that they haven't been offering you before? (Apart from an attitude adjustment.) Another type of drug? Surgery? If it's a money thing, then do excuse me. I feel for those who have to battle with their insurance, or lack of it, as well as their disease.

As for disability, I'm even more useless with giving advice there than on other stuff. But if you go to page 2 of this forum, there is a thread there about CD and state disability which will hopefully provide some useful advice on how to claim. The only general tip I can give is that if you suffer from depression include it. Get a doctor's note for it. In the UK at least, it would appear that mental disorders have a far stronger weighting than Crohn's.

In the meantime, maybe somebody with fistulas (I don't get them) can help you more. Good luck!

PS: I wouldn't worry too much about your immune system. Unless you're on a very high dose of azathioprine, it's probably okay. It's not like HIV, which wipes out your immune system and leaves you with nothing left whatsoever to fight opportunistic infections. You still have a functioning, if somewhat modulated, immune system. And indeed, those on immunesuppressants don't appear to catch colds or pick up minor infections any more often than the average person.

New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/26/2010 8:39 PM (GMT -6)   
I'm sorry I'm not sure if you were saying I need an ajustment or them. I was told one visit that Remicade has been successful with vaginal rectal fistulas and then the next that there hasn't been any cases that they know of. I just want strait informed information and confidence in my doctors before I jump into any treatment. I'm really quite surprised to recieve such a message of encouragement.

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 2/27/2010 1:46 AM (GMT -6)   
scoolI don't have fistulas (or female anatomy come to think of it) blushso I can't comment on them. I certainly understand being frustrated with doctors and disability plans, and feel sorry that your not getting the help you need. I am on remicade and have been for just under 3 years and my life was hell without it. I've fortunately never had a reaction to it but do understand some peoples reluctance to use it. Basically I think it comes down to how good/bad is your quality of life? If you can handle things the way they are then do so. If you can't you have a tough choice to make. Rob

Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Post Edited (Grandpato2) : 2/26/2010 11:49:18 PM (GMT-7)

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