Hi ya’ll! My name is April and I am 26 years old from Southeast Missouri. I currently work part-time at a local gym as a front desk/member services/receptionist. I LOVE my job and everything about it. I love working in customer service and have always enjoyed helping others. My greatest satisfaction from my job comes from completely winning over a “grumpy” customer and helping them to be able to leave with a smile. While this is the job that I do to help pay the bills. I have another “job” that I love even more. I am a volunteer who regularly spends my days teaching people the bible. For the past 3 years, my husband and I have been learning Spanish in order to expand our ministry, and help even more people in our community to learn what the bible really teaches. This gives us great satisfaction and purpose. We even have a goal of being able to serve together in another land some day, that is if my health allows .
Colitis Symptoms:
My UC symptoms currently include fairly regular and “normal” bowels. However, for the past week or so, I have noticed mucous and slight blood in my stools, which is what brought me here to this site…. Which I’m so thankful that I found.
April’s Remicade Story:
Wow, where to begin? Well, I was diagnosed with UC at the age of 20. After about 2-3 months of major gas/bloating/mucous/pain and lots of blood loss, I finally went to see a GI and was scheduled for a colonoscopy. After I woke up from my anesthesia, my doctor walked into my recovery room, opened a chart and very matter-of-factly said, “well, looks like you have Ulcerative Colitis, we’ll get ya started on some meds and go from there.” And that was literally it. I had no idea what Ulcerative Colitis was, that this was a disease that I would have deal with for the rest of my life, and that the worst wasn’t over.
I began over the counter meds and suppositories immediately, however, after the torturous colon prep for my colonoscopy, I went downhill fast. I couldn’t keep any food down, I lost a lot of weight very quickly and was losing even more blood. I could barely move from my bed to the bathroom without tiring out. And I was probably still going to the bathroom at least 20 times a day with meds. After repeated calls to my GI, and after repeatedly being told to just wait it out to see if the meds improve anything, I felt hopeless. It wasn’t until I had a visit from two very good friends who almost immediately upon seeing me said, “Get to a hospital, today!” So my dad packed up my things and we drove 2 hours to a hospital in St. Louis trying to beat an ice-storm that was coming in that night…. We barely made it. However, this was the best thing that ever happened. I met a new GI doctor who actually listened to us, who saw how scared I was, and really took time to answer every single question that my family was throwing at him. I love that man. After 2 weeks in the hospital, a TPN bag, IV steroids, IV iron to build up my blood and lots of vegetable broth later, I was finally able to go home in somewhat stable condition. I went home on Asacol and Lialda. I felt everything starting to look up. I went back to work, started to have somewhat of a social life again and started feeling better for awhile, but over 2 months later I ended up back in the hospital for a second time and my UC symptoms came back with a vengeance.
Now the only two options I had were emergency surgery to remove my colon (what 21 year old girl wants that?) or to try this drug called Remicade. Remicade could be the miracle I needed, the only catch? It is crazy expensive. Also, IF it works then you are stuck with it until it stops working for you because you can’t go off of it otherwise your body will build up an immunity to it. Which could be in a year, 5 years, or 20 years down the road. So, what did I choose? Well, now we are 5 years down the road, and I drive 2 hours to STL every 8 weeks to sit for my Remicade infusion. I honestly don’t have many complaints about remicaid because it did literally save my life…and my colon (which my colon thanks you for, Remicade). Also, I have been technically in remission for the past 5 years while taking it. I really don’t think about even having UC until I have to get my infusions. With all that being said……I DONT WANT TO TAKE REMICADE ANYMORE! :-(
I know, everyone who reads this will probably think I’m crazy.
What?! You are virtually symptom free, you can eat whatever you want, and you don’t have to take any other medications?? You are loca for wanting to mess with such a good thing! Believe me, I’ve heard it all from my family. They were the ones who were there with me when I lost 30 pounds, turning yellow with jaundice, so weak that I couldn’t even make it to the bathroom by myself, doctors threatening blood transfusions and emergency surgery. They are scared. And truthfully, I’m scared too. I wish that I would have had the time to try some alternative therapies like diet change and natural medications before I got stuck on this Remicade train. But at the time it was literally do or die.
