Hello- Newly Diagnosed, Surgery Tomorrow

Good Evening everyone,

I have been suffering with IBD for about 8 years now - although as with many other sufferers as I have picked up through the forum I was mis-diagnosed with IBS. I don't blame the doctors - they did scans and bloods etc, just didn't get to IBD. Initially for the first few years suffered from servere cramping, a hiatus hernia in my stomach and massive reflux, nausea vomitting etc at times. Lost about 25 kilos in weight over that time and looked like a skeleton.

Eventually with the help of acid management the reflux stopped and the cramping was manageable with copius amounts of Buscopan IBS (mental more than actual in my opinion) and painkillers (I know not a good idea but hey).
This went on until this year when I had a passage of time of about 5 months starting on New Years eve with a partial blockage. I woke up at the middle of the night thinking my appendix was going to burst. I was in agony for about 4 hours after speaking with an telephone nurse (NHS direct) before going to A&E. They did some blood tests to check for infection and 'monitored' me.... blood tests came back with low White blood cell count and low iron. They said that my extreme-can't stand up- can't walk- can't move pain was due to a muscle strain. Clearly wrong.
Eventually this calmed down and subsequently went to my first visit of a GI. What a difference in perspective. First visit was after a thorough QA and examination that the likelihood was Crohns. He said that I would need a full work up which included blood tests, MRI and scopes- top and tail....

I also went for an iron infusion (iron tablets bad for me- bung me up like a plug in a sink).

Full diagnoses is that I have 90%definite Crohns with an ileal mass in my Ileocecal valve. My intestine tract had swollen to about 7cm in diameter and has damaged about 40cm of small and large intestine. No inflammation present but essentially just a mass of scar tissue. The appendix pain at the beginning of the year was likely a partial blockage.
My GI has recommended a resection which I am going to do tomorrow. Must be honest bricking myself about this a bit...

So I will as other update when I can how my surgery goes, the after effects and care, challenges etc.

Anybody with any advice post surgery would be helpful.

I am hoping that after surgery my life can adjust where I don't have to think about diet, constipation, effectivness of bowel movement, stomach rumbling.

PS - Odd sympton- Has anybody had their sense of smell diminish with Crohns? Not to blow my own trumpet - but I won a couple of smallish wine competition (tasting etc) and for the past 3 years my sense of smell has diminished where I can't do this anymore.... it was an integral part of my job (hard life I know) but seeing as I can't smell I have to depend on my tongue but that is only about 50% of tasting wine??

Hi and welcome to the forum!

Glad you finally got a diagnosis and sorry you had to wait so long to the point of needing surgery. I've had one resection so far and it put me into remission for the past 13 years. I also take maintenance medication though (was on 6MP and Asacol, then just 6MP and am now only on Humira). Ask your doctor if they plan on putting you on any type of maintenance meds after surgery.

Took me almost 2 months to fully recover from mine because it got infected but that's because I was on high doses of steroids and still weaning off them after surgery. Other people have mentioned maybe 3 weeks to a month. Depends on how the surgery was done like open, laparoscopic or like mine was laparoscopic with hand assist (I have about a 4 inch scar with one key hole).

After surgery take food and drink slow (you'll be on a liquid diet first for a couple days) and get up and walk around when you can to help get things moving inside (they want you to be able to pass gas and have a BM before you go).

Have a look through in the Surgery section here: http://www.crohnsforum.com/forumdisplay.php?f=71 Especially the sticky here where people shared their surgery stories (mine's in there too): http://www.crohnsforum.com/showthread.php?t=30212

As for the sense of smell and taste that's a first for me hearing it on the forum. I'm gonna tag David again in case he's heard of it and maybe even Judith might have some insight on the matter.

Thank you for the tag Crabby.

Hello GrantC,
Welcome to CrohnsForum. I am so sorry you have been going through all of this pain, symptoms and misdiagnoses. Unfortunately, you are not alone. It sounds like you have a competent GI - this is excellent!

I wish you all the best with your surgery tomorrow. I will be thinking of you. Please keep us updated.

I am aware of multiple different things that can cause the sense of smell to be significantly reduced / go away.
I have a couple of questions:
1. Are your nasal passages are clear and you can pass air through them?
2. Have you had a head injury, face injury, or surgery immediately prior to the loss of smell? Or a massive infection of the sinuses/head area prior to the loss?
3. Was the loss of smell gradual or quick?
4. Do you have other symptoms? Headaches? Coughing Sneezing, etc.?
5. How is the sense of taste? Hearing? Balance? Do you have tingling sensation in your hands/feet/etc?
6. Are you of advanced age? The elderly can often have a loss of smell.

There are multiple medications and chemical exposures that can cause this problem. If you dont mind giving me a meds list (including meds that you have stopped within the past few months) that would help me to flag it. If you can include Supplements and Vitamins that would help too.

I have good news and bad news. The bad news is if it is a chemical exposure (ex. Xylene, Benzene, Paints, etc.) you need to stop your exposure because there are health effects that are far more significant than loss of smell.

