hello im all new to this but have had so many problems lately and need advice. So i was detected with crohns in 2003 while having surgery to remove my appendix though it wasn't that it was crohns. the dr put me on pentasa saying i had a very mild case and after a few weeks i felt better, then i started to slack on the pills and eventually never took them cause i felt fine. i could eat anything and everything! well then in 2009 i got pregnant and January 2010 i had my daughter and things started to change. i had either D or C and a lot of blood in my stool. so my gi got me in to do a colonoscopy 6 months later and noted ulcers throughout my large intestine and a stricture at the beginning of my small intestine and perscribed my entocort and wanted to discuss biologics. i ended up finding my old pentasa and took that again and refused to the the entocort and eventually things got better again so the dr agreed to keep me on pentasa but then again i started to slack stopped taking it and then October 2011 i started to get bad pains in my stomach after eating bloating gas ect.. thought i was having troubles with my gallbladder refused thinking it was my crohns. its been a rollercoaster since... feel fine for weeks then bad for a few days until Febuary 2012 i had to quit my job because i was feeling sick all the time the only thing that has got me by is alot of pain killers just to get out of bed. Finally i went into the er 4 weeks ago they did a ct scan and showed a string sign of about 10inches of my bowels where the small and large intestine meet, they aadmitted me put on 120mg of prednisone and kept me in the hospitol for 7 days. Since then im now on 35mg and started to get really bad pain in my lower right pelvic region and my gi thinks i just need to start humira but im scared to death! Ive read that humira wont help if i have a stricture and i have expressed my concerns to all the drs in the hospitol and my gi and i feel they keep pushing the humira. they said surgery is the last resort. I hate the prednisone and the side affects like joint pains and anxiety! i just want to get my life back to normal and feel huira is a little extreme from going to taking no meds for 9 years to humira? How long do i give the prednisone? also they said that i would not be a good candidate for 6mp cause it would become toxic to me from testing my blood levels. I don't know what to do confused and all new to me...first time Ive ever taken my disease serious.
Help need advice
- Thread starter Linds
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Help Support Crohn's Disease Forum:
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Hello Linds
Welcome to the forum.
This must be a very worrying time for you with so many things going on.You have my deepest sympathy.
I find myself in a simliar quandary after being in denial for the last three years, from the crohns diagnosis.
Sadly while we fiddle Rome burns and we have to finally make that inevitable decision.
I don't think my crohns is as bad as yours, but intervening years gives it a chance to further develop and then the complications may set in.
Has no one suggested Remicade to you---it is supposed to be good for strictures and abscesses, fistula formation-------I am sure there will be others on the forum to advise you better than I can.There is a Remicade and Humira section on the forum.Take a look around the sites there's loads of information.
My GI has proposed Remicade or Humira and I can choose which one.I asked him which he would chose if he was the patient and unhesitatingly he said Remicade.
So for what it is worth I will pass this on.
Good luck
Feel better soon
Hugs and best wishes
Trysha
Welcome to the forum.
This must be a very worrying time for you with so many things going on.You have my deepest sympathy.
I find myself in a simliar quandary after being in denial for the last three years, from the crohns diagnosis.
Sadly while we fiddle Rome burns and we have to finally make that inevitable decision.
I don't think my crohns is as bad as yours, but intervening years gives it a chance to further develop and then the complications may set in.
Has no one suggested Remicade to you---it is supposed to be good for strictures and abscesses, fistula formation-------I am sure there will be others on the forum to advise you better than I can.There is a Remicade and Humira section on the forum.Take a look around the sites there's loads of information.
My GI has proposed Remicade or Humira and I can choose which one.I asked him which he would chose if he was the patient and unhesitatingly he said Remicade.
So for what it is worth I will pass this on.
