IBS Sufferer Seeking Comfort!: I’m 2015 I was... - IBS Network

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IBS Sufferer Seeking Comfort!

IBSadvice
IBSadvice

I’m 2015 I was the diagnosed as having chronic IBS. I had all the various tests done which came back all clear, the consultant toyed between cyclical vomiting syndrome and IBS as when I have an ‘episode’ the end result is violent vomiting and diarrhoea!

I can go for months at a time without any ‘ ‘episodes’ then it will flare up out of control!

When I have an ‘episode’ I start with stomach cramps that come and go like Labour contractions, each time they get worse, the only thing that helps is to sit on the toilet, however at that point I cannot pass a bowel movement. The pains build up and up over several hours each time the urge to try pass a BM (which in itself is painful as I can’t pass anything)

The pain then peaks, I start vomiting and diarrhoea at the same time! This will continue until there is physically nothing left and I’m beyond exhausted! I then have stomach ache for a few hours until I eventually fall asleep.

Episodes are almost always an evening, lasting through to the early hours of the morning. Once I have nothing else physically left to vomit or excrete, i then have the aftermath side effects - headache, shaking uncontrollably, stomach is sore but not cramping as before ect. Then I’m sometimes unable to pass any bowel movements for up to a week afterwards!

Nothing Helps, I’ve tried Buscopan, Amitriptyline, and various other antispasmodic medication.

I had my first child in March 2018, throughout the hole of my pregnancy I never had a flare up once. After having my child I’ve also remained IBS free to the point of at my last hospital appointment with the consultant (Nov 2018) I was discharged! Now all of a sudden over the last few weeks it’s started again! The past week alone I’ve had 3 episodes! My latest one been now!

It’s so much harder to deal with when having a young child to care for, obviously my partner is here to help but when he goes to work it’s hard as I’ve been up all night in pain and then I’m exhausted looking after my little one.

This ‘condition’ is so frustrating! It’s like they label you with it as a last ditch attempt as they don’t have a clue! I would rather be in labour over and over than the pain this IBS causes! I have literally been to the point of collapsing with this before when the pain got so bad!

I never New there was such a site before today! And I guess in desperation I’m hoping someone reads this and has some sort of miracle go to pill or anything they have found helps!

Thanks for reading!

One desperate, tired mummy!

13 Replies
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Hello there im so sorry to hear whats happening with you its not much fun and i wish i could offer up some answers for you. I have had IBS a long time now and it has changed over the years but i also felt bettet when pregnant then it came back with avengeance. I was also dismissed from gastroenterology with no specific tests etc and basically told to get on with it. I know this might sound daft but i always feel like theres a build up before a bad flare up. I can feel my body building up to it. New Years resolution is to eat clean. No stupid diets etc just clean eating see if it helps. Also totally get where your coming from having kids. Mine are both in primary school now but the morning is my absolute worst time when i feel awful and im trying to get them and myself out the door to work when i just want to hide in bed. You are not alone my friend and i hope someone can offer some more helpful advice for you x

IBSadvice
IBSadvice
in reply to Montykat

Thank you for your message! Hopefully I can find something that will help x

Goodness, I am so sorry that you’re suffering so badly. It’s just so typical that you’ve been left to get on with it. My experience is the same.

I’m guessing I’m quite a bit older that you - I’m 44 and have two kids, 16 and 19. Like you, I was IBS free during both pregnancies and it was mega worse after my second was born. I was having the labour-type pain before finally exploding on the toilet. This would happen to me most evenings, after my dinner. I know exactly how bad that pain is - you can barely walk with it. I was never vomiting with it though.

I cut wheat out of my diet completely and it made a big difference to the diarrhoea. Wheat intolerance is totally different to coeliacs. If you’re intolerant to wheat, then it slowly ferments in your gut, causing a slimy residue to build-up in your gut lining. This means that everything you eat will basically come through you at speed! Some people with wheat intolerance will experience this everyday, or if it’s not such a sensitive intolerance, it can build up and cause an eventual episode. I’m wondering if that’s partly what’s wrong with you?

