Upcoming Surgery & Recovery + My Story

[OldCrohnie]

First off, greetings to all! This my first foray into this arena and I'll start off with my life story, short form version and onto my current situation.

Diagnosed in 1973 (grade 10), and have been more or less in remission since 1978 with one serious flare up. Along the way I've developed anal fissure and fistulae, and Ankylosing Spondalitis/osteopeni - all have been managable, and I'm convinced that the 6 or 7 times having to go on predinsone were a contributing factor in my bone troubles.

At any rate this time last year I started to have strange symptoms including heart rate change (palpitations) and the heightened sensation of digestion just beneath the sternum. I ended up with CT scan, MRI and after many months of managing the symptoms (a bit of denial on my part), the test results indicated increased scar tissue that they felt were accumulated over the 39 years I've had Crohn's.

I guess I was relieved and concerned at the same time. The doctors said the palpitations can occur in this scenario, and the cardio and holter monitor results confirmed `PVCs' which are extra beats and very common. What was really encouraging was the possibility of being drug-free post-op is about 60%!

So I'm waiting for the date for laproscopic resection total of 3 1/2 feet of intestine, though once `in there' there may be further undetected areas needing to be removed. I would hope that with the quality of diagnostic imaging these days they couldn't have missed much...

I'm interested in hearing from folks who've had the laproscopic procedure and how they made out, if they had infections, pain levels versus `normal' pain caused by Crohn's etc. I have been blessed never having this type of operation, but I am just heading into uncharted territory and would like to hear from others.

Other random questions - how long before solid food allowed? Any dietary changes post-op (I can eat pretty much anything now)? Is 4-6 weeks accurate assuming no complications, and how was going back to work? Any special meds taken to prevent infection and side effects? Any natural/nutritional suppliments to help with healing? What pain killers prescribed? Medical marijuana?

Lastly, given many Crohn's Disease sufferers like us also have fistulae/fissues, can these be at least explored during this surgery or is this `too far down' ? I'm not sure in terms of surgeons but I think they often have a very specific skill area and the anal/colon area is separate from further up the intestinal tract.

Thanks for listening and hope to hear back from some of you.

 

[Essieluv]

I can't really answer any of your questions, but I wanted to tell you that I hope everything goes well! Good luck, and know that I'm thinking of you!

 

[Mimzim]

Hi! I just had surgery yesterday and had about 2 feet removed. My doctor ordered me a thoracic epidural. I also have a pain pump with dilaudid. Im not sure what pain med is in my epidural pump. Prior to sugery, I was on a low residue diet to prevent complete blockage and am now on a clear liquid diet. My belly didn't like that last night at all.

Regarding food I was told to do clear liquid diet, the full liquid diet and gradually add low residue foods as tolerated and move on up to a normal diet as tolerated.

They say 2 weeks before I can drive and about 6 weeks for my body to be normal again, but every body is different. I'm not sure about long till you can return to work. Your doctor would know that.

My symptoms were heart palipatations. My thyroid was high so once diagnosed with that and put on synthroid, which made the heart palipatations go away. The other symptoms were dizziness and fatigue. Then my white blood cell count went up. So, back to GI and I ended up with a stricture, turned out to be 2 of them.

 

[Merv S]

First off, greetings to all! This my first foray into this arena and I'll start off with my life story, short form version and onto my current situation.

Diagnosed in 1973 (grade 10), and have been more or less in remission since 1978 with one serious flare up. Along the way I've developed anal fissure and fistulae, and Ankylosing Spondalitis/osteopeni - all have been managable, and I'm convinced that the 6 or 7 times having to go on predinsone were a contributing factor in my bone troubles.

At any rate this time last year I started to have strange symptoms including heart rate change (palpitations) and the heightened sensation of digestion just beneath the sternum. I ended up with CT scan, MRI and after many months of managing the symptoms (a bit of denial on my part), the test results indicated increased scar tissue that they felt were accumulated over the 39 years I've had Crohn's.

I guess I was relieved and concerned at the same time. The doctors said the palpitations can occur in this scenario, and the cardio and holter monitor results confirmed `PVCs' which are extra beats and very common. What was really encouraging was the possibility of being drug-free post-op is about 60%!

So I'm waiting for the date for laproscopic resection total of 3 1/2 feet of intestine, though once `in there' there may be further undetected areas needing to be removed. I would hope that with the quality of diagnostic imaging these days they couldn't have missed much...

I'm interested in hearing from folks who've had the laproscopic procedure and how they made out, if they had infections, pain levels versus `normal' pain caused by Crohn's etc. I have been blessed never having this type of operation, but I am just heading into uncharted territory and would like to hear from others.

Other random questions - how long before solid food allowed? Any dietary changes post-op (I can eat pretty much anything now)? Is 4-6 weeks accurate assuming no complications, and how was going back to work? Any special meds taken to prevent infection and side effects? Any natural/nutritional suppliments to help with healing? What pain killers prescribed? Medical marijuana?

