Loossing the will to live.

I have never posted on a UC forum before so this is my first time. I was diagnosed three years ago and ever sense then it has been roller coaster for me. I am 29 and a mom of four and not having the energy and dealing with severe pain really makes it hard. The last five months have been hell for me. I have been in a constant flare and I have tried so many things such as juice fasting which caused more pain and bleeding and the raw food diet which did the same thing. I am to the point now that everything I eat goes right threw me. The pain of having a bowel movement is excruciating and after words I am left in pain and locked up inside where I can't stand up straight. I feel like my whole insides are on fire. I don't know how much longer I can do this. I was hospitalized a couple of weeks ago and they got my bleeding and cramping under control and sent me home with prednisone which caused me to retain so much water that I couldn't even walk so I stopped taking it. I have a colonoscopy coming up with a GI doctor in the next couple of weeks but I don't know if I can wait until then. The pain is just too much. I hurt all over and I feel like I am on fire inside and not to mention the cramping. I have lost so much weight the last couple of months I am down to 80lbs. I am thinking about trying the GAPS diet but I am not sure if I have the strength to do it. I went gluten free a year ago and dairy free several months ago and eliminated all processed foods from my diet but it does not seem to make a difference. I have read of people healing their UC with the raw food diet, juicing, and the paleo diet but why can't I find some relief. I don't mean for this to be so depressing but living in constant pain and having four young kids is really hard to deal with. I want to be active with them and be a part of their life but the pain keeps me in bed so much of the time. My hubby has to do so much after working long days and I feel so bad for him. I don't want to put them through this I want to be healthy and enjoy my life while my kids are still young.

Brenda

What meds are you currently taking for your UC? How much pred were you taking each day?

I'm sorry you are suffering so much, Brenda! Have you been on any other meds other than prednisone?

I am not on any meds at the moment and they had me on 40 MG of prednisone. I was recently in the hospital for four days because of the colitis and am headed in to do another colonoscopy in the next couple of weeks. I don't have insurance and that has made it hard to get the care that I need. My Doctor has done the best she can and hopefully this GI Doctor that I am going to see will be able to help me get past this. I was on a tapering dose of prednisone a couple of months ago after going into the ER and after the taper the flareups came back. I don't like the pridnisone but it did work. I don't want to be on drugs I want to be able to use more natural ways of dealing with this. Does anyone here have some ideas of some natural ways or does anyone have experience with the GAPS diet? My flareups have never been this bad the past three years and this one gets better then worse better then worse back and forth it is exhausting.

That is why I came here because I don't want to give up I need support from others that know what I am feeling. I have thought about surgery and would like to hear from others how it is helped their lives. I don't want to take drugs that suppress my immune system or have all these side effects. So I guess I am looking for alternatives. It is not easy for me to come here and pour my heart and soul out to people I don't even know but sometimes we have to ask for help. I love my family dearly and I want to be around a very long long time.

Brenda,

Welcome to the forum.

Glad you found us, although I wish it had been under better circumstances.

I am so sorry about how much pain (physical and emotional) you are experiencing.

UC is a tough disease, both physically and emotionally, and can take its toll.

Like the others, I am very concerned at the level of pain you are now experiencing, along with how little you weight.

As pro-natural remedies as I am, I don't think this is the time to take that leap for you IMO.

You need to be seen by the ER or Gastro sooner than later, very soon - because it sounds to me like the levels of pain, cramping, symptoms you are having might be indicative of a much more  serious situation than just a flare, and I am very concerned that you might not be getting the care you badly need.

IMO, Once you get put on the proper meds, whatever they might be, so that your levels of pain, cramping, and symptoms are fully diagnosed and handled, then you can take the steps to explore other natural protocols, diets, supplements  - and even start them once you are at a more stable point.

I feel for you, and hope that you get some good gastro care to get you into a better place.

Let us know how we can help. Know that you are not alone in this. We are here for you.

Sending you a big hug.

 

Brenda- I was flaring this bad this summer, and was doing raw veggie juicing and it did not help. It made my symptoms so much worse :(. I would stop it immediately. Also if you want to do something like that try chicken broth instead. I ended up on the hospital from that. Ended up on prednisone which saved my life.

But yeah so sorry :( it will be ok you just may need to use drugs at this point, after that you can play with diet and see what works for you I would say. Surgery might not be a bad idea too if nothing is working :/ so sorry try to keep your head up I know how you feel tho, I'm sure we all have been there before on this forum. Hopefully we can give you support and help through this difficult time

Well, mommie, it looks like you are getting the support you need. I will pile on and say that you need to use the medications. You don't necessarily need to use the ones that modify your immune response, but for now you need to do a rescue plan to get you healthy again so you can take care of yourself and your kids.

