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Posted 11/18/2012 11:21 PM (GMT 0)
hi

i am two weeks out of the hospital. i have had ibs for years. what my GP thought was a stomach bug and what i thought was a bacterial issue in my colon turned into UC. i was in the hospital for 9 days because for 4 or 5 days i was just expelling liquid blood and having awful pain. i am going through the most stressful experience of my life--i am getting a divorce, my husband is mentally ill and still living in the house, my beloved grandmother died in march. i am going to have to pay my 55 year old husband--i'm 35--alimony. since february it has been a nightmare. before i got sick i was hanging on by a thread. i am a school teacher--high school english--and there is plenty of stress in my job too.

anyway here i am. i know about ibd because i have researched ibs for years and naturally i was tested for ibd. but i have some questions and i would appreciate any input.

i do smoke--5 cigarettes a day. before the uc, i ran 3-4 times a week and ate very healthy. i was very strict about my diet. i am on anti-depressants and anti-anxiety meds--have been for years.

i am on 40 mg prednisone and 1600 mg asacol 3 times a day. and bentyl 20 mg before i eat. i also have an ambien script--which i try not to take unless i have to. i also take a multi vitamin and calcium. my iron levels are fine. my diet consists of homemade pancakes, 2-3 hardboiled eggs a day, applesauce, egg noodles, jello, saltines, chicken, white rice, mashed potatoes, 2 bananas and cream of wheat. i am maintaining on this regimine right now. i have cut way back on stress--i used to spend 4 or so hours doing school work on the weekends. not this weekend. my mom is helping me with my house and my dad is staying over a few times a week to keep my husband in line. i live under lock and key in the upstairs. literally i wear the keys around my neck. getting out for me is not an option--i am paying all the bills and i don't have extra money. my parents' house is too far of a commute.

i tried yogurt yesterday---before uc--yogurt was my go to. i ate three servings a day. it gave me spasms yesterday. i am terrified of trying any new food. but i am worried that this diet is not nutritionally sound.

first, how does the doctor know it's uc an crohn's? i don't want either, but i'd rather have uc. he did a sigmoid-osocpy (sp?) in the hospital and they did a contrast CAT scan. i--a worrier--am terrified that i really have crohn's and not uc.

two, i am so bloody tired all the time. i cannot imagine running right now. and getting through each school day is so hard. is that normal?

three, my md is going to wean me off the prednisone and i am so afraid that i will have symptoms again---if i do he will put me on an immunosuppressive. i am also worried about being on the prednisone. it creates havoc with my sleep and anxiety. and i don't want to get fat. although i have lost 7 of my 125 pounds in the last 3 weeks. and then i worry about going on an immunosuppressive too. i just worry.

four, all the rules that went with my ibs are out the window and i am trying to find a new normal. i have never been so sick as i was in the hospital--yet i feel guilty for cutting back at work and asking for help. like i am being lazy.

five, how do you deal with the diet---i am fearful of any new food, but i know that i have to branch off my low residue diet. my md said to slowly.

i already was going through a whole identity change and now i feel like i am uc girl.

any and all input is appreciated. thank you.
Posted 11/19/2012 12:28 AM (GMT 0)
Welcome to the forum.

Glad you found us.

I am so sorry about your recent UC diagnosis. UC is a tough disease to deal with.

Sounds like you're on quite a roller-coaster ride of stress and anxiety, as you probably know it's so important to try and get both under control with UC.

Did you doc take any biopsies?

You mention bacterial infection, did they do any stool tests?

Here's a good website that tells you the differences between UC and Crohns:

http://www.columbia-stmarys.org/Crohn_vs_Ulcerative_Colitis

As to your questions:

1) They can do a Prometheus test - but I don't know about its accuracy. It's a question of symptoms and what they see on the colonoscopy, and of course, having a good GI.

2) Excessive fatigue is normal with IBD.