Lastly, given many Crohn's Disease sufferers like us also have fistulae/fissues, can these be at least explored during this surgery or is this `too far down' ? I'm not sure in terms of surgeons but I think they often have a very specific skill area and the anal/colon area is separate from further up the intestinal tract.lapar
Thanks for listening and hope to hear back from some of you.

Hi Old Crohnie, I can answer some of your questions about laparoscopic surgery which I had on the 29th August. One of the things that I mentally prepared myself for was the possibility of open surgery, an ileostomy and a temporary temporary stoma. In the end this was averted. About 30c, [just over two feet] of terminal ileum was removed from a total of 60 cm that was examined. A colonoscopy was performed under anaethesia. Fortunately there were no pathological changes to the colon.

I think that I should point out that colorectal surgeons vary in their techniques, so what I experienced may differ from yours. Four incisions were made, the largest through the navel, one small nick above the pubic area and two on the left and right sides of the abdomen.All healed without any infection.

Post operatively , I awoke to find that a catheter had been inserted and for the first 24hrs I remained on a IV drip with nil by mouth other than sips of water. Pain management was also IV, in my case Ketamine- which was the drug of choice in the Australian hospital where I was treated. A curious drug that brings on some very odd hallucinations! Later, Panadol was sufficient as an analgesic.

I guess that Morphine has a tendency to slow down peristalsis , which is the last thing that you want. To be honest, here was a fair amount of post op pain, but nothing that I could not manage via a self controlled IV pump.

A soft diet was attempted on the second day following the op with unpleasant results. There is no easy way to skate around the subject, but I ended up experiencing faecal vomiting! To counteract this three attempts were made to pass a Nasal Gastric Tube,but because of a broken nose in my youth were highly painful and impossible! After these little set backs I was discharged after 6 days in dock.

Three week on from my op, I must admit that I feel greatly improved. I am enjoying a full diet and a beer or two. This, was never going to be a curative exercise , but might serve to delay the formation of future strictures. However I have noticesd a distinct decrease in the frequency of diarrhoea, which is a major plus. All I need to do now is try and put on some weight and any donations would be appreciated!

Please remember that this was just my experience and it is quite likely that your will be relatively plain sailing. I image that the other issues that you have may be dealt with separately.

I have been advised to avoid heavy lifting and other strenuous activities for six weeks. Just keep an eye on your iron levels in the weeks after your op.

I sincerely hope that all goes well for you, my friend ,Please keep us up to date with your progress.
Best Wishes,
Merv

 

[OldCrohnie]

Thanks all for your feedback. I do realize each person has different recoveries, surgical practices and post-op experiences. I think I'll accept the fact it's going to hurt, there are drugs for that, then it will get better eventually. The only worry I have are the seemingly endless complications that can arise - and I hope that if that happens I will be able to cope as well as many of the incredibly resolute sufferers who participate here!

Being a newbie in this area I sure wish I'd had some of this information when I saw the surgeon

 

[OldCrohnie]

Hi again:

Its now 4 months since the last update, and I thought I should write again to relate all that has happened since Dec 10th when I went in for the resection surgery.

To put it bluntly I went in for 1 standard Crohn's surgery and ended up with 3, with the added bonus of an ileostomy and pigtail drain after 38 days in hospital!

In my case the initial operation appeared to go well other than the surgeon commenting to my wife how bad my insides were and how I had lasted this long without major symtoms. Instead of 40 cm they ended up taking out 50cm before closing me up. Unfortunatly less than 48 hours later I went into sepsis and an emergency operation was done to deal with that. Finally there were further complications requiring the ileostomy which is where I am at today, finally back home recovering

I was just wondering if any of my fellow patients have had severe weight loss and on ileostomy diet. I went in at 135 pounds and left hospital at 115 - dietitian ordered high calorie `no limit' diet of 3500 calories a day. The problem is now that I've got the Immodium+Codiene mix to keep output together, I cannot seem to make any upward progress. Other forums I've visited had some saying they swore by Ensure/Boost etc. when everything else failed. Is it possible that with my wounds still healing my body is prioritizing on that first and the pounds will come later? My overall output voume is a little high, but I think it's because I am eating like a horse and waking up at night to fridge surf!
Any comments here would be appreciated. I'm frustrated because now the entire process of eating food is a bit depressing - label reading, chewing like a cow - which in reality makes it tiring and less enjoyable.

The other concern I have is this pigtail drain. Initially there was green fluid draining which was later tested via signogram as from gall bladder not bowel (phew!), and then redirected with ERCP to put stent in. Fluid levels dropped dramatically, validating the gall bladder was the source. All was looking great until about 5 days before discharge, more fluid starts draining which is more of a milky color and 50-90ml per day. Had another CT scan and the doctors and radiology folks didnt seem too alarmed by what they saw, and I was told that I could go home - and that whatever this is will likely peter out over the next three weeks to a month as my body continues to heal. Does this sound familiar to anyone? I trust my medical team to react appropriately, and since I have no other signs of infection etc. then I'm inclined to believe them but seriously it is HARD to keep seeing this stuff come out and I have to flush/drain/document daily...