I am also convinced that hormones play a huge part for us women with IBS. I used to take a contraceptive pill before I had my kids. After baby number two, I couldn’t tolerate it anymore (made me sick) and I also had severe PND. So, obviously my hormones were all over the place. When my youngest was about 8, I got a Mirena Coil fitted and it was much better. I had no side effects, and best of all, it settled my IBS down. Even though I had given up wheat, I still had IBS attacks and the Coil helped those attacks to become less frequent. So I think the combination of the Coil and no wheat, pretty much stopped my almost daily diarrhoea.

However, I was still having episodes of the appalling pain and sudden diarrhoea 😳. I went back to a gastro and after tests and a lot of discussion, he told me I was actually suffering with constipation. And that was causing the “episodes” of pain and diarrhoea. He explained that the movement of the gut (peristalsis) is basically like a caterpillar....a muscle that moves and spasms (usually painlessly) in order to push the gut contents along. If you’re backed-up, that muscle is basically pushing against a wad of poop, which eventually gets mashed up and that’s what causes the diarrhoea. It’s called overflow diarrhoea. So even though I thought I was still suffering with IBS-D, I actually had IBS-C! So I take an osmotic laxative (Laxido) daily in order to keep regular.

I’m generally a lot better, but I still have IBS. My gut is slow and my bowel likes to store poop 😬. This gives me backpain and a few bladder issues. I also have a lot of anxiety about IBS, but I think that’s just the toll of years of having IBS. I have days when I just feel nauseous, sluggish and sore. But it’s a hell of a lot better than it used to be.

Sorry for the novel, but I’m hoping maybe some of what I’ve said bing resonate with you and give you hope that there are still some things you can try. I wholly understand how very hard it is with a little one to look after. It’s exhausting and distressing. Don’t give up - have a look into the Mirena Coil or giving up wheat (in all forms) xxx

IBSadvice
IBSadvice
in reply to weegmack

Thank you for your reply.

I’m 28, I actually thought I had overcome IBS but obviously something is going on. I should also mention that my mother has been the same as me since she was in her late teens (apart from the vomiting) and had the same tests over and over to be told IBS. Then 4years ago when she turned 42 she had the colonoscopy redone again and this time her biopsies shows ulcerative colitis, a form of inflammatory bowel disease. Around a year later I had another massive flare up over a 6 months period, I too had suffered with the issue from late teens on and off but had never had the bottle to go through the colonoscopy and various other tests put forward to me, until 2015!

The flare up as I was saying lasted 6 months and so I finally bit the bullet and provided doctor with stool samples and bloods, they came back with worrying results which strongly suggested I too had IBD, like my mother. Dr said the only way to get a firm diagnosis was to have biopsies taken via a colonoscopy. The procedure was done and the biopsies came back fine, it was then I was labelled with Chronic IBS 😩

As I’ve already mentioned I am always sick when I have an episode too which is why they kept going backwards and forwards between IBS and CVS, but I looked into CVS and was adamant I didn’t have that, i didn’t have many of the symptoms associated with it. So eventually they left it as IBS.

After having my child I had the The non-hormonal copper coil fitted, I couldn’t bare been back on the contraceptive bill as it made me feel terrible and although I toyed with having the mirena, slow releasing hormonal coil I had decided that I wanted to try the copper coil so that it had no effect on my hormones. I luckily don’t suffer with PND, however the past few months have been stressful due to legal action been taken against my employer for pregnancy and maternity discrimination, so it very well maybe playing a part in this recent flare up. I have also recently moved house which that in itself is stressful and I have put on weight!

Prior to getting pregnant I joined slimming world in 2016 loosing 4st, all IBS symptoms stopped which I put down to clean eating and loosing weight. I think I really need to get back to the clean eating side of things as all the medication I have so far tried have bore no impact.

Is there a test the doctor does for wheat intolerance? I’m not sure if I’ve already been tested? I need to look into this further and possibly look into swapping to the mirena coil too as since having the copper coil fitted my periods last 14-17 days per month 😮 which is not great but the copper coil can make periods last longer! I’ve persevered for 6 months as the doctor said it can settle by then! But it hasn’t I think a visit to the doctor again is needed!

That sounds horrible. One of the worst things about IBS is it's unpredictability.

Here is an article on IBS and hormones that might interest you.

webmd.com/ibs/guide/hormone...

