#inflammatory bowel disease
I updated the medication info :)
http://laughingwithmycolon.blogspot.com/2016/07/my-ibd-story-my-ibd-story-started-nine.html?m=1 (Read my IBD Story clicking this link)
*Showing ultrasound pics in my twenties means I’m pregnant? Nope.*
Here’s the real story: I had a tough stomach pain out of the sudden a few weeks back which left me unable to stand straight. “Maybe I’m getting heavy period pains the first time in my life.” I thought.
But they didn’t disappear like I wished they would. On top of this I started to vomit and my bathroom frequency went up significantly.
I went to my GI “Better safe than sorry!” I told myself expecting the whole thing to be nothing. Maybe a stomach bug. Maybe even less. I was chatting with my GI when he noticed that I seemed to have an obstruction. After more than one year of remission in a state of “perfect health” it hit me again.
I knew that this could happen every moment out of the sudden. In fact I had experienced most of my flare ups unexpectedly. But it still felt unreal. He put me on entocort first, but since it didn’t work like we wished it would and the obstruction seemed to be somewhere in the middle of my small intestine he switched it to that good old prednisone a few days later. Now I’m able to eat again. And that feels quite good. I started Imuran again, too. I’ll do everything in my own power to make this flare up as short as possible.
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Nutrition again.
I’m in remission - like most of you know - and I’d call myself healthy (okay don’t mind the 6 pills at breakfast). I eat well and exercise a lot. I get my period and my weight is stable.
It’s like my body forgot about the long time being malnourished. NOPE. It didn’t.
I participated in a nutrition/exercise research work at my university (which included labs, body composition, weight…) and I was quite disappointed when I got the results. Last time someone checked my body composition (another IBD trial) the muscle mass was dangerously low, my bone mass sucked and my overall body composition showed signs of being long-term-malnourished even though I was just borderline underweight.
But now that I’m at a healthy weight, in remission for about 18 months and running/eating a lot (& gym) I did not expect that my body still had such low muscle and bone masses and still showed signs of malnutrition.
The disappointment changed into hope and motivation after I thought about it for some time. Small progress is still progress. And all good things take their time. So I’ll keep on working hard and I will keep in mind that bodies don’t forget what they’ve been through.
I just wanted to share this lesson with you guys because it was important to me and maybe it’s important for you, too. Especially in a time where everyone seems to be aiming for fast changes.
Besides this I’m just grateful that I can do lots of things that seemed so far away or even unarchievable just two years ago. Sometimes things even change for good when you almost lost hope.
Just wanted to sneak in and wish you a GUT day :D !
Still happy, still in remission, still living the dream.
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Hi guys!
Right now I’m in the privileged stage that thoughts about Crohn’s disease aren’t a daily thing in my life anymore. But sometimes when i feel light, happy and free thoughts pass my mind.
Like “You’re eating out and even had a portion of salad without thinking about it! Salat!” Normal people wouldn’t think that this could be a huge deal but for me (and probably everyone with IBD has food types like this) it’s incredible. Also things like long-distance flights, travelling without worries, being active…no big deal at all.
Sometimes I think I should watch my food intake because most of my “sick” size 0 jeans don’t fit anymore…but I know that this is a good sign. Finally gaining some weight to a healthy range is good! It’s important to build muscle and bone strength I lost in the past years over and over again. So I eat a lot and enjoy all the foods I wasn’t able to eat in years.
I don’t even can imagine that just 18 months ago I was admitted to the hospital because I needed parenteral nutrition. It completely blows my mind.
Things can change for the good. They surely can.
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World IBD day 2017
To be honest: I almost forgot about today’s WORLD IBD DAY.
I mean it’s good that my life isn’t just about the daily struggles with Crohn’s disease anymore.
I work. I eat. I run. I travel. I basically live the life I always wished to have and that I though would be impossible.
But still there are moments IBD affects my life even though I’m in remission:
I have to be careful with food especially when eating out. I take my daily medicine and see my GI regularly (including poop samples that’s one of the IBD specialties). I get sick more frequently than other people do.
