How are you feeling today?

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I'm not feeling too well today. Apparently the prednisone has made it entirely out of my system, and my guts don't seem too happy. I was already having issues with constipation while prednisone was doing its thing. (Had quite a few other side effects like feeling jittery and tired at the same time...) So, my GI suggested I use a certain laxative to get over the constipation as the prednisone was slowly making its way out. It didn't really work for about 9 days, and then suddenly I felt the pain come back on Monday. Along with some success, but now it's turning to diarrhea again. (And, a lot more often.) Lovely. I kind of forgot about the pain until now. It's also making me feel weak and exhausted all the time. I was hoping to keep up my 2-mile walks I had finally gotten back to, but I feel too tired right now. Also, doesn't help I got into an argument last night with my parent. That added more stress. I have to do a couple of tests soon to see if the prednisone helped in absorbing azathioprine any. I also went down in dosage of azathioprine just as I started pred. So, it's hitting me harder with that, as well. My system apparently can't handle the dose that my GI wanted me at, that's kind of why I tried pred for it. Anyways, my GI's expecting it didn't work very well. Once the results come back, and they come out the way she thinks it will, she wants me to move onto humira or remicade. I'm really nervous about that. The scariness of this whole thing seems to be coming back for me. (Not as bad as when I didn't know what it was, at least.) I hope I can get into remission soon.

Anyways, I'm also still excited about my 2nd novel being published at the beginning of this month, and hope it'll become successful. Already had a glowing review of it recently. That was awesome to read. I seem to be losing a lot of weight, but am happy with it unless I become underweight. I've lost about 5 pant sizes since my heaviest (not all of that was because of Crohn's), and am now in the 'normal' section. So, I have some good things happening as well.
 
Hi sorry you are having a rough time right now, hopefully you will soon be back on track. Getting the right meds for you can be tricky, so hang in there.
That is great news about your novel, I really hope it does well for you.
Best wishes 💕
 
Aw Ron,i feel for you there. Its a very hard thing to watch happen to a parent. Im sending big hugs and lots of love your way.
May the Lord help you through with all things.🙏
Love Mandy 💕💕
 
So decided to limit my sugar and bread intake, haven't eaten greasy food in awhile.. But have noticed a big difference in how I feel. I don't feel nearly fatigued. I gave up caffeine and my snacking in the evening.. If I do snack I have something small. It's really made a difference.. I've also found that I absolutely love sauteed zucchini. lol. who knew.
 
Glad you're feeling better Jaime! I love zucchini. I would shred zucchini, sautee it then add eggs and make a frittata. During the summer when my garden is going I would have fresh tomatoes to add as well. Unfortunately due to the surgeries I won't be doing a big garden this year. Just some herbs and a few tomato plants. Maybe I'll do some green beans too...yum
 
I love when it's time to start planting the garden.. Last year my garden got forgotten since I got sick shortly after I planted it.. This year one of my good friends and I are sharing my garden space. So she will help if I'm not feeling up to it. However it feels like garden season won't be for forever.. We just had a bad snow storm come through yesterday, we have a few inches of snow to show for it and it's really cold out :/..

I've been eating way healthier and I have a little more pain than i did when I ate the low residue, but I feel better otherwise. So I'd rather have pain than the diarrhea and fatigue.

How are you feeling Eridon? Still doing ok post surgery?
 
We have been having unseasonable warm weather. A high of 72 deg last weekend. I don't think we are going to get another frost so I went ahead and planted some seeds for Bell peppers, green bean, cilantro and Basil. It's good you have a friend that can help out; gardening can take a lot of work. But hopefully you will feel great this summer and won't need the help :ysmile:

It's sad that some of the healthy higher residue foods give us pain. I would love to eat broccoli and onions again but they hurt way too much. It does help if I cook the crap out of a high fiber food(like make a stew in the crockpot and let it go for 8 hours). I also have found that I can eat lentils if they have been soaked for 24 hours or sprouted. This breaks down some of the enzyme inhibitors and phytic acid.

