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Ulcerative Colitis
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Posted 4/30/2012 11:22 AM (GMT 0)

A Warm Hello to All,

I am "new" to this forum and hope to write an intro later today.

I need to ask for assistance.  I hope you will share ideas with me.

I have had intermittent issues with bleeding colitis/proctitis over several years now.  Some of this seems to run in my family. I had lost one family member, my then 43 y.o. brother to ulcerative colitis which had advanced to peritonitis and then to septic shock. I understand the serious nature and my heart goes out to each and everyone dealing with ongoing challenges.

I had been "ill" with severe episodes of explosive D for approx. 3 weeks, after having had what I had thought was a GI virus.  However, this "virus" was severe and was going on and on for me, while others we better within 48-72 hours, some took a little longer.

For me, the prostration was totally debilitating. I had all I could do to just stay hydrated.  Everytime I had tried to eat anything, I'd become incredibly ill... upper GI nausea and lower GI explosions, lasting hours on end.  I have had intermittent episodes of colitis/proctitis, usually aggravated by use of NSAID meds for other autoimmune/inflammatory conditions, etc.  Yet, I saw no overt additional signs of colitis and/or proctitis which might alarm me. 

I had started a very restrictive diet, in hopes of controlling the explosive D, the nausea, the gut-wrenching cramping, etc.  I'd started to improve within the past two weeks!  I was very excited about this, still am!

However, this past Thursday night, I was up all night with additional symptoms which were more alarming and are reminiscent of prior GI bleeds.  I had started passing mucus, lots of it.  Just mucus, no stool. It did not look healthy at all.  All kinds of colors in this exudate, looking infected and also eventually showing blood.  It was as though massive amounts were suddenly draining from my colon. I was up all night with this.

Friday AM, I went to the emergent care at the local teaching hospital, as my doctor is not in on Fridays.  I wanted to get a jump on treating this; I did not think it best to wait until Monday.  I knew the hospital lab could tell us more and more quickly and had gotten there as soon as I could on Friday AM.

Luckily, the ER doc was bright.  She did an amazing job with helping me. She was very thorough. She put me on Canasa Suppositories, which have already helped me immensely. I am grateful to her for her knowledge, insight and her compassion.

I have to go on a trip this week!  I have to leave in two days!

I have to fly all day and then also need to stay at a hotel for 5 days before my return trip.

I have to stay on a restrictive diet.  I know I have to do this, as this is the only way, along with meds, that I can clear up a flare.

I get so incredibly hungry with this diet, even though I eat plenty.

I have to eat something every 3-4 hours.  I have to eat according to the initial phases of SCD right now.  (It works for me right now, along with the meds.)

I have to stay within these guidelines for now.  I want to be as stable as possible during the trip and during the seminar I am attending. I cannot miss this.  I have to attend and I have to obtain the certification... now. I cannot obtain the certification for another year if I don't do it now. I have to do it now; otherwise, I would drop out.

I think I can find appropriate food at the hotel restaurant.  If not, I will talk with the chef and hope to work something out. I will be there 5 days. 

I am eating bland meat ( baked or poached turkey, chicken) in small amounts.  I can eat some egg.  I can eat very cooked carrots, applesauce, squash, a little zucchini (so far).  I can eat some rice in small amounts.

I also can tolerate a specific rice-based protein powder and make a simple shake with that and with water (for now).

We will not have several breaks pers day in our training, so I will need to think of a way to eat something (snack) while staying on my dietary restrictions during this time. 

The seminar entails long hours, each day. They encourage snacks because of this; yet, I am having trouble finding snacks I can take into a seminar setting that fit within my current needs.

Any ideas on what to eat for snacks during the seminar hours?

Any suggestions on how to remain within guidelines while traveling on the plane, in airports?  

I am open to ANY suggestions about ANY aspect of traveling when in a flare, not limited to meals.

  

Sometimes, people with a lot of experience have some fantastic insights and suggestions.  I am deeply grateful for any suggestions!

My Very Best to All,

Hopeful Heart 

 

Posted 4/30/2012 12:37 PM (GMT 0)
Hopeful Heart-
I would avoid food served on a plane. It always causes problems for me.
If you look at the website cureforulcerativecolitis.com you will see a lot of information on food combining and natural supplements that can be helpful.

I plan to travel in June and will be bringing Starwest slippery elm powder to take in the morning, before going out to eat and at night before bed (to soothe my gut).
Will also bring some L-glutamine as I take it each morning in juice with my probiotics. I use Benebiotics but there are several good products available.
I never use NSAIDS....only Tylenol. I think over-using NSAIDS was one cause of my UC.
Looks like you are already on a pretty bland diet. I had to eliminate lactose and most carbs to get results. Can eat rice and chicken as fall-back items.
My latest take along snack is Welch's Fruit Snacks.
You will see from my signature that I use LDN. Have been using the transdermal variety since January.

