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Living With Adhesions - Support Group

(40 Posts)
JohFlow Sun 14-Jul-13 17:45:35

Anyone out there living with internal adhesions post - surgery?

I have had extensive adhesions for three years following surgery and later 'keyhole' adhesion seperation. Adhesions seem to be almost a 'hidden' disease despite being so common. There are few avenues to follow for long-term and effective pain relief/remedy. We may look 'normal' on the outside; yet experience extra challenges on a daily basis.

Please share your stories or views on the subject. Hopefully we can support each other.

Pickytraveller1964 Sat 28-Oct-17 11:51:33

Hi,

I'm new here but I have had ghastly adhesion problems since 2012. I had an easy C-section in 2000, then a ruptured ulcer in 2006 that nearly killed me. The sepsis probably did the most damage to my small intestine. I then got a painless incisional hernia in 2007 that was repaired. All seemed OK until 2012 when I was very active and suddenly started sprouting hernias (12). It was like a mountain range! I had a really good silicone doormat-like thing put in and it has held up. Unfortunately, that's when the adhesion nightmare began. I kept having to rush to A&E and the doctors there suspected cancer through my abdomen because it was so bad. After many tests, scans, scoping, etc. they were stumped. I was frequently hospitalised with indescribable pain. The A&E doctors often tried to focus on my ovaries as the problem, which was a) not the problem and b) wasted days and days of tests every time I went to the hospital. In a drastic but helpful move, I had a complete hysterectomy with a human oestradiol implant that has been great. It is replaced once a year and means I should never have to deal with menopause while lowering risks of breast cancer, osteoporosis and dementia down the line. BUT I still have ghastly adhesions.

In 2013, I had adhesiolysis surgery to separate my gummed-up intestines. It was only partially successful. I take 4-8 30mg codeine/paracetamol per day and have metoclopramide and Nexxium for flare-ups. I have been learning self-hypnosis through apps, which also helps.

I kept gaining weight though, despite no alcohol and a low carb diet. It was really depressing. Then, in January 2017, I felt a new aspect of pain and it turned out I had pancreatitis. After that settled, they took out my gallbladder and the wonderful surgeon did some more adhesiolysis but said I will almost certainly need major surgery with a laparotomy in the future.

Still, things are a bit better. I still take 4 codeine per day but the agonising attacks are less frequent. I was found to be lactose intolerant and also FODMAP-sensitive. I now stick as closely as possible to a 16 hour daily fast and eat buckwheat crispibread with slivers of cheddar or mashed avocado primarily. I take lots of magnesium to keep everything moving. Pasta, tomatoes, whole nuts and fibrous vegetables are dangerous, although a ramekin of almond meal mixed with butter and icing sugar and baked as a crumble topping over frozen berries offers a bit of occasional luxury, as does occasional white chocolate melts that I mix with finely ground, homemade, sour strawberry boiled candy and press into a long flat sheet (great for satisfying occasional cravings!).

So everyone tells me I am losing weight, although the scale begs to differ. Still, I think it may be the bloating receding and I can now exercise a bit more often without triggering a massive attack. Still no alcohol (sniff!) and I am basically a vegetarian now because meat tends to stick to one's innards. But it seems that by sticking very closely to a daily 16 hour fast and focusing on buckwheat crispibread, avocado and bits of grated cheddar, I can cheat occasionally and actually enjoy an occasional (every 2-4 weeks) proper meal of normal meat/fish/veg/ice cream. The fasting diet apparently reduces inflammation and so I don't have a reaction, although I found that cheating by eating cashews turned out VERY badly!!!

Initially, after my last surgery, my cholesterol suddenly increased but I think it has now dropped thanks to the 16 hour fasting. I just was tested two weeks ago and my GP has not called to warn me of untoward results, which he always does if anything is off.

I exercise a few times a week on the treadmill, using high intensity 1-2 minute sprints at a 12% incline while hanging on for dear life followed by a minute of slower jogging. I try to do 4-6 repetitions each session. Studies have shown very positive results for overall cardiac health, cholesterol levels and reduced internal inflammation associated with this mercifully short, if definitely exhausting routine. I like it because it is quick!

I still face the likelihood of a future major blockage but I am hopeful I can stave it off with this diet. Again, I can occasionally have a normal (delicious) meal without problems.

I would love to hear about others' experiences and techniques for dealing with this condition. I know what it is like to have the hospital refer one to the pain clinic, which is what they often do if they think one is just addicted to opioids. I went through that ordeal and have been certified as legitimately needing lots of painkillers. Still, I do use the self-hypnosis and highly recommend others try out some of the apps available online if they need an internal trick for emergencies.

