Yeah, recovery from the creation of my J pouch was rough, hell of a lot more difficult than when my bowel removed.

Personally, as after only two weeks, if no infection, it 's probablely part of the healing process; there are additional organs within the lower abdomen of a female which are probably manipulated and maybe bruised as a result of the surgery.

The tiredness and depression your wife is experiencing is more than likely due to dehydration and low potassium.

I assume your wife is still in hospital ?

Hey Strange, thanks for prompt reply. It is helpful.

It is actually now 1 month post surgery, and my wife is home. She was hospitalized for ~7days and then returned home. 

The pains she has started roughly two weeks after surgery, so this is why we have been concerned if there is something wrong and not only part of the healing process. This pain comes in waves and often makes her cry (but there is naturally also lot of emotion involved for sure).  Often waves are assosiated to post-toilet..

I really hope it is part of the normal process, but not yet confident, will seek more doctors diagnosis / advices, but also happy to hear more experiences and advice

Thanks for the potassium tip, and drinking, we will focus on those. 

Wish a great summer day for everyone, here in Finland the sun does not set during midsummer, so at least there is hell of a lot of light in and around the tunnel

Cheers

P

In my experience, if you are progressing well and develop NEW pain that is persistant, that is a signifigant thing. Part of healing? Maybe, but I'd be very wary and keep a close eye on other signs and symptoms like persistent low grade fever, increased frequency, bleeding, etc..

It appears they've ruled out obstruction and infection (for now), but maybe it is just evolving. If she has one of those things, sooner or later, you'll know for sure. It is possible for this to be healing, as it takes time for the nerves to wake from trauma and reconnect. Sometimes, nerve fibers become trapped in scar tissue, leading to a pain syndrome. But at this point, all you can do is wait and see.

I hope this resolves itself in the next couple of weeks. If not, be a squeaky wheel to the surgeon. Otherwise they assume all is good.

Jan

I'm sorry, I mis read you post slightly, I thought your wife had only been experiencing the pain two weeks since surgery.

If doctors have ruled out infection and can't detect anything from scans, images etc, then as you've mentioned, the tiredness and depression, it's all the more important to remain hydrated and replenish electrolytes, one being potassium.

Whilst awaiting takedown, I dehydrated, to an extent I was admitted into hospital via Ambulance, more than once for IV fluids.

Before admission, I had a nauseating feeling in my stomach, really uncomfortable. i still had the temp loop ileostomy, there was no pain, just really uncomfortable and nauseating.

I had output from the loop ileostomy, which was very clear liquid and it was still believed I had a blockage.

Low Potassium caused the cramp in my arms & legs, I guess anywhere where there's muscle.

As well as uncontrollable tiredness, exhaustion and the overwhelming need to sleep, I also experienced confussion.

My Consultants came to the conclusion, that I was unable to absorb a sufficient quantity of fluids via the small intestine despite what I was drinking.

St Marks Hospital, London, where the J pouch was pioneered, suggest a home made hydration solution or alternatively, pharmistis sell rehydration sachets, normally used when suffering from diarrhoea.

If you Google....  patient information-st marks.pdf , you'll find the hydration solution recipe.

My consultants said I should urinate no less this 3 times per day and it should be of a light straw colour..... urinating any less and being much darker is a sign of dehydration.

Hey, Thanks Jan, Thanks Strange! Very good pointers! We will now monitor how it goes and definitively try out the hydration method Strange proposed. 

Also, Jan, special thanks for the Squaky Wheel advice with surgeons and doctors, that build confidence and might be fun !!! thanks!

Here is the link for others:
http://www.stmarkshospital.nhs...utput-stoma-2014.pdf

Today, situation is still the same, it is painful, but my wife is in a better mood asfais. Like said, we monitor, and we seek a tighter grip with doctor´s. Dont know yet, what it is, but time will tell, and we will face what comes head on.

Take care

P

Hello everyone again,

Unfortunately no improvements to celebrate from our side

Pain still exists and is not getting better. Like written above.

- No fever,
- No symptoms of infection.
- 7-8 times in toilet per day (and after pain occurs more). 
- No signs of dehydration
- Low Hemoglobine, but its been like that pre-surgery, so just to watch out (?)
- Using Tramadol Pain med, and Burana600mg and Panadol1000mg

We went to hospital day before. No further advice, recommedation from doctor: wait and see, can be just healing pain. Post-surgery Endoscopy date was proposed By the treating doctor to be done earlier, in two weeks time, instead end of August. This is good.

