Crohn's Disease Forum » General IBD Discussion » How do you feel better?


02-06-2015, 01:20 AM   #1
lookame
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How do you feel better?

What are some things that you do that helps you feel better?

I should be "feeling better" since I'm on 6mp, humira and lialda but I seem to have at the very least an upset stomach...honestly right now honestly my colon feels hot and heavy so it'sprob swollen right now. I wake several times during the night to go to the bathroom (a lot of times to pass gas since i pass blood and mucous as well) im sluggish during the day and im in the bathroom at least twice during the morning.

I've made a drastic diet change over the past 2 weeks- I've stopped drinking pop and caffeine and I've started cooking at home. Even so i feel just as sick if not worse than before...I'm at a loss. I eat less and I'm sick, I eat more and I'm sick, it feels like whatever I eat i loose because it just causes pain.



*sigh* I'm ready to just cut my colon out.
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Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

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Prednisone, humira, 6mp, and lialda
awaiting surgical consult

Mom of Little Z
eosinophilic esophagitis 5/2015
02-06-2015, 06:44 AM   #2
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Having my colon cut out and an ileostomy actually did help me an awful lot, more than diet ever did. I'm not sure if you meant that seriously, but it honestly did help me!

The diets that help with symptoms for some people don't correspond with diets conventionally labelled as "healthy". What sorts of meals are you cooking for yourself?
02-06-2015, 08:19 AM   #3
lookame
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I am at the point of just wanting it to be over. The pain, the frustraition, waking up to go to the bathroom, morning in the bathroom ect. It's so tiring. I wish I didn't become allergic to Remicade...it actually helped

Anyway I'm breastfeeding so I'm often starving but here are some dinners (i also cook for an 8 year old and my husband)
-salmon with wild rice and asparagus
-BBQ pulled pork sandwiches with strawberries, corn, and velveeta mac and cheese (my mom made it...i didn't eat a lot that night)
-home made chicken noodle soup (it had chicken, noodles and some frozen veggies in it)
-baked chicken with peas

i don't eat corn, popcorn, or raw veggies. I cut out drink pop and caffeine and only drink Gatoradeor water. I also only eat fast food on rare occasions.
02-06-2015, 09:26 AM   #4
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If you don't do well with raw veg, it maybe that fruits (e.g. the strawberries) and even some cooked veg (peas) are difficult for you to digest as well, usually because of the fibre content, which is also high in whole grains, nuts and seeds.

A very bland, low fibre diet may help - there's the BRAT diet (Bananas, Rice (white rice only), Apple sauce, Toast (from white bread).

Bananas and avocados are the exceptions among fruit and veg if your problem is with fibre as they are ok even when raw, though tinned or stewed fruit is usually ok. Stick to white grains instead of whole grains.

If it's not fibre that's the problem (or if fibre is not the only problem), it could possibly be things high in fat - in meat maybe?

But sometimes any food can cause problems, and diet alone can only do so much.

Besides meds addressing the Crohn's itself, have you tried anti-diarrhoea meds like loperamide (Imodium) or co-phenotrope (Lomotil)? These won't treat the inflammation or other problems Crohn's may be causing, but sometimes they can reduce symptoms.

If you feel food is a major trigger, I would try the low-fibre, bland diet, with nothing rich or greasy: white rice, white bread, bananas, stewed/tinned fruit, white meat, fish, yoghurts, ice cream and other dairy if you don't have lactose intolerance, smooth soups, plain crackers, etc. However, diet usually involves a lot of trial and error, as it affects people differently.

Are you seeing a specialist any time soon? It may be time to discuss some new medications.
02-06-2015, 11:29 AM   #5
lookame
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I see my GI next Tues and plan to discuss either more humira or some other alternative meds. Remicade worked very well for me however my last 2 infusions i had severe allergic reactions.

i feel some of it is diet and some of it is just the disease not getting under control. When the colon isn't inflamed i can usually eat any sort of diet but since my colon is inflamed it seems everything I eat causes a lot of pain, especially on my left side. I also can't get the diarrhea under control. It's a weird sensation of feeling like I'm constipated and having a hard time pooping(especially when in the bathroom...) yet i go to the bathroom several times a day.

Immodium has a weird effect on me. Depending on how bad my symptoms are. On bad days it'll either slow things down so instead of 5 trips to the bathroom it's 3 or on better day it'll stop me up altogether for the day then the next day it's a lot of pain, gas and trying to go (because by then everything hits the colon). It also doesn't stop the gas which I guess while I have gas i have mucous leakage.

my main issues are diarrhea, blood and mucous, and pain...and urgency though since getting on 6mp i haven't had much issue with urgency. I haven't had a non bloody stool for 6 months now.

I can try the bland diet...i bought some beef bones to make beef stock so maybe going liquid and bland will help. Idk what else to do.
02-06-2015, 06:39 PM   #6
2thFairy
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I feel for you. You sound exactly like me before my colectomy. Medication didn't help and food changes made no difference. In the last few months I was using medication enemas twice a day. One of them was cortisone and was making the watery diarrhea less watery, but more painful. I wish I had something helpful to say other than I understand where you are at and wish I could give you a big ol' hug!!
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02-07-2015, 10:34 PM   #7
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I had the exact same symptoms. I'm on entocort 9mg and Bentyl 80mg a day. Honestly, and this is going to sound strange, but I felt like absolute crud until I started Cymbalta 20mg. I was already coming near the end of my flare and it seemed to take away all my EI symptoms (joint pain, fatigue, stress). Hopefully, this helps me stay in remission this time.