XxXthebullxxX Tue 17-Oct-17 20:47:34

I’m the same mate caused by the same thing are they going to give you an operation?

XxXthebullxxX Sun 15-Oct-17 17:58:18

Hi all new to this group I have Adhesions on my small bowel which means I can only have a bowel of soup in the morning and that’s it I’m under the hospital at the moment and they don’t want to operate all they do is scare me with complications is this right or are they just saving nhs money, thanks Les

stephen89 Tue 10-Oct-17 19:58:28

Hey, new here. Believe I may be suffering with adhesions post appendiceptomy. Is this thread still “active”? Many thanks.
- Steve

jhcst Thu 13-Oct-16 15:02:17

I just wondered how you are all doing now? This is a relatively new problem to me - just the last few months. I had my dd last June via planned C-Section. All seemed to go relatively smoothly and, while the revocery wasn't fun, there were no major setbacks. Scar seemed to heal and I managed to get myself active fairly quickly.
Since then, I had the odd occasion of digestive trouble, but just assumed it was a bug or virus or similar - first time probably September or so.
I thought nothing of this until... April this year when I had the most severee abdominal cramps of my life, resulting in vomiting (wasn't sure if this was the pain or the cause). It was so intense I was scared and, on advice from 111, we went to A&E. They weren't all that helpful, but whilst waiting to be seen I vomited and went to the toilet more and it started to become more manageable. Again, I assumed it was unrelated until... it happened again a few weeks later. And then again. And since that time, I have had a LOT of abdominal discomfort, pain, cramp, bouts of diarrhea, constipation, vomiting. I am now confident that that first awful attack was a (partial) bowel obstruction, of which I have had several more. When it happens, they are completely disarming.

I have seen my GP who referred me (after a few visits) for an urgent colorectal surgery appt (May). He recommended a CT scan to rule out other issues, but suspected adhesions. I have nudged the hospital a few times for that follow-up appt and have now had it through - February 2017 (8 months does seem a long time to wait for test results and follow-up!). I know that if the scan had shown anything awful, that I would be seen more quickly, but given the working diagnosis (adhesions) was something that wouldn't show up on the CT scan, this seems a long wait.

Anyway, various concerns: are things going to get worse over time? If the only 'cure' is surgery, is it safe to risk this, or am I just increasing the chance of more adhesions? What does this mean for my fertility? Even if I can get pregnant, would the adhesions impact on the safety of that pregnancy? If I had to have another C section, what would this mean for the adhesions? The surgeon I saw told me to hold off trying until test restuls (but I hadn't imagined then that that would mean the best part of a yaer). If adhesions tend to deteriorate, should I crack on now rather than wait for them to get worse?

To answer the question as how to manage them, I fear my methods aren't great for long-term health, but what seems to work to minimise my flares is: eat little and often, not too much fibre, drink LOADS of water, and stop eating when symptoms seem to set in to avoid it reaching full-on obstruction.

Thanks to all, and hope to hear updates - positive or negative...

LovelyBath Thu 14-Aug-14 20:56:05

Hi Peonies, Serenity, sorry to hear you have adhesions too. Horrible isn't it? I've had several obstructions Peony, it does sound similar how you describe it. I've been told if get bad pains to 'rest' the bowel for a few hours, and to take care with fibre that's about it really oh, and if get very bad pain especially with vomiting to go into hospital as you may get dehydrated and they would want to monitor you to make sure it settles down. If not, you may need an operation to free the trapped bowel. The real problem is that if they go in and cut them, they very often reform and sometimes even more form with each surgery so it is a tricky problem.

I'm at the stage where they don't want to operate further as it would be tricky due to the amount of adhesions, so am learning to deal with this problems being a chronic one, which is not easy. Surgery only if life threatening obstruction :-( Am keeping in touch with a lovely colorectal surgeon in a nearby hospital who has given me an open referral in case of needing admission and getting pain relief (amitryptilline) from GP and low fibre diet is helping. They say I now have something called a 'conglomerate' which means organs all stuck together which is causing the cramps.

PeoniesforMissAnnersley Tue 12-Aug-14 14:40:25

Hello all,

I've been having recurrent episodes of bad abdo pain with back pain (5 episodes since April, each one lasting between 2-4 days). I had an emergency appendectomy in January and I am convinced the pain is caused by something to do with surgery - my GP thinks adhesion(s) around my bowel causing temporary obstructions which then clear.

I have an appointment with a colo-rectal consultant tomorrow and am asking for colonoscopy to rule out internal infections/issue with surgery site and also laparascopy to see if adhesions are the problem. Anything else I should ask for?