If you are unwilling to go back onto steroids, tell your DR you want to go on Total Parenteral Nutrition. This is a liquid, predigested medical food that will give you calories and keep your bowel function minimal, allowing time for healing. It will taste awful and you may need a nasal gastric tube. It will probably be expensive also. Or you can go back on pred for cheap and get better. Never mind the water retention - is that really so awful that the alternative is death??????

While you're on prednisone you should start taking a generic mesalamine like balsalazide. This is inexpensive and effective. You should also use a generic mesalamine enema to treat your inflammation from the bottom end.

{{{{{HUGS}}}}} This will get better.

Those of us with ulcerative colitis have a huge advantage over those with Crohn's disease. Surgery is considered a 'cure' for UC. Here is a happy ending I found on the Ostomy forum. This posting is from a medical doctor who has tried everything.
www.healingwell.com/community/default.aspx?f=33&m=2558355

Hopefully we will be able to end our symptoms without surgery, but I think it is nice to know that there can be a happy last resort. For me it helps to relieve some of the pressure.

You asked about an anti-inflammatory. Fish oil is a good anti-inflammatory. You asked about GAPS diet. The GAPS diet is a modified version of the SCD diet. Many people here have been helped with SCD. But I agree with Richard who said "While diet can be a useful adjuvant therapy, when UC is this bad it needs to be treated medically". Rectal meds such as Rowasa enemas are very effective.

Diet and supplements did not END my flare. But once my flare ended then diet and supplements are what keeps me in remission. Diet for me was not the SCD but avoiding gluten and some other specific foods that I learned through trial and error. My major supplements are probiotics. But I think your priority should be ending the flare. You can talk about maintaining remission later.

Post Edited (BabeintheWoods) : 11/11/2012 5:33:23 PM (GMT-7)

My advice is to try and get things under control with meds and once you get it under control, do a whole over haul of your diet. It's very hard to do any good to your body when it is fighting inflammation, especially severe inflammation which is what I suspect you have!
Diet DOES help, if it doesn't help your colitis, it helps the rest of your body stay strong and you need that. My philosophy is if we can make the good changes in ourselves when we are healthy, then our chances of HEALING (I'm not saying curing) what is ailing us are much higher.
I personally went through a HORRIBLE flare back in August. I was stuck at home basically and in a ton of pain. I was put back on Prednisone (started at 40mg) and ordered a colonoscopy in which I had last week. My results were what I had feared. My UC has spread to my right side (it's microscopic inflammation but....it's inflammation and I want it gone!). When I started to feel better on this round of Pred I cut all gluten, all sugar, all dairy out of my diet. I eat fresh roasted or steamed earthy veggies, fruits and a lot of coconut or hemp milk. I can't tell you I am 100% healed but I do feel good! Much better than I was and I feel like I am only getting better!
I take a really good probiotic (for me!) every day and I keep a log of everything I eat. I try to rest as much as possible, keep good thoughts with me and just keep pushing forward and staying here and now.
I will say many prayers for you! :o) I hope you find the relief you need. I'm sure many of us can relate to your pain.....this disease is seriously the devil.

Somedude, do you think age has anything to do with acceptance? Or you think it's personality? The nurse practioner at my asthma doctor's office said her husband had surgery and a bag within nine months of diagnosis. He was in his late sixties, loved to golf and went through all the medication options. He didn't want to miss any more time on the golf course, so he had surgery. It doesn't seem like the amount of time people have the disease determines when or if they have surgery.

Mommie, why don't you give the Spinach/ Sunbutter diet a chance? It has absolutely put me in complete remission. Give it a couple of weeks.

The timing has to be right for you, and you have to be 100% certain of your decision so that you don't always second-guess yourself and ask, "What if I'd just tried ____? Would I still have a functioning colon?" If and when surgery is the right option for you, you will know it. No matter how attached you are to your parts and pieces (as I was), there comes a point when you just say, "Enough is enough!" (or in my case, "CUT THE MOTHER F__ER OUT!!" while crying in the shower) and you just honestly cannot tolerate one more day of UC pain, meds, side-effects, etc. (I also had an awful experience with Imuran, by the way.)

For me it was that in addition to running out of options, I was literally running out of energy/motivation to keep going - my body was visibly deteriorating from the effects, and emotionally I just couldn't take any more - and I decided that if I only had one tiny ounce of "umph" left, I was going to use it to get through surgery.

Even though I am mid-process, I will say that I am right in between my j-pouch construction and my take-down, so I am living with a temp ileo (a.k.a. "bag" - which by the way, does pretty much suck but is admittedly do-able and at least allows me to live my life)... and I feel better/healthier than I have in years, even with any bumps along the way. Within a week of surgery I started eating like crazy and gaining weight back. Overall recovery has gone great so far, and I'm glad I did it.

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