For me this was and is the most challenging and frightening ordeal I have ever faced in my life. As I adjust from the full time monitoring and security of the hospital, I find sleeping is difficult, having all these encumbrances is very frustrating, and even though I feel like I am healing, I still can't seem to put any more weight on. Before we even consider the reversal surgery I must be a fully healthy 150 pound guy. I know it's only a week since I was discharged, but I'd like some feedback on getting past the stupid things and find the patience to maintain a positive outlook!

Many thanks!

 

[UnXmas]

Hi, I can relate to a lot of what you said, though my situation is a bit different. I'm female, and was very underweight and of a slight build before I had ileostomy surgery three months ago. I had had five surgeries before, so thought I knew what I was doing and I could handle it. But I got complications and lost so much weight. I've had problems keeping my weight up for years, but gaining weight just seems a never ending problem now, and the amount I have to gain just seems like an impossibility.

I do find Ensure and similar products quite useful. It provides all the vitamins you need, which I find useful as, especially with the diet following the ileostomy that rules out a lot of fruit, veg and whole grains. Since fruit and veg don't provide any calories to speak of, it can be a good idea to not fill up on fruit and veg and risk blocking the stoma, eat higher calorie foods instead, and use the Ensure to make sure your nutritional needs are all being met.

Other than that I really can't offer much, as although I know every tip there is for gaining weight, I just can't seem to do it myself!

One thing you might need to do if you don't seem to be gaining weight - ask your doctor to find out whether you are absorbing everything you need from your food. If you are, then the problem is likely that you aren't eating enough to gain weight, whether due to lack of appetite or whatever. If you're not, then you might need some medical intervention to find out if something is stopping you from digesting your food properly.

As far as I know, the healing your body is doing will not require a significant amount of extra calories. I think it is only people with severe burns that require a lot of energy for healing, but I may be wrong.

I couldn't sleep at all in hospital, though this was partly because I had to do a rapid detox from two different meds, one of which was Amitriptyline which helps me so so much and gives me the best nights' sleep ever! Once I was back on it I slept again. It may be worth asking your doctor about meds to help you sleep, even if it's only a short-term measure.

I'm still quite new to having an ileostomy, but people on this forum have been so helpful, and I started so many threads with questions about ileostomies, so do start threads with your own questions if you have any.

 

[OldCrohnie]

Thanks so much - I appreciate all insights! Initially my output was very high and liquid and for sure very little was held up in the intestine to be absorbed. Now with adjustments in what I am eating and drinking combined with the codeine/immodium dose - things have slowed down considerably. I can only assume that the food is now getting absorbed because more fluid has been removed and the output is significantly less. For me I think the mere act of having to chew more tires me out if they say `you gotta eat more!' I freely admit I have been a total pig in my life before this surgery, but it's a totally different feeling when you HAVE to stuff your face and chew things 5 times as long as before. This is why I was asking about the supplements which add the nutrition and calories without having to do much more than open the container and drink...

Sleep is improving though I still wake up to eat in the early morning hours after midnight. I am really trying to get away with the drugs and move to melatonin, which worked for me before.

I will be seeing the doc next week and have a call in to dietitian. Today is one week of my discharge!

Thanks again!

 

[highlandsrock]

Hi OldCrohnie

I hadn't read your story before. It's the first time I've seen someone mention that sudden change from the fully supported existence in hospital to being
"on your own" after discharge. It's something that patients should be warned of so they can be prepared. Even with the support of my friends and family I felt a bit adrift.

Like you I had lost weight in the lead up to surgery, about 10kg, but afterwards it didn't take that long to get back up to my proper weight. The advice was eat lots of calories, drink 3 Fortisips a day (3 x 300cal) and keep fluid intake high to stop dehydration. The target was to be fit enough for a reversal in 6 months and that was achieved. I had the same problem as you with high output for several weeks and eventually the stoma nurse suggested that maybe I was taking in too much liquid.

It was a comment from my GI consultant just before Christmas that made me stop in my tracks. He said that given the surgery I had had (only 15cm of intestine removed) I should never expect my digestive system to return to normal. To me this seemed only a small amount to lose. At first I felt a bit depressed by his remark but that quickly changed to "now I know what to expect I can plan my life accordingly". Since the ileostomy I have been taking Loperamide every day, even after the reversal, and I expect to remain on it.

I wish you success in your quest lower output and higher weight etc.

 

[OldCrohnie]

Thanks for your more `relevant' context. You've had CD probably as long as I have (diagnosed in 1973) so we're quite similar in that regard. The comment about post-reversal; were they saying that having the digestive systems reconnected and with only 15cm of resected intestine that you'd continue to need those thickening agents? That's a shock to me also - though having just begun living with my bag, I suppose it would be a small price to pay to be truly free of the encumbrance and inconvenience of having an ileostomy.

Will you then also need to continue the nutritional supplements, B12 injections, extra hydration etc?

