Need some advice

Hi all,

I have been in a colitis flare for three years now. I have been given remicade, simponi, entyvio, 6mp, steroids.....the list goes on and on. Nothing will stop the bleeding. The doctor says my only options are trying a clinical trial for Stellara or we begin the talk of colon removal. I am 30 years old and I am extremely against the colon removal. I don't particularly want to do a clinical trial either. The best I felt in these past three years were the four months last year where I was literally on NO meds because of insurance screw ups. I don't feel great right now, but I don't feel awful either. I kind of want to ride it out. The doctor says my colon looks terrible. My husband hates my doctors because every time they put me on something I get worse so he wants me to not take any meds and see how I do. I have also thought about going to the Cleveland Clinic or some place like that and getting another opinion on what can be done. I guess I am just looking for some advice/opinions from my people who are going through this terrible disease with me. Any thoughts/suggestions are greatly appreciated.

I don't know why you need to be in a Clinical Trial to Stelara, I got mine as an off-Label approval by my insurance company. My GI just had to write the script and then file a couple of appeals about medical necessity.

I like Stelara, it worked pretty quickly for me. Injections do not hurt and no side effects.

This was before it was approved for CD, now that Stelara was approved by the FDA it should be even easier to get it for UC.

My GI writes a lot of scripts for Stelara, he really likes it.

My symptoms are a lot of bleeding, pain right before a bowel movement, weight loss, diarrhea, and really bad body aches from pretty much head to toe. I am currently taking canasa every night at bedtime, I don't know if it is really helping though. I also tested what my doctor called "weak positive" for celiac disease so I have been doing gluten free for a couple of weeks.

Why are you against colon removal? Are there specific fears or concerns that you have? We have some very knowledgeable posters who've undergone surgery and had terrific results.

Stelara and xeljanz two options that use very different mechanisms of action than the other medications you've tried. We've had some who've had results. might give you hope that there are still options available. They're not currently prescribed for uc, so you'd have to get them prescribed off label or through a clinical trial.

There's many alternatives. The ones people talk the most about are FMT and LDN. Seems hit or miss, just like all potential uc treatments are. Certainly there are some strong proponents who've had results.

I think at this point your large intestine has proven to be nothing but the bane of your trouble, impacting your quality of life for years. If you were a landlord and your colon was a belligerent tenant the i bet it would've been evicted a long time ago haha.

1.) In all seriousness though having surgery doesn't mean you cannot bear children afterwards, it's an increased risk but not a certainty. Let's throw some statistics at this. "A 38.6% infertility rate in UC patients
after IPAA versus 13.3% in UC patients managed non-operatively. The reduction infertility may be due to surgery in the pelvis and the consequent adhesions and damage to the reproductive organs." Women with an IPAA mostly suffer a reduction in the probability of conception rather than complete infertility.

2.) Fecal Microbiota Transplant (FMT) is a procedure in which fecal matter, or stool, is collected from a tested donor, mixed with a saline or other solution, strained, and placed in a patient, by colonoscopy, endoscopy, sigmoidoscopy, or enema. The purpose of fecal transplant is to replace good bacteria that has been killed or suppressed, with good from a healthy donor. There's a number of posts about itn like this one www.healingwell.com/community/default.aspx?f=38&m=3066732&p=18

3.) Low-dose naltrexone (LDN) is mentioned in the resources topic at the top of this forum. Here's a link www.healingwell.com/community/default.aspx?f=38&m=1666318 near the end of that long thread.

I haven't tried either FMT or LDN.When you talk alternatives they aren't prescribed specifically for UC.

It's good to know all your options and what you're willing and comfortable with trying. I wouldn't write any off. So, I'd also schedule a consultantion with a colorectal surgeon or two. It's a no obligation question and answer session where you can ask about your concerns. Read up on articles regarding the procedure -

• www.ncbi.nlm.nih.gov/pubmed/14501509
  
• www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/
  
• www.ncbi.nlm.nih.gov/pmc/articles/PMC2709047/?tool=pubmed
  

There are also some good blogs out there that really helped get a handle on what the process is like -

• ronnielee-fightingforit.blogspot.com/
  
• itslikethisuc.blogspot.com/
  
• fyouuc.blogspot.com/
  
• From Sickly to UC Free
  

I think LDN is worth trying for some folks, but I'm just not sure it would be the answer for you, because from what you say you have tried some 'heavy hitting' Meds thus far with no response, and I'm not sure a low dose Med like LDN would work, but maybe in conjunction with FMT, who knows, it is a real slog finding the right Med that works!

I actually wanted to try LDN myself, but I was unable to due to my doctors concern that although it can work for some people with UC there is no widespread documentation supporting that it helps people with Spondyloarthritis, and I needed a Med that would work with both, and so after research, I had to agree. But, I have tried home FMT, I used my husband as a donor after contracting Colostrum dificile, I was worried about re-infection which is why I went ahead with it and my stools changed the next day and continued to do so on a day to day basis, so I am all for it. Faced with the daily misery that we have to endure on a day to day basis with having UC, giving myself a FMT was an easy decision to make.

My husband had also gone through all the biologics options and had met with a surgeon. He had wanted to try everything before going the surgery route, but was so tired of feeling so sick.

His GI, who we like, recommended he get a second opinion because you never know what new stuff is out there. We met with a GI at Johns Hopkins who also concluded surgery was in order, but at the very end of the meeting, when I grilled him on options, he mentioned Xeljanz. It is not approved for UC yet but is in Phase III clinical trials. Our insurance approved it, off label, and it has worked. Put him in full remission.

His GI also is participating in the Stelara study for UC. It is already approved for Crohns. My husband didn't want to participate in the study for the same reason as you -- risk of placebo. GI has one patient in the study and says it has worked great. Maybe you can try for that off label as well. What's great about Xeljanz is it is a pill.

Thank you everyone for your feedback! I truly appreciate it! I have a lot of research to do and things to think about! And thank you for the positive stories of being able to have babies after surgery! I guess the hardest thing for me right now is that I don't feel awful. I mean I feel bad at some point during the day, every day, but it is kind of normal and I'm used to it. So I hate to do something so drastic as removing my colon...you know what I mean? Anyway, thanks again everyone and Merry Christmas!

Hi,

I've had UC for 20 years now. I've tried many treatments natural and conventional with varying success. I'm currently in remission but I had a short flare a few weeks ago. I'm currently on imunosuppressants and have been for the last couple of years.

During my recent flare, I found an article about apple cider vinegar. There was a study done on mice which found that apple cider vinegar can improve symptoms of UC in mice, so i thought, why not try it.

I started taking a very small amount of ACV with water first thing in the morning and last thing before i go to sleep. The amount i take is basically just enough to cover the bottom of the glass and then i fill the rest with water and drink it. I use organic apple cider vinegar with 'mother' in it.

I found that 3-4 days after taking it, my stools went back to normal (which was a huge surprise after having loose stools for a few weeks) and i stopped losing weight. The other thing i noticed was that I had hardly any gas or bloating.

I've been taking it since and I'm finding that my symptoms are just about gone and that I'm much less sensitive to what I eat.

Apart from apple cider vinegar, I try to eat mainly organic food, I stay away from high fiber, I also avoid milk and cream but do eat butter and cheddar or tasty cheese. I found that spicy food can also give me problems.

I hope this helps someone. It's very easy and cheap to try and should make a difference within 3-4 days.

A doctor just prescribed me fluoxetine (Prozac) thinking that this will help my anxiety about my colitis which will maybe calm down some of my symptoms. Has anyone ever been on this and was it helpful or hurtful?