Now I’m an adult with a loving, supportive husband. A woman who wants to travel and set and reach new goals with my husband. A woman who just may have children some day and doesn’t want to worry about what the effects Remicade will have on my unborn children. A woman who doesn’t want to be held back by being “stuck” in one place for fear of not being able to find a job with decent enough insurance to cover her Remicade costs. I realize I have to be humble, and recognize my limitations. That realistically there are just some things that I may not be able to do because of my UC diagnosis, but if there is a chance of making a change, I don’t want to miss out.
Whew! Sorry for the long rambling. For those of you who are still with me reading this, I want to ask several questions….
-Are there any out there who have successfully been on Remicade for a substantial amount of time who have weaned themselves off of it with success?
-If you had to go back on Remicade, how long were you off of it, and did it still work just as well when you went back to it?
-What alternative therapies have you tried and with what results?
-How did you approach your GI with your concerns?
-Are there any UC sufferers who are currently living in a country other than the US with limited health resources who are controlling their UC with other methods like diet or natural things?
I really want to try at least maybe spacing out my infusions a couple of weeks longer and seeing how I do, but I just don’t know.
Any help/comments/suggestions would be greatly appreciated! Thank you thank you thank you!
Medications:
I’ve been on Remicade every 8 weeks for 5 years and it is working very well to control my UC. The few negative side effects that I experience are joint pain, back spasms every now and then, a weird eczema-ish rash in random places on my body, and fatigue.
I just recently started a major diet overhaul called Whole30. I am actually 37 days in and have plans to continue it for awhile, at least until my next infusion in a couple of weeks. I have removed all dairy, legumes, grains, and sugar from my diet. Almost immediately I saw a positive change in my energy level. Also, that weird eczema-ish rash that I have had since starting Remicade is started to clear up.
Overall I generally feel better, however about a week and a half ago, I started to notice a little blood and mucous in my stools. This really spooked me because I thought that I have been eating so well and plus I am still taking Remicade so what in the world would bring this flare on now?? So far, I don’t have any pain, just the noticeable “addition” to my stools. I thought that it could be that I am eating a lot more raw veggies and fruits than I used to, and this could be giving me some gut distress. But also I thought, “hey! I’m not eating Mcdonalds, Taco Bell , and Burger King every week like before so why now?”
I was really hoping that this whole30 approach to eating could be what really helps me get off the Remicade, but now I’m starting to doubt myself. Has anyone else tried the whole30 as a way to control their symptoms and with what results? Any reply or comment would be helpful.
written by April
submitted in the colitis venting area
My name is April, I’m 26 years old and a full-time volunteer who teaches the bible. I also work part-time at a gym to pay the bills :-). I’ve been a UC sufferer for 6 years.
Hi April
Thank you so much for sharing your story. I had a similar problem with my GI doctor with no one taking the time to explain what exactly I’d been diagnosed with and that it’d be lifelong. So it was nice to hear it wasn’t just me that struggled with that part!
Unfortunately I have no experience with Remicaid to share with you, however I just wanted to ask you please do not stop a medication whilst your still getting some UC symptoms! If you want to try natural methods overlap them to give your body a chance to adjust. Have you tried probiotics?
Also I understand what you mean about kids, I’ll be thinking about the same things myself with my future husband. But bare in mind the state you were in before with your UC flared, if you come of Remicaid and have the same problems again that is also likely to cause you to have healthy difficulty during your pregnancy and also leave you with no energy for motherhood. Also UC can sometimes make people worse during pregnancy, My GI has always advised to get UC under control as much as possible before pregnancy.
I really hope someone here has a great Remicaid alternative for you so that you will find the solution your after. It feels like there are no nice options when you have UC, every potential solutions comes with risks and it’s scary messing with your body with meds and it’s hard to trust that it won’t cause more harm than good. But I think that it’s a good thing that Remicaid has given you your quality of life back, and quality of life is a pretty priceless thing to gamble with.
Good luck and God Bless!