Has your doc checked your blood serum levels of Vitamin D3 and B12?

3) Make sure you do the prednisone weaning slowly.

4) Don't be so hard on yourself. YOu're going through a rough time, and you need to go easy on yourself so you can heal. As far as diet is concerned, are you sure the one you detailed agrees with you? I know personally, I couldn't handle half of what you are eating. Many of us have problems with gluten and dairy. I note you mentioned having yogurt causing major problems for you.

5) Personally I don't agree with low residue, partially because it really doesnt' address all the problems.

Many of us here have done SCD, Paleo or Gaps.  IMO, Paleo is the best one because it's an anti-inflammatory diet, but you'll need to research all of them to see which fits your needs best.

Now I have some questions for you:

Are you on any supplements?

Taking any probiotics - these are very important.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 11/19/2012 1:50 AM (GMT 0)
thank you for responding.

i know i got the uc because of the stress and i really trying to rest more and let other things go because i know that if i don't--i will be sick again.

i do have a very good doctor. they did biopsies with the sigmoidoscopy. and he also did some kind of genetic testing. although we didn't talk about that at our last appointment. and yes they did several stool tests.

thanks for the link--i did see that link before, but it looks like a good resource. i feel like my symptoms are complicated by my ibs---i never had D with ibs--that began with uc. but it's hard to tell what is ibs and what is uc sometimes---everything i ate practically for ibs is out the window with uc---fiber, citrucel, whole grains....

i don't really know anything about the prometheus test--he did lots of blood work.

it's good to know the fatigue is normal. my stool and output is almost back to normal and i am happy about that. a little blood but nothing excessive and no real cramping and pain.

i don't know if my b12 or vitamin d levels were assessed--i used to take both those supplements. i GI said to just stick to the multi vitamin---although i'd really like the take the b12 and d.

the doctor is going to wean me off the prednisone over the course of a month.

i will check into those other diets. it is just so overwhelming. i knew what worked for my body before the uc and now it's all different.

i do take probiotics--health food quality--not just what one would get in a grocery store.

thank you so much for the encouragement and detailed reply--i really appreciate it. i am just feeling so overwhelmed, frustrated, scared, disappointed--because my ibs was under control after years.

and thank you for pointing me to your link.

it's just that before the uc--i had NO problems with dairy or gluten. i wouldn't just suddenly become intolerant, would i? expect i guess if the uc--or my colon--can no longer handle those things.

you said you couldn't have of what i eat--why? it's the diet they put me on in the hospital. i realize everyone's diet is different--but what am i eating that would bother you? just for comparison?

thank you again!
Posted 11/19/2012 3:17 AM (GMT 0)
Sorry you are under so much stress. Stress seems to be one of the triggers of IBD for some of us. Others received their first symptoms after a course of antibiotics. Most probably have no idea where their IBD came from.

After two colonoscopies with biopsies, my doctor still has no clue whether I have UC or Crohn's. But he said it doesn't matter, since "the treatment is the same for both." But it mattered to me, since supposedly UC can be "cured" thru surgery. But I am relieved that my inflammation is confined to my colon and has not spread to my small intestine. If it hasn't spread by now then in most cases it will remain confined in the colon.

My IBD symptoms were about as bad as it gets during my last flare. Full of extraintestinal manifestations and copious amts of bloody diarrhea, but I still consider myself one of the lucky ones because it didn't last forever. I have been in remission for 2 1/2 years and hope to remain there.

I know you say that you used to be tolerant to gluten and dairy. I drank milk my whole life but about ten years ago I had to switch to lactose-free dairy. And I could eat all the bread, wheat, and barley I wanted until about three years ago when I suddenly became intolerant. (Don't go by tests, this forum is full of people who tested negative for gluten intolerance but later found that gluten causes problems for them.)

