To Linda in NZ

From: Jo Eslick (wallamara@hotmail.com)
Thu Nov 22 05:48:27 2001


Dear Linda,

I don't know where to start, I have read through your story several times in the last few hours, I just didn't know how or where to start!  Firstly, I want to give you a very warm welcome to the board.  I just want to fly over to New Zealand & take you in my arms and give you a huge cuddle, and then I want to shake your hand!  You have been through so much and still you have such a positive way of looking at things!  Thank you for pouring out your story and for telling us so much about yourself.

I am so pleased that you have found us here at IAS, and I know that you will be taken into our fold and cared for with love, understanding and friendship.  Just being able to pour out our troubles can be a huge release and a great weapon against over whelming depression, hurt and that aweful feeling that you are alone, the only one who has these types of problems & pain and no one else could understand how you feel, but we do, we are and we will.....

I can not tell you how relieved I was to find this site, it was such a burdon thinking that no one else in the world was having these weird problems that I was having..... and Linda, my problems are a little different to yours, BUT there were a few alarm bells ringing as I read your list of symptoms, and read the surgery list & complications as I continued down the page.

Do you find that your "cycle" of  Diarrhea coincides with your menstral cycle?  Do you have any sharp pains around the time you would be ovulating in your cycle?  Do you have any pain during or after sex? (don't answer that last one...just answer it to yourself), if some of these things are similar to when your "cycle" of Diarrhea occurs, then I would suggest that you see a Gynocologist, I might hazard a guess at endometriosis.  Has any doctor ever mentioned this to you?  These bowel problems can be caused by the endometreosis attaching to your bowel & other organs, which in turn encourages adhesions.  I'm sure you have plenty of those in your poor little body!

Please remember that I am an adhesions sufferer and not a medical person, so I am just making suggestions based on my own experiences, from what I have learned from others here on the board, and from asking loads of questions and hours of reading.

I am going to send your story to a friend of mine who lives in Queensland, Australia (I am in NSW) Suze is a kiwi who moved to Australia 4 years ago, I will ask her to send you a message too.  I think there is another one or two Kiwi's who visit the board from time to time, try reading our stories on the quile & add yours too, just copy it from the one you have posted on the board, and then paste it on the quilt.  You will be able to find a few Kiwi's there too I should think.

I will also forward your story to Karla who has a similar story to yours..... Helen Dynda will help you research anything you have questions about, but don't forget to use the archives search on the bottom of the message board, trust me, we have discussed LOADS of stuff, and quite a few relevant bits & pieces should get you started.  Please feel free to email me any time, I will do my best to point you in the right direction.  I will give you my main email address which is seslick@interact.net.au so don't hesitate ok?

I look forward to hearing from you Linda

Love & warm gentle hugs

Jo(Australia)

 



 

