Flex sig and balloon dilation

Whereas other people have 'To Do' lists, I have 'To Dread' lists. I've been ticking off various things over the past few weeks that I have been dreading and now I can finally tick off the dreaded flex sig. The reason why I've been dreading this normally harmless procedure is that my previous two flex sigs have been extremely painful and so naturally I was expecting this one to be. Particularly as I was going to have a balloon dilation for the first time.

But - spoiler alert - it was amazingly, pleasantly painless. I'm not sure if that was down to my GI doing the procedure and using a paediatric scope, or whether he just used better drugs, but I never felt a thing. Even the colonoscopy report made a note of pointing out how chilled I was ("comfortable throughout").

In order to get the sedation though, my mum had to agree to come to the hospital to collect me. I wasn't even driving - I'd paid for a taxi to the hospital specifically so I could have sedation. But the nurses insisted I would not be allowed to go home by myself even in a taxi if I had sedation. After much arguing, I could tell they weren't going to relent, so that's when I phoned my parents. My dad didn't feel comfortable with driving to the hospital (which is fair enough, given his advanced age and dreadful driving), so my mum had to pay for a taxi. I couldn't even go out to the entrance to meet her for crying out loud - she had to come to the endoscopy unit and be present with me for my discharge.

I wonder if it's just my hospital or if the rules have tightened up nationally? Because, hell's bells, I don't remember it ever being that strict in the past. I used to get the bus home after a colonoscopy - and yes, I always had sedation for my colonoscopies.

On top of that I had a 3.5 hour wait for the flex sig. Sounds a nightmare but I had my phone and kindle with me and I mostly read - I was just dying for a cup of tea which I couldn't have. However, the woman before me was getting really agitated. She was in her 70s (I think) and reacting badly to the prolonged 24-hour fast. I was glad when she was finally called, partly because it gave me peace but also because her obvious distress would soon be over.

Anyway, as I said earlier the flex sig went amazingly smoothly and painlessly - I didn't even feel the dilation. The report showed active Crohn's and ulceration of the rectum and anastomosis, but the small bowel seems to be clear beyond that. Biopsies were taken.

Very early days, but the dilation does seem to have helped with the abdominal discomfort/pressure/cramping in the lower right. However I haven't thoroughly tested it yet to be fair. But definitely right now I am feeling more physically comfortable than I usually would at this time (late evening).

As for treatment, talk of Stelara seems to have been dropped. The colonoscopy report mentioned rectal therapies (no point if it's mesalazine… even if it worked for Crohn's, I cannot tolerate it) and tacrolimus or thalidomide(?). Tacrolimus I've heard of - there was a user on here who took tacrolimus suppositories for his Crohn's but I dunno if they worked for him. However, thalidomide is a new one to me. I hope I get a follow-up appointment to discuss all this.

(I'm purposely not mentioning Brexit because it's so depressing. At the time of writing a crash out no deal exit in 7 days' time is looking the most likely thing to happen.)

Yeah, it's always been standard for me, too - I think it is a liability issue. A cabbie or someone could take advantage of you, and the hospital would be on the hook for letting you leave with a stranger.

Bummer that there is inflammation. I had a colonoscopy on Friday last week that showed inflammation in the top and bottom, which was disappointing. But I've been on Remicade for 7 years now, so I just feel extremely blessed it's worked as long as it has. We'll see what the biopsies show and go from there. My GI is being really conservative, which I appreciate - I don't want to jump to something new without having all the facts.

Hope everything goes well with the dilation! It was a lifesaver for me. Took two rounds of it to work best but really helped. I also always have to have some one I know take me home, though once a different doc let me just leave straight out on to the busy New York City street and didn’t check if I had a ride. Guess some are more strict than others.

You sound very discouraged, Tea (mind if I call you Tea?). I'm so sorry all of this is happening to you. And yes, this disease really and truly sucks. My best advice for you is to make sure your uveitis is treated. You must not allow yourself to think of what could or could not happen.