Hi Henrietta,
Thank you so much for your response to my UC story. And to answer your question, I have not tried any probiotics yet but that is something that I would Iike to incorporate into my everyday routine. Also, no worries, I definitely want to get this small flare cleared up before I do anything different with my medications, only doing lots of research right now with the hopes of making a change in the future. And yes, it seems like everyone I have spoken with who share their stories of when they were first diagnosed seem to say the same thing, “my doctor didn’t even explain to me what it was that I had.” So we aren’t alone in that department, unfortunately. I hope that you have continued success with your UC journey as well. Thanks again for the response! :-)
-April
When I was diagnosed I was solo suck nothing worked. Remicaid worked almost instantly, I kept on it for about 3 years, but was worried about being on it forever. I went off and was good for about a year then had another flare. I haven’t gone back on despite my GI recomendstion. I take a natural supplement called SedaChron, my ND says it has a similar effect on the body as remicaid. I also take a lot of fish oil, digestive enzymes, curcumin, and bit D3. I also try and eat a diet that is a combo of paleo and select carbohydrate. I do well when I stick to it. I can go off and be ok on occasion, but too much straying will cause a flare. I believe diet is key, even though your GI will tell you it’s not.
i have had UC since I was 14 (im 27 now). I am on Humira and I want to quit it too for the very same reasons you stated . I also have another concern and that is cancer. Biologics make you more prone and also the longer you have UC the higher your chance of colon cancer is. Plus the fatigue Humira gives is not letting me have a good quality of life. I’m always in bed and it makes keeping up in school very hard. It has helped control my UC symptoms but for what? So I can lay around symptom free and be too tired to live my life? I don’t think you’re crazy. Your concerns are very valid .
Hi Diana,
I know! It is such a toss up! Would I rather spend my days in the bathroom from my colitis? Or in the bed from fatigue? My fatigue from the remicade is what really motivated me to make a change to my diet, just to see if maybe there was any connection. There were some days that I didn’t even know if I could make it home from work because I’d be so tired and literally felt like I needed to pull over to take a nap. I will tell you that the whole30 has REALLY helped with my energy levels. They aren’t perfect, and we will see how I feel directly after my next infusion, but as of right now, I do feel that I am sleeping better and actually have sustained energy through the day. It isn’t for the faint of heart, but it has helped me. It may be something you could look into? Just be careful with the raw fruits and veggies! I am learning my lesson from that. :-). Hope all goes well with you. Thank you for responding to my story.
-April
You cannot stop remicade have a break and then just start it again if you need to, Your body builds antibodies to it and remicade then becomes toxic to your body. At that point without remicade, your only option really is surgery so don’t quit a good thing because you can’t just go back to it.
The point Diana raised about increased risk of cancer is partially true but colon cancer is not one of those risks when talking about biologics. The increase in risk is tiny and negligible compared to your risk of colon cancer if you cannot keep your UC in remission (stopping remicade for example). The risk of colon cancer in UC is about 30% after 30 years with the disease wheras the risk of developing a cancer caused by the biologics is something like less than 1%.
No brainer if you ask me, stay on the remicade
Hi Tom,
I definitely appreciate your thoughts in response to my story. You make some very valid and true points. I know that it isn’t just the obvious symptoms that I have to watch for, but also the inflammation that can often go unnoticed and increase my risk of cancer. And you are right, I’m not ready to live without my colon just yet if it were to come to that if I get off of Remicade. I do plan on at least talking to my doc to see if (after this flare clears up of course) maybe there is even an option of being able to space out my infusions a little longer, at least by a week or two, while still keeping to a pretty strict diet in order to see if i can tell a difference. I don’t know, we will see. Thank you for taking the time to respond, and to share with us the statistical info that a lot of times goes over my head! :-)
-April
Hi April,
I felt like you were writing my story! I too was in hospital for 1 month on TPN, IV steroids and iron infusions prior to that I wasted away lost in the dark feeling helpless and hopeless. I was given the same options you were and chose Remicade (I had just gotten married, what newlywed wants a colostomy bag as a wedding gift) . I have been doing infusions every 8 weeks since 2012 and am in full remission. I suffer from joint pain as well but do find that some things help with that. Heat for me does the trick. I sleep on a heating blanket and I wake up feeling great, I went to a place that has a infrared sauna, it is the best as far as being therapeutic ( I am now purchasing one). Joint pain is a symptom of UC and not necessarily from Remicade. They actually use Remicade to treat Rheumatoid arthritis so there is no guarantee you will lose the joint pain when you stop the Remicade. As for the diet change you have made I too can not eat certain foods and my body tells me pretty quickly with bloating, gas and a burning sensation on my lower left side. I think cutting sugar and other changes you made are great health choices but I would steer clear of the RAW vegies it can be very irritating on the bowel especially if you are already compromised. Try steaming all your vegies and see if that makes a difference. As for Remicade I too often think I would like to go off and still have my remission but I am too scared as well as I know this is my last defense so I guess you have to really think and weigh your choice. If you could live without your colon if it comes to that then give it a try, there are lots of treatment options these days like fecal transplants that are getting good results but keep in mind although Remicade is expensive, once you start on the homeopathic road it can also become very expensive. Just make sure you can live with your choice whichever way it goes.
