Please help i need some advice

please help i need some advice

Hi everyone im 19 year old, in february 2011 i started having really bad abdominal pain went to the doctor he send me for endoscopy found nothing,, the pain continued and i started losing weight went from 160 to 135 pounds within weeks, Then went for CT scan they said might be IBD then went for colonoscopy they said ulcers in ileum and told me i have crohns. i started Asacol didnt help then was given pentasa 500mg 3x a day and imuran 50mg 2x a day. Took months to start working but it helped alot from June 2011 - september 2011 i had no or very few symptoms i also gained weight went up to 148lbs. but in October 2011 my symptoms came back to much diarreha to much abdominal pain every other week chills and fever i continue to go to my Gi but he would see me say yea these are crohns symptoms take my blood and then give me the next appointment for next blood test every blood test was a lil worse then the last blood test but my Gi would say its part of crohns also most of the time he wouldnt even see me he would have his assistant see me so in march i got to sick i was down to 115 lbs and was having diarreha even if i only drank gatorade.

So on march 23rd 2012 i went straight to the hospital they did a CT scan and showed to much inflammation in my ileum, also i had infection in stomach they put me on prednisone 100mg, antibiotic through iv for 15 days and fluids the GI i saw in hospital suggested surgery 3-4 centimeter of the ileum because it showed my inflammation was in the same spot as last year, so i asked around for advice and everyone said try other medication 1st because i had no blockage or blood in stool, even the surgeon suggested i try medication like remicade 1st because it has helped many people. So i said no for the surgery so the hospital decided to discharge me because they said i have to follow up with my Gi for Remicade when i left the hospital on april 5th. They put a picc line for Tpn and gave me 40mg prednisone for 15 days and told me continue imuran 50mg 2x a day and pentasa 500mg 3x a day and oral antibiotic for 4 days.

So i went to my GI Dr.LI and he tells me im going to send you to a different GI (the GI i saw in the hospital) because he has more experience and has seen more of my type of cases it sounded like he gave up on me and was tired of me. So i leave from there and find out that the hospital GI went on vacation and is coming back in a week so i waited then when he came back i called for an appointment but he refused to see me (Maybe because he was angry at me that i said no to him for the surgery) and he told me go back to your GI DR.LI and his receptionist refuse to give me a appointment,, then i call DR.LI and he tells me okay i have another GI you can see i got the appointment for this new GI for april 25th which was a long wait when april 25th finally came i went in to the office to see the new GI and they told me he doesnt accept my insurance so i didnt get to see him. i called Dr.LI office and they told me he went on vacation so now i had no GI to go to and i dont even want to go back to DR.LI anymore.

On april 26th i went to the nutritionist they stoped my TPN and removed my picc line becuase i started eating. But now the problem was Prednisone 40MG which had started to help was about to finish so i talked to the doctor who was filling in for Dr.Li over the phone and he said take 20mg for 4 days and then 10mg the next 4 day and thats it you'l be off prednisone. But as i started to taper my symptoms started to come back abdominal pain inflammation in my stool and chills at night, today was my second day with out prednisone and i had diarreha all day also im on scd diet but still have all these sypmtoms.. im so frustrated right now i want to stop imuran becuase i dont think its helping at all and i been on it for a year and it has caused to much lower back pain and knee pain, i want to start remicade or humira or should i get the surgery,, or should i ask for prednisone becuase it was helping me with the symptoms and the worst part is i have no GI to go to :'( Please help me thank you in advance feel free to write anything also if you had surgery or been or using remicade or humira please tell me about your experience if it put you in remission or not and how long have you been on it or how long it helped you and please write where is your crohns located THANK YOU

Wowsers, Your having a real run around arn't you.. Well you need to find a new GI!
Make an appointment with your GP, surley he can advise you or refer you to a GI..
That's what happens over in Aus.. He can't ignore your symptoms..
Hope you get some answers soon, be pushy if you have to.. It's your body.
Welcome to the forum. let us know how you get on.

Hope this helps, but take it with a grain of salt, since I'm new, too!