Your other comment about not on any Crohn's meds - my surgeon said, in the original plan, I had a 60% chance of not needing my sulfasalizine after the operation. Since all the `repair work' has been done, I am hoping that I can do the same...

Thanks for the support, insights and for sharing your story!

 

[UnXmas]

I've been given mixed advice regarding fluid intake. I'd read about being prone to dehydration when you have an ileostomy, and it seemed that plenty of fluids were often recommended. I'd read also that you may need to reduce fluid if you had high-output. I've never had much output, so I figured I could and should drink a lot. But then my surgeon told me (and I later found that others on this forum had been told the same) that if you drink too much with an ileostomy it can flush everything through you before your intestine has a chance to digest it properly, meaning you end up getting less calories and nutrients.

 

[highlandsrock]

Next time I see my GI consultant I will ask him if it's the quantity of bowel removed or the location (around the ileocaecal valve) or both that makes the difference. My prescription allows me to take up to 12 Loperamide capsules per day although I've never taken more than 3 since my reversal. Last time I saw him he mentioned that there are alternatives to Loperamide but as I'm OK at present we decided to leave that discussion until next time.

With regards to extra supplements - I have B12 injections every 3 months + I take an iron tablet each day. I used to take calcium when first diagnosed with Crohn's but a bone scan showed no signs of osteoporosis and I do try and walk 8km/day when I'm working in London.

I know that some patients are kept on azathioprine or other meds as a maintenance dose to keep the Crohn's at bay. Because of my low platelet issues we have decided that it would be better to adopt a regular monitoring regime to spot if the Crohn's is returning rather than take meds just in case. The monitoring was yearly colonoscopies but has been replaced with calprotectin tests as they have been shown to be good indicators of increased Crohn's activity. It saves going though the whole "camera where the sun don't shine" experience.

 

[OldCrohnie]

I think the location and quantity are both important - though we were actually talking about how (or if) they know what specific area of the intestine absorbs X nutrient. I know my surgeon mentioned short bowel syndrome, but that was for scenarios where a lot more needed to be removed. On the output/fluid question I know a little about because at first I was literally burning through 2 full ileostomy bags + base daily - and after 5 consecutive days my skin was totally destroyed around the stoma. Anyway the nurses had a calculation that if I was outputting more than 1000mls daily they were to adjust the IV to make up fluid losses. When things improved the output was nominally over the 1L threshold so I just drank more to get myself off IV dependancy. I also learned from the dietitians that eating and drinking separately is a good way to help with thickening output. That sounds great in theory but with my being intubated for 4 days I had enough problems swallowing than not being able to wash something down while eating! The dietitians said this is exactly what causes food to pass quicker. A compromise was pretty much everything I had came with gravy, and now at home I have a side of yoghurt and sip water if necessary. The results have been very good for me so far.

Also because of the ileostomy I have to crush all my medicines (excuse me if this is a `no brainer point for the rest you...) to ensure they absorb properly. Hospital used apple sauce, I use 10% vanilla yoghurt : )

By the way, in the UK is Loperamide an over the counter medication? We got a great tip from the ostomy nurse that here in Canada we can buy the generic at Costco for a fraction of the price at the Pharmacy/Chemists. It's mainly the dispensing fees here but I was shocked when I saw the price difference.

I am also taking a multivitamin and magnesium - until I get first blood test results...

I envy you walking 8km per day! I live on the Fraser River in Vancover and am just beginning to get back on the trail to help with the exercise part of my recovery!

Thanks again!

 

[highlandsrock]

In the UK Loperamide can be bought in a normal pharmacy as Imodium but it's not cheap - it works out around 5.50 Canadian Dollars for 6 tablets. If you buy online in bulk it goes down to around 0.70 CAD a tablet. We have an NHS scheme in the UK for patients that have to take a lot of medications. You make a one-off annual payment of 104GBP = 190CAD and that covers you for whatever you need. However whilst you have a stoma you get all medications and supplies free, delivered to your door.

I don't mind you envying my walks in London each day as it is a beautiful and diverse city with so much to see and always something unexpected around the corner. (I can feel a new blog coming on) But remember I'm two and a half years post reversal. You'll get there, just don't rush it. Vancouver looks equally special - it's on my list of places to visit before the Crohn's gets me.

 

[OldCrohnie]

Wow! That's a very good plan! In Canada the government health care unfortunately doesnt extend into the area of prescription medications though everything else - doctors, tests, hospital visits etc - are covered.

Another thing about the long term is aside from the current prognoses - if we're successful in achieving a reversal operation, who knows what the future holds for long term treatment for the sorts of things you've been having difficulty with?

I hope you do get the chance to visit B.C. - now that the Winter Olympics are almost upon us, we've been reminiscing about the fabulous time we had in 2010, and how I think it was the most incredible time for us here in Vancouver, but for Canada in general I think there were some moments where the entire country was singing the national anthem at the same time! We said at the time that the weather being as spring like as it was turned out to be a positive because the backdrop for the TV coverage was stunningly beautiful with the North Shore mountains crystal clear in the sun as opposed to blanketed in grey clouds normally seen in February...

