I'm feeling pretty lost

Hi there, very new to the forum, only a year and a bit since my UC symptoms started, and I am feeling very very overwhelmed right now! In the time since my symptoms started I have not gone into remission. My dr has had me on maaaany meds/suppositories, none of which have made me feel any better (and a few of which made me much worse!). I've been hospitalized twice, once for three weeks in Oct/Nov and once for four days in Dec, the first time being due to the UC itself, the second time due to pancreatitis that I developed as a result of Imuran. I have had four doses of Remicade, and was initially feeling OK about the results. I was seeing some progress, albeit slow progress, but I was starting to feel a bit better and was happy about it after the first two doses (given one week apart). Now after the last two doses though, I'm starting to see a pattern of feeling 'UC better' but with a lot of Remicade side effects for the first two weeks, then about a week of feeling pretty darn good, and then the UC symptoms come back full force. My dr told me if Remicade didn't work for me he was going to strongly suggest surgery given my terrible history with the meds. I guess I'm wondering how long I should give the Remicade?

I'm feeling pretty low, after a year of all these really strong meds and poisoning my system with Remicade my quality of life is still nill. I can't hike, ski, swim, travel, go on field trips with my kids....nothing that keeps me out of the house and away from the bathroom! And I'm scared of food! Since I've always struggled with keeping weight on no matter how much I ate, not being able to eat large amounts is getting dangerous for me. I'm 5'7" and only about 100lb. I'm tired and worn down all the time, I have no energy, and honestly I'm miserable to be around! It's a struggle to act happy and upbeat for my kids. I'm terrified at the thought of surgery and colostomy bags (I'm only 30!) but at the same time wondering, do I just suck it up and opt for the surgery rather than keep trying things that have done nothing for me in over a year? I'm so lost

have you tried probiotics yet? i'm a big proponent for surgery, as i feel it has given my son his life back and all the meds are crazy scary. but most on here have found probiotics to be very useful. if i were in your shoes, knowing how demanding being a mom is and how dangerous the meds are i'd definitely opt for surgery.

If you have low energy the best thing to eat is protein and good fats. There are quite a number of vitamins in meat and good fats (olive oil, coconut oil and others) are also good for your colon and body. Don't take too much oil at once however since it can lead to D.

Diet modification is hard to do especially when you're feeding a family but here's a few ideas for you to try:
-yes as suggested by CC try probiotics. Helped me a lot and many others here
-eat meat and fish (especially salmon) as much as possible. Red meat does slow down the digestive system but for me that was a good thing
-add some cooked spinach into your daily food. Start with a tablespoon daily and work up from there. I used to add it to my daily omelet now I add it to some chicken broth as a light soup
-chicken and turkey broth (no additives-homemade if possible) does wonders. Drink daily if possible.

Here's what to cut out if possible (can be done as much or little as you are able):

-all sugar except honey
-try removing all dairy for a week and see if your symptoms get better
-the following week try removing all gluten (bread, crackers, cake, etc) see if symptoms get better
-try removing sulfited foods for a week and see if symptoms get better (search on this forum for "sulfite" to get a list)

I understand your concern about weight loss, when I was in the worst flare I was underweight. But if you heal your colon it will be able to process nutrients better and you'll get better.

WATER-very important to drink as much water all day long as possible. It makes a BIG difference.

Surgery is not to be feared but I'm doing everything I can to avoid it. I've gotten so much better in the last 12 months that I think it is off the table for me.

Best of luck.

xmommy - The decision of if/when to have surgery is yours.  I tried many meds (skipped the 6MP/Imuran though) and ended up at Remicade every 4 weeks but many of the diet modifications I didn't try.  Like you - I was afraid of food and had a very small list of foods that I could/would eat and I read labels like a pro because HFCS and all fake sugars affected me.  I got to the point where pred was the only thing working for me and my next med options were to try to get approved for Humira or try to get into a trial.  My surgeon recommended surgery (he had offered since diagnosis - now he was recommending it).  I decided I had had enough and I wanted my life back because my quality of life was horrible.  I had to cancel or not go to so many things in the 6 months before surgery that I had no life.