I'm actually surprised at how well I've been doing post surgery(I thought I'd be further behind energy and healing-wise). I have been walking on the treadmill for 1 hr and 40min everyday at 3.5mph. I'm back to work and will start up traveling for my job next week (Wohoo Iowa city!). Getting used to the bag but I had to do 2 bag changes because of leaks yesterday and I can see the skin separating from the stoma. So that has been fun to deal with :voodoo: I have an appointment with the surgeon to do an enema/dye test to make sure there is no leaking at the surgery join. If all looks good then I may get to have the reversal mid May. Little scared about that because I'm hoping that I stay feeling well after all the plumbing is hooked up.
 
Eridon2002 said:
We have been having unseasonable warm weather. A high of 72 deg last weekend. I don't think we are going to get another frost so I went ahead and planted some seeds for Bell peppers, green bean, cilantro and Basil. It's good you have a friend that can help out; gardening can take a lot of work. But hopefully you will feel great this summer and won't need the help :ysmile:

It's sad that some of the healthy higher residue foods give us pain. I would love to eat broccoli and onions again but they hurt way too much. It does help if I cook the crap out of a high fiber food(like make a stew in the crockpot and let it go for 8 hours). I also have found that I can eat lentils if they have been soaked for 24 hours or sprouted. This breaks down some of the enzyme inhibitors and phytic acid.

I'm actually surprised at how well I've been doing post surgery(I thought I'd be further behind energy and healing-wise). I have been walking on the treadmill for 1 hr and 40min everyday at 3.5mph. I'm back to work and will start up traveling for my job next week (Wohoo Iowa city!). Getting used to the bag but I had to do 2 bag changes because of leaks yesterday and I can see the skin separating from the stoma. So that has been fun to deal with :voodoo: I have an appointment with the surgeon to do an enema/dye test to make sure there is no leaking at the surgery join. If all looks good then I may get to have the reversal mid May. Little scared about that because I'm hoping that I stay feeling well after all the plumbing is hooked up.
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Wishing the best for you
 
Glad to hear things are going fairly well. That sucks about the leaking but at least you're feeling good, so it's sort of worth it.

I'm pretty new to having to alter my diet so I'm still learning things that work and don't work.. My husband is a terrible eater so I've had to cook something different for myself almost every night. lol. I didn't think about soaking lentils.. I might have to try that. I didn't do very well with eating the last few days (we have a friend getting married and work has been crazy, so I haven't had a lot of time for meal prep) Anyway i feel kinda junky today, but that might be the azathioprine starting to kick in too i suppose. I've heard it can make you feel like you have the stomach flu, which is kinda how I feel.
 
Im still in pain and i dont know what this joint thing is but i find that my one knee hurts when im trying to walk and last time i could not a kettle or even a cup as my hand were pretty sore holding anything. Last night i were bleeding. Wish its April already to see my GI again. Tired allot but struggle to sleep at night
 
I am so sorry, Christi. Can you call your doctor's office and ask if they can get you in earlier if there is a cancellation?
 
i can do that as they said if somethings wrong that i could phone but my appointment is on the 13th and im just trying to hold up till then. Next week i have an appointment with my psyciatrist and will be getting all my blood test as they tested for everything and just hope it didnt reject again as i have to start new meds. My appointment at internal meds are still so far away and still trying to figure out what i must go for as she wrote 2 things but i cant see what it is and what they picked up and whats wrong. So many doctors and still no outcome ughhh
 
Today, I feel kind of stuck and scared. I emailed my GI yesterday about my symptoms. They seem to be getting worse. My GI immediately emailed me back. She sounded very worried. She wants me to do the blood and stool test (that I've been avoiding for a while) right away. I'm not sure if I'll be able to today, and the next possible day is Monday. She wanted to make an 'urgent' appointment to see me. I can't really have an appointment sooner than the one I already made last week. (For April 4th.) She wants to prescribe me more prednisone in the meantime. Not only can I not pay for it yet, but I think pred was partly to blame for my constipation problem before. She said if it gets much worse, I have to go to urgent care. Urgent care also has a copay...I'm not exactly sure if I'd be able to do these things before the end of the month, anyways. Plus, not to mention, I'm running out of my other meds. Sorry for ranting so much. I don't think I've been this nervous/scared of it since August.
 