I am a certified reflexologist and non practicing RN and I do a lot of health teaching with my clients who have many health issues. If you wanted to talk further you could email me at alwaysgoodforthesole@outlook.com or go to my FB page https://www.facebook.com/alwaysgoodforthesolereflexology where I try to post informative information.
Best of luck to you!!
Hi Teresa,
It’s nice to know there are fellow UC sufferers out there who share similar experiences as us doesn’t it? Not that we are happy others have to deal with this horrible disease, but at least there are others who understand how we feel. I’m sorry that you had that same awful experience, but I am happy that you are getting relief with Remicade as well. It really can be a lifesaver when we need it. I may give your idea about the heating pad a try. And I definitely would like to look into the infrared sauna, that sounds relaxing at least! :-)
And yes, I am learning my lesson with the raw veggies. I will definitely try more cooked veggies from here on out and see how that helps.
Thank you so much for the info, and I will definitely be checking out your website! I will save your email if I have any other questions as well.
Thanks again for commenting, I definitely appreciate every perspective coming from everyone.
-April
God bless you April. Trust your instincts especially when it comes to unknown possible effects it could have on a baby. I was in remission somewhat for the last 5 years with periodic episodes that I managed poorly, suffering greatly and not addressing the inflammation but overall compared to the past years, these 5 had been better than the last 13. I was diagnosed right before 9/11 with the same symptoms you described. Your story was similar to mine. I just had a major flare, found a new gastro and I am healing slowly on Lialda and prednisone. This time of healing has been an excellent period of prayerful retreat with the Lord. Jesus is my constant Companion and I pray His Word every day. I pray for your healing and everyone on Adam’s website. I am trying to learn Spanish on line as well because I will be teaching Catechism classes most likely to Mexican immigrants. It will be a great honor. I loved your post. Stay well and keep serving the Lord. I offer up all my sufferings to the Lord, what we Catholics call Redemptive suffering, that way its not wasted and the enemy is routed.
I have a 2 1/2 hour bus commute to work each way or more if there are weather issues, protests or accidents and it is truly torture. My faith and strong prayer life have kept me going. This disease is a recognized disability and more public education and research on a cure need to be done. Autism has a puzzle piece, breast cancer the pink bow, maybe we can have a toilet pin and for just one week everyone who doesn’t have UC should take diuretics before they go out to see what we go through lol. To heck with the bucket challenge, lets give them the diuretic challenge lol. Hope that made you smile.
God bless you and everyone who reads this. Health, happiness and prosperity to all.
Hi Eddie,
I’m happy that you are finally finding some relief with your new GI and medication. It is very true that when we are facing difficulties such as illness, it makes us reflect more deeply on life. I definitely have more empathy for those that are dealing with a chronic illness. I had felt much like Paul many times, who 3 times entreated the Lord to remove his thorn in the flesh, however, he was never miraculously cured. But, he was given a response that greatly strengthens me each day as well. “But he said to me: “My undeserved kindness is sufficient for you, for my power is being made perfect in weakness.” Most gladly, then, I will boast about my weaknesses, in order that the power of the Christ may remain over me like a tent. So I take pleasure in weaknesses, in insults, in times of need, in persecutions and difficulties, for Christ. FOR WHEN I AM WEAK, THEN I AM POWERFUL.” (2 Corinthians 12:9,10)
I pray that others can find stregnth in their weaknesses as well. Realistically, I know that the only true and permanent solution to our problems is God’s Kingdom, for which I pray to come every day. But until that time, I will keep enduring this “thorn in the flesh” and I hope that you are able to do the same.
And by the way, I did smile with your idea of a new UC diuretic challenge :-)
Thank you again for responding. Espero que usted puede lograr su meta en aprender español tambien. (I hope that you are also able to achieve your goal of learning Spanish)
-April
Hi April,
Glad you found the site – there is a lot of good advice here, whether you want to use meds or go more naturally. Good for you for being able to enjoy a nice remission – that’s awesome!