Have you had your iron levels checked and a basic CBC run?  I'm guessing you have if you are/were on Imuran.  I had to get iron infusions and even a few blood transfusions during the year before surgery because I became severely anemic which led to an extreme lack of energy.

I have jpouch so I had a temporary ileostomy between surgery 1 and surgery 3 but now am ostomy free.  I made the decision to go through all surgeries to get my jpouch because of my lifestyle and how "easy" it is (everything's relative).  I know that if something goes wrong and they can't fix it, I am ok with going back to the ileo but I love my jpouch.  I have traveled, gone skiing, tried snowboarding, worked 18 hours days following a disaster at work, rode my motorcycle on a nice long trip, attended concerts, movies, races and parties without having to worry about where the bathroom and backup bathroom were and if anyone was in them.  I eat almost anything (and my weight gain of 30+ lbs proves it - oops!).

One question my family asked me before my surgery was how would I feel if a cure was found 10 years, 1 year, or 6 months after surgery.  It's a good question to ask yourself.  Another question to ask yourself is are you willing to try everything you can to save your colon and avoid surgery?  Some people are attached to their colon and would like to save it (it does serve a purpose when it's working correctly) but you obviously can live without it and others want to avoid any surgeries if at all possible.  It's a personal decision and one that you have to live with for the rest of your life.

try to eliminate all dairy from your diet...do for a week or two. see what happens. along with that do not drink any kind of soda. i did..and im feeling so much better. cook your own foods. stay away from fruit and raw veggies until you feel better. hope this helps...

Only you can make the decision as it has to be when you are totally ready. My husband suffered over 5 years and even before then but it was definitely liveable before it flared badly.

He just got "sick and tired of being sick and tired" after trying everything medically available.

Had his surgery 7 weeks ago and while in the hospital he mentioned to the GI Dr maybe he should have listened to him and did this a few years ago. The Dr told him -- you were not ready then -- you had to wait when you felt it was the right time for you and you exhausted all the different resources.

Had he and I fully researched what it was truly all about and delved into it, maybe he might have done it sooner. Who knows. Once he wrapped his head around it, accepted it he made the decision. The surgery did not go as he had hoped....he wanted a shot at the j-pouch but it was not meant to be for a lot of very good valid reasons. He is ok with that, accepted it and is doing fine. I am so proud of him and so happy that we have this 2nd chance at being able to enjoy living once again.

Good Luck!

Hi xmommy,

Please don't give up.  I started with colitis at 15, and I wasn't properly diagnosed until 32.  I'm 34 now.  Anyway, I still have my colon.  I think you might need a new GI doctor.  My first two GIs didn't quite understand what was wrong with me, and I had periods of being okay, but I was never quite well.  I had anemia, but no doctor wanted to put me on iron pills.  Also, the doctor I got at 28 said I had diffuse patchy colitis, but my new doctor said that didn't make sense.  Anyway, what I'm trying to say is perhaps you need a new doctor.  At 31, I finally found a wonderful doctor from the University of Michigan who has about 50 years of experience in helping people with this disease.  He said I have inflammation just in the rectum and he put me on Canasa suppositories which have REALLY helped because that was the part of my body that was bleeding like crazy.  Also, he put me on Iron pills, and I'm not anemic anymore!! 

I really hope you feel better.  I feel so bad for you.  Please try a bland diet and keep trying to eat.  When I couldn't eat much I had to stick to bland foods: cream of wheat, white bread, chicken, rice, potatoes, popsicles, jello, boiled vegetables like carrots, green breans, and asparagus.  Don't give up!  You may need an antidepressant.  I had to get on one, but I don't regret it.  Our disease can definitely cause depression, and if you combine all of our symptoms with poor nutrition it is NOT surprising that many of us are on antidepressants.