>From: "J&L VERMEY"
>Reply-To: adhesions@adhesions.org
>To: Multiple recipients of list ADHESIONS
>Subject: Can anybody help me?
>Date: Wed, 21 Nov 2001 22:29:39 -0600
>
>Can anybody help me?
>
>My name is Linda, I'm 31 years old, and am from Dutch ancestry. I'm happily married housewife.
>
>I first noticed that something was wrong with my gut about eleven years ago, when I was just nineteen going on twenty, when I became aware of my changed bowel habits.
>
>It all started with an entire year's worth of Diarrhea, which no doctor could explain, or diagnose, nor could we stop it. At first I was told I had Irritable Bowel Syndrome, but the medications I was given either didn't work or made the symptoms worse. Over night the diarrhea stopped, and constipation took its place, with occasional bouts of diarrhea in between.
>
>Ten years ago I ended up being rushed into theatre to have my appendix removed, and they also discovered that I had a large ovarian cyst on my right ovary, which had burst and was bleeding, so they also removed the cyst.
>
>Then two years after that, with the symptoms continuing and getting more severe, I ended up going again into theatre and had my gallbladder removed, as it had gotten inflamed and infected. At that time we had discovered that I had a Hiatus hernia, which could not be repaired by the standard Hiatus Hernia operation as my surgeon explained that my stomach was lying on top of my pancreas, so he offered me instead to perform the procedure of Gastric Banding, as I was also over weight, needing to lose weight, and that it would also help the reflux (which had been causing complications of it's own, as I was used to sleeping with a very flat pillow, and they had discovered that at night the acid from my stomach would flow back up and into my lungs, causing pneumonia, for which I had been hospitalized for three times).
>
>After I had the gallbladder removed there was an improvement in my health, it lasted only six months and then the constipation got worse and worse, until I was fully compacted, then began a series of enemas, for a while they worked, but gradually the enemas got bigger and bigger, and in the end that didn't work either.
>
>Upon hospitalization they did all sorts of tests, barium swallows, and meals, as well as other x-rays, and they discovered that my large bowel was distended, and was somehow paralyzed, someone once mentioned toxic colon. My surgeon then suggested giving my large bowel a rest for six months or so by performing surgery to by-pass it, and having an loop ileostomy. We gave it a go, but it didn't work, I still had the pain and cramps, as well as my rectum which began to give me a lot of grief, it spasms and cramped, and makes me think I have to have a bowel movement, even when there is nothing there. The fevers continued, temperatures ranging between 37.5 and 39.0 degrees C, accompanied with rigors, hot and cold sweats, which continue to this day.
>
>After that I had a procedure done which cut my large bowel off totally from my small bowel, with an end-ileostomy (with the large bowel just floating freely around in my abdomen doing absolutely nothing except for making my life a living hell that is).
>
>Anyway, I had few options and I ended up having a total colectomy, I had all of my large bowel removed, except for my rectum.
>
>I lived like that for four years, in between that time I had more operations. The valve that sits between the large bowel and small bowel became defective, it got infected, and as a result no fecal matter could move up or down, and so I had a bit more bowel removed.
>
>Then began all the bowel obstructions. Ranging from full blown bowel obstructions, where I was doing nothing more then vomiting when ever I even tried to drink a sip of water, to partial or semi-obstructions, where I would be having diarrhea, but keeping everything solid somewhere up in my gut, over time the amount would grow, and it would get infected, I'd run temperatures, and feel extremely ill. The reasons for the obstructions are my adhesions, which is a pretty normal thing to develop after fourteen major abdomen operations, and kinks which I develop on a regular basis.
>
>Then in the beginning of last year, 2000, in December my surgeon again operated, and made a pouch out of the last bit of my small bowel, and the tiny bit of large bowel which was left over and attached to my rectum, and connected the small bowel up to the rectum, and making me a temporary loop ileostomy. The plan was to wait three months, and then get rid of the ileostomy and stitch up the holes, but complications set in, my stoma sank back into my abdomen, herniated, causing another obstruction, so late January 2001 I was back on the operating table to get it all sorted out, and enable me to be able to go to the toilet in the normal fashion. For two to three days everything seemed to be o.k. I'd been experiencing a bit of wind, and there was a little bit of "stuff" coming out of my bottom end, so I started a post operative diet. Then disaster struck, I was once more obstructed, nothing was coming out the bottom end, and nothing could go in via my mouth, I bloated up so much that my belly felt so incredibly tight, and it was so incredibly painful, therfore ten days after the reversal of my ileostomy I was rushed into theatre again! A bit more diseased bowel was removed, and this time it turned out to be alright. And I went home in late February.
>
>The first couple of months were extremely tough, I had to get used to going to the toilet, and believe me, I go often! And it's runny and smells foul, but at least I don't have to wear a bag any more. (I coped extremely well with my bag, except for the fact that I had very frequent, and sometimes very embarrassing accidents, my husband got very used to changing the sheets and bedding in the middle of the night while I cleaned myself up, and changed my clothing! And I never had a good night's sleep in all those years while I had the bag, because I had to go empty it at least three to six times a night!). At first I was very self-conscious about leaving the house, but I've learned where all the public toilets are when I go into town, and I've been training myself to "keep it in" for a little while, when I start getting the sensation that I have to go to the toilet, and I can now almost last half an hour, before I begin to get desperate-this is extremely handy if I can't find a toilet quickly! Sometimes I am too late, but that's life, and I've got plenty of clean underwear, and if I go out I always bring a spare change of clothing, just in case.