Half of the time, I feerl like I have to go to the bathroom but can't go. I hope when I get started on the Humira that it will help. I have been having random pain in my lower back. I went to the chiropractor. It helped for a little while and then a few minutes ago I started hurting for a few seconds again.
 
!@#$@%#$%! <-- That is how I'm feeling today. And grumpy over feeling like getting stabbed repeatedly in the bum all day long from things that won't resolve with meds and aren't easily treated.

Nothing is healing like it should. My bones feel like they're on fire. I keep expecting to bounce back in 2-3 weeks following infections or every day illness, but it's not happening. More double the time just to manage everything, then more time for energy to come back. I'm burnt out on the chronic symptoms and just re-injuring joints and waiting for the appointments that actually deal with that to come about.
 
duh panda said:
!@#$@%#$%! <-- That is how I'm feeling today. And grumpy over feeling like getting stabbed repeatedly in the bum all day long from things that won't resolve with meds and aren't easily treated.

Nothing is healing like it should. My bones feel like they're on fire. I keep expecting to bounce back in 2-3 weeks following infections or every day illness, but it's not happening. More double the time just to manage everything, then more time for energy to come back. I'm burnt out on the chronic symptoms and just re-injuring joints and waiting for the appointments that actually deal with that to come about.
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I hope you feel better soon
 
Hi all, hope everyone is doing well today...
I'm doing okay bar the dratted joint pain 😕, I have a referral to a rheumy so waiting on the appointment, hope it is not to long off. Hope he can help with the pain...
Gotta keep smiling ☺☺
 
Mandy i hope he can offer something that can make you feel better , mandy how did your joints start? I have problems holding a cup and my knees when walking makes me sore? I will mention it to my GI on the 13th
 
Christi said:
Mandy i hope he can offer something that can make you feel better , mandy how did your joints start? I have problems holding a cup and my knees when walking makes me sore? I will mention it to my GI on the 13th
Click to expand...

Hi hun. They just started aching a little quite a few years before i knew i had crohns.mainly just my right shoulder. Then the left started. after my dx,my elbows,hips,knees started up. Gradualy getting worse. Most recently my fingers are achy and i drop things alot some days more than others.one or two of my knuckle joints are getting knobbly too now.
Ye mention it to your doc Christi,hope he can help you too hun.
💕💕
 
This evening I have an interview with Camp Oasis for a cabin counselor position. I'm really excited since I was never stable enough to attend as a camper. Even if I don't get it it's nice to finally be getting involved in the local crohn's community!
 
duh panda said:
This evening I have an interview with Camp Oasis for a cabin counselor position. I'm really excited since I was never stable enough to attend as a camper. Even if I don't get it it's nice to finally be getting involved in the local crohn's community!
Click to expand...

Best of luck to you.
 
duh panda said:
This evening I have an interview with Camp Oasis for a cabin counselor position. I'm really excited since I was never stable enough to attend as a camper. Even if I don't get it it's nice to finally be getting involved in the local crohn's community!
Click to expand...

That sounds like fun! Good luck!
 
Thanks everyone for the support :) I think it went okay, at least I had an answer for all their questions ;) and should know whether or not I made the cut in the next few weeks.

Hoping all of you have been enjoying successful Tuesday's!
 
duh panda im happy for you :) and im sure it went well. Just an update from my doctors appointment today i found out i now also have cholesterol and my blood glucose were 10.8 bp still high also and that my vit b12 is low so today i started on a few new meds
 
Christi said:
duh panda im happy for you :) and im sure it went well. Just an update from my doctors appointment today i found out i now also have cholesterol and my blood glucose were 10.8 bp still high also and that my vit b12 is low so today i started on a few new meds
Click to expand...
Hope they help, Christi
 
Thank you my friend i dont know everything just keep coming and it doesnt stop im so frustrated i dont know what more could go wrong and whats next
 
Christi-There are some good food diary apps. I use myFitness Pal. You could also try an elimination diet. That would be the ultimate test since sometime symptoms don't crop up for 24-48 hours after eating.
 