If Canasa suppositories help, enemas may be of even more help. My GI says that supps don't get up far enough in the tract. They are a pain but seem to help most people.
I hope this info is of some help. Have a good trip...:-)
Posted 4/30/2012 1:03 PM (GMT 0)
When I was doing my teacher certification, I would bring a whole avocado and eat that for lunch. They had a cafeteria so I could open it with a plastic knife and dig it out with a spoon. I didn't want to risk eating cafeteria food since I was in a flare. On my last flight I actually wore depends just for peace of mind. Luckily I didn't need them.
Posted 4/30/2012 1:19 PM (GMT 0)
not sure if they are scd legal but my go to snacks are:

 

plain rice cakes with sunflower seed butter

apples, bannanas, chobani greek yogurt, chips in olive oil, unsulfured unsweetened mango (from trader joes)

 

i pack a cooler bag every morning to go to work with me with snacks and lunch.

 

i don't personally like lara bars but you might they are portable and may be scd legal

Posted 4/30/2012 2:37 PM (GMT 0)
Things like almond milk can be bought in an individual pack so that full of flavour and protein wich is good.
Soya milk also and you can chose chocolate flavour for taste. I used to work long hours in retail and god know those drinks saved me!

Any dried fruits or nuts if you can tolerate them. Packed in flavour, easy to buy anywhere and to transport, they react well to the heat of your pockets or bag! And they keep you full.

Have you ever thought about vegetables chips? usually they are lower in fat, in salt and better than regular chips for your gut.

I like pure coconut bars. In your natural food store they usually have dates bar (good but too dangerus for farts) and they have a compact coconut bar. They are delicious and i find easy to digest.

If you have a suitcase that you leave at the check in i think you can buy some bars and nuts. However i would check with the regulations but i know you cant bring anything on the plane. Mind you im canadian and living in england but i think regulations are similar everywhere when you travel.

I agree with the enemas. Might not be the right time for you to start them but please consider them when you come back for your trip. They are higher in dosage and go deeper in our track so your healing should be faster.

have a nice trip!
Posted 4/30/2012 3:14 PM (GMT 0)

I am so very grateful for your responses! :-)

Please do not be concerned if your suggestion meets SCD guidelines!

I can sort that out! I do not want to ask anyone else to sort that out!

Please make any suggestions you think reasonable! smilewinkgrin

ItsAlwaysSomething-  I had ordered gluten-free diet on the plane. Yet, I am concerned, as I need my food to be ultra-pure right now, no additives, etc. (I am incredibly sensitive to so many things, even additives/preservatives, etc.)  I have been reconsidering and also think it's best to not chance it at all right now!

Thanks for your supplement suggestions! :-) I am very open to all approaches. I currently use a few supplements, mostly for other purposes.  I may list them here; yet, also feel this list might be confusing to some, as it is not targeted for UC. When I add more supplements targeted for UC, will add them here on my sig.

I am very sensitive to so many substances. When I add a supplement or med, I must add only one at at time. 

Re: NSAIDs. Yes, they get me into trouble every time!

You'd think I'd learn! nono Had scared the heck out of me a few years ago when started a gushing GI bleed and was in the ER! shocked   A large area was bleeding.  I had gotten a little complacent about this over the past 2 months.  I also have other autoimmune/inflammatory conditions and had needed to do something about the inflammation. Took a few doses of an otc NSAID over the past two months, which is much weaker than the prescribed dosages my Rheumatologist has prescribed; yet, just cannot take them, period! Not even occasionally! skull (I had resorted to them when the inflammatory pain was excruciating. My docs already have me on morphine for pain; yet, that will not address inflammatory pain well at all, in my own experience. I have used compounded topical NSAID in PLO gel in the past and had to be careful that did not get too much into bloodstream. I could tolerate that much better than taking NSAIDs by mouth, for sure!  Yet, caution is still needed with topicals, for sure!)

Thank you, ItsAlwaysSomething, for your kind response! smilewinkgrin

 

Kdragon- Avacado!  I had not thought of this!  Great suggestion! Thanks so much! I have been wondering how much I should be prepared on the plane.  I have been debating myself on whether I should utilize Depends, just incase! Thanks, Kdragon, for sharing your experiences with me! smilewinkgrin

 

I_love_coffee-  Oh, how I also love a cuppa coffee! smilewinkgrin  I love all good coffee. I am a Starbucks fan, yet there are also other great coffees out there! YUM!!!

