Fissure, Fistula & Coeliac Sufferer

Please come in! Start your own personal thread, tell us a bit about yourself...and your fissure, of course. Welcome!

Return to New to the forum? Introduce yourself here



Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 05 May 2013, 22:09

Hi Miss K,
I live in Perth, but I was in Melbourne for a wedding when all this started, so thats probably where you got the Melbourne thing from! I love it there, would love to live there too, and have been contemplating it, as my brother lives there, and so does my best friend. My other brother lives in Canberra, so I'd be closer to him too.
I can imagine that living in Central Aus would make it hard to see specialists! It's good that your general surgeon has a plan and a deadline for you.. it seems that they are taking your issues seriously, which is good. Mine do take me seriously, but after 6 months, it feels like they are just about temporary fixes, and don't have a long term plan in mind for me. Which I know is difficult for them, but for me, 6 months is just too much to bear.
I haven't been able to work at all, except for a few days here and there, but it's just been too difficult with the pain, and if I have to have a BM, I have to race home, because I always need to sort myself out with a shower or a bath after because of the pain, and then sort myself out with painkillers.
Had another BM last night, that's 1 a day for the last 2 days, but it's still incredibly painful, still having a lot of blood loss, and I was awake until about 5.30am as I couldn't sleep due to the pain. Which is really difficult when you have 3 kids at home to look after!
Talked to one of my surgeons this morning, and he is very compassionate and sympathetic to my cause. I asked him about a temporary colostomy, and he said that was quite a drastic measure, but they wouldn't rule it out if I need it. He is meeting with a Professor of Colo-Rectal surgery this morning to discuss my case, as apparently she is the best in the field in Perth. So I am waiting on a call back from him to see how it went, and he is hoping to get me in with both himself and the professor this week to discuss my options. Which gives me a certain sense of relief!
I have bought some Quinoa, I haven't cooked it yet, but I am making a chicken and vegetable soup for dinner tonight that has quinoa in it, so I will see how it goes!
How long have you been having your problems for?
Kristy38
Fibre Addict
 
Posts: 24
Topics: 2
Joined: 28 Apr 2013, 16:00
Location: Perth, Australia
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby PIA » 06 May 2013, 00:48

Hey Kristy, fellow Perth-ite well WA anyway. Seems there are a lot of Aussies on the forum at the moment. Maybe the time of year. I am so sorry to hear how much pain you are in. As others have said...constipation seems the culprit for you and the vicious cycle will continue until you can get it sorted. Image Can I suggest you keep a food and BM diary. You must find the foods that contribute to your own personnel problems. You can find lots of information here for others experience to guide you but everybody is a little different.
I am six months into my last fissure tear. I won't go into it in depth as you can find my story on this forum if you are interested. I am not healed but managing and improving day by day. I cannot afford to get constipated. For me I use daily Movicol, prune juice, oatmeal, brown rice, lots of water, limited red meats. I have had Botox weeks ago but still need the rectogesic after a BM to avoid the spasms that will reduce blood flow and prevent healing. I am a big fan of coconut oil which I use on baby wipes after every visit to the loo. I also freeze it and use it as a suppository after a BM.
I have recently used proctecydal suppositories that have anaesthetic and steroids in them an hour before a BM to help prevent the inflammation and pain from BM and this avoid the spasm. I have very deep fissure apparently and understand it will take a long time to heal. There is light at the end of the tunnel for us all. Xx Pia Image
PIA
Proctosphincteranalogist
 
Posts: 177
Topics: 4
Joined: 30 Dec 2012, 17:00
Location: Australia
Has thanked: 0 time
Been thanked: 1 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Miss K » 06 May 2013, 02:31