The pain is very bad - I usually can't eat for 2ish days, sometimes vomit and find pain meds don't take the edge off it. The pain is also noticeably worse if I do eat when I am ill. I'd decsribe it as a strong cramping pain near the appendix site, with pains elsewhere in the bowel, extreme bloating and back pain on the same side as the appendix which is so severe I can't lie flat.

HowsTheSerenity Wed 11-Jun-14 08:27:33

Oh thank jebus! Im not the only one. I have horrible adhesions and no one else I know does.
I get the most horrible stabbing pain in my right side just under my ribs which is only relieved by pushing very hard. Buscopan and nurofen are useless.

Artistic Wed 11-Jun-14 08:23:49

LovelyBath - that's fantastic advice. I will speak to my consultant in advance. Am also tempted to go private for the delivery for this reason alone.

LovelyBath Tue 10-Jun-14 22:30:29

Hey MistressMouse I've just found a good support group for adhesions and there are quite a few like yourself, it is here come and join us if you like xx ps horrible thing isn't it.

https://www.facebook.com/groups/414454158602482/

MistressMouse Tue 10-Jun-14 20:58:05

I'm going to jump in. I've frozen pelvis, with my bowel, ovary and Fallopian tube stuck together. I had an ectopic pregnancy in 2003 which didn't help with adhesions but my consultant said at that time my insides were an established adhesion mess.
I had an emergency c section in 2005 with a ruptured bowel which has made things worse.
I am in constant pain.

LovelyBath Tue 03-Jun-14 21:06:47

I just remembered that when I spoke to the surgeons about a possible pregnancy after the adhesions surgery they said that if I needed a c section they would recommend getting one planned rather than an emergency due to the adhesions if possible. (eg breech) so it might be worth mentioning the adhesions or possibility of them to your doctors. I think it was mainly as in an emergency situation it may take a while to deal with the adhesions but hopefully none of this will affect you x

Artistic Sun 01-Jun-14 13:06:27

Thank you LovelyBath & wish you a trouble free stomach for the future.

LovelyBath Fri 30-May-14 12:03:14

Hi Artistic, it's good to hear that your adhesions settled down, even after major bowel surgery. I've also had major bowel surgery and after several episodes of problems they have thankfully got a bit better.

I am not sure about adhesions after c section however maybe someone else will know. I do think that a second birth can often be easier that the first though and as you had a vaginal birth the first time there is a good chance it will be OK (unless there is something unpredictable like a breech baby of course)

Take care and good luck for the pregnancy

Artistic Wed 28-May-14 15:37:29

I've had adhesions in childhood. Am not sure if adhesions led to surgery for me or the other way round. I've had 3 major bowel surgeries up to the age of 15, but nothing after that. When I had DC1 I was very keen to not have a c-section as I didn't want to 'wake up' the sleeping demons. luckily i didn't need it. Now pregnant with DC2 & praying that I get away with a vaginal birth this time too.

My surgeon had advised me that more surgeries lead to more adhesions, and if the person is not in pain then a surgeon (who may be operating in an area) should let the adhesions 'be' rather than try to remove them.

Has anyone had a recurrence of adhesions only because of c-section, with no problems before that?

LovelyBath Wed 28-May-14 14:57:14

Hi, I just wondered how everyone was getting on with their adhesions? I had an open surgery to remove them and a section of boerl over a year ago. I'm slowly starting to get pains again and hoping it doesn't develop into anything further.

JohFlow Wed 17-Jul-13 22:20:15

''bump''

yamsareyammy Wed 17-Jul-13 22:12:37

In my case, I decided I had nothing to lose.
I did to the extent that all surgery carries a little risk. But apart from that, I figured that even just opening me up,[tmi], they might find something, even if not the adhesions.
And quite frankly, at that stage, me especially was running our of hope.

Yes, I know that I am always at risk of adhesions.
It was described to me as flotsam and jetsom floating around inside me that finds a scar to stick to inside, and then the mass inside just gets larger as more material adds itself on.

Am I frightened of more. No. But I am aware, like you, that it can strike again.
One of the first things I moght do, is try to track down the surgeon I had many years ago. Though it would be likely that that person has retired by now. But they may have trained someone else up.

JohFlow Wed 17-Jul-13 21:37:04

I wondered if pregnancy could have that affect on adhesions too Cleverly. Interesting that your knee may also have been affected simultaneously - but also makes sense if weight-bearing increases (as would be naturally expected in a healthy pregnancy).

I have bowel adhesions too.

Were your scars infected before they healed? Sometimes that leads to lumpy/keloid scarring on the outside ; but it could also affect healing internally. There is somewhat of a medical link between infection and over-proliferation of adhesions internally.