Great suggestions! I can tolerate 1/2 banana at this point. I may try an raw, peeled apple. I love rice cakes and had forgotten about them for some reason, lol. I love Chobani yogurt and usually eat it daily!  I have eaten it daily for approx. 1 year.  However, I am wondering about it right now (for me). I just love it though! Mango... Love that, too! Lara bars... I used to like them, years ago.  I find them acidic to my upper GI, almost immediately. They are very popular!

Thanks, I_love_coffee, for your suggestions, too! smilewinkgrin

 

Tournevice- More great ideas!  The smaller containers of the soy/nut/grain milks are a great idea! (I can only tolerate the nut milks and may test that before my trip. While I can tolerate rice protein, I cannot tolerate the extra sugars in the rice milk, for instance. You did not mention grain milks, I know.  I am just commenting.)

Dried fruits and nuts, just love 'em!

I will try the nuts, but may need to hold the dried fruit for awhile yet.  YUM!  And coconut!   Love unsweetened coconut! yeah Will check this out at my natural foods store.  Yes, thanks for also reminding me to be cognizant of the rules for carry-ons on the planes! I am also grateful to you, Tournevice, for your contributions! smilewinkgrin

 

I will look into the enemas when I return. Thanks!  I would love to get in one or two before I leave, yet the medical system I am in here moves so slowly! Overcrowded and understaffed!  I doubt I could get an enema prescribed before I leave.  It was tough to find anyone stocking the Canasa! I was so pleased to get a smart and fast doctor, by chance in the ER, on Friday! Wow! smilewinkgrin

I have found this Canasa suppository has worked very well for me in this episode (thus far); yet, I also find it leaves me with a very clouded mind.  Cognitive fog seems to be a side-effect for me. Thus, I am grateful for your assistance!

I realize responding takes time; I deeply appreciate each and every response! smilewinkgrin

Post Edited (Hopeful Heart) : 4/30/2012 9:19:59 AM (GMT-6)

Posted 4/30/2012 4:03 PM (GMT 0)
Hi Hopeful

I am an SCD'er although I modified the diet because I was ultra-sensitive to even legal SCD foods. I have had to travel too and put thought into how to do it. The most important thing is liquids, keep them coming all day even when you don't think you need them as long as you have access to pee lol. You can get a "Restroom Card" from an internet UC site (I'll have to dig it out of my wallet later) that says you have a digestive problem and need access. I did not have to use it on the plane but felt calmer having it on me.

So you don't have to wade through my typing I'll just put my points down:

1) Liquids are more important than food. Stay away from sugar, real or fake including juice. Drink good water, not tap water.
2) Protein is more important than almost any other food group and easiest to digest. You can order hard-boiled eggs at breakfast and keep some for later. Cheese is protein and aged cheese is best. Stay away from soft cheeses. No yogurt until your symptoms are better. Order chicken or beef sandwiches and don't eat the bread.
3) Use 1-2 Immodium when necessary (travel days) or ask your doc for a Lomotil Rx. For short term use it is a lifesaver but when you get home quit using so you can see what your gut is up to and begin healing.
4) Stay away from fiber for now. No oatmeal, no fibery or starchy veggies, no nuts, nut butter is a maybe, no dried fruit.
5) My emergency pill bottle also had some Pepcid Complete chewable, Pepto-Bismol and the anti-spasmodic Dicyclomine 10 mg (this is Rx med). In days past I'd use all three to keep it together. They work.
6) Rowasa enemas!!! The best med I ever used. Works overnight to calm the lower region. No problem as carry-on the plane in it's box.
I know my list does not agree with other posters suggestions but we all have different ideas about what works.
My suggestions are for short-term use and have worked very well for me.
I am in remission now but I remember the days of fear of being away from home.

Best of luck.
Posted 4/30/2012 6:05 PM (GMT 0)
Hi imagardener2!

Thank you so very much for your suggestions! :-)

I understand your recommendations and also understand these guidelines are for short-term and are useful during an exacerbation and/or when it's vitally important to maintain stability (ie: when traveling).  I qualify for both: in a flare and need to travel.

I also understand the reasons behind your suggestions, ie: no yogurt yet, no nuts yet, etc.   I am ultra sensitive and even more so in a flare. I truly cannot touch dairy, even yogurt right now. I will become increasingly ill immediately if I touch dairy right now.

I seem to be fine eating just a little brown rice, cooked well.