Wow happy there are other Aussie's floating around with this (well not happy but you know, less like a freak Image
6 months is a long time to be dealing with this, especially with multiple hospital admissions, feel for you both I’m pretty exhausted after only two months. Reading back over your posts it does seem maybe a back to basics diet approach might help the constipation side, maybe won’t fix the whole problem but with managing the pooping part.
Yeah when I first met with the surgeon I showed him the diet plan I was thinking about based on what I’d read here he pretty much said “nah eat whatever you want, just use the cream another 8 weeks and if not fixed we’ll look at other options”. Which is just ridiculous really, the whole problem is an issue with digesting food. But sounds like your medical team are much better Kirsty thankfully!
Good they’ve identified the Coliac’s too, so you have a good starting place for the right diet. And routine might help, as boring as it is, maybe eating the same things day in day out for a few weeks? If it’s any help at all this is my diet and it does seem to be working for my stool consistency (have had issues with the constipation too):
Breakfast:
-High protein cereal
- SPC two fruits (pear and peach) and 3 prunes
-MultiV, garlic capsule, Vitamin E capsule, 2xvitamin C (those vitamins help with wound and skin healing apparently)
Mid-morning:
-Probiotic yoghurt
Lunch:
-Vegetable soup with chicken stock
- 1 soy sausage (heaps of protein and zinc) or small can of tuna
OR
-braised chicken breast, carrot, lettuce and avocado in a spelt wrap
Afternoon:
-1 glass Ѕ orange juice, Ѕ aloe vera juice
Dinner:
-1 piece baked fish with dill (salmon, ling or snapper, maybe barra if it’s on special Image
-Steamed veg (broc/cauli/sweet pot/spinach/mushrooms/parsley)
-few tbsp quinoa
-Olive oil to dress
-3 more prunes and Actilax before bed
God I miss a big beautiful curry though... Have been meaning to try coconut oil as Pia suggested, but went to the natural store and there were so many different coconut products I got confused and decided to go back another time.. Image
This board is amazing though, really helped to narrow down some sort of food plan quicker than if I'd spent months experimenting by myself. So lots of resources to help you find out what works for you :)
Noticed a slight improvement over the last week (only one really bad day) after changing diet about 3 weeks ago and 4 weeks on Actilax/rectogesic, not having to work so hard for BMs so not as much pain through the day.
Hope you see some improvement soon!!! xx
Miss K
Fibre Addict
 
Posts: 17
Topics: 1
Joined: 13 Apr 2013, 16:00
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 06 May 2013, 09:00

Hi Pia, and hi again Miss K!
I definitely have identified foods that constipate me, and I have ruled those out now. Those are white rice, gluten free pasta, cheese and red meat. So in the morning I am having either yoghurt with tinned and fresh fruit mixed in, or a piece of gluten free toast with an egg and some spinach on it. Morning tea is a piece of fruit, lunch is generally some stir-fried veggies with gluten free soy sauce, or a salad, with mostly easy to digest veggies (I've ruled out hard vegetables such as carrots and celery). Dinner I have been having vegetable soups, stir-frys or fish and veggies or salad.
In the morning, I am having 40mls of Parachoc (Parrafin Oil), 20mls of Actilax, and a sachet of Movicol. Then at night I have another sachet of Movicol.
For pain I am having 2 Targin a day (which is oxycodone with an added ingredient to prevent constipation), Diazepam, and Diclofenac, which is an anti-inflammatory. I also use Rectogesic 3 times a day.
Although I know diet has a lot to do with it, the laxatives are making the stools slightly softer, but the pain I suffer even though the BM's are softer, is still unbearable, and I am still passing a lot of blood every time. I had a bowel movement last night at about 11pm, and I couldn't get to sleep until 5am because of the pain, even when taking all the painkillers available to me. Even still, it's almost 11pm right now, and the pain is still there, so I'm on my couch with a hot wheatbag under my bum to help with the pain. I take a shower to clean myself after each BM, and then take a sitz bath a little while later to ease the spasms, and to ensure that the area is completely clean.
Even though I have had 2 Botox injections now, it doesn't completely remove the spasms, but I can imagine how much worse they would be without the botox (having experienced it, I know how much worse they are!).
After 6 months, I've basically put my foot down with my surgeon to find a longer term solution. I didn't hear back from him today, so I will be calling him tomorrow morning to see how his meeting went with the Professor. I'm not normally one to intrude or complain, but at this point, I'm hoping the squeaky wheel gets the grease!
I've read some posts on this forum, and have seen some people say that they want to die after even 8 weeks. I'm not that kind of person, and would certainly never do something like that, but I can understand where they are coming from, because I know how many times I have cried out of desperation, and just wanted something or someone to help take the pain away.
I feel that I'm generally only getting 8-12 hours a day of minimal pain (never pain free completely), and most of that is spent asleep if it its a good day! That only leaves about 4 hours a day of being awake and feeling okay. And to me, that's just not something I can continue to deal with. I just hope that my surgeon really puts his thinking cap on and comes up with something!!
I'm sorry you ladies are going through similar things. My heart goes out to you all, and others who are on here. It just goes to show that although we are all really suffering, there must be something in each of us that is strong, for us to be able to cope with all this!
Image
Kristy38
Fibre Addict
 
Posts: 24
Topics: 2
Joined: 28 Apr 2013, 16:00
Location: Perth, Australia
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Miss K » 07 May 2013, 22:38