Good luck
Feel better soon
Hugs and best wishes
Trysha
thank you and i appreciate your advice! Today i had another dr appointment with a regular family practitioner and i honestly think god meant for us to meet. She had so much information because she is on humira due to UC. Her advice was to keep doing the prednisone taper and try to get by for the next month and a half and manage with lorazapam and tramodole as needed and keeping to my low fiber diet, oh and she also wants to put me on a anti depressant cause she thinks that stress and anxiety go hand in hand with complicating your disease. July 2nd i have another appointment with my gi and if at that time maybe i can request another colonoscopy to see how that area looks and if it comes down to it where he feels i still need to start humira then i will? Also i forgot to mention starting last night i started to get a bad sore throat with bad mucus build up... tapered my pred to 30mg today and had bad anxiety attack! ugh all i can do is pray and put it in gods hands...Im just so tired i think...hopefully a goodnight rest will do me good!
Linds, so sorry to hear your about the Crohns. I was diagnosed with Rectal Crohns in 2009 I think. Anyway, I only had symptoms for about 2 months before it got really painful and a biopsy found I had Crohns. They also told me it was Mild Crohn's because of where it was located I guess. Anyway, I ended up getting an abscess, and then a fistula, and then seton placement. I had no idea that people get these things but people with Crohns can so please keep your symptoms away by taking your meds (if it's necessary). I never took meds but found a special diet for people with IBD. I decided to try it 100% for 30 days and it worked (as it works for many people). My Crohns symptoms are in remission as long as I stay on the diet. Specific Carbohydrate Diet. Anyway, after almost 2 years with this seton in me, and no doctors wanting to take it out unless maybe, maybe, if I do Remicade. I wouldn't do it, and thought that I would have to live with this seton in me indefinitely, but over a week ago it feel out somehow and I have no pain. I believe it's finally heal! And so I think the diet helped me heal in that area too. I have read elsewhere that it helps heals fistulas too along with putting Crohns in remission. Anyway, I am just trying to give you hope. There are other ways to get better without depending just on drugs. I was lucky that I never took them and I have been okay. But again, only because of the diet change. Check out breakingthevisciouscycle.info. The intro diet is what helps one get started. Good luck and I hope you find the answers.
Hope4 (and it came true!)
Hope4 (and it came true!)
David
Co-Founder
Your family practitioner is very likely wrong. You're at a critical juncture for your disease and you need to work closely with your GI and get another opinion from another GI if you don't feel comfortable with what your primary GI is saying. And that you have stricturing disease is very concerning and it needs to be dealt with properly. Once you develop strictures, tapering off steroids to just a low fiber diet and pain meds is not the way to go in my opinion. It is time to knock that inflammation down and keep in down otherwise you're going to end up on the surgery table.
Don't take my words as me being harsh, I'm just very concerned about you.
*hugs*
Thank you for your advice. Im so scared cause i feel i haven't even had a disease and my life was completely normal. I feel like im never going to get back to that point. I talked to my gi's nurse yesterday about what the FNP had told me and they think humira would do me a world of good.
But what happens if i start Humira and it doesnt work? or only works for a couple years then what happens? Im only 25 and have a little girl i need to take of...the side effects ive read about the drug freaks me out!
Also if i were to start the humira while i am still tapering the prednisone can i taper faster? Im starting my fifth week on it and absolutely hate what its doing to me! Some days i have severe joint pain and my eyes get red and irritated in the am which has subsided the last couple days. also my mind is going haywire i get manic/crazy episodes, depression/ stress, Insomnia, headaches, back pain and the list goes on....Ive never had any of these pains until the prednisone was started. Will these eventually go away? So this is why I would really like to be off it before starting something new so i can get my mind in a better place.
Also im worried about the Humira suppressing your immune system, and getting sick alot? Like i said I have a 2 year old and like to be social and would eventually like to get back to working again, which im a hairstylist and work with the public. So there's alot going through my head. I just want this all to go away and go back to the way i was and could eat and drink anything i wanted! Ive lost so much weight and just want to eat a big taco with a jumbo margarita!