CleverlyConcealed Wed 17-Jul-13 20:26:52

I feel ( and yes I get what you say about instinct) that my adhesions were actually helped by my pregnancies. You know that thing about having excess stretch in your ligaments etc when pregnant? I really feel that it helped my adhesions and they settled into a less troublesome bond. I'd had some fairly major knee problems in my teens too due to ligament damage and scarring which almost completely resolved, spontaneously during pregnancy and I'm sure it's because my body found a new 'give'. Does that make sense?

Also I was very lucky that despite having long-standing bowel adhesions that they didn't seem to affect my fertility. My stomach scars are fairly shocking though, lumpy and overgrown in places and I expect that's reflected on the inside. It makes sense that adhesions relating to gynae procedures would affect fertility more than bowel even though they are close neighbours so to speak.

JohFlow Wed 17-Jul-13 19:51:11

Welcome Cleverly,

Thank you for your comments

Sounds like fasting works preventively for a few in the group with bowel complications. I find that hot, sweaty, bloated, nauseous feeling naturally makes you want to give food a break anyway.

Well done to you for continuing with you family despite the interventions that you have already had. It's lovely to hear that you had three healthy kids. Doctors are not sure of the status of my fertility and that leads me to question whether any want for further children outweighs the potential risks. It feels a very personal/womanly question to resolve. Indeed, I think that there is a massive area around the affect of adhesions on fertility and how women feel about themselves if their equipment is either partially or totally non-functional. Would welcome comments from anyone who is willing to share..

This idea of not being able to prevent adhesions (whilst probably true) does not sit comfortably with me. I sometimes feel that I am subjected to pain because I can do nothing to prevent it. Like Orange I feel sometimes that adhesions can be a like a ticking time bomb. There's something subtly intimidating about something invisible lurking. I am ever hopeful that something will be found that will help others in our situation. Thousands of people a year develop troublesome adhesions - surely there is enough demand to warrant research and new treatments(?)

Yams - pain is usually a bodily warning that needs looking into. 50/50 is an odd ratio to try to make a decision on- but in your position; I think I would like to know too. Many of us are blessed with intuition. Sometimes we 'just know' when things aren't right. Even in the absence of medical proof.

What Orange say about support when pain varies is very interesting. Pain itself is sometimes inconsistent. It shifts levels and migrates. Its also difficult to actually see (unless you are doubled over). Its difficult to measure with scientific accuracy. I find my relationship/tolerance to it seems to change regularly too. Sometimes I thank the pain for stopping me moving in a way that will hurt. Sometimes I swear at it -for the hag it is! I too have received the 'are you sure?' eyes when describing the character of pain. I'm not sure what training doctors/nurses generally get in dealing with pain. Hopefully; someone can share light on that question?

CleverlyConcealed Wed 17-Jul-13 17:32:57

Sorry that you are struggling with adhesion pain JohFlow (and everyone else)

I had adhesions following bowel surgery as a baby; I was plagued throughout my teenage years and had several hospital admissions for partial bowel obstructions. These usually resolved after a period of no food and ng tube/sip/suck treatment.

In my twenties they led to a full bowel obstruction which needed open surgery to resolve. I was pretty sick and had a 10 day hospital stay. Since then (touch wood) I've been fine, just the odd bout of pain but no admissions - had 3 successful pregnancies too with no problems.

My surgeon said that I am always at risk of them recurring as if your are susceptible to adhesions then there's nothing that can really be done to prevent them. I get a bit panicky over any stomach pain and tend to go with a 48 hour fast if I get any pain, though my adhesion pain is such a specific pain that I know immediately what it is.

orangeflutie Wed 17-Jul-13 16:34:14

*sometimes

yamsareyammy Wed 17-Jul-13 16:28:02

Could have or should have added, that I think I ended up seeing a consultant, cant remember if it was the same one each time, 3 times in total.
On the third occasion, both of us were fed up with the situation.
Basically he or she said that there was a 50% chance of the pain being due to adhesions.
Did I want to be opened up to find out, even though the chance of it being that, was 50%.
I said yes.
This happened 25 years ago. Not sure if everything would be the same nowadays.

orangeflutie Wed 17-Jul-13 16:17:09

JoFlow yes I do worry that if it's adhesions causing my pain, they may get worse. For this reason I asked my doctor to refer me back to gynae as well as physio as the treatment process takes so long.

And the last question I totally identify with. The pain I have moves around sometes on an almost hourly basis and varies in severity. Some days it's so slight I think I must be making a fuss about nothing and others days it's back with a vengence and I have to resort to heavy duty painkillers. I've seen my doctor twice in the last months and described to her how the pain moves and varies and it definitely makes diagnosis a problem. When I first saw her I worried that she thought I was making things up because of the inconsistencies.

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