Hang in there!  Things will get better :) :)

God Bless

xmommy i was 29 when i had surgery. And i felt like i was 80. I have had a bag for almost 4 years now, and it hasn't stopped me from doing one single thing, i'm still wearing the same clothes. I even have a pair of pants i got in highschool that i can still wear, lol.
One of my biggest reasons was because of my son (he was 1 when i decided) and it occured to me that i wouldn't be able to sit in car line or go to a tball game or a field trip with UC. I couldn't even take him to the grocery store. Now we go everywhere, i go on all the field trips, i volunteer at school, i do all the mommy stuff.
Plus all the fun adult stuff, lol. I go to clubs and go dancing, we go out to eat, we go to parties.
We just came back from a cruise, we are fixing to go to disney.
All those things because i have a bag!
Surgery is scary, and it's a big decision, but when you are miserable, and you have no quality of life, that scary surgery doesn't look that bad. at least to me it didn't
good luck!

Wow, thank you everyone for your thoughts, opinions, kind words, etc. I have a lot to think over and big decisions to make, and it's so nice knowing I'm not the only one having gone through the confusion :)
In reply to a couple of things, I am on a high protein diet, mostly through powders since I absolutely cannot handle meat of any kind except fish while I'm sick like this, and I'm on and off iron pills. I get blood work every week so it's closely monitored as I've had two blood transfusions for really low hemoglobin levels. I'm really curious about the spinach...I do each spinach almost daily, I use baby spinach rather than lettuce in salads and such, does anyone know if raw spinach has the same effect? Or does it have to be cooked?
I have tried probiotics, both naturally through foods and through supplements. My dr has actually published articles on his studies of using probiotics so he's a firm believer in them. I'm extremely happy with my dr...UBC, Uof Toronto, and Harvard educated, now a professor of med at UBC and a recognized expert in IBS...not to mention that of every time his name comes up in coversations with other drs or people with UC history, I get the same reaction...'Wow you're lucky to get him he's amazing!'
I was wondering about the permanent ileostomy and why that could happen? Do you know before you start the surgery process if you'll be unable to have a j-pouch? The thought of starting the process and then finding out I'll have a bag for the rest of my life is terrifying to me. I know just like anything else I'd get used to it, and hearing everyone say the bag is so much better than feeling ill....well logically it makes sense, but emotionally I'm just not there yet! I'm trying to read everything I can about UC and the options but there's so many different opinions and recommendations and things I just don't understand in the medical articles...I find it far more helpful to hear it from people with real experience!
Thank you all again so much!

Before you go into surgery, you definitely know whether you are going for a j-pouch or permanent ileostomy. However, sometimes a surgeon might find something during the surgery that would rule out a j-pouch. So there might always be the chance of going in for a j-pouch and coming out with an permanent ileostomy. I don't know how common this is though. Definitely something a surgeon could answer at your consultation.

I actually opted for a permanent ileostomy even though I would have been a candidate for a j-pouch. I liked that the outcome of the permanent ileostomy was more predictable and felt like it would fit in with my lifestyle better. Though my surgeon said most people go for the j-pouch, he had lots of stories of people who chose permanent ileostomies too. Both are good options, but living with an appliance is definitely not the end of the world. In fact, it has been the beginning of a great new life without UC for me. The appliance is pretty easy now that I have gotten used to everything and am not so overwhelmed by the newness of it all.

also forgot to add i have been on the drug CORTEF (hydrocortisone) for low cortisol and that does not even put on weight. so that makes me think that i am not absorbing my meds and nutrients. had right adrenal gland removed last sept. that had a benign cyst on it. U OF M needs to hurry up before i waste away to nothing.

Research your meds and make necessary changes
Eat whole unprocessed food
Get regular full sleep for a month
Anti-inflammatory diet ( choose one )
Targeted supplements psyllium products, vit-d, iron, curcumin etc.
Try spinach, sunflower seeds and SCD diet - strong following here for each of those.