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Endoscopic balloon dilation and symptom relief

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Crohn's Disease
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Posted 1/4/2017 1:15 AM (GMT 0)
The last time I saw my GI he brought up endoscopic balloon dilation for the scar tissue that has developed again. I have my first bowel resection in 1999, in 2011 I required a second due to scar tissue, and now I'm facing a third. After each one I went into full remission.

I have severe Crohn's disease, but my day to day is fairly normal. When I have a flare, I am usually asymptomatic until I develop a full obstruction. At the moment, my primary symptoms are fatigue and an increasingly poor immune system. I cannot go to dinner with friends without spending two days in bed, and I am a grad student so I spend most of my days working on papers for only an hour or two a day. I also cannot heal from a normal breakout without antibiotics. But a colonoscopy a year ago revealed strictures that prevented the scope from passing.

This sounds like a great option, even if it involves multiple passes. My question is what symptoms people felt relief from? I am getting married in a rather large wedding in 6 months (think 200 people, including at least 1 US Senator, multiple US Representatives, and a budget of $75k. I need to have energy in order to enjoy this. Yes I have considered having a small wedding, but this is the wedding of my dreams).

In your experience, have you experienced relief of fatigue and malnourishment from the endoscopic balloon dilation, or is it just relief from GI symptoms. If I have surgery, it needs to be in the next month in order to have time to recover for the wedding and I don't have time to try the balloon dilation, let it fail, and then need surgery. Any suggestions welcome (aside from a small wedding. I will not let Crohn's take this away from me.)
Posted 1/4/2017 12:23 PM (GMT 0)
Do you currently have active Crohn's? If you do, that's most likely the cause of your fatigue. Secondary issues, e.g. anaemia, medication side-effects, can also cause fatigue. Strictures by themselves don't cause fatigue, although in my experience partial obstructions are very draining. You don't mention having any obstruction symptoms though.

I can't answer your question directly, since I've never had a balloon dilation. I can only make educated guesses. It's hard to know what to advise to be honest. Hopefully other people will chip in, but balloon dilation doesn't seem to be a very common experience.

One more option for you to consider if you have multiple, short strictures: strictureplasty. If you haven't already, I'd book an appointment with a colorectal surgeon to discuss surgical options - a surgeon will know more than a GI about surgery.
Posted 1/4/2017 1:10 PM (GMT 0)
I do have active Crohns, I'm just mostly asymptomatic. I can tell when I'm flaring because I don't absorb my meds very well, which I can tell when I take things for anxiety and depression. I was on 3 or 4 prednisone tapers in 2016 due to minor flares. One sent me to the hospital because I had just moved and didn't have a GI so waited, the others weren't bad, at least not full instructions, I was able to walk into my old GIs office. The GI symptoms, pain and diarrhea and etc. just aren't my primary concerns because they don't affect me often. Given my past, they will be in 6 months to a year. What is my concern is my lack of energy and my immune system and being able to enjoy myself at my dream wedding.
Posted 1/4/2017 2:09 PM (GMT 0)
As long as you have active Crohn's, the fatigue will be there. Iron/B12 deficiency frequently accompanies active Crohn's as well - have you had either of those checked recently? Low iron/B12 is easily correctable with infusions. Should get your thyroid checked too. It makes sense to rule out the most common causes of fatigue first.

What meds are you currently on for your Crohn's? Prednisone alone isn't enough to treat it.

Post Edited (NiceCupOfTea) : 1/4/2017 7:12:37 AM (GMT-7)

Posted 1/4/2017 2:29 PM (GMT 0)
I'm on Remicade and 6-mp. Remicade since 2011, 6-mp since early 2016 (actually 6-mp for most of the 20 years since my diagnosis, my GI took me off it temporarily but realized I needed it and put me back on it). I've had energy in recent years. I was actually training for a mini-sprint triathlon a year and a half ago.

My iron is low but in the safe range, b12 is high because I get vitamin IVs to give me energy. It's the Myers cocktail, and then I used to get a specialized one but moved and can't get them as often. That may be the reason my energy declined over the last few months, but even with Crohns for the past 20 years, I'm only this low on energy in the year preceding bowel resections.

Thyroid is fine. Adrenals aren't but I see a natural doctor and we're throwing everything at those and it's not helping much. My adrenals improve but my energy doesn't very much. I have tried going off all my natural meds to see what happened, I got very ill, so my integrative doctor is what is keeping my functional.

My question is whether a balloon dilation will improve absorption, i.e. stop the flaring, as well as a resection.
Posted 1/4/2017 4:03 PM (GMT 0)
I doubt a dilation will work as well as cutting out the diseased part of your intestine. It's not going to stop the flare up; it's just a mechanical widening of a stricture. There's somebody on this board who's had 13 dilations (think that's the right number..) in the last year alone, 'cos he can't afford to lose any more bowel due to having short bowel syndrome. It doesn't sound like a lot of fun to me; I think if it was only a small amount of bowel involved (a few centimetres or inches), I would rather have it removed.

Since you've been on a few courses of steroid, you could also be suffering from steroid withdrawal symptoms. Steroid-induced fatigue absolutely wipes you out, to the extent that you described. I dunno what you mean by adrenals improving, but steroids do suppress the adrenal glands while you're on them and - if you've been on them for too long or too often - for quite some time afterwards.
Posted 1/4/2017 4:19 PM (GMT 0)
I have experienced the adrenal fatigue from steroid withdrawal, and since my last round of steroids, I declined as normal, improved, and then plummeted. I've also been watching my weight the last few days and without trying I've like 5 pounds in the last week. I've been tracking my weight for months because I did want to lose a bit for the wedding, but only lost 5 trying over the course of 4 or 5 months. And then suddenly in a week I've lost another 5. I know weight and energy can fluctuate, and it may be the steroids, but i also know I'm flaring. I have slight pain periodically, which even that is abnormal for me. I know I'm heading towards major flaring, and I am asking for surgery before I need it, but only by roughly a year given my history. And with a big wedding coming up, I don't want to risk ruining and potentially cancelling that because I'm a bit early on surgery.
Posted 1/4/2017 5:26 PM (GMT 0)
If you had strictures a year ago, then it shouldn't be too early for surgery. You don't have to wait until you have a full blown obstruction and require emergency surgery. In fact in many ways it's better to have elective surgery - it's safer for a start.
Posted 1/4/2017 5:59 PM (GMT 0)
I've talked him into moving up the timeline. We're increasing meds again, scope end of January, waiting a few weeks, and then surgery if I still don't improve.
Posted 1/4/2017 6:49 PM (GMT 0)
Seems like a decent plan. Best of luck, both with the Crohn's and your wedding in a few months.
Posted 1/5/2017 1:53 AM (GMT 0)
I had two dilations this summer that worked well. They helped with some discomfort i had a well as extreme nausea/some vomiting and lack of appetite. I was only eating liquids and very soft foods for a while before. It Can only be done if the stricture is not made up of inflamed tissue. Good luck!
Posted 8/27/2018 7:14 PM (GMT 0)
I realize it has been a while, but if you went ahead with the dilation, do you remember what it felt like after your balloon dilation of your ileum? I had one and the pain spiked right after the anaesthetic wore off and I'm trying to get some idea of if this is normal and how long it will be until the symptoms improve.

Thanks
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