I have not been on Remicade, but I do have experience with Whole30. I have been strict paleo (autoimmune paleo during flares) and also take meds (Canasa and Apriso). Diet is such a key thing for me and I can really tell a difference when I am not as strict as I need. I was eating very clean before I embarked on my Whole30 in October, but was enjoying wine and also many, many Larabars. Oh, and plantain chips from Trader Joes. I just don’t do well with that much sugar, I don’t think. However, during one window of my Whole 30 I noticed that I was really bloated and gassy – I was like you and wondered if it was the increase in veggies. Through some experimentation and careful food journaling, I found that it wasn’t so much the veggies as it was RAW and COLD foods. Backing off of those was a great tweak for me.
I think any diet that focuses on whole foods is a good bet, not just for UC but anyone. :)
There are some folks on the site that have done Remicade in the past – I am sure they will weigh in! Best of luck to you – keep us posted! :)
Hi Caroline,
Thank you so much for sharing your whole30 experience. I have been very strict with my whole30 but I haven’t been following the AI protocol. I have been reading up on it though, and it is something I would like to try, especially if I do end up trying something different other than the remicade (I haven’t decided fully yet about that). Regardless, I know the change in diet with benefit my overall health. I have a question for you if you don’t mind. What types of foods do you eat for breakfast? For the past month, my breakfast has pretty much consisted of eggs, avocado, and a little fruit. I pretty much eat this every day for breakfast. But I believe that on the AI protocol you can’t eat eggs and this has been my go-to protein source. Do you have any suggestions?
-April
Oh, and thanks so much for replying, I am definitely getting lots of feedback and I really appreciate that!
Hi April!
The Paleo Mom has a great website for learning more about the AI protocol, plus some terrific recipes. Breakfast without eggs was tough at first… eggs were one of the first things I reintroduced. Fortunately, I have never had issues with those…nightshades are another story.:)
I usually batch cooked some sort of meat and froze it into individual servings, and that worked well for me! A couple of my favorite recipes were Paleomg’s Summer Breakfast Meatloaf and The Paleo Mom’s sausage patties. I can’t remember the exact name of that recipe but it was ground pork mixed with herbs (I used extra sage!) and pan fried. These were quick, easy options that were really satisfying when I paired them with a little fruit and avocado. Hope that helps! Leftovers make great breakfast too.:)
Thanks so much! I will definitely be checking out her blog. I really like the idea of the sausage patties too. Thanks for the response!
-April
I found the recipe – I don’t think I can post a link here, but if you google Paleo Mom Bangers it will pull it up. I didn’t know what mace was, so I never used that – and after I got comfy with the recipe I just used whatever spices I had around that sounded good! Let me know what you think – once you get used to a different kind of breakfast, it’s not as big of a deal. Good luck! :)
Thank you thank you thank you! :-)
Hi April
I can relate very much to your story in that I have been on Remicade for over three years until March. I remained on it while pregnant and breastfeeding. I had a horrible horrible pregnancy. I threw up every day the entire time and lost 15 pounds. He ended up being a very healthy baby but was also very colicky. He cried non stop for the first 4 months of his life. Having said that, and I don’t want to scare you, he truly is a very healthy baby. I just wonder if things had been different if I wasn’t on Remicade. Now my son is 2 and still very healthy and happy. I took my last Remicade infusion in March 2014 and tried a variety of herbs, including Una de Gato and Venus Fly Trap and a strict paleo diet. Things were really going well. I’d lost some weight, started running, and had more energy. Then I started to flare in November 2014. I had a colonoscopy last week, and the DR informed me I now have crohn’s, in addition to my already existing UC. To say I was devastated is an understatement. I am still sorting through that. I just don’t really think that getting off the Remicade necessarily resulted in me getting crohn’s. I think that was just going to happen regardless. Meds gave me migraines, fatigue, cramping, joint pain. And being off meds, I am free of those side effects. I don’t regret getting off remicade but now my fear is… will my disease continue to progress regardless of what I do? I also started to develop psoriasis and am hoping it’s just acute and not chronic. If you want to talk more, my email is jesscheer1@hotmail.com and I also have a blog about things I’ve been doing for my disease. Good luck, hon http://jessicalynnj.blogspot.com/
Hi Jessica,
My heart is completely breaking for you. I am so sorry for your new Crohns Diagnosis… I’m sure that is such a disappointment.