 

[OldCrohnie]

++UPDATE++

A couple of weeks have flown by and I'd say progress was great in some ways and not in others. The weight gain is slow. Surgeon follow up indicated that the loss of core tissue first needs to get sorted out, and then the weight should come more consistently. My wound VAC continues to do an amazing job, and it should be with me for maybe another week before I go to a traditional dressing. Being rid of the appliance will then make it easier and safer to take a SHOWER!!!! I am sick of sponge baths and can't wait for the bliss of steaming hot spray on my face and body!

My diet and ileo output have been mostly on track except when I cheat. My biggest concern is this pigtail drain that was outputting 80ml per day for about 10 days, and dropped down to 40ml for about 4 days, then it shot up to 100ml 2 days ago, now down to 50-60mls. I'm also finding the drain itself being just below my pelvic bone is very achy and finding it difficult to walk for more than 10-15 minutes. This is not a new development, but is now really starting to bug me as it continues to be a distraction from trying to recover normally... I am curious of others out there went home with one of these drains what sort of timeframe was it before the drain petered out and the drain removed? Other sites I've looked at had people with them for more than 4 weeks, but maybe if someone can clarify the actual term used for an abominate cavity drain, is it "Percutaneous Fluid Drainage" or is this generic and then depending on what part of the body or organ is being drained the term is adjusted? I just want to be getting the info for the correct medical treatment...

One other thing I am trying to figure out is experiences with various supplements and their delivery. I am crushing all my meds, but someone suggested some omega 3 gel caps - which seems to be yet another popular pill format these days. Will these just shoot through to the bag or is there a breakdown and absorption with these types of pills?

All in all things are doing great. Being able to drive has made a huge difference taking a burden off my wife to pick up groceries/drugs etc. Just being able to get out of the house was a huge step for me!

The last and perhaps most important thing I need to deal with is something both dietitian and surgeons mentioned which is the PTSD aspect of things. What was supposed to be a 7 day hospital visit ended up with sepsis and two unplanned surgeries leaving me hospitalized for 38 days. They said I need to deal with this. For me the entire `middle' of the hospital visit is almost completely blank. Am I to try to remember all shitty things they did to me and come to terms with that? My approach has been to leave those memories behind me and face forward with as positive an attitude as I can towards a full recovery. No doubt I am worried about the inevitable surgery to reverse the ileostomy next year or even later this year, but before that I am trying to get through each day as best I can. Some are better than others, but reading the stories here, I take comfort in the fact that i'm not much different than many of you in that Crohn's is a wicked disease with often unpredictable outcomes. In my case, I dodged the knife for 30 years and then it seems I've made up for it in this last 2 months of pain and trauma.

Sorry for my ranting on there - but the final piece for me is to make sure that my head is screwed on straight before I get back to work, and I may engage some professional help for that seeing as it's covered by our extended health benefits...

 

[UnXmas]

I'm glad you're finding some things at least to be positive. It sounds like you've had a lot to cope with.

I have PTSD, though for something besides illness and hospitals (abuse). However, I've had some pretty severe and certainly unplanned illness experiences, and while I'm not sure I'd classify my own as PTSD, there are definitely some similarities, and I've never had such a major, unplanned illness event such as you describe. One thing I wondered reading your post: do you think the memory-blank could be medication rather than stress related? I ask because I know I've had meds before that caused short-term memory loss - general anaesthetics, obviously, but also Amitriptyline, sleep-meds, and opiate pain-killers. A lot of meds can cause memory loss, and I know when you're in hospital they sometimes put you on a drug "cocktail" without going into details with you on the possible side effects. I have also experienced short-term memory-loss when I've had a fever, which is also quite common, so if you were feverish or had an infection of any kind after your surgery, that may explain the memory-blanks.

I just mention these other potential causes as if any of these were involved, it makes it a different situation than if your memory loss was trauma-related.

The standard advice for PTSD always seems to be that you're supposed to face your trauma, usually in the form of discussing it in the "safe environment" of a therapist's office. I have to say, that has always gone terribly for me! For one thing, since doctors were such a big part of my life at the time I was experiencing trauma, they are very much caught up in my PTSD, and a therapist was too similar to a doctor for me to ever feel comfortable in that situation. I was misdiagnosed with anorexia as a teenager when my digestive problems were causing me to lose weight, and doctors didn't believe me and sent me to psychiatric hospital. After experiences like that, it's impossible to ever benefit from therapy, I think. Since hospitals and doctors were involved in your own traumatic experiences, that might be a problem for you too. On the other hand, if doctors were a source of reassurance and help while you were in hospital, perhaps a psychiatrist would appear very different to you than they do to me?

But I would caution against believing any pressure others may put on you to address your trauma in the conventional, therapeutic way. When you are focusing on physical recovery, it may not be the best time to start analysing things. You may also find that getting back into the routine of normal life is all that is needed. Things will go back to normal again for you.