Best of luck to you! I'm sending positive vibes and a big hug your way!!
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02-07-2015, 10:41 PM   #8
lookame
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Today I'm feverish with intermittent sharp and dull pain in my left side, passing essentially only blood (between very red, to purple/brown, some clots ect). I've considered going to the er today but everytime i go to the ER they sort of just push me out the door. If things get worse I'll bite the bullet... *sigh*
02-08-2015, 03:41 PM   #9
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I really hope you're feeling better *hugs*
02-09-2015, 12:51 PM   #10
lookame
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Unfortunately I haven't been feeling better. Part of it is due to the fact I feel i have to strain while in the bathroom (i feel like i have to poop but there's nothing to poop so i involuntary strain), another part is because the lialda has to have prior authorization and I've been without it for the whole weekend. Fever spiked at 102.2 last night, still only passing blood and blood clots and only eating chicken soup, popcicles, white toast, jello and crackers(the same diet i was on when I was in the hospital). Unfortunately my breastmilk supply is dropping significantly so it appears if things don't get straightened out soon my 6 month old will have to go to formula. My GI isn't in office today so all they can do is call in the lialda and hope my insurance decides to ok filling it...tomorrow can't come fast enough. I'm so mad and I'm so tired of this.
02-09-2015, 08:19 PM   #11
Alley2231
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The flare your experiencing right now, sounds like the one I had for a few days before being admitted to the hospital for 2+ weeks. As much as I hated what Prednisone did to the rest of my body, it really helped with the inflammation and urgency I was having. Is Prednisone or any steroid an option for you or no, because you're breastfeeding?

I hope you're drinking lots and lots of water and/or Gatorade to keep you hydrated!

I really hope this flare passes for you sooner, rather than later. Sending you positive, healing vibes!!
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Carrie

Diagnosed with Crohn's Disease - January 2014
Verified Crohn's Colitis - April 2014

Current Meds: Cimzia
Azulfidine (for joint pain)

Past Meds: Remicade, 6MP, Pentasa

Supplements: Calcium, D3, B12, Folic Acid, Probiotics


Blog: http://imacrohnie.tumblr.com/
02-10-2015, 04:58 AM   #12
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Sorry you're having so many difficulties, I hope they've sorted the medication for you by now.
02-10-2015, 02:00 PM   #13
lookame
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Meds are getting straightened out, for the time being I was able to get a refill and the office is going to battle with the insurance company. My GI feels it's still to early for surgery but we did talk a little on it. He was also a little upset i didn't go to the ER, he said the ER would have started me on iv steroids and would have called him to discuss things with him(i should have gone i was really close to going but I was worried about my kiddos and stuff). He also talked about admitting me to the hospital if i don't improve.

as for now the plan of action is
-40 mgs of prednisone (along with humira, lialda and 6mp)
-try to get some sort of approval for a lab to check the levels of humira in me
-sigmoidoscopy next week :P
-blood draws done today to check red count, iron ect (he talked about a blood transfusion if I'm to bad)
-stool sample ugghhh...

I guess we're on track now. We discussed which type of IBD i have and we determined i have an overlap (my main issues are UC related - the blood and main involvement is the colon) however promethius has said Iit's indeterminate IBD and I've had biopsies as crohns. So we're still in discussion about which I actually have..so that's about it.
02-10-2015, 07:51 PM   #14
Alley2231
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I'm glad you were able to touch base with your doctor and you have a plan of action.

Has there been any discussion of the possibility of your Crohn's being Crohn's Colitis? That is what mine was confirmed as a few months after diagnosis. My doctors were first puzzled too, with where my pain was (left side) as well as all the blood and it being isolated to the colon.
02-10-2015, 08:02 PM   #15
lookame
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I think that's what was determined is that I have crohns colitis. We've done several tests to try to nail down what exactly I have and it comes up as IBD lol. It's pretty rare to have both crohns disease and ulcerative colitis from what I understand... (so are we those lucky few to have both O.O) anyway doc said the best way to go about this is to treat like it's UC flaring.
02-10-2015, 11:10 PM   #16
2thFairy
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Crohn's colitis is just Crohn's that is located in the colon, not necessarily both Crohn's and UC.
02-11-2015, 08:16 PM   #17
Alley2231
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There are 5 different types of Crohn's Disease - Crohn's Colitis is one and it only affects the colon. The others are: Ileocolitis (most common, affects ileum and colon), Ileitis (affects only the ileum), Jejunoileitis (affects only the jejunum) and Gastroduodenal (affects stomach and duodenum).
02-11-2015, 11:41 PM   #18
wildbill_52280
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avoid foods with disaccharides sucrose and lactose. this is one of the guidelines in the SCD diet from the book breaking the vicious cycle and the single best advice iv'e had and give over the years. it will drastically cut down diarrhea, may not get rid of all of it though.

take it from someone who's never had more then 2 bms a day for about 6 years. actually only about once a month will i have 2 bms in a day. there's alot of stuff I do though, results will vary. i barely take any drugs as well, just one liadla pill a day, and i was on my death bed in the beginning.
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