Food tolerances and allergies seem to change during one's lifetime, at least it did for me. Like you, I always tried to eat healthy for years with generous amounts of cruciferous vegetables, etc. Now I find that cruciferous such as kale and broccoli trigger flare symptoms.

I recommend a food diary or journal to isolate any triggers. Diet is different for everybody but gluten and dairy are the usual suspects. You can still have your homemade pancakes. But for 3-4 weeks make sure they are buckwheat pancakes (gluten free) to see if your symptoms lessen. Otherwise you can move on. Or you could one of those who cannot tolerate any grains at all.

So far I have been able to maintain remission by monitoring my diet and taking supplements whenever I eat something bad to cause symptoms. You need to get into remission by any means necessary. Once your flare ends then you can try maintenance meds and possibly diet and supplements to maintain remission.

This forum is excellent for pointing out effective ways to help remission that are not always explained by doctors. Rectal meds, especially mesalamine enemas, are very effective for many. For some reason many doctors do not mention them. Probiotics are probably the most popular supplement. Fish oil and getting your blood levels of vitamin D checked are also popular. Our individual signatures indicate what is effective for each of us.
Posted 11/19/2012 7:07 AM (GMT 0)
Welcomeeeeeeee :). Sorry you have been diagnosed but since you gave this us the place to be.

I think sofia and babeinwoods have answered everything. Just wanna say be careful and slow with the prednisone.

I would like to add one thing. KEEP RUNNING. While it is true from whats going on that you will be fatigued whats also normal is muscle atrophy. Youve been laying in the hospital with your muscles doing nothing. Get some minor exercise going and get them back to normal your fatigue should decrease)
Posted 11/19/2012 4:30 PM (GMT 0)
guenever

To answer your questions:

1) you said you couldn't have of what i eat--why? it's the diet they put me on in the hospital. i realize everyone's diet is different--but what am i eating that would bother you? just for comparison? - - my diet consists of homemade pancakes, 2-3 hardboiled eggs a day, applesauce, egg noodles, jello, saltines, chicken, white rice, mashed potatoes, 2 bananas and cream of wheat.

Personally, I am gluten and dairy free, so any pancakes, egg noodles, saltines, cream of wheat - all gluten containing would be problematic. As far as eggs are concerned, I don't tolerate egg whites, but do great with egg yolks. My colon doesn't like bananas. Chicken, rice, potatoes all are ok for me, but  not in that combination. I adhere to strict food combining rules which enables easy digestion.

2) why? it's the diet they put me on in the hospital

IMO, alot of info out there is mis-information - yes even from doctors and the hospitals.

Many doctors don't believe in probiotics, and yet there are usually very helpful and in fact critical to healthy intestinal flora. There's plenty of data out there that shows people in general, and in fact, IBDers have problems with gluten, yet you won't find too many docs telling you about that. And then there's the great hospital food they serve up in the hospital, even if you aren't there for IBD issues, it's certain to contribute to major digestive/IBD malaise.

3) i do take probiotics--health food quality--not just what one would get in a grocery store

Good for you! Was it suggested by your doc, or just your smart thinking?

BTW, which ones are you taking? There are some especially made for UC. They are VSL #3, and if you can get your doc to give script for them as in VSL #3DS (900 Billion active cultures) you might only have a small copay.

As to the supplements I was referring to, in addition to whatever deficiencies might be revealed by your blood work in terms of Vit. D3 and B12, L-Glutamine amino acid powder is great for colonic repair, and slippery elm powder is good too and IMO works better than the mesalamines without all the side effects.

But do your research.

Let us know how else we can help you.