How do you feel about having surgery in the future? Or even visiting doctors? Is it something that stirs up bad feelings? Do you have any anxiety about your state of health? I think being very ill changes our perspective on things. I've often heard it said that young people feel immortal and that that explains many young people's reckless behaviour (e.g. teenagers who drive their cars too fast). I never had that attitude because by the time I was a teen I was sick and my health and life in general seemed very precarious. But again, I find focussing on the routine of boring life to be a big help with this, and in some ways it is more realistic that I have an understanding of how things can go wrong.

There are no easy ways of telling the best way to handle something like this. If you feel ok emotionally and feel you are making progress with your physical recovery, that seems like the best signs that you are coping ok. Having people around who are supportive is a big deal too, but if you sometimes feel you want to talk about things with someone who has a similar perspective or is not as emotionally connected to you as the people in your life, forums such as this one or a professional councillor of some kind may well be a good thing to try.

 

[OldCrohnie]

Hi there - yes I have thought that some or even most of the `blackout' I have is because I was on general anesthetic 3 times instead of once plus morphine and sleeping pill at night. I went into sepsis a day and a half after the first surgery - though it was my wife that noted that I was `off' and insisted they run tests. After that the only things I have any recollection of are the view of the ceiling in ICU and voices telling me I have a breathing tube. My wife kept the papers I was scribbling on - and they are like kindergarten pieces. This was a 4 day ordeal that I mostly cannot recall most of and I don't know that I want to....

The odd thing about the counselling residents in the hospital (psychologist) was they were talking to my wife when I was in ICU and not to me after I was healthy enough to leave ICU to the standard recovery ward. I think that makes perfect sense when the patients are often in a state like mine and those close to them need moral support!

I am sorry to hear of your misdiagnosis and I totally agree about whoever it is needs to be someone you trust. In my life I only had one other encounter with a psychologist and that was when I was in the middle of a career change. That experience was mostly negative because the person was pretending to be Dr. Freud and asking me all about my childhood. Actually looking back it was pretty creepy...

I try to focus my energies mostly on getting through the day, eating my 3000+ calories and getting out for a walk. The times when I am laying down are often when `those thoughts' creep in about the next surgery, what is going on with my pigtail, returning to work, and of course feeling the numerous sensations of 3 new openings in my body that I didn't have in early December last year. Mostly I try to do deep breathing and if I am having pain to relax and channel positive thoughts etc. - and if those don't help I may break down and take a Lorazepam (.5mg) to calm down.

I just reread the last part of your comments, and I was 16 when I was diagnosed, and all my reckless youth actually began the year before that. Keeping in mind this was the early 1970s and there was a lot of misspent youth going on then. Even after I got sick I continued to party, though I will never forget at one house party someone handed me a beer and it went down like gasoline! That's when my drinking days were over, at least until I was in remission 5 years later. Overall, my experience with doctors has been about 75% positive. I've learned to be my own advocate and ask lots of questions. I was frustrated in hospital because the surgical team rotation was different so one day you'd have the morning consult with one member but you end up having to repeat your story multiple times because they hadn't read the file. Anyway in general I totally respect what they do but I have to be sure I understand the implications of what they say even if they get peeved. I also have my wife there because a second perspective will always be better than one (that may be medicated...).

I for sure have anxiety about the state of my health! I need to see this fluid coming out of my abdomen slow down and then stop. The thing I am concerned about most right now is this pigtail drain and have tried to find out what others have experienced in terms of length of time they had theirs before the fluids subsided. Since neither the radiologists nor the surgeons could pinpoint the location, they felt it was OK to have me leave with the drain installed - telling me it would eventually reduce in volume and stop. Then the drain would come out.

I really appreciate your candour in sharing your PTSD experiences. The term, certainly in recent years, has become more widely-used. In my case I probably should have clarified the context was PTST-like symptoms; the inference I believe was that I had certain aspects that are as serious as the one most used in a military context. I have a really good family doctor who has a full service practice that includes physiotherapy and an on-staff psychologist. What I was thinking was having a chat about my surgical adventures and current state and see what they say. As long as they don't pull out a prescription pad, I'm open to suggestions. In the meantime, I am going to be exploring meditation and when I am physically able, yoga to help me get my body and mind in shape for my reversal procedure!

Thanks again for your comments and feedback!

 

[UnXmas]

It sounds like you have a good plan about how to deal with things and prepare for future surgery. I actually find meds very useful in treating anxiety, depression and similar mental issues, though that's mainly because I stumbled onto a couple of meds originally prescribed for me to treat physical symptoms but which had incredible, unintended effects on my emotional state - I know antidepressants leave quite a lot of people feeling simply numb, unable to experience bad emotions, but equally unable to experience good ones. I've found that Amitriptyline allows me to feel both bad and good emotions, but stops me getting overwhelmed by the bad ones; I can feel negative emotions but see them with far greater clarity, and cope far better than I could when med-free. But I think my experience with meds was very unusual in this respect.