Great to hear you've got a diet together that's working for you Kristy, seems like that's half the battle. I thought I was getting my diet pretty spot on, but for last few days have had trouble passing much of anything without straining a lot (doing wonders for my fissure too).
Went to ER this morning just to be safe, ended up with two doctors and a nurse all peering into my bottom together to see if they could find any obstruction there.
Didn't help the head doctor was a very attractive British lad who I'd happily marry under the right circumstances lol Image Probably not much of a story to tell grandkids about how we met though... Image
Anyway they gave me suppositories which am still working up the willpower to take, and drs agreed I should get an internal exam under anaesthetic with a CRS just to check is nothing further up. So hopefully going down to Adelaide in next couple of weeks for that.
Sounds like a terrible amount of time during the day for you to be in pain :( You're clearly a really strong and resilient person. Is a sphincterotomy (LIS) an option for you if it's the fissure causing most of the pain? Have a couple of friends who've had the procedure and got a lot of success from it, and it seems to have helped a number of people here too.
Well crossing fingers for you your surgeon is able to come up with a manageable plan for you soon. Hope that in the meantime too you're able to get some rest, and enjoyment during those times when the pain is bearable. Keep smiling and best wishes xx
Miss K
Fibre Addict
 
Posts: 17
Topics: 1
Joined: 13 Apr 2013, 16:00
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 08 May 2013, 08:19

Oh Miss K, I'm sorry you are going through a hard time. It must be tough for you not being in a major city where you can have access to a CRS all the time.
And, I know what you mean about the cute doctor thing! I am a single mum, and the anesthetist I have had for the last 3 times is so cute, but I'm sure now he's seen my bum 3 times, it kind of takes the mystery out of it! LOL
I don't blame for for having to steel yourself to use suppositories. I tried to do it once, and I ended up screaming in pain and in tears. I just can't do it. It's too raw down there. So if you can't do it out of pain, you just need to put your foot down and tell the doctor that its just too agonising to use them. My doctors now will not touch me down there without anaesthetic. Don't cause yourself more pain if it's too hard. You have a right to be able to say no to it, and ask for another option.
I am a pretty strong person, but I'm becoming less resilient, which is why I'm just nagging these doctors to do something. 6 months of this ongoing pain really wears you down after a while. I've missed out on summer, I've barely been anywhere at all, because I can't be too far away from the bathroom if I'm going to be in pain afterwards. So I have cabin fever badly! Lucky I have my girls to keep me grounded and entertained, but then sometimes when I'm in a lot of pain, it's hard to do things like get up and cook for them, but it has to be done, even if it I have to be in pain to do it. But I love them, and my little 6 year old loves to be my nurse. I have to call her Nurse Charlotte now. :)
The LIS hasn't been discussed with me as yet, only the temporary colostomy, which I am warming to the idea of. I have an appointment this Friday with my surgeon again, to see what we can do. I just have to really plead my case and make him realise that I am beyond coping with this after so long.
Let me know how you get along with the suppositories. I hope you are feeling as okay as you can be, but I'm always here to chat if you need! I'm on facebook too... there is a link to my page under my bio. So feel free to add me if you every want to chat more instantly!
Kristy x
Kristy38
Fibre Addict
 
Posts: 24
Topics: 2
Joined: 28 Apr 2013, 16:00
Location: Perth, Australia
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Miss K » 11 May 2013, 02:08

oh thanks Kristy, appreciate your concern and support. Yeah I ended up not taking them and things eventually got moving after I doubled my lactulose intake. It's so frustrating having to think about everything you eat. But anyway, waiting on blood test to come back for coeliacs too, so maybe like yourself it will shed some light.
I'm in awe you can go through all this with 3 little one's to look after too! Sounds like you’ve got some help with a future nurse in the house though, how cute! :) Hmm yes it totally changes your life, had a very active life a few months ago. No more gym at the moment, though managed to get off 10kgs I’ve been wanting to. And finally caught up on all those Will and Grace episodes I missed when it was on TV Image There’s a post floating around the board somewhere about the positive things about anal fissures, hard sometimes to think there's positives but is worth a read if you’re feeling down sometime :) And cute specialists should be on that list Image

Hope you have family and friends near you locally for company and distraction, even if you can’t go out much at the moment. Amazing how much better you feel after a laugh, cuppa and a [gluten free, dairy free, sugar free, fat free, taste free] muffin with a mate, espec if you manage to forget you were in pain before :)
How did your appointment go? I hope they listened to you and considered your needs and input. They're experts but in the end you know better than anyone how your body is feeling, whether it’s going to fix itself and how long you’re prepared to try and let it heal before you need surgical intervention. So hope you got some outcomes you're comfortable with.
Yeah I’ll have a float around on fb tomorrow and see if can find ya, same goes for you also if you ever need a chat from someone else in a similar place.
Best wishes, Kath x
Miss K
Fibre Addict
 
Posts: 17
Topics: 1
Joined: 13 Apr 2013, 16:00
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 11 May 2013, 09:25