I do have a dairy yes, i do not have an app for this. Ron i find more and more stuff that i cant eat and i love food. With the colestorol now there a few things that i need cut back on and a few things that i must have less of darn this diseases for making so much trouble will it ever stop? They also need to test me for diabetes, it all just come at once im now at the point of just laughing
 
Glad you got some good sleep in Christi! The app I use helps me keep track of everything I eat. I have an app on my phone but I can also go online and enter in what I eat for each meal. It counts your calories, grams of fat, sugar, carbs, etc. It has reports that I can view bar graphs of the weeks intake of various nutrients(Cholesterol, Sugar, Potassium, Fiber, Calcium, etc). If something upsets my stomach I can look back and see if I had eaten anything different that might have caused it. The one I use is called myFitnessPal. There are a bunch out there though.
 
Thank you Eridon2002 i will have a look at it :) Ron i hope you feel better soon im so sorry that you also need struggle like this
 
Ended up taking a half day and resorted to another round of prednisone due to pain and diarrhea. Hoping it's just due to overdoing it on Easter.
 
Last week I had some joint pain in my right ring finger, the aching arthritis type pain. I feel so bad for everyone that has to suffer through joint pain. It is so miserable and gets exponentially worse with each joint affected. Christi-I hope you get relief from it soon!
 
Thank you Eridon2002 still no relief its in my hands and feet sometimes in my knees. Im seeing my GI next week wish its time already
 
Bit disappointed after trying to taper down to a lower prednisone dose and having withdrawal symptoms too severe to tolerate the lower dose. Caved this morning and returned to what has been tolerated and will give it another shot in a month or so.

Mostly though, feeling hopeful. Got a week off with my love where we enjoying a home-cation and I was able to use his help to get caught up on a lot of medical and personal responsibilities as well as get out of the local area for a bit of exploration. May not be climbing to the mountain peaks, but at least I can still enjoy the views from the top on drives. I may not know when or if I'll ever be doing the things I wish to do, how I wish to do them, but doesn't mean I can't find ways to manipulate my current situation to see what I want to see or do some of what I want to do.

I woke up this morning with a recipe in mind for peanutbutter butterscotch cookies... Never had them, never made them, frankly never heard of them but its creation is happening as soon as I get off of here :)

It's my wish this week that those who are struggling, who do not have relief or are struggling with symptoms can find some joy in today's moments. And for those who are feeling well, that you keep on being well and kill it in your Monday with whatever you do!
 
Today I am waiting for the NHS to get its act together so I can start on Humira. It's been a month since the GI prescribed it and the IBD nurse has not been in touch to show me how to inject myself. I should be used to this after the many years of dealing with the NHS but its lack of speed is still frustrating.

On the good side, Oramorph has arrived today. Oramorph seems to be better at dealing with the pain but it gives me a sense of euphoria and light headedness that I dislike. The other option of slow release morphine is less effective as a painkiller but it lacks the side effects. Swings and roundabouts with opiates.
 
I may have asked this before. If so , forgive me. My upper part of my body makes involuntary spasms or jerks. Does this happen to anyone else?
 
I'll get muscle twitches, I think everyone does to some small degree. Mine is usually when I am laying down falling asleep. It's like the motor neurons have some pent up energy they need to release before they relax. I have also heard muscle twitches could be caused by lack of magnesium, calcium, vitamin D, B-vitamins or potassium.
 
Im so happy that i will be seeing my GI tomorrow and hope to get something sorted , i cant keep on strugling like this. Joints still no relief and have to get something for this it will be difficult to do my job if the joints act up
 
Hi all sorry for my abcence but not getting updates for all my threads. So im miss out alot because of it. Love to you all and hope your doing as well as poss. Big hugs 💕💕💕
 
Thanks Ron.. im a little frustrated with this loss of so many of the threads not coming thro..i dont always get chance to check thro all the mew posts to find what iv not had thro.
Maybe the forum is struggling with the amount of people on it as iv noticed a lot of new members.
Take care my friend. 💕
 
Today i had xrays and test done to check for artheritis and also my glucose. My meds has been upped again and there were mentioning if in 6 months nothing changed i will have to go on tnf blocker if i spelled that right i hope so lol im now on two kinds of bp meds as my bp are not getting better its 191/126 head not feeling great at all. I also need to see a dietician as i have ibs aswell with crohns.
 
Iv missed you all too ..hope i keep getting updates. Lots of love to all .
Christi hope you get to feel better soon hun. 💕💕
 

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