I hope the meditation and yoga help - I know many people find them very useful, especially yoga's combined effect on both physical and mental issues - it sounds very apt for dealing with stress surrounding physical illness.

I'm sorry I can't offer any advice on the drain - what kind of follow-up care are you getting from your surgeon? It's surely something that your doctors should be dealing with? I know that sometimes it can be very difficult to actually speak with doctors - they tend to be so busy and unreachable, and then you get such brief appointments. When I've left hospital following surgeries, I've usually been given a contact number for the surgical ward I was on, where there are specialist nurses, and have been told to call them if I have problems in the weeks after leaving hospital. Is there any kind of system like that where you are? I also have stoma nurses I can call if I have problems with my ileostomy - do you have any kind of equivalent for problems with drains? I hope you can get things sorted soon.

 

[OldCrohnie]

Hi again - well it's a plan of sorts but I'm sure it will be changed along the way. One thing I learned through this experience is to expect the unexpected!.

Aside from my youthful craziness, I'm not a big fan of drugs. Once I added up the amount of sulfa my body had processed since 1972 and I started thinking about kidneys etc. However I take them when I need them, especially for pain. The depression thing is new to me in terms of medication, and I can'y say the Ativan dose does much of anything to smooth out my mood. The risk of course is you tell a doctor that, and the next thing you know you are tripping on something else that is also not what you want! I believe its a combination really of some small dose of something to just calm me down when I start worrying about the unknown, combined with a mental commitment to manage those emotions instead of letting them manage my life. I booked an appointment for a consult this week so we'll see....

On the drain, yes we have home nurse care following hospital discharge - and in my case having a wound vac appliance, they have to be certified on the equipment. I've found every one of them have been outstanding nurses with a lot of `field smarts' that you don't see in the hospital staff. Every 4 days all my dressings are replaced or checked (in the case of the pigtail drain). It's basically a tiny tube poking into my belly from the right hip, and it was installed to drain fluid found in a certain area inside me after surgery. I had some good news yesterday when I emptied the collection bag the amount was only 30mls compared to 60-70mls in previous days. This is the trend I want to see until it's virtually zero so the drain can be removed. The placement is in a very sensitive spot, right below the pelvic bone to the left. Every step I take some days I can feel it tweak in pain. Nurses have confirmed there is no infection. So I just keep taking pain killers to help get through
the day. It's not a constant thing, just at certain times and positions/movements. Today, I am going to see if it can be repositioned in terms of where it goes once outside my skin.
Anyway the post hospital care has been great, and I agree the wound care folks are a real help! It's like the surgeons do their thing and then hand your body over to them to tend to the damage and repairs : ) Two in particular at the hospital were 110% passionate about their work and you get a real positive sense that they truly care about getting you healed up as soon as possible.

With my tracking all the outputs (Ileostomy and the pigtail drain) the surgeon is getting regular updates on this plus weekly blood tests. We meet again in a couple of weeks.

One last tidbit of info I should add is we've decided to get 2 more kittens after we had to put down our 17 year old while I was recovering in hospital! They will of course be non stop craziness, but I am looking forward to having some company during the day : )

Its too bad this forum software isn't more user friendly for posting photos...

Thanks so much again for your comments and support!

 

[highlandsrock]

Glad to hear that things appear to be getting back on track. That's an interesting discussion between you and UnXmas. I had to look up PTSD as I have never thought of it in a hospital/surgery context. Now it makes absolute sense. It's got me wondering if we all suffer from it after surgery, but because we eact to circumstances differently, some get though without much of the T(rauma) whilst others get taken very low with it. I think I can feel a post coming on for my blog!

Which brings me neatly onto ways of coming to terms with what you've been through, trauma or no trauma. I have found blogging very therapeutic and maybe that is my way of dealing with PTSD. It's enabled me to look on the whole Crohn's/surgery experience as a sort of reporter and almost become detached from the personal, emotional aspects. It certainly helped with maintaining a positive attitude when it would have been easy to sink into the depths of depression. I would recommend it to anyone and because you're in control you can decide just how much information you out in or keep out. It also gives you the opportunity to revisit the good and bad times on your terms and allow others to learn to benefit from your insights.

..and if you haven't already done so - how about setting up a Twitter account and joinging the active IBD community on there? It's also easy to post pictures of cute kittens

 

[OldCrohnie]

Thanks for the comments! Yah even though I manage a sizeable IT department and have lots of tech skills, I've not gotten around to the twitterverse yet. Probably because I have enough messaging traffic on email and fat fingering my way to stay current there is challenge for me already : )

I feel sort of the same way as you in that the Internet empowers all of us to learn about our situations and get to know others literally around the planet with similar problems. What I struggle with is because I would consider myself a `sensitive' personality, I tend to empathize with others worse off then me. Many times I've been poking around and reading other posts I will come across a real bad case with someone in a similar situation and it's hard for me to not at least have that flash of negative thought saying `that could be you in 6 months...' Those little voices of doubt I might not have had if I were, say, running a meditation video....