>
>Still, I suffer from very severe chronic pain, I am under the care of a very good pain specialist at Waikato Hospital, in New Zealand. I have been on a lot of drugs to control my pain and nausea, ranging from Pethidine, Morphine, Methadone, and during my frequent hospitalizations I have been on a pain pump many times, with all kinds of mixtures of drugs.
>
>At the moment I am concentrating on dropping my methadone, and I am currently down to 4 ml or 8 mg of methadone. I use Valoid (Cyclizine Lactate) intramuscular injections, about once or twice a day to control the nausea, and keep me from being sick. And I take 40 mg of Sevredol (Morphine Sulphate) when I really can't stand the pain anymore, I'm allowed to take up to three doses a day if I need it, but some days I will not use it at all.
>
>I used to be on 75 mg of Nozinan (Methotrimeprazine Maleate) to help with the chronic pain and nausea, but I was overwhelmed by its side effect-it turned me into a Zombie who could easily sleep 22 hours a day.
>
>With all those combinations of drugs I found that I was sleeping my life away and I was becoming more and more upset and depressed. For a while I took Nortriptyline (Allegron) but I discovered that it made me feel slightly suicidal, and made the depression worse. I've also tried some other antidepressants.
>
>Buscopan to relieve the spasms can be helpful, but, it only works for about an hour, and so, hardly seems worth the effort to take it.
>
>I've also tried Acupan, but this did nothing for me.
>
>To stop or hold up the diarrhea we've tried Loperimide, with no success, and lately I've been trying Codeine Phosphate, also without any success.
>
>For a short while, about a year ago, we tried Sandostatin injections, for three months I had no pain, and I felt similar to when I've been pregnant, but then (after some emotional stress) the pain came back suddenly, and even though I was still injecting myself, the medication no longer worked (if it ever had really been the cause of me feeling better?) and I was back to square one.
>
>I've been trying to keep to a low fibre diet, but, I still seem to react to nearly everything I eat. And a lot of the time I seem to be on liquids only. Most times after I eat I get a terrible reaction about 15 minutes to half an hour after meals, I will suddenly get a bad bout of pain, feel like vomiting, I sweat, but feel extremely cold, and most evenings I'll start to run a fever.
>
>I've made a major change in my attitude to my illness, which I think has helped a lot, I have adopted the attitude of being in charge of my pain and illness, instead of it being in charge of me. I've been making a determined effort as far as diet is concerned, and I've been making sure that I take multi-vitamins and minerals daily (I use the kind which dissolves in water-as some tablet come out whole). I've even been taking a little light exercise, trying to build up my strength, because I've become very weak.
>
>There have been times when my blood tests show a high white blood count, and frequently I've been low on Potassium, as well as being Anemic.
>
>Lately I've been feeling so exhausted, and extremely lethargic. I've been finding it difficult to eat, and after I've eaten I've vomited. I've also been experiencing much more severe diarrhea then normal, quite often there is blood, and the smell is unpleasant to say the least.
>
>But recently I've been experiencing such chronic diarrhea (it's so bad I'm scared to leave the house); the pain is worse then ever, mostly on the right hand side of my abdomen, and some pain above my belly button. Often the pain is so bad that I can not sleep because of it, and I have to spend the whole night either lying awake, and trying to go to sleep, and getting more and more upset and anxious, or I try to read, or I turn on my lap top (I can position it in such a way that I can type while lying down) to keep myself occupied, so that I don't concentrate too much on the pain. Mostly the pain causes me to feel nausea, sometimes resulting in vomiting. For a few years I've been getting arthritis in the joints of my hands and feet. I often have very sore, irritated eyes, and my vision frequently becomes blurred, sometimes it is so bad that I can neither read, nor watch the television. And lately I've become very anemic, my doctor thinks I am losing blood with my diarrhea, and he has suggested giving me monthly iron injections, and doing a blood test in three months time to see if this corrects the problem). And for years now I've been getting these terrible sore throats, which again, nobody has been able to explain, sometimes it gets so bad that I don't even want to swallow because it hurts so much. And often, when the bowel problems are severe I get a rash on my arms, my back and my bottom, they look like blisters at first, and if I scratch them, they often get infected. I also get some kind of inflamed around my finger nails, which can also get very itchy, and later infected. And I've been suffering from one migraine after another.
>
>My surgeon has named my illness "Severe Bowel Dysmotility Disease", because my insurance wanted to have a name for it. But I've never been given a proper diagnoses for the problem.
>
>My Grandmother, who lives in the Netherlands, and who is in her late 80's, also has very similar bowel problems to me, except that her illness is slightly less severe and she has never been operated on, also she has never been able to get a proper diagnoses. My Grandmother thinks that I have inherited this bowel disease from her, and I think she's probably right about that.
>
>My surgeon has told my husband and me that he has several patients with similar problems to me, mainly patients with Inflammatory Bowel Diseases such as Crohn's and Ulcerative Colitis, mostly all women, who's bowel disease has gotten better after they had become pregnant, and some of these women have even remained in better health after having their babies, and he (my surgeon) has been encouraging us to start a family, and take a chance that it will also be the same for me.
>
>Up till now I've been pregnant two times, but both times I've miscarried, once when I was eleven weeks along, the last time I was just seven weeks along. Both times I've felt almost well, with significantly less pain, and more energy. This might suggest that the disease is also hormone related. The illness definitely seems to run in cycles.
>
>If there is anyone who has any suggestions or questions, please e-mail me at:
>
>J.VERMEY@xtra.co.nz
>

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