Jennifer’s Current Ulcerative Colitis Symptoms:
Currently, I have been in a flare for over a month, has been on going for several months.
Alot of abdominal pain, bloating, fatigue, blood in stool, frequent porclin visits, depressed and literally feel like a prisoner in my body.
Jennifer’s Story:
Hello My name is Jennifer
I suffer from Severe Ulcerative Colitis, for over 14 years. Over the last 5 it has been really rearing its ugly head. Last year 14 hospital stats, 12 blood transfusions and close to death. Several different attempts w Meds, Asacol- 4 daily, Remicaide, Humira, MP6- (Mercaptopurine) – 50 mg 2x , Frequent uses of Prednisone &probiotics.
Diet change, Therapy, Depression meds, & anxiety meds.
My doctor Said he was at his wits end & started to discuss a colostomy and referred me To Robert Wood Hospital.
Well my last hospital stay , I was rushed to the hospital with blood levels (red hemoglobin) of 4.2 and in bad shape, my body was starting to form antibodies to the blood, formed antibodies to Remicaide, ironically I did not go to my usual hospital in which my Dr. Practices and My primary Dr. was very determined to get different results, he then consulted with a few other Dr.s Oncologists, Nutritions, & Another G.I Dr, who’s speciality is specifically Colitis and Crohn’s.
He reviewed my records, got with my former Dr. And to work he went.
He said a colostomy is far from his solution and to trust him and together we will find a different solution,
He started to wean me off the prednisone and explained prednisone is not healthy long term and was determined to get me off. Kept me on the Mp6 50 mg 2x daily, started me on Humira 1 shot twice a week, apriso 4 daily, iron infusions, diet change and yoga.
I was finally starting to feel good, no more frequent flyer miles to the porclin potty, a normal stool, in which I haven’t seen in years, no more blood in stool, gained weight , I began to feel Normal again, I felt as if I was breaking free of the jail I was in, MY BODY.
Until about 2 -4 months ago, life hit hard and I’ve been in constant flares, back to jail -trapped in the house & feel like my body’s holding me hostage again.
Humira was working great, was healing the ulcers in my colon , -which my last dr. Said my colon basically looked like chop meat, and didnt see hope.
Humira started to make remission look possible.
Well my body is working against me yet again.
When I started the 6-MP, I started to lose TREMENDOUS amounts of hair, I decided to stop that med. Curious to know if anyone on this med also had this problem???
I’m trying to stay positive, doing prayer & meditation but it’s hard to stay optimistic sometimes..
I just had blood work done , anemia is gone, blood levels are the best I’ve had in years, but the flares are frequent and I’m very tired.
Just went for a cat scan and my Dr. Said he did not like what he saw, so I’m kinda delaying the inevitable and avoiding the results..
Praying for the best, putting my big girl pants on and going to get results and continue to surrender to this disease. I can’t, he can I will let him.
Medications:
Currently on Humira 1 injection every 2 weeks, Apriso 4 daily, Mp6 – 50 mg 2x daily, probiotics, No raw veggies, no gassy foods, cut back on caffeine, no greasy, fried foods , no popcorn , no seeded foods, no fast food.
Prayer, meditation & yoga.
Try to avoid stress and aggravation as much as possible…
written by Jennifer B
submitted in the colitis venting area
My Name is Jennifer, I am 40 Yrs . Old, from Bayonne N.J
And was diagnosed with Severe U.C in 2003. Since then it’s been a roller coaster ride …
Have you try going vegan
Hi Jennifer,
I can relate to your struggle. It’s encouraging to hear how positive you are staying even through this tough time. I think your attitude is definitely helping your situation. I had hair loss after azathioprine which is a similar medication to 6mp. I’m off of that medication now but I’m still experiencing hair loss and I’m sure it’s because I have never achieved remission (in 6 years) and my body is so inflamed. I stayed awake for my last colonoscopy and I saw the ground meat look – it’s really scary. I came across this video that I found helpful to explain the cause of the hair loss.
http://www.med.umich.edu/ibd/school/video205.html
I’m learning a whole lot from this video series – I’ve had UC for about 6yrs but my GI didn’t explain very much to me. There’s even information about surgery (if that’s the inevitable you’re talking about).
Good Luck!
Thanks for the link to the hair loss video, Heidi. That was very informative and something I had never read before :-)
Hi Jennifer. Sorry to hear about your continued troubles with UC.