I wonder if maybe changing up your type of contraceptive might be worth trying? See if you can recreate your hormonal levels during pregnancy a bit? A novel approach for yur doctor to look into.

Vomiting is one of the rarer symptoms with IBS. Your symptoms almost sound like you have a temporary or partial blockage. Especially with the colicky pain for ages with no relief followed by all out chaos.

You said you had a bunch of tests done. Did they check your gut for narrowing? Or if you have a hernia? Have you had stomach surgery before? Could it be caused by adhesions? Do you suffer from bad constipation between attacks?

Thank you I will Definitely look into that, I basically wanted to stay away from hormonal contraceptives as when going back to using my previous method of contraceptive after having my child i noticed how they affected my moods. They made me feel anxious and irritable, I then realised they had always made me feel that way, but having being on them for such a long time prior to conceiving it wasn’t until having that break from taking it that I made the connection.

So I now have the non hormonal copper coil fitted, which obviously has no affect on my hormones. I need to get it looked into further as another post has stated the mirena coil has helped them, which is a slow releasing hormonal coil.

With regards to the tests I’ve had done, they are as follows..

Barium X-ray, colonoscopy, bloods and stool sample, which had a very high calprotectin level to the point the doctor was almost certain I had IBD.

That was the extent of the tests done. I’ve been kept under the consultant since 2015 trying various antispasmodic medication.

But as the flare ups are so sporadic it’s hard to find any real kind of treatment were I notice a difference.

I wouldn’t say I suffer with constipation as such, I usually go once/twice a day no issues. But after an episode I definitely feel like that causes constipation and during an episode it certainly feels like I’m constipated as I’m trying to go for hours, knowing that is the only relief and end to the episode, it builds up and up and the pains become more frequent to the point of the chaos!

When I have an episode I wish I had a strong laxative to hand just to get it over and done with! As if I could just empty out then the ordeal is over and I don’t have hours of agony!

I haven’t had stomach surgery as far as I’m aware, I did have a laparoscopy which was keyhole in 2009 as at first they thought the pains could of been gynaecologically related.

I’m going to monitor again but I don’t feel like there is a pattern between been constipated prior to an episode. I know for a fact this time I definitely wasn’t as I had passed BM a few times yesterday before the attack.

It’s all just so frustrating!

Kilgh
Kilgh
in reply to IBSadvice

It is very strange you had a high Calprotectin level though. And having your mother having IBD. Weird. Your poor doctor must have been WTF? How do you NOT have IBD? lol.

High Calprotectin means inflammation of some kind is going on. I wonder if it is worth having a monthly stool sample to track the inflammation levels. See if they remain the same or fluctuate. Did your bloods also show signs of inflammation?

Did they rule out a parasitic infection? Giardia maybe? Did they check for that with your stool sample? Parasites can hang around for ages if not treated and cause intermittent illness. Travel to any tropical areas before this all began?

IBSadvice
IBSadvice
in reply to Kilgh

It is very strange, the doctor was almost certain I would be getting the same diagnosis. But when I had the biopsies I was told that they were all clear and that I couldn’t have IBD if this is the case. However my mother has all the same tests as me when she was my age and several lore times, it was never picked up then, it wasn’t until she reached her 40s that she got a diagnosis.

I’m not sure if they tested for parasitic infection but I would hope they did? But might have to bring this up when I visit the doctor, I’ve been badly since I wrote this with diarrhoea! It hasn’t seemed to settle this time.

I haven’t been anywhere tropical either, I should be so lucky! X

Kilgh
Kilgh
in reply to IBSadvice

Had a look about and found this study which suggests if they took your biopsy from your rectum then it is very possible they could have missed IBD. Especially Chrohns. Only 40% accuracy! If you don't mind me asking, which type was your mother eventually diagnosed with?

ncbi.nlm.nih.gov/pmc/articl...

Also, I saw on another website, a person who went 6 and a half years without diagnosis because her IBD was in a place that couldn't be accessed by colonoscopy or biopsy. She was finally correctly diagnosed by swallowing a pill cam that found the source of her inflammation. Right after her story on the same site is a man who went 19 years without diagnosis until he took the pill cam. It took just ten minutes to find his area of inflammation! Both in the small intestine. Is this test a possibility for you? Again it does not seem right with your Calprotectin results and your mum and your symptoms that you don't have IBD.

inflammatoryboweldisease.ne...

