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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.

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 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 Sun 01-Jun-14 13:06:27

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

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

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 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/

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.

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.

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.

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.

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...

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

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

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?

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.

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