Also i still have not started the celexa (anti depressant) yet cause im on so many drugs right now i don't want it to interact badly with another med im on any advice on that too would be greatly appreciated. The FNP said the only drug that would concern her is the prilosac that i take at 730 every morning 30 min before i eat and take all my other meds which include...prilosac, pentasa, prednisone, calcium, vit D, multivitamin, 25 mg tramodol as needed usually 2 times a day, lorazapam as needed usually 1 a day around noon is when my anxiety/ manic kicks in? and 1 ambien at night to get me a few hours of sleep....
So sorry for the long post...I just really need any advice! I need to get healthy again for my little girl, shes my world! I cant imagine leaving this world without being able to watch her grow up....
But what happens if i start Humira and it doesnt work? or only works for a couple years then what happens? Im only 25 and have a little girl i need to take of...the side effects ive read about the drug freaks me out!
Also if i were to start the humira while i am still tapering the prednisone can i taper faster? Im starting my fifth week on it and absolutely hate what its doing to me! Some days i have severe joint pain and my eyes get red and irritated in the am which has subsided the last couple days. also my mind is going haywire i get manic/crazy episodes, depression/ stress, Insomnia, headaches, back pain and the list goes on....Ive never had any of these pains until the prednisone was started. Will these eventually go away? So this is why I would really like to be off it before starting something new so i can get my mind in a better place.
Also im worried about the Humira suppressing your immune system, and getting sick alot? Like i said I have a 2 year old and like to be social and would eventually like to get back to working again, which im a hairstylist and work with the public. So there's alot going through my head. I just want this all to go away and go back to the way i was and could eat and drink anything i wanted! Ive lost so much weight and just want to eat a big taco with a jumbo margarita!
Also i still have not started the celexa (anti depressant) yet cause im on so many drugs right now i don't want it to interact badly with another med im on any advice on that too would be greatly appreciated. The FNP said the only drug that would concern her is the prilosac that i take at 730 every morning 30 min before i eat and take all my other meds which include...prilosac, pentasa, prednisone, calcium, vit D, multivitamin, 25 mg tramodol as needed usually 2 times a day, lorazapam as needed usually 1 a day around noon is when my anxiety/ manic kicks in? and 1 ambien at night to get me a few hours of sleep....
So sorry for the long post...I just really need any advice! I need to get healthy again for my little girl, shes my world! I cant imagine leaving this world without being able to watch her grow up....
David
Co-Founder
You're not going to leave this world anytime soon because of Crohn's 
My thoughts:
1. Give our Humira forum a read. Yes, there is the potential for side effects but chances are you aren't going to get any of the bad ones. And the side effects usually are more mild than what you're experiencing now. I'm not saying take the Humira, I'm saying research it more before you make a decision so that it can be an educated one rather than being scared off by the list of side effects alone.
2. Have you had your vitamin B12 levels tested? If so, what were they?
3. Research enteral nutrition. It can do absolute wonders for people with IBD.
4. The prednisone taper is to avoid complications from coming off it too quickly. Your body needs to learn to produce its own cortisol again so no, you will likely not be able to taper faster. However, being on Humira would increase the chances that you won't have a flareup as you taper off the pred causing you to have to up the dose again.
I hope that helps a bit
My thoughts:1. Give our Humira forum a read. Yes, there is the potential for side effects but chances are you aren't going to get any of the bad ones. And the side effects usually are more mild than what you're experiencing now. I'm not saying take the Humira, I'm saying research it more before you make a decision so that it can be an educated one rather than being scared off by the list of side effects alone.
2. Have you had your vitamin B12 levels tested? If so, what were they?
3. Research enteral nutrition. It can do absolute wonders for people with IBD.
4. The prednisone taper is to avoid complications from coming off it too quickly. Your body needs to learn to produce its own cortisol again so no, you will likely not be able to taper faster. However, being on Humira would increase the chances that you won't have a flareup as you taper off the pred causing you to have to up the dose again.
I hope that helps a bit
Living on pain meds just to get out of bed is not living disease and symptom free. Your disease is still doing its thing. You need to trust your Drs. If not get a second opinion. But, at some point you need treatment. Its you job to take care of yourself for your family. Your the only you they have!!! I am going to start Remicade soon. I called the makers of both Remicade and Humira. After that I choose Remicade- my most important question was- how high of a sucess rate does your drug have in getting and keeping someone in remission?