Hi Kath,
Yeah, I find that lactulose and paraffin oil really get things moving for me. I take 20mls of lactulose daily, and 40mls of paraffin oil daily, along with 2 sachets of Movicol, one morning, one night. Sounds like a lot, but its the only combination I've found so far that works for me! If I back off any of them, I find myself in a whole world of trouble!
Let me know how your coeliac tests go, if it turns out you are, I can help out! I think I've got it down pat now, but becoming a member of the Coeliac Organisation really helps, they have great advice too.
I think it's so funny that you have been catching up on Will & Grace episodes... so have I, I love that show! That, along with Sex & The City, and Friends... I have a whole raft of shows, because basically i have been confined to the house and couch for so long now!! I wish I'd been able to lose weight like you have. I haven't been able to exercise at all, and I have put weight on, which is not fun. I need to lose about 15 kilos to get back to a reasonable weight that I'd be happy with. So good for you! Image
I do have family and friends around, actually tonight, my parents picked the girls and I up and took us out for dinner to get us out of the house which is nice :) And Mother's Day tomorrow, so I will probably get breakfast in bed from the girls, then my mum is coming for dinner tomorrow night. So I do have people around sometimes, although friends seem to be getting on with their lives, I get texts and phone calls, but I sometimes wish I could get to go out with them!
My appointment yesterday morning was very successful (I hope!). I just expressed my desperation about being in pain for 6 months, not being able to work, and having to take care of the kids, which is difficult sometimes when in pain. My eldest has a rare syndrome, and has Autism, so that makes it trickier too! My CRS was very understanding, so on Thursday morning, I am being admitted to hospital, and am having a Lateral Sphincterotomy. He said that a colostomy bag was too extreme at this point, and they would see that as a last resort. He said that because my case was so complex, having both fissures and fistula, that it makes it more difficult to treat, so he has written a whole raft of options on my surgery form, so he has some alternatives if needs be. He said he can't give my any guarantees, but this is the best option at this point in time. He says that after this type of surgery there is the possibility of fecal incontinence, but it usually doesn't last too long, and depends on how good your muscle tone is. So, I'm happy that something is being done, and although I'm a little nervous about the pain post-op, I just hope it works!!
So that's where I'm at, and I hope you are having some luck with changing up your laxatives.
Image
Kristy38
Fibre Addict
 
Posts: 24
Topics: 2
Joined: 28 Apr 2013, 16:00
Location: Perth, Australia
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Miss K » 13 May 2013, 03:06

Wow Kristy, so glad your surgeon is moving things forward for you and getting you in for your LIS procedure quickly. Hopefully this soon means the beginning of the end for your evil fissure problem forever!
Yes I've heard also there is a (very) small risk but the feedback from my doctors was that this procedure is bread and butter for CRS's and you are young and otherwise healthy so am sure everything will be fine. And haven't heard about anybody here on the board having that problem long term either after LIS which is a good sign. Let me know if there's anything I can do (wish I could send you soup or something but don't know how well it would travel across the Nullarbor Image But will def be sending you lots of healing vibes from the Alice Thurs, good luck!
Image
And hope you had a super lovely mothers day and got really spoilt too :)
I had an awful one yesterday after stupidly giving into cake at a birthday morning tea Fri, totally brought that on myself Image But today has been a great one after whole weekend of veggies and soup, won't ever be doing that again lol.
Yes I'm a big Sex and the City fan too, still haven't gotten over her leaving Aiden for Big though, really loved him. L-Words a new fav of mine too, anything with a bit of drama and good fashion's always a thumbs up :)
Best wishes for the next few days Kirsty!!
Hugs, Kath :)
Miss K
Fibre Addict
 
Posts: 17
Topics: 1
Joined: 13 Apr 2013, 16:00
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 13 May 2013, 23:42

Hi Kath,
My fingers and toes are crossed that everything will be fine! Thanks for the encouragement :) From everything I have read in these forums, most people seem to have had good outcomes from the LIS surgery. So I'm hoping to be another one!
I did have a love mother's day, but like you, ate the wrong things! Had too much red meat, as I had a roast dinner for lunch, and for dinner, with both my stepmum and my mum!! Paid for it last night!
I can't believe Carrie left Aiden either. Something tells me she might be a little high maintenance! Although, I do have a soft spot for big, although he treated her like a last resort all the time!
Thanks for your lovely wishes, and I will let you know how everything goes, as soon as I can!
Have a great day, Kath Image
Kristy38
Fibre Addict
 
Posts: 24
Topics: 2
Joined: 28 Apr 2013, 16:00
Location: Perth, Australia
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified


  • Similar Topics
    Replies
    Views
    Last post

Return to New to the forum? Introduce yourself here



Who is online

Users browsing this forum: No registered users and 18 guests