The good news is that the cells responsible for the sense of smell are constantly being renewed, even in adults. They are called "Stem Cells". The ability of these cells to renew is so exciting that they are regularly used in Regeneration research.

I wish you all the best for your surgery tomorrow and welcome to the forum.

Hi Grant and welcome to the community! Wow, you've been on quite a journey and it sounds like another one is about to begin. I pray that your surgery goes off without a hitch and you're doing better than you have in years in no time Please keep us updated on that one.

Judith has lots of great ideas whereas I tend to go straight for vitamin/minerals in people with Crohn's since deficiencies are so common. As for the sense of smell, I'd bet good money you're deficient in one or a combination of the following vitamins/minerals which can affect sense of smell: vitamin B12, zinc, vitamin A, copper, vitamin B3, vitamin B6. People with Crohn's disease are often deficient in many of the listed vitamins and minerals. Once your surgery is done, I suggest requesting they be tested (as well as others such as vitamin D, magnesium, selenium, folate) to see what your status is and to properly supplement if you're deficient. You may have to fight for some of these tests but it's well worth it. DO NOT blindly supplement as some of what I listed can be toxic if improperly supplemented.

Best of luck to you and please keep us updated.

Hi everyone and thanks for the welcome.

Sound interesting with regards to the vitamin and mineral test. I will definitely request that after the op.

To answer some I the questions regarding smell:

I am 33 years old and not been exposed to any chemicals that would affect my sense I smell. I don sneeze or cough excessively. The only Meds I have been in the par was colofac, Zantac and then buscopanIbs for cramp pain.

Hi Grant,

To provide one of the sources for my vitamin/mineral assertion, give this a read. Sometimes doctors need proof that vitamin/mineral deficiencies can cause such problems so printing out and highlighting that area of the paper might be in your best interest. The paper may also give you some insight into other potential causes.

GrantC,
Wishing you all the best on your surgery.

Wow, take fewer meds than I expected. I didnt see any correlation with loss of smell and those drugs. For future reference... antibiotics can alter olfaction (sense of smell).

Excellent paper David! Thanks!
As David posted, your problem may lie in the Vitamin and Mineral Deficiencies. Hopefully your surgery and effective supplementation strategies will be your road to recovery for both conditions.

Hello, New to Forum, just a quick note, status post bowel resection 5/30/12 resulting in an ileostomy for almost 4 months; status post reversal 9/11/12, YEAH!!!!!!!!!! Diagnosed with IBS in my 20's; perirectal abscess revealed Crohn's in my 30's; Pentasa, Asacol, Prednisone multiple years ; hospitalization for obstructions several times; and then Remicade for 10 years, a miracle, changed my life but decided I was getting older and the dose doubled and it has serious side affects, could not stay on forever and decided to go off - bowel perforation @ 50 resulting in emergency bowel resection and ileostomy within this past 4 months ago; very dark period but I have come thru and am very happy mentally and physically! I had decided before emergency surgery to have iliectomy but pre-op colonoscopy revealed Crohn's in my large instestine then and surgery would not help at that time but several weeks later surgery had to be done emergently because they did not realize how bad I was; hospitalized for over 2 weeks because I was readmitted a day after they released with large liver abscess, apparently from my leaky gut! Was sent home with drain in my liver and PIC line for IV antibotics for close to 2 months; lost 50 lbs....one bright spot to this nightmare; ileostomy reversal almost 4 weeks ago, issues with gas build up but gas-x did wonders and of course the diarrhea; abdominal pain if I do too much; nausea and wreching, sometime a small amouth of vomiting; my advice to all is to definitely stick to low residue diet (no fiber, as in salads, raw veggies, spicey foods, etc...) and drink plenty of fluids, water, etc...; once the ostomy bag was removed I started having water retention problems so I try to watch my salt intake; question to all females out there, I realize I am 50 but I was still getting my period; since my initial surgery I have not gotten it and I am not having any menopausal issues; anyone out there experience anything of this nature or can explain?; to GrantC, I told you all this to show you are not alone...good luck, hang in there, there is a light at the end of this tunnel and you will get better! Praying for your speedy recovery....Been there, done that!

Hi everyone so it is day four after surgery. Sorry I did not write earlier but couldn't really focus or concentrate. Sorry about forthcoming iPhone typos as well.

So day of surgery was a bit of a wait. Nil by mouth from 9 in the morning. Arrived at the hospital for 12pm and went through all the pre-op meetings with aneathetist, doctor and then surgeon. It turns out that the surgeon was not happy with my MRI scan so consulted with the radiologist and between them they decided that i had an orange size lump in my large bowel just the if valve and stricture and then another orange size dilation of the small intestine with a large amount of backed up feacal matter. A stoma was now a reality as opposed to possibility. Glad they picked up then and their. They also decided on an epidural for pain relief which seemed to work.

So sat around in my room until about 6.30 and then got dressed for survey in a glamourous paper gown . Had the epidural put in which was painless and don't remember much from that point onwards.