I checked out your blog! That seems to be a good creative outlet for you to share your story with others. I’m sure that there are others that will benefit from reading your experiences as well. And your little ginger man is so cute! I’m happy that you had a healthy little boy even while on remicaid, and despite the difficult pregnancy/nausea that you experienced.
I can relate to how you feel when it comes to comparing side-effects. It’s is such a toss-up between feeling bad from your UC, or feeling bad from the Remicade. I guess at this point in life, really we just have to choose between the lesser of two evils.
I will keep up with your blog. I’d like to know how you are doin in the future after the initial shock wears off. I pray all the best for you and your family. Hang in there girl.
-April
I had a similar experience this past October, when I was first diagnosed with UC. The flare up brought me to the ER multiple times and after being on Prednisone and Lialda and Canasa for weeks with no sign of improvement I thought I was going to die. I kept blacking out from the pain and what I later found out was stress on my adrenal glands from the medication.
A friend recommended a “functional medicine” or wellness doctor (who also has a standard medical degree, board certified, etc.) who specializes in nutrition and healing. I saw her, she put me on a diet similar to the whole30 (but limiting raw foods, so lots of cooked veggies), and after three weeks I had done a complete 180. I felt great, was able to move without blacking out, got my energy and color back, no more pain or blood loss – we were both shocked and ecstatic over my miraculous recovery. The biggest helper was adding gelatin to my diet. There’s an enzyme in gelatin that coats our stomach and intestines that protects them and heals them from things like UC. I probably could have avoided the disease altogether if I had already had gelatin in my diet before. I do a homemade jello, but bone broth works too. I highly recommend all UC sufferers to try it.
It’s been almost six weeks now and I just got back from a trip to South America that I was only able to do because of her help with the diet change. I’ve also been able to introduce most foods back into my diet (except gluten – stay away from gluten, soy, and peanuts for longer than you do the general whole30).
Last month I listened to all 38 autoimmune experts from around the world on the Autoimmune Summit. They all agree that there are causes for autoimmunity (our diets – sugar and gluten mostly, environmental toxins, and stress) and that it can be reversed to get off medication safely. I’m living proof of a dramatic improvement of changing my diet and focusing on stress management. I do guided meditations/prayer before bed every night and have been incorporating more yoga and relaxing breathing techniques throughout the day. I can’t wait to ditch the meds for good and live a normal life.
My advice for your situation would be to find a doctor who understands the harm of gluten, sugar, and processed foods for autoimmunity – and the benefit of adding gelatin! You might be able to come up with a plan to come off the Remicade safely if you have everything under control and stick to a diet and low-stress lifestyle that can prevent future flare ups. Good luck!
Hi Lauren,
Thanks so much for all of your suggestions! I have never heard of the bone broth/gelatin as a supplement before and I will definitely be looking into that.
I know a lot of GI docs don’t belive that diet plays much of a roll in treating the disease, but I’m convinced that it does. I’ve just read too many experiences of ones who have been helped by a change. I don’t know that I can completely reverse my diagnosis, but if there is anything out there that helps other than costly and potentially harmful pharma drugs, I’d like to at least look into it so I can make an educated decision.
Thank yo so much for sharing your story. And please keep us posted on your progress.
Oh almost forgot… South America? That sounds like an awesome trip! Did you have trouble finding compliant foods while you were down there? I know most Hispanic dishes consist of rice/beans/flour tortillas etc., so how easy was it to find alternatives?
-April
Hello,
I have had UC for around 7 years now. At first the Asacol was keeping it under control but around 4 years ago, i changed my insurance policy to generic meds unfortunately i didnt realise that there was no generic asacol sold in the U.S…my insurance company (blueshield) refused to switch my policy back to name brands. I was forced to go off the the asocol for financial reasons and started to relapse after a month. I tried buying generic masalamine from Canada but it did not get me back into remission.
I tried the SCD diet 3 times but it only made me worse…All the puried veggies gave me chronic diarrhea for almost 2 years, i lost 50 pounds and finally ended up in the hospital.