I have been able to use small amounts of no sugar added pure applesauce on a small amount of rice. When I return, I will decide whether or not to keep some rice in my diet or whether to eliminate it.  I am concerned that totally omitting brown rice right now might create a herxheimer reaction, as I was way off of my ideal diet when this flare occurred and I am suddenly cutting out many different items. I think I can tolerate any "die off"  symptoms if I keep a little rice in my diet right now.

I totally understand on the water and drink pure spring water only. Thanks for the reminder to keep paying attention to drinking water quality when traveling!  So important!  I may have slipped on this had you not reminded me of the importance. :-)

I will search online for the type of a card you are mentioning!

Again, my sincere gratitude to you! smilewinkgrin

~Hopeful Heart~

 

Posted 4/30/2012 7:17 PM (GMT 0)
Here is the card website: www.MyIBD.org
They have a place on their website to make the request.
Very nice plastic card like a credit card, looks official.
It says:
MEDICAL alert
Restroom Access Required
plus more explanation

Best of all it's free and they shipped it to me very fast.
I'm sure they wouldn't mind a donation to help cover costs.
Posted 4/30/2012 8:24 PM (GMT 0)
Dear iamagardener2,
Thanks so much for the great info!
I will check into this right away!

Oh, have another question:

FIBER-
You had mentioned no fiber. I am quickly recovering, as far as stool consistency goes and would not want stools any firmer than they are right now. I had already added a TBSP of ground chia seeds two days ago, in addition to some brown rice and very cooked carrots, a little applesauce, cooked and pureed squash. Is there a better fiber to start with? I also have ground flax on hand.

With Gratitude,
~Hopeful Heart~
Posted 4/30/2012 8:41 PM (GMT 0)
To All,
Please forgive me for all of the urgent questions.
I have to go on this trip. I would, otherwise, just cancel and stay at home, even though it is very important I get this certification now.

There are no refunds for any part of this. My husband is also booked to go with me. It's nice that he is going with me, but it is also more pressure to make sure I am fine, even if I am not. I feel horrible and still have so much to do for prep for the trip. There's already a lot of stress in our lives due to the unpredictable nature of my AI conditions. This issue returns now, of all times.
Just a little frustrated!

I am exhausted from this illness, after having been ill for 3 weeks already, and am having strong cognitive side-effects from the Canasa, even though it is otherwise working well for me. (I won't be able to get it changed before I need to go, I have called and have tried. The system works too slowly here.)

I have to figure out how to make this work. I just have to.
Thank you so very much for your understanding and your assistance!
In Gratitude,
~Hopeful Heart~
Posted 5/1/2012 2:50 AM (GMT 0)
Ugh, sorry to hear you have to travel with all this going on.  I hope you are able to have a good productive trip.

I have done quite a bit of traveling, and the thing that keeps me satisfied the best is if I can make a big batch of SCD-friendly cookies before I go.  I have made several varieties of almond-meal cookies that will last about 10 days, easy to pack.  My favorite type of cookie is the almond meal with ginger powder.  I'm sure you could find a recipe online if you don't have an SCD type cookbook.  So I munch on a couple of ginger cookies when I need some quick travel energy.  Otherwise, apples pack well and don't seem to "weird", apples dipped in peanut butter would be even more satisfying.  I snack on lots of apples and carrots, (and homemade cookies when I travel).  If you can do yogurt, I never had any issues with the Stonyfield brand plain yogurt, should be able to find it at most larger grocery or health food type stores, so if you have a fridge in your hotel room, you could get a few of those for snacks or lunches.  I know it's not officially SCD legal like the homemade 24 hr yogurt, but it might work in a pinch.

Posted 5/1/2012 2:52 AM (GMT 0)
I just saw your post saying no dairy, so forget my suggestion about yogurt.
Posted 5/1/2012 4:27 PM (GMT 0)
Hi Zucchini!

I love zucchini! smilewinkgrin   Yum!

I had peeled and steamed some two nights ago, as I was craving it.  Made it into mush, basically. I usually like it lightly steamed, but this time, had to cook it longer!

On topic-

Thanks for the suggestions!

Yes, I am sure the recipe is online!

Yes, it appears I can eat apples if I peel them. I had been eating a bit of unsweetned applesauce, which is great, but I love raw apples, too. 

I have found out that I will have a small refrig and a microwave in my room.  I'd rather not cook anything with a microwave, but can if I need to do so, in a pinch.

I love almond butter, just not sure I can add that in yet.

I love yogurt and had been eating greek yogurt daily... but need to omit it and see if it has been adding to the difficulties. I usually cannot tolerate any dairy.  I may try kefir at some point, before I again try yogurt. Will see!

I just want to stay as stable as possible on the trip.

Thanks so much for your input! Deeply appreciated!

With Gratitude,

~Hopeful Heart~

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