Having said that I will take what we have today over anything in the past. Remember how long it took to get test results? In the 70s I seem to recall some stuff got sent out of town to be processed, and the doctor might get dome data sent faster using TELEX : )
Sorry to the younger folks this was what I call the predecessor to email and I still laugh at how we had to type out longer messages on `tape' and then feed them through when online to the recipient!

The point being we have at our disposal a wealth of information and if your perspective is detached and reporter-like then I can see how it could help you through `down' times, especially if you were finding evidence that there's hope for most of us.

I'm still going to talk to the psychologist and see what they think about my situation. I figure it's not costing me anything and the office is 5 minute walk from my house.

 

[highlandsrock]

I've often wondered if, as well as the amazing information resources and ability to support others of a forum such as this, there is also a downside in that the majority of the posts are from sufferers who are having problems and are looking for help or advice. (That's my perception, I don't know if that last statement is true or not). I would imagine that those who have the disease under control are either not going to visit a forum or at least not post "Everything's great. I feel great" out of respect for those who are going through really bad times. Therefore anyone newly joining the forum will get a view that is heavily skewed to the negative. On Crohnology's website you have the opportunity of scoring how "well" you feel and it is heartening to see how many rate their health as 80% or above. It would be great of we could do a similar thing here as there is such a large membership.

 

[OldCrohnie]

I believe that a high percentage of people who end up `here' or on other health-focused support sites start with Google. Those who end up registering I think are a bit more motivated in their quest for information. I have know about this site for quite awhile and until I was told I needed surgery I never felt the need to get active. Since this was a huge unknown for me, I wanted to get in front of it early so I signed up and posted my initial story back in September. I got some informed feedback, though in retrospect, what actually happened to me bears absolutely no resemblance to what I was hearing from others! I agree it would be nice to have the large membership here polled as you suggest - and I am going to check that other site out to see if i've been there before

By the way its almost 2AM in Vancouver and I am up because I'm hungry

 

[UnXmas]

I feel sort of the same way as you in that the Internet empowers all of us to learn about our situations and get to know others literally around the planet with similar problems. What I struggle with is because I would consider myself a `sensitive' personality, I tend to empathize with others worse off then me. Many times I've been poking around and reading other posts I will come across a real bad case with someone in a similar situation and it's hard for me to not at least have that flash of negative thought saying `that could be you in 6 months...' Those little voices of doubt I might not have had if I were, say, running a meditation video....

Strangely I feel very differently - I never come across people who share my experiences (illness-related or otherwise); everything I go through seems very unique with the similarities being in only the smaller, superficial aspects.

 

[OldCrohnie]

I would certainly hope then that even though your situation is unique that there are some common elements (like pain, embarrassment, shame, stress, depression etc.) that allow the shared experiences to either enlighten you or at least provide further context on how the others coped (or not). In the end for me it's a miracle that we have these tools at our disposal where when I was diagnosed the things we have today were almost science fiction!

 

[fastfourier]

I spent about 2-3 weeks in hospital at the end of last summer. I had severe pain in my abdomen, this resulted in a partial hemicolectomy and a mass being removed from my intestine. In the week that followed peritonitis developed due to a leak, and within a few hours of being flown back to the UK I had another laparotomy to clean everything and set up an ileostomy. Over the 2-3 weeks I spent mincing around in the hospital I managed to lose about 20KG. Which is cool if you're a fat chick, but not really ideal.

Over the months that followed I ate whatever I wanted and regained the weight. I think it helped greatly that I was considerably fitter than the majority of people, otherwise I think I'd have been in a much worse state. Being in the military has probably been a great factor in dealing with it. I felt pretty confident taking a robust approach to diet, weight gain and dealing with other stoma issues. No drama really, especially now its been reversed.

I've often wondered if, as well as the amazing information resources and ability to support others of a forum such as this, there is also a downside in that the majority of the posts are from sufferers who are having problems and are looking for help or advice. (That's my perception, I don't know if that last statement is true or not). I would imagine that those who have the disease under control are either not going to visit a forum or at least not post "Everything's great. I feel great" out of respect for those who are going through really bad times. Therefore anyone newly joining the forum will get a view that is heavily skewed to the negative. On Crohnology's website you have the opportunity of scoring how "well" you feel and it is heartening to see how many rate their health as 80% or above. It would be great of we could do a similar thing here as there is such a large membership.

This is spot on.

 

[OldCrohnie]

I envy this sort of down to business approach! I wish I had the sort of passive objectivity that come through here. OK so I lost weight, I'll just take a "robust" approach (whatever that is : ) ) and gain it back.

I also love the casual mention of reversal.

All I can say is way to go fastfourier! Spot on is right!!!

One thing is for sure being fit at the outset gets you way further ahead. I quit smoking 2 days before my operation, and I wonder if I had quit 6 months before whether I would have had the complications that kept me in a hospital bed for 38 days...