 

Posted 11/19/2012 11:30 PM (GMT 0)
i SO appreciate all the feedback and info. i want to carefully got over this info and respond to it. i am just too tired tonight. but please don't think i am ignoring all this great info! THANK YOU so much! this is such a great and comforting resource for such a scary time.
Posted 11/19/2012 11:52 PM (GMT 0)
Hi Guenever. I just want to say hang in there. It sounds like you have alot going on. Don't feel bad about "being lazy" because if you don't "be lazy" then you just keep being sick. You really really have to take care of yourself. It's hard...I think alot of people on here are kind of "go getters" - they like to do things, be successful, be self-sufficient, find out as much as they can, and take control. You need to be lazy right now (as in..don't commit yourself to ten million activities). Working out some can help - but if you find that you are consistently completely exhausted the next day you might want to back off some. It sounds like you have a really supportive family - which is good. Best wishes!
Posted 11/22/2012 3:44 AM (GMT 0)
BabeintheWoods--i am glad you're remission. that gives me hope. because of my ibs i am very good at keeping track of what does and doesn't agree with me. with uc there are just so many thinks that don't agree with me that used to. i hope i haven't developed a lactose issue. i can eat pancakes with milk in them. i am hoping that eventually i will be able to tolerate yogurt and cheese again. my doctor says i'm not flaring--but healing. i usually only go 1-2 times a day and that's formed. i consider myself very lucky.

yesterday was a bad day. i just didn't feel well. i took today off and rested and that helped a lot. i think if i were gluten intolerant i wouldn't be doing this well.

the trick will be when i am weaned off the prednisone--which i hate because of the sleep issues and anxiety. but it is helping me maintain. i have gone back to my vitamin supplements.

i tried a hydrocortizone enema in the hospital--don't like them at all. ugh. avoid at all costs. i just hate them and in the hospital the enema brought on more episodes.

Madcat25--i want to keep running--i just haven't the energy. i feel like right now between the uc and my barely tolerable living conditions i need to conserve my energy. i can't even use my elliptical because it's downstairs where my soon to be ex is.

InSoFlo--it is so weird how everyone with ibd is different. i am maintaining on what i eat--1 formed stool a day is like really normal so i figure what i am eating is working. i just miss my dairy.

probiotics---i have been taking them for a long time because of my ibs. UAS Labs, Probioplus DDS, 10 Billion CFU/g, 100 Veggie Caps is the probiotic. i will ask about the perscription ones. but my GI doesn't seem so hot about them. thanks for the tips on supplements and i will research them.

i know about misinformation--the dietician in the hospital was useless. but i was lucky to get a very specific menu in the hospital that agreed with me.

ActiveUCer-i like your name :) it gives me hope. i took today off and felt better. yesterday was a bad day--but i know why. i got myself worked up about the divorce and everything. i have always been tired because of my anti-dep and anti- anx. meds--and pushed through running, but right now i need to conserve my energy.

my family is my greatest blessing.

and for the first time in my life i am putting my school teaching secondary. my health has to come first.

i just want to get better and take care of myself and avoid surgery at all costs.

thank you all for your support and ideas. they mean a lot! i hated my ibs--but i will take it to my ibd any day. of course i still have the ibs.....

i used to eat almond butter on whole grain bread---i should probably just eat white bread and try the almond butter, huh?
Posted 11/22/2012 4:02 AM (GMT 0)
i think if i were gluten intolerant i wouldn't be doing this well...
the trick will be when i am weaned off the prednisone...
i should probably just eat white bread...

Prednisone is very powerful and effective at hiding symptoms.
I believe everyone with IBD should stay away from gluten for a couple of weeks to see if your symptoms improve. JMHO. Do what you like.
Posted 11/22/2012 5:05 AM (GMT 0)
God i can't handle be gluten and dairy intolerant. i just can't. it's midnight. i'm tired and can't sleep. i will be up at five and tired because of the prednisone. i hate this f----- disease. sorry. just a moment of anger and frustration. my doctor says to branch off on foods--try others. but he isn't the one who will suffer in the bathroom.

we'll see. forewarned is forearmed--if i come off the pred. and my symptoms come back i'll try the gluten free thing....

sigh...

what i'd like to do is eat a pizza, french fries, and a strawberry milk! lol
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