I think our brains like to trick us with the whole hope for the best, prepare for the worst thing. It sounds good in theory, but in reality, it leads to unnecessary distress and despair. We cannot predict the future, and we must not let our lives be ruled by "possible future scenarios." It is very important to live in the now and in the present.

I say that not only as someone who lives with Crohn's but also depression. And it's something I still have to remind myself but what has helped is remembering when this fear first seized upon me. When I was young, I used to be told constantly by my grandma that I would end up like my mother (who is a schizophrenic). And I was absolutely terrified of this because of the genetic component, because of how terribly bad a mental illness like schizophrenia can be (and my mom's isn't exactly a mild case). I became convinced at one point that I was going to end up schizophrenic and my life would be over and thus there was no point in continuing to pursue life.

This was a very long time ago, and I am not sure what triggered my thought process to change, but I remember one day realizing that I wasn't schizophrenic yet. And that I could conceivably not end up schizophrenic or at least not end up schizophrenic for a while and that I should try to live my life. And see what happens.

You should live your life, too. Try your best. It's a day-by-day thing, you know? And I know it's hard. I know you must be so tired, and the thought of dealing with this disease for decades more sounds absolutely awful. I know this because I feel this, too. Often. I'm feeling it even now.

But imagine the things you might miss. They are making such great strides with things like the gut microbiome project. Or maybe there's some shows you like to watch or books you like to read. Maybe there is a friend or two or more out there you haven't met yet.

You should also make goals. Short-term goals. Long-term goals. Any goals you'd like. Think about what you'd do if you weren't burdened by your disease. Figure out what about your disease burdens you. See if you can inch towards something similar that you can actually do.

I don't know if you go to therapy at all, but it might be good to consider talking to a therapist.

If nothing else, try to live out of spite. Spite for this disease. Don't let it win.

I can kind of relate. I've actually been very fear-prone for a majority of my life (starting from childhood - I definitely relate to having a lot of bad things happen over the course of time) and have had to do a lot of work just to be able to function in life (and I'm still a very nervous person). Don't try to tackle everything at once - a few little things at a time or if that is too much, one little thing.

I'm sorry to hear that you had such a tragic thing happen in your family. That must have been very painful and hard to deal with. I'm glad that you see a therapist regularly. I think speaking to a therapist alone usually isn't enough for the healing process, especially if you've had a lot of trauma or painful events or "negative thought programming" to overcome. But a therapist should be good at helping guide the process. Helping you figure out how to prioritize working on the issues in your life (starting with the most bothersome) and being able to work on that issue in small steps (outside of therapy - on your own) to reduce the effect it has on your life. I'd suggest letting her know that you feel like talking about the things you're dealing with isn't enough (not that she hasn't been great and understanding but that you think you need some additional help/advice/suggestions on how to move forward from major issues in your life that are keeping you from enjoying your life).

I think those goals you mentioned sound like reasonable and accomplishable goals! They just seem impossible right now because you have a lot going on in your life.

Your goal of getting a dog reminds me of my goal to get a cat (I consider this to be somewhere between a short-term and a long-term goal for me at the moment with it being a bit on the long side - I haven't accomplished it yet but I'm hoping to accomplish it within the next 1-4 years). A companion animal can be such a blessing for helping with loneliness and depression (although, they can also be expensive and depend on you to care for them, so there can be a number of steps involved).

With that kind of goal, it helps to break things down. What is preventing you from getting a dog? Is it a housing issue (no room or the landlord or what have you doesn't allow pets?) Financial reasons? Worried your conditions might keep you from properly taking care of the animal? All of the above? Break it down further starting with the biggest problem. If it's a housing issue, is there room for negotiation (emotional support animal?)? Are you willing to move (remember moving is very stressful and also requires long-term planning)? If it's financial, break down the costs of owning an animal (adopting, feeding, toys, vet) - and determine what you might be able to do to save money and meet a goal where you could afford the dog. If it's condition-related (be careful here because depression will convince you "I can't take care of myself, let alone a dog" and it's lying to you. What helped me realize this is because I really love animals and I've done some pet-sitting and realized... Wait. I am very meticulous and practically spoiling this pet. I'd be fine with a pet of my own), then break down the things that might cause you issue and see how you can minimize the effects (for instance if hospitalization is a concern - who can you turn to to watch the pet while you're away - friend, family, neighbor, kennel?).