For example: Last week I woke up every other hour one night and ended up taking some pain killers…just because I had a Pizza margharita for dinner (normally a relatively safe food when I skip most of the cheese). Or I had to explain why I can’t have ibuprofen or other NSAID when I visited the doctor for a bronchitis with fever.
I try to educate people about IBD with telling my own story when I feel like it and they’re often very interested in it.
Remission is wonderful and I’m grateful for every single day because I haven’t forgotten about all the pain, nausea and troubles I went though the past 9 years.
I hope you’re doing relatively good. Sorry for my absence lately. Hugs xxx
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when your abs are sore because you ate something wrong and had stomach cramps all night long.
After months of remission with just minor problems the past two days reminded me of my life with active Crohn’s disease again. And I definitely don’t miss it. At all. I guess I overdid the whole “Oh I’m in deep remission I can try salad and eat some more cheese again…” thing. Seems like my intestines still struggle with more processed/dairy foods. But I don’t think that I’m flaring. Hopefully. Oh well. Woke up at night. Now nauseous and in pain again. And look like pregnant the third day in a row. Took 7 extra pills. Tomorrow will be a better day. It has to be.
Some of you recently messaged me to ask me how I’m doing right now.
Like I’ve told you before: I’m in remission and working a lot. I don’t even know
HOW I got to this wonderful point after experiencing problem after problem for the past few years with Crohn’s disease and/or arthritis.
It’s almost March of 2017 and I visited the doctor only twice this year. Two times in two months. Like that’s nothing. My GI did an ultrasound and blood tests and both came back completely normal/fine. Even my iron levels are perfect after my infusions last September-November.
I take my medication but honestly i feel so freaking good that I even forgot to take them a few times (or took them at lunchtime because I forgot them at breakfast!).
I eat a lot. Sometimes I’m a bit anxious when I eat because I expect to be in pain the night after. But except for a few times (maybe 4 times in the last couple of months) everything goes smoothly. I even gained a bit of weight. But that’s okay. Weight gain is a good thing when you have been malnourished for such a long time.
I know I still have Crohn’s disease but if you’d ask me I’d say that I’m a pretty healthy girl (that takes some pills everyday).
How are you doing?
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I’m going home!
So, I am finally going home! I was moved onto low-residue diet last night and have kept down three solid food meals. I feel fine, albeit a bit tired, and am itching to get back to my space.
I don’t know how long I’ll be signed off for but I imagine it’ll be for at least a few weeks.
I’m just waiting for the discharge paperwork and sick note and then I’ll be free to go.
Update
So, I’m on free fluids but I’m having some trouble keeping it down. We think it is linked to my anxiety so I’m having diazopan to help keep me calm.
I managed to have some soup for lunch and I’ve been prescribed Sandy Shakes which are a different type of nutrition drink from Fortisip made with powder mixed in milk. It tastes better than Fortisip and is less thick. I’ve been able to keep all that down so far so fingers crossed the diazopan is helping.
I’ve also had my cathatar and PCA removed and I’m also cannula free, for now. They’ve stopped my antibiotics and are going to see if my inflammatory markers stay down because of they do, that’s means the infection is gone.
The drain is staying in until at least Friday and they said that if need be, I can go home with it. Honestly, if it means I can go home, I’ll go with the drain. Fingers crossed I’ll be home by the weekend.
A week post surgery
I’ve had a bit of a set back. Yesterday, I woke up feeling very cold and shaky. My temperature was ~40°c and I was tahycardic, with heart rate over 130bpm!
The nurses and doctors were quite concerned and I was put on a very strong IV antibiotic, which helped a lot. They also put me on IV fluids as I was feeling sick and wasn’t drinking much. They did blood culture checks, both peripherally (from a vein) as well as from my PICC line because there was a chance the line was infected. They also did a urine dip from my cathatar.
While they were waiting for those results, they took me for a CT scan to check if I had any liquid pooling in my pelvis. Unfortunately, I have a pooling near my stoma and they had to put in a drain last night. I believe my PICC line is fine but they’re not using it at the moment.