I was out of surgery by 9.30 and into intensive care for the night. The surgery went well And I did have an ileostmy. Not the best new but hey it's about the bigger picture. Sorry forgot to mention that they could not do it laparoscopy but through a large cut. Pain was manageable. In fact I suffered a block on my right side so could feel my right leg or lift it etc. saw the 2nd surgeon in the morning and be was happy with everything an reempathised the need for the bag. My ingesting was apparently so dilate it could hold a stitch.

After spending most of the morning in the icu I was moved down to general wards later on I was suffering with pain on my left side as the Epi was only working on the right so I had to lie on my left to get it to gravity feed. They also tried to bolus it it it did not work. They increased my dosage as well. Had some soup for dinner which was great at the time but a bad idea in hind sight. Will sign off for now as a bit drowsy. Interesting times to come!

Glad they caught both masses so you wouldn't have to go in for a 2nd surgery not long after. Hope the stoma is a blessing in disguise and that you heal well and get out of there soon. Keep us posted on your progress. Feel free to check out the stoma subforum anytime for any questions or support in that area from others who fully understand. http://www.crohnsforum.com/forumdisplay.php?f=46

So update on day 2. Not a great day. I woke up with a fright in the middle of the night the first time my stoma worked. Not from pain just unexpectedness. This went on through the night. Pain was as before with a numb right let and semi-pain on my left abdomen. Slept for some of the morning but woke up with quite a bi of nausea. My brother came to visit which was great. The nurses decided to give me an anti nausea injection. Shortly after this i threw up a thin black vomit(sorry for the descriptive). I was pretty knackered so slept a bit and woke up again about 2 hours later. Still very Ill feeling and loads of acid reflux. The nurses had a chat with doctors and they said they would try another stronger anti nausea injection. This did not work either. I ended up throwing up some more. They spoke with consultant and they decided to put an aspirator down my nose to my stomach to help take off some of the fluids. As necessary as this was it was the. Kat unpleasant experience I've experienced. Literrally gagged and projectile vomited over myself, bed and the poor nurses. So much fluid came out that was trapped I could feel the eventual relief.
During this time my stoma was working overtime. Loads of fluid NASA coming out. By 10 last night I was in pain again and exhausted. The nurses picked up that my epi was failing so advised that I see a doctor and my anaesthetist was called
They recommended that I move over to a pump which they did last night. Immediately could lie on my back again and pain relief much better. Deducts you get the rest of the night and then woke up in the morning consultant who just arrived to evaluate me. He said that my bowels were in paralysis and that it would be a few days before they would start functioning normally. He was happy with my progress though so can't complain.

So a horrible 24hrs. But onwards and upwards and have had a good day today. Relatively pain free. Slower stoma movements. And also got out of the bed for the first time. Washed properly shaved and brushed teeth which was great.
I was quite tired during the day so slept most of the day. Will update later when there is more news.

Thanks for the update! Sorry you're going through such a rough time. Hope things start moving again soon so you'll start feeling 100% better.

Thank you so much for the updates. I know it cannot be easy to post while you are in so much pain and in the hospital.
I hope you are feeling better quickly. Your exhaustion is normal - go with it.... sleep is the best medicine!

Hi everyone. So been a few things going on. Monday was a better day. Bit calmer with me getting out and about. I was also lucky enough to be moved to a better room. A sneaky guess as that may mean I a here for a while. As it stands my bowels have still. Of women up a week after surgery. The consultant did say I had a severe blockage and impaction so this may take some time. I had my NG tube removed on tuesday as well as my catheter which was great. Day started well. Small bites of food nothing serious. Then whack in the evening incredible nausea which was sorted by some strong Meds and knocked me out. Wednesday was on with a bit if nausea through the day. Took it easy and had my best nights rest. This morning I woke and after meeting my gi he said things are progressing as expected. I was on fentonal sic for pain so this was discontinued which was a relief as I thought this was adding to my nausea. I was hardly using the button. Only when coughing or when throwing up. I woke up really good this morning.

Then back to Sunday. Extreme nausea. Threw up twice -just lilies bile and now have the nasal gastric back in place. Feel really down and just wish my gut would wake up. Anybody have any idea how long this will take? Averages estimates and personal experiences welcome.

I midst say though the nurses here are superb. Knowledgable.

Wasn't finished~ early send

Nurses where knowledgable. Friendly helpful and patient. Really leaning on them at the moment.

From reading others' stories, waiting for your intestines to wake back up seems to be one of the harder aspects.

Other than that, it sounds like you're doing pretty good which is great Here's to a speedy recovery and your intestines dancing soon

Thanks David. Just is frustrating to go through this.

Here's an old thread where a few people shared their experience: http://www.crohnsforum.com/showthread.php?t=29470

Hope your bowels wake up soon. I didn't have that issue after my resection so I have no experience there (just experience in infection at the surgical site).

Thanks Crabby. Seems a range of times. Need to get walking some more I think.

Thanks for the update Grant.
Fentanyl makes me have extreme nausea too. The only drug that could manage the nausea was Tigan (trimethobenzamide). Everyone is different but Tigan works for me. I hope you feel better now that you are off the Fentanyl.

Hi GrantC I was just checking in to see how you are feeling.