I hate to think you may get into an emergency situation by hiding from your diagnosis. There is alot of support here for you! Its easy to do!!
Good luck finding a Dr you really trust!!
Lauren
I hate to think you may get into an emergency situation by hiding from your diagnosis. There is alot of support here for you! Its easy to do!!
Good luck finding a Dr you really trust!!
Lauren
I think i need to make another appointment soon and go over all my options again? And yes i have gotten 3 different opinions from 3 different gi's and went back to my original gi that i was referred to, some times the grass isn't always greener on the other side!
Between the 3 doctors Ive seen in the last 2 years they all have different opinions and approaches to this disease. The gi i seen in the hospitol who did the CT Scan( which they found a string sign) thinks a short strong dose of prednisone and pentasa will kick the inflammation down then i can just maintain with pentasa and he knew nothing about biologic treatment because those came out after he retired and now that hes out of retirement he just comes once a month to the hospital for a week then back to NY. So i will most likely not ever see him again?
I also seen an independent crohns specialist who i was referred to in April. She did a colonoscopy the next day in her office ( which i thought was weird) and it was the most painful experience i have ever undergone! The medicine didnt even work i could feel everything! I was screaming the whole time to stop i thought i was going to die! She started to yell at me during the procedure to shut up and called me a baby... I refuse to even go near that clinic again. A week later the path report came back from her office and in her notes it said ( showed ulceration, friability and edema of very right colon, did not make it to cecum not able to distend that area. All finding are suggestive to crohns. Will most likely give her a short coarse of steriods followed with anti tnf).
So back to my original gi he and his assistant that works along side him recommended i try a biologic they went over all from remicade, humira,and cimzia and thought that humira would be the best fit due to cost and my lifestyle. They also said that they think it would heal about 80% of my crohns. They said that they have almost all there patients on it and said some people love it and have there lives back...which is nice to hear but along with that there are risks.
So what to do? What is the difference between active crohns and a flare up? I don't know if what im experiencing is a flare? Or partial obstruction? Im confused, Does a stricture cause an obstruction? The pain im having now is all in my lower right pelvic area sharp shooting cramping pain? And ive also noticed the last couple days some mucus in my stool?
Between the 3 doctors Ive seen in the last 2 years they all have different opinions and approaches to this disease. The gi i seen in the hospitol who did the CT Scan( which they found a string sign) thinks a short strong dose of prednisone and pentasa will kick the inflammation down then i can just maintain with pentasa and he knew nothing about biologic treatment because those came out after he retired and now that hes out of retirement he just comes once a month to the hospital for a week then back to NY. So i will most likely not ever see him again?
I also seen an independent crohns specialist who i was referred to in April. She did a colonoscopy the next day in her office ( which i thought was weird) and it was the most painful experience i have ever undergone! The medicine didnt even work i could feel everything! I was screaming the whole time to stop i thought i was going to die! She started to yell at me during the procedure to shut up and called me a baby... I refuse to even go near that clinic again. A week later the path report came back from her office and in her notes it said ( showed ulceration, friability and edema of very right colon, did not make it to cecum not able to distend that area. All finding are suggestive to crohns. Will most likely give her a short coarse of steriods followed with anti tnf).
So back to my original gi he and his assistant that works along side him recommended i try a biologic they went over all from remicade, humira,and cimzia and thought that humira would be the best fit due to cost and my lifestyle. They also said that they think it would heal about 80% of my crohns. They said that they have almost all there patients on it and said some people love it and have there lives back...which is nice to hear but along with that there are risks.
So what to do? What is the difference between active crohns and a flare up? I don't know if what im experiencing is a flare? Or partial obstruction? Im confused, Does a stricture cause an obstruction? The pain im having now is all in my lower right pelvic area sharp shooting cramping pain? And ive also noticed the last couple days some mucus in my stool?