I’m very sore and achy, and not as mobile as I was a few days ago. I feel like I’ve taken a few steps back.
Surgery went well
I’ll keep this brief as I am very brain foggy.
Yesterday I had my EUA (endoscopy under anaesthetic). From the results, my surgeon determined I would indeed need stoma surgery. He wanted to wait until this morning (Saturday) but because I was in so much pain (I’m quite sure I asked them to knock me out at one point), he said it would be cruel to leave me like that and took me straight back into theatre.
I’m in intensive care at the moment with a cocktail of painkillers being pumped into me.
Surgery update (in rant form. Sorry)
On Saturday, I had what’s called an EUA, or endoscopy under anaesthetic, in order to see what was going on in my jpouch. It showed the entrance was narrowed by a stricture and there was some liquid in it so they inserted a drain. The doctor who performed it tried to stretch the stricture with his finger (I didn’t know this until later).
Afterwards, all seemed fine for a bit until I started getting pains in my lower abdomen and near my rectum/pelvic floor. As it turns out, when try to stretch the stricture, the doctor had accidentally created a hole in my pouch and there is now an infection in the cavity behind it (to say my surgeon was not happy about this would be an understatement). “Fortunately”, the drain had gone through the hole as well and was trying to drain the waste that has leaked though. It was painful but they couldn’t do anything until the next day (Tuesday) at the earliest.
The plan, as far as I knew it, was to have an EUA so my surgeon could assess the damage. Once this was done I’d then have surgery to have a permanent stoma put in. I was told that I’d have the EUA this morning (Wednesday) and then the stoma surgery this afternoon.
That hasn’t happened. It turns out there was some miscommunication between my surgeon and another Dr. What is actually happening is my surgeon is performing the EAU this afternoon and I am last on his list. Fine. The stoma surgery will be scheduled for later this week, most likely.
What was said would happen but hasn’t (by the other Dr) is that I was first on the list to have the EAU and that it “didn’t matter” if the drain had fallen out this morning (which it did but hasn’t caused any issues). There was no mention of when the stoma surgery would be, only that they might not even have to do it. (My surgeon has already said going back to a stoma would be what’s best for me at this point).
I am struggling now as I’ve done nothing but lay around and wait for someone to take me for a test or scan or tell me some results. It’s tiring and I’m fed up. I want this fixed so I can go home and continue living
Bad-ish news
I had another CT scan today and it showed two things; 1) my bladder had a litre of liquid in it that I didn’t feel, resulting in me having a cathatar inserted. It immediately drained about half so it’s clear I need it.
The second thing it showed was a hole in my jpouch where intestinal waste has leaked into my abdominal cavity. The drain that was placed into my pouch yesterday has now gone through that hole and is draining as much as possible but itse still quite painful. The doctors have put me onto their surgical list for tomorrow to remove the pouch and give me a permanent stoma.
This is quite a bit to process and I haven’t really talked to anyone about it much. I will do my best to absorb this overnight but I don’t think I’m going to sleep too well tonight.
Small achievements #1
I was able to stand up with little to no assistance.
For context, I’ve had a procedure that involved putting me under anaesthetic and performing a pouchoscopy (a scope of my jpouch) and placing a cathatar into my pouch so what is currently trapped in there can drain. The opening to my pouch is so inflamed, it’s practically closed, resulting in me not having passed ANYTHING for over a week now. It has been excruciatingly painful and my stomach has been very distended. This meant I could barely leave my bed without freezing in pain at every movement, let alone standing and walking.
I’m by no means healed but I am comfortable, at least, so healing should follow soon.
Intestinal colic
This is what they think I’ve got. It means severe pain that comes in waves, usually around the abdomen. Apparently, it’s caused by the muscles contracting in an attempt to move an obstruction.
At the moment, they’re still wanting to observe me but if things don’t improve soon, I’m assuming they’ll intervene with… something, I don’t know. There have been several mentions of operating but I really hope it doesn’t come to that. Apparently, this can go away on its own but, knowing my gut, I don’t think it will. At least, not quickly, anyway.
