Pituitary tumours, bowel cramps and hernias

[member_41028]

I’m living with the remains of a pituitary tumour, dependent on hydrocortisone, levothyroxine and testosterone replacements. I’m diagnosed as having acromegaly, so also take cabergoline to control the growth hormone that my pituitary is still producing. There are the usual mood swings and fatigue but there’s one thing that recently went critical - my digestive system. Currently my bowels seem to be on a go-slow. The critical point came at the end of March with a pain in my left side that I couldn’t locate and got worse. It fluctuated between a dull ache and a piercing stab like a ‘stitch’ that made it hard to stand or walk. This lasted the whole of April while I tried to discover the cause. Possibilities were a trapped nerve in my lower back, a urinary infection or a kidney stone. A CT scan eliminated the latter, while there were no signs of an infection. Eventually I was prescribed an anti-inflammatory that got rid of the pain within a week. That’s when I realised I hadn’t been to the toilet for days. I keep a health diary to keep track of my medication and, looking back over this, realised this had been building up for some time. I’ve had IBS (irritable bowel syndrome) before and this seemed similar, so started taking Colofac to deal with it. That, plus laxatives, got things moving again … but slowly. Typically my movements are very thin and need a lot of effort to force out. I had a consultation with a colorectal surgeon who reckoned I didn’t have bowel cancer (I had a colonoscopy two years ago). He recommended a high fibre diet and a different anti-spasmodic drug. While these have been useful, I suspect that this problem could be linked to my pituitary condition or the treatment for it. It also seems to involve more fatigue than usual. My endocrinologist tells me there are no connections he’s aware of. On the other hand a Pituitary Foundation telephone buddy I contacted has had the same thing himself a number of times and said that live yoghurt worked for him, or one of its active ingredients, L. acidophilus in tablet form. I’ve tried the yoghurt and generally things are moving a bit better, but my colon is still fluctuating from nearly normal to tight. If there is anyone else who has had similar experiences, I’d be very interested to hear from them and what, if any, other remedies they’ve found.

I wrote the above in early July but have held it back till now because my GP queried my thyroid hormone levels. My endocrinologist refuted this and I’ve been told after a more recent test that they’re normal. Just now I read Christine’s story in the Pituitary Foundations e-bulletin. What stood out for me in the horrors she went through was her hernia. I also had one around the same time as my pituitary adenoma made its presence felt, though I didn’t connect the two and neither has anyone else. I’d like to hear if anyone else out there has had the same thing.

Richard Billam, Exeter 5th October 2017

[member_41389]

Hi

I've got active Acromegaly following surgery and Gamma Knife and now on Lanreotide injections monthly. Before I had my first colonoscopy I did some research and came across the reference at this link http://gut.bmj.com/content/gutjnl/51/suppl_5/v13.full.pdf. It says some important stuff about bowel transit time, last paragraph on first page, and I pointed this out to my endocrinologist whose response was "I didn't know that".

I am currently finding the need for regular codeine to manage neuralgia has resulted in even slower transit times - although the lanreotide does its best to cure that (and it's very uncomfortable while the attempt is made). So basically constipation is a common consequence of acromegaly. I am currently prescribed Fibogel and I use one Dulcoease for every 30mg of Codeine I have to take. It doesn't keep me regular but does avoid the 2 weeks between motion issues.

All the best.
Tim

[member_41028]

Hi Tim, thanks for the reply and the link. Sorry it's taken so long to get back to you. Was too busy through November & December to log onto the forum and since then had a load of problems with computers and getting the forum to let me back in.

Sounds like you're having an even tougher time than me. I had an episode of sciatica just before the pituitary condition kicked in and was on codeine phosphate for about 6 weeks. Result of that was a hernia. I'd recommend asking your GP for a different pain killer. Can't recall which I was finally prescribed for the gut pain but it worked. I haven't had anything as severe as that since, though my bowels still act like a concertina - sometimes tight, sometimes less so. Never heard that acromegaly could make your bowels longer and wider. Don't think that's happened to mine ... or at least no-one's said so. A year or so previously I'd had a colonoscopy on my consultant's advice and they zapped a few minor polyps. I wondered if that had upset my guts even more and don't fancy doing it again.

Shame no-one else has contributed to this theme. I wish the medical teams knew more about it.

Good luck.

Richard

[member_41389]

Hi Richard
Things have moved on in the metaphorical sense as well as more literally.
I'm now on stuff called Gabapentin which is helping with the pain; it's an antiepileptic but has the side effect of modifying how your brain perceives pain. That means the amount of codeine has reduced significantly, although not to zero.
Acromegaly can cause to overgrowth of any soft tissue and the quacks never mention this but it can have effects on any organ. Typically the length and diameter of the colon increase by about 10% which doesn't sound a lot but can significantly affect how it works.
The Pituitary Foundation Acromegaly leaflet is lacking in some likely useful information in this area, for example why colonoscopies are recommended at least every 5 years, and usually every 3 if you have polyps which justify removal.
Hope you had a good Christmas and New Year.
Tim

[Marc_U]

Hi Richard,

I hope that your situation does improve.

Unfortunately, I am don't have any helpful suggestions, as although I have recently diagnosed acromegaly, and awaiting surgery at some point in the next few months, my stomach & bowel system seems to be unaffected (or not severely enough to cause trouble.

My colonoscopy was all clear

It is slightly frustrating how quiet the forum, with the exception of a very few members (such as Tim) willing to actively comment.

So I just I thought I would just quickly wish you well, even if I cannot provide any help.

Regards,

Marc

[Pat]

Thanks for bringing up the colonoscopy information - we will be working on this as soon as possible.
Pat