And if you sit down and do all that not only will the goal seem more accomplishable because you have all the facts, but also you should totally pat yourself on the back for doing all that! Because that is being a responsible future pet owner! Too many people impulse buy animals without thinking about it at all and that leads to so many issues (like perfectly good dogs or cats being put back in a shelter). But you're doing a great thing by thinking about your limitations and figuring out what you can do to take care of your future pet!

Also, once you do those things (think about how long it might take you to accomplish what you need to? A year? Five? Ten? More? It's okay if it takes a while! Conceivably, as you said, you may have forty or more years of life left in you! It's good to have something to look forward to). You're free to visualize that moment of attaining the goal. I like to daydream about what my future cat might look like or be like (sometimes, I browse adoption pages - this can make me feel a little sad sometimes but also happy to think I might one day be able to give a cat a loving home). Stuff like that.

(Also, some bright side thinking, even if the worst happens with uveitis which I sincerely hope it does not and would again encourage you not to think about other than taking care and treating it - They have seeing-eye dogs. So being blind wouldn't keep you from getting a dog, either!)

I know they have various free education courses online. I don't know how far you'd be able to get with something like a programming language (I haven't looked too far into that myself), but it's worth a look! Something to do and learn in your spare time even if you can't get too far with it. Same with language (I use a free app called Duolingo and am learning Spanish - it's very easy and fun!).

Traveling is trickier depending on where you want to travel, etc. For right now, it might be enough if you just traveled some place new that's local to you. Maybe there's a cafe or park or store you haven't been to before. Our brains crave novelty, so even something as simple as going to a place like that can be uplifting because it's new! Of course, it's still important to make sure you figure out bathroom arrangements and such before you set off anywhere. But I think going to a new place is very doable!

(Side note, I also understand the country thing. Although, for me, it's more of a disillusionment thing. Like I'd always kind of hoped my country was better than what I've actually learned it to be, and it seems like it's been getting worse instead of better)

I’m so so sorry things are so upside down NCOT. Please don’t forget when things get bad what a huge impact you make to all the people who frequent these forums. You make a big difference.
As for the dilation, you may need them to do a follow up scope to see what’s going on. It took two dilations to fix mine and I know some can collapse right away and need a second one or not have been expanded all the way in the first place.

Well folks, I've done a terrible job at keeping the depression at bay. Been really struggling. Part of it is because my vision is noticeably worse compared to a few weeks ago - I can't ignore it any longer. But at the same time, there aren't enough words with which to express how. much. I. do. not. want. to. deal. with. this. Brexit seems like light comedy by comparison, and that's basically a right wing coup taking over my country.

@Lab - Thank you for your kind words.

I will get in touch with my IBD nurse soon - I'm waiting for the biopsies to come back first, which I know can take a while. I would be surprised if I was offered a follow up scope, as the stricture seemed be mild according to my GI. The day to day symptoms don't feel mild, but I did have worse obstructions when I had a worse stricture in the past.

@Celey - Thank you. Right now I'm absolutely exhausted (I'm going to bed after this post). I veer between numbness, agitation and tearfulness. I'm not often tearful, so for that to have come back must mean I'm in a bad way. Much of the time it feels like I'm in a nightmare I can't wake up from. Then at night I have nightmares and bad dreams.

I think if I have the cataracts operation and my sight improves, it will be a massive mood lifter even if I'm still dealing with the uveitis. I'll have more hope then. But at the moment my heart sinks every time I step out of the front door or even just look at a window - the cloudiness is so bad now. However I have to find out what type of lens my hospital is using, because I'm worried that they're not using the best one, i.e. a Toric lens for astigmatism. I really should have researched this much sooner than I did, but every time I googled something about eyes I would invariably see a statistic which freaked me out and closed google.

Anyway, once again thank you. I hope it won't always be this dark and miserable and that one day I will look upon this period as a dark, dark cloud and be relieved to be out of the cloud.