Hello, Poor you. I also experienced the vomiting, diarrhea, shaking episodes, also usually hitting in the evening or night from when I was a teenager until my forties and have never come across anyone with the same problem. I would usually faint during the vomiting episodes. The doctor always dismissed it as just a virus. Like yourself, it was a nightmare when I was a young mum. I was often off work and am sure they must have thought I was making it up. I tried becoming vegetarian which seemed to help a bit. Have you tried any of the anti sickness medications or an occasional codeine phosphate which might help pain and diarrhea? I wish I could offer you other suggestions. Now I am retired IBS alternating has hit but thankfully no vomiting. I take anti nausea pills and sometimes imodium and codeine. I can no longer tolerate the vegetarian diet though. I hope other might have some ideas for you.

IBSadvice
IBSadvice
in reply to Katerina1

You sound exactly like me!

I too have had to take a lot of time off from work in the past, occupational health were brilliant though and basically backed me, explaining to work I’m doing everything I possibly can to be in work ect. I think the issue is because there are all different strains of IBS and it affects people so differently when people hear you have it, I don’t think they appreciate how tough it can be.

I’ve never heard of anyone else who vomits with an episode either. I think it’s gets it the point that the pains are so bad and I can get pass a BM that it gets too much and it induces vomiting! I too have on occasion come to in the floor where I have collapsed in the middle of an episode! This overwhelming feeling of become too hot all of a sudden and then I’d wake up in a heap! It’s terrible. I haven’t had one quote as bad as that in a while but they are still so difficult to manage, especially with a young baby.

I have found if I follow slimming world, which is ‘clean eating’ it has helped in the past! I really need to get back doing that!

Thank you for your message 😊

Congratulations on your little bundle of joy! What most likely has happened, that during your pregnancy, your intestines were stretched as your baby grew. After delivery, your intestines don't shrink, they are loopy. It causes IBS to become worse. However, sometimes women develop adhesions inside their abdominal cavity. Adhesions are best described as bind weed on the inside. They grow and attach themselves to anything they find. It's normally found in those that have had c-section or other surgeries in the abdomen. If they are strangling an intestine, I could see them causing vomiting. You might have hemorrhoids, which is very common to pregnant or new mothers. You might try suppositories or edemas. They might relive the sensation of constipation. I think they are treating you for postpartum depression. Vomiting and diarrhoea are not symptoms of that condition, however. Postpartum depression is an emotional thing that causes irrational feelings of loss coupled with considerable crying. You haven't described anything like that. Believe me, postpartum really makes you feel crazy!

You sound exhausted for good reason. I think something has gone wrong with your system. It might be possible that you developed a hernia from labor and delivery. I seem to recall hearing that hernias can cause vomiting and diarrhoea. Have your doctor check you for one of those. It would make sense that it only happens every so often if intestines slip back and forth through the rip in the abdominal membrane, which is what a hernia is.

Best of luck. I developed an infection from my first delivery, which had to be a c-section because he was too big to deliver normally. The adhesions came years later. I automatically had a second c-section because I wasn't going to go through the nightmare from my first delivery. But he was big as well. So my intestines really became excessively loopy.

Thank you 😊

To clarify I have always vomited when I have an ‘episode’ since my early teens, This is not a new side affect since having a baby and I wouldn’t say the condition is any worse than prior to having my child, just that this is my first flare up since before pregnancy.

I’m not been treated for Postpartum, fortunately, I do not suffer with this. Which I am very thankful for. I also had a normal delivery so haven’t had any form of surgery since my keyhole laparoscopy in 2009. I’m also pretty sure that I do not have a hernia, I have just had an ultrasound and X-ray of the area for another reason, but I’m sure they would of noticed this if there was an issue, but I will mention to the doctor, thank you.

Im also pretty certain I don’t have haemorrhoids, I’m familiar with the condition and have none of the side affects associated with them, I’m also 10months postpartum the flare up has only just happened, so I don’t feel that this is something related to pregnancy and having a baby, however I will bring this up when I manage to get to the doctors also.

I appreciate you taking the time to respond, thank you for the advice😊

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