The high doses of steriods made me completley crazy, i had ringing in my ears and i didnt sleep for almost three months.
My doctor started me on remicade and had worked great for 3 years until about a month ago i went into another relapse a week before my remicade infusion..its been “bloody hell” (my Irish friend put it best) ever since.
Now i am back on masalamine and today my doctor is giving me a double dose of remicade… I guess if this doesnt work its back to steroids or surgery.
Hi Kurt,
Wow, what a story. I can totally relate to you with the steroids making you crazy and not sleeping for days on end. That’s a part of my UC story that I’d like to forget, as when I look back on it now I STILL get embarrassed at some of the crazy things I said and did…. Steroid psychosis it’s called. That’s a story for another time though. Someone should start a thread for people to share their crazy prednisone stories, I’m sure that would be very entertaining.
Anyway, as far as your experience, I’m so sorry about the insurance giving you such a problem. It is such a broken system. Many people don’t get the meds they need because of insurance issues. And I hate that because of it you are going through such difficulties with your health. I hope the double dose of remicaid will help to start you on a path of remission.
Please keep us posted on your progress. I hope and pray for the best.
Thanks again for sharing your experience.
-April
Thanks for sharing your experiences.
I feel your pain and burden. I was diagnosed with Crohns over 10 years ago. I have had two bowel resections and been on over a dozen different types of medicine. I tried Cemzia and Humira. Both of these gave me lupus like syndrom.
As a last ditch effort I was put on Remicaid. It seems Remicaid is an old drug which has been replaced but the new ones didn’t work for me.
If the Remicaid is working for you don’t stop. I whole heartedly understand not wanting to be ties down and burdened by having to take Medicine every day, dealing with medical bills and insurance. But you aren’t remembering how bad things were because you are doing better. That’s how out memory and brains work. It’s also why people stop taking their anti depressants when They feel better. Find a way to accept that you are now better and this is your life.
Steve Jobs may well be alove right now if he didn’t go down the “diet” and home remedy approach. He destroyed his body while his pancreas was sick.
Try really hard to remember How bad things were. Then ask yourself if you can live that way forever if your new plan doesn’t work out since you won’t be able to take Remicaid any more.
Look at it this way, eventually your body will adapt and stop the Remicaid from working. Have everything planned out for that scenario. But don’t cause it to happen prematurely.
Girl, I know how you feel. I am on it too, almost a year now and it works but I hate being on it. First of all, the expense, I can’t keep doing it or I won’t have any retirement. 2nd, the risk of it scares me so much. I pray God protects me from any hard to my body every time I have an infusion. I plan to try and get off, just need to see how my dr says to get off. She wants me to see the IBD specialist before I make a decision. Problem is next treatment is coming up in 3 weeks and I still don’t have appt with him. I really think strong probiotics, diet with no gluten, sugar or alcohol along with metamucil and fish will be my route.
Hello,
I feel for everyone on here. I have been diagnosed with crohn’s. I am fortunate to say that I have not had some of the horrible experiences that many of you have had to endure. I am 44 year old educator. Luckily not in a classroom now as to make to restroom easier! My main complaint is pain in upper right side which I was positive was gallbladder. Colonoscopy and endoscope done Dec 2014 and June 2015 confirm Crohn’s ulcers in small intestine. Have taken lialda for almost 2 years. Sometimes no pain sometimes a lot. Seems weird, but seems to act up with a lot of walking. Anyway at last visit, doc wanted me to think about Humira or Remicade. And frankly, it scares the crap out of me!! About 8 years ago, I ate all raw vegan diet and felt wonderful!!! Energy, healthy weight, clear skin, no issues. I have dabbled in it on and off for years. When I’m not eating raw , I don’t eat well at all. All pasta, bread, cheese, cookies, etc. I really feel that my body has rejected bad food. I am now on day 5 of all raw vegan diet. Still on lialda. 4 pills a day. No pain except when walking far. It is strange beside I know raw produce is a “no-no” for people like us, but I truly believe in our bodies natural healing. People have treated many health issues with raw food because of the natural whole state of the food. I’m giving it a go… Seeing doctor again in six weeks. I did it befor for six months exclusively, but stopped after going on vacation and backsliding. Now with major health concerns, I have more of a reason to do it. There are many many resources to preparing delicious foods! If you are curious just google! Prayers for healing for us all.