If in a last resort, I'd get myself checked in with the Mayo Clinic, first and foremost (I would've done so from the start myself, had I known at the beginning that they have an HQ two hours away from where I live!) I'd also ask any or all doctors I see about the possibility of being a part of the Crohn's Disease stem cell therapy research, if any tests are still active. Otherwise, read the below? (I've highlighted in bold what I think helped me immediately.)

Uh, anyway, hi, I'm another forum newbie! What you've been through sounds awful! I don't know how much this will help, but I'd call both your doctors and leave messages with the receptionists that your current docs are leaving you high and dry and in severe danger! Like your doctor said, Prednisone should be tapered off slowly!

Regardless, I'd also try to find a new gastroenterologist AND a GI-specific surgeon, since usually the general surgeons at hospitals and ERs don't necessarily specialize in the GI track.

My Crohn's Disease is located throughout my small & large intestines and my rectum, with it being most active in the rectum, although the large intestine is filled with ulcers. Also, like you, I've had severe weight loss (my lowest was recently at 99 lbs, but I've gained 8 lbs back so far).

Secondly, I expect each person who answers your question will have very different answers as to what worked with them, so keep that in mind if you decide to read what worked for me.

Thirdly, For me, the diarrhea stopped within a day or two of me taking food enzyme pills & gut bacteria pills (the 80-Billion bacterium count variety, although I've now added an additional gut bacteria pill you can get in most drug stores called "Culturelle" that has a LOT of good scientific studies published about it), but then I had the opposite problem, which was alleviated by taking MiraLax once each morning. The MiraLax is a life-saver.

Fourthly, I'm on Prednisone, Pentasa, & Cimzia, which is somewhat similar to Remicade, but you're less likely to get an allergic reaction to Cimzia than the Remicade (It has something to do with using less mouse-derived proteins, as bizarre as that sounds), and the numbers apparently show more people have better results with it than Humira or Remicade, but that just means it's still a gamble, only marketed as slightly less of one than the others.
Also, if you sign up online with the manufacturer of Cimzia, and call their number for info (as long as you have a prescription), you'll get your first 3 injection doses mailed to you for free. They initially just send you a membership card in the mail for your pharmacy, along with an ugly orange fanny pack and a highly-instructional dvd on administering the medicine. For the first year, the Cimzia manufacturer will also help pay for your medicine. The shipping fee will end up being around $60 per dose, though, since it usually has to be made & mailed from a specialty pharmacy! (Your pharmacist will mention this, and usually will mention an alternative pharmacy to go to. Off the bat, I can think of Rx Crossroads and Bioscrip, both of whom will go out of their way to contact your doctors and insurance company once you give them that info. in order to get everything approved) I hear Humira has a similar program to Cimzia's, & Humira also has awesome dosing needles that auto-inject and look sort of like pens; Cimzia doesn't have those and is somewhat painful, since the syringe liquid has the consistency of molasses. I don't yet know about Remicade, but one of my GI-doctor's nurses told me that it requires a trip to the hospital or a nurse/doctor to take every dose.

I wonder if your docs' problems is that many doctors tend not to understand the immediacy of the pain? It's a hideous situation to be in, and often they don't realize that you're already at the end of your wits by the time you get to them, and they tend to minimize everything you've been through, because they're about to get to their next patient in another 15 minutes. Heck, it's been twice now that my GI doc forgot to prescribe me medicine he promised. This second time, it's PAIN medication no less!

I've had surgery, but nothing in terms of my colon; it's very hard to find a surgeon willing to cut the digestive track on a patient with Crohn's disease, because they know you're likely to get inflammation in the areas they sew back together. When I talked to my surgeon about it, she said, "It's okay to bi*** and moan about your condition. You have complete permission, from a surgeon no less, because your options are few and this disease SUCKS."