As far as 6MP goes, my experience with the drug was hair loss, nose bleeds, severe fatigue and the start of liver toxicity. My primary doctor noticed with some labs that she had ordered that there was a problem with my liver and immediately took me off the 6MP. I would strongly suggest that while you are on the drug to be sure that they are monitoring your liver with regular lab work. We are all affected differently by all these drugs. All we can do is make sure that labs are run on a regular basis to be sure everything is in check and discuss any side effects we are experiencing with our Doctors. There is a great feature on Adams’s website here that lists many of the drugs that are being used for UC today and what other UC’ers have experienced while taking the drugs. Check it out.
I have since been able to get off all maintenance drugs (I am so sensitive to medication that it almost always is worse for me than the ailment it is supposed to be helping.) I had to be put on a prescription iron pill as my iron and ferritin levels were low and it has been a challenge for me but well worth the aggravation as it is helping with my fatigue.
I hope you are able to find some solutions and some improvement in your UC symptoms. This website is a Godsend for many of us, so take some time and read what others have written. I know it has helped me in so many ways.
Hi Jennifer. So sorry to hear about your current situation but equally impressed that you’ve remained so positive. I’m currently in a mini flare and using nightly Pentasa (mesalazine) enemas which really help me get back on track. Maintenance wise i’m also on Mercaptopurine and have been since 2014. Whilst they were trying to get the dosage right for me, I too experienced crazy hair loss, but only for the first 6 months. Others are right, we are all affected very differently until our body gets used to them. I also had very strange taste experiences. Anything strong tasting (onions garlic etc) would stay in my mouth for days and I developed a really sweet tooth as I had to follow every savoury meal with something sweet to get rid of the taste…weird! Since my dose has been tweeks I go for regular blood and liver checks and things have settled down a bit. I wish you every hope of a recovery that doesn’t involve surgery, but whatever happens, having a good sense of humour really helps! Keep us posted x
If you haven’t read “Listen to Your Gut” or gone on an IBD elemental diet to give your gut a rest, you might want to take a look at this. Caffeine is a total no-no for all IBDers. If you haven’t seen a doctor who practices Functional Medicine, you might want to do that. They are the ones who are responsible for my progress. Lots of supplements and elemental diet along with drinking broth and bone broth. My g.i. doc is totally comfortable with anything that works. I am still not all healed from a god-awful flare, but doing very well. Wish you well. This stuff sucks big time!
Hi Maddy,
I SO agree with you about the Functional medicine approach. It has been a real turn-around in hope, pain level and motivation to chose healing, not just settle for occasional remission. Taking this path we have found DLPA is a great pain reliever. It is an amino acid and we get it from vitacost.com. It is non toxic and helped reduced pain meds (after a BM it is excruciating for an hour that an ice pack is needed). If any of you have ever heard of castor oil packs, these help your liver cleanse inflammatory toxins and increase glutathione production which builds the immune/healing functions.
Other things that have helped: Treadmill 10 min every day, Digestacure capsules, a gluten free diet, tart cherry, carrot, prune juices and blending all veggies after light steaming them, Turmeric, slippery elm, whole food vitamin/min supplements, veg broth soups, homemade yogurt with organic berries, Ezekiel bread, real butter and olive oil, lots and lots of digestive enzymes with all food and HCl with any protein meal or snack. Hubby is low stomach acid,HCl, producer and blood type A which is a sure bet digestion issues will surface middle age. We have been on this very strict nutrition for two months and it is paying off. Love to you and keep going!
Ren, Canasa suppositories are great for rectal pain and tenesmus.Not sure that prune juice is helpful/necessary? Thanks for passing on the info about DLPA, I will have to check that out.
Best of luck!
I have had all of this and no your pain.I have completed a rough copy of my book about how to fix all of this without drugs or surgery.
If anyone wants a rough copy email me at cmiller@sutton.com
.
Jennifer
If it comes to it, surgery is not all that bad. You get used to having a bag and life gets back to normal. I’m 28 and chose to have my ileostomy made permanent but there are other options in the form of Jpouches if that is a route you want to explore.
Search on twitter for ileostomy and you’ll get a good idea of how well people are doing with one
Tom
I have now finished my completely free book about how I healed my colon naturally with the SCD and implants
I was very bad for years and the doctors didn’t help…just too many drugs and always the suggestion and recommendation to take the colon. I’m over two years now so well,no drugs and healthier in the colon area then ever in my entire life.
If you email me I will forward it to you.
Would love to read your book about how you healed.
Hello
My son is in the hospital suffering the doctor started Remicad and we are waiting for results
If you can mail me your s c d and what implant ?
Thank you
I would need an address to email it to you
If Adam you have an idea how to get this book I have on my email to you you are welcome to post it.
My email is cmiller@sutton.com if this helps the woman with the sick child.