So, in between medicines, here's what helped for me: before taking Cimzia, nothing worked until I went through days of drinking just regular protein shakes (from Whole Foods), that had nothing but soy protein, calcium, iron, phosphorous, sodium, & potassium (electrolytes, iirc). (I took these along with the digestive enzymes & gut bacteria pills). Gatorade, Powerade, Ensure, & Boost all made things MUCH worse for me, but iirc, taking the Ensure alone at least helped my colon heal at each major section (or at least, the doctor seemed to think it had improved during the time I was drinking only Ensure), even though it was ABSOLUTE murder on the swelling in the rectum, and of course, the Ensure diet caused more diarrhea.
Instead, I got my vitamins through a low-grade multi-vitamin tablet. I also took an additional pill filled with various amino-acids, because I wasn't going to get all the different amino acids a human requires from just soy protein - most specifically, L Glutamine. Drinking just the protein powder made the swelling go down over the course of several days, but your Crohn's Disease may be affecting you differently. (Oh, and I've read that Vitamin D3 is great for Crohn's Disease, and possibly so is Vitamin K2; several forum members have recently just discussed the topic of K2 even today, so I'd check that thread out.)

Also, the most significant & speedy improvements in pain & swelling didn't show until several days after I started taking Cimzia, in which case, whenever I try an uncertain food, I still get minor swelling & blood & pus & pain (I'm still on my 2nd starter dose), but instead of it lingering or being a mind-numbing 150 out of 10 on the pain scale, it is now a 3/10 and the resultant swelling & blood & pus usually recedes within a day.

Also, I really, really, really hate to suggest it, since dosage amounts and consistencies of herbal remedies are NOT regulated by the FDA, but I've read good things about the herb, Cat's Claw, which according to the actual studies, is a natural TNF blocker, in the same vein as the Remicade, Humira, and Cimzia, but according to the web it's *supposedly* also an antibacterial agent & anti-fungal agent (but then again, *supposedly* so is just about every stupid herb out there on the market), so once again, if you don't take gut bacteria along with it, you may get more diarrhea. I even bought some, but since I started taking the Cimzia roughly at the same time I learned of Cat's Claw, I was unable to test its efficacy upon myself (because I wouldn't be sure of whether it was the Cat's Claw or the Cimzia). I did notice that whenever I took Cat's Claw (roughly 1.35g two to three times daily, a total of 6-9 pills per day, for me, at about 450mg/pill or so, always two hours after taking any other pills because it can affect the uptake of other medications), I had the same initial symptoms as when I took my first shot of Cimzia: runny eyes & nose, sleepiness/fatigue for hours, so at the very least, it caused hay fever :-/ which Cat's Claw is known to do in the spring & summer.

Once again, I absolutely detest suggesting an herbal remedy, but given that you've got a little bit of time before you get on any medication, and Cat's Claw is an over-the-counter herbal remedy, I don't see the harm in trying it, although there are ALWAYS risks associated with trying anything, and of course, there is harm in placing all your faith in any particular treatment, most especially treatments that aren't well-known or well-studied, so anything I try or mention is always accompanied with a grain of salt. Keep in mind anything you try may take a few days to see an effect. Anything I have detailed here is just my own personal information and whatever decisions you make are yours alone to make, but I wish you luck and a speedy recovery!

SciFiGuy makes a good point about everyone's experience being different, but I thought I'd share mine with you cos yours rings a lot of bells for me. I have Crohns in the terminal ileum and had an abscess and bladder fistula. I was on Mesalazine and Prednisolone for two months, then they started me on Azathioprine ( Imuran ) too as I wasn't improving. My regular GI was also applying for me to start Humira. I found out about SCD and started on that, which gave me a little bit of relief.
But they couldn't get the fistula to close and thought I was developing another one so the GI referred me to a surgeon saying I probably needed a resection. He put me on antibiotics too cos the abscess was still around.
By the time I went into the hospital, the abscess had shrunk and the fistula closed, but I still had a lot of inflammation in the IC valve so the surgeon advised me to put off surgery and try Remicade first, continuing with Imuran at the same time.
It has worked for me, so I think it's worth giving it a try. And if Imuran is causing you problems, they could try you on 6mp or similar.

hey everyone thanks for the advice and information,, i did get an appointment with a new GI hopefully he understands my situation and helps me,, also im happy to hear that cimzia and remicade had helped you guys and thats what i been doing lately just searching up as much information about humira,remicade, cimzia and other treatments but they all have scary side effects

Try not to worry about side effects. Remember they are a worst case scenario and the majority of people don't get the really serious ones.