Also, due to depression, we will go to see psychiatric doctor tomorrow, lets see how that will turn out. Will post back. And if anyone has advices on such visit, meds - no-meds... share...

Funny thing is that, we have not read about such pains, now month and a half after surgery.. if someone has had similar experiences, share. pls.

Otherwise, it is a beatiful summer day here in Finland and will take all out of that.

Take care u all, 

P

Hi Pet, 

I am going to ask a few more specific questions here...when does the pain happen? Before, during or after eating and then how long after? 

Does it hurt more standing, sitting, laying down?

Does movement exacerbate the movement? (make it worse)

Does it hurt more or less in the mornings after a night's worth of rest? (if she sleeps)...Does rest help or does activity help?

Has she tried heating pads or ice? Do either help?

Could it be inflammation? (activity and NSAIDs help (but may hurt her stomach))

Do certain foods make it worse?

Does her period (if she still has one) make it worse?  Did her period start around the time that the pain started?

No answers for you yet but maybe once I get the answer to these questions I may be able to come up with some suggestions.

Hang in there

Sharon 

Depending on the character of the pain I suppose this could be a spasmodic pouch. If so, that's often successfully treated with Bentyl or Levsin. Good luck!

Hey, thanks, 

Here´s bit more details on the characters and symptoms of the pain.

Pain does not seem to be related to eating, or at least not acknowledged, eating is "normal, and does not seem to affect the pain.

It seems to occur after toilet visits, both during/after number 1 and number 2. Typically it is so, that my wife stops standing somewhere (kitchen) in pain and stands still as it hurts that it is difficult to move. Painkillers help, but does not take it away. So, it occurs mostly standing, and mainly in the towards afternoon and evening. 

When pain meds fade away, it typically starts again. Not noticeable during night sleeping, however, when sleeping pain is in hips, especially if not lying on back.

Have not noticed it has to do with movement, or activity, but what I wrote above, I would not exclude that yet. 

Periods after the surgery has occured once, but very little blood and only few days. Next ones should come, those are few days late, so wait and see. 

Have not tried ice, however warm shower seems not have a difference, and heat pads not tested. Should try out, will do.

Hemoglobine in blood is at 80, it is very low, but it was low pre-surgery as well. Eating iron is not recommended, so, figuring out ways here too.

One particularity my wife now remembers after those excellent questions from Sharon. When still hospitalized, and when the catheter was removed, she remembers a painful experience in urins which resembles the pain she is now experiencing. Dont know it that is related.

Those are the diagnosis at this stage, will keep a better journal from now on. 

btw, what would be symptoms from inflammation? currently no fever.

@scott, thanks for comment too! What would be the symptoms for spasmodic pouch, very curious.

Cheers, 

P

That doesn't sound like a spasmodic pouch to me, which would tend to be related to pouch emptying. There are all kinds of things it could be. The lack of fever makes infection less likely, but the timing is consistent with an inconveniently located post-surgical adhesion tugging on something that doesn't want to be tugged. Unfortunately those are hard to diagnose with certainty, and hard to treat. 

Pain during and after bowel movements could be a fissure. They cause spasms in the sphincters that are very painful. The pain is typically rectal, but can also refer into the pelvis. The random pains while standing do sound like kinks from adhesions (internal bands of scar tissue). The trouble from these can come and go.

Jan

Hey, I was offline for a while, and it felt good.  My son had yesterday confirmation from church, so that was a delight, and a happy day (exhausting though). 

My wife is still in pain, and she feels she is too tired todo anything. She was a trooper to help organizing the party, however, it reminded her that she is tired, and the worst part seems to be that she wants to do, but she cant. That is eating alive. I love and put hope on the fact that she wants! That is good! It just is also very painful for me as I feel there is not that much I can do as I would like to help. Anyway, its now day By day.

Now, we have visited the Psychiatric doctor, a week ago. First visit. She got home work to assess her own situation, past, present. And she was assigned meds to raise the pain tolerance levels which will start to have effect in the long run.

 We will have next visit to psychiatric D tomorrow, and lets see how that turns out. Thursday this week there will be post-surgery endoscopy to check how it looks like inside. I have hopes for both, but not high, realistic views and its part of the process. 

So, in short, it is still tough. Pain is there, post-event depression is there. Unfortunately both of these may be around as hang-around members for some time, and even if the pain goes away, it may be a rocky road to feel energized once again. 

Day By Day, and using all means necessary.

Take care you all, 

P

I have to write and tell you that, as a wife with a husband who cares but never enough to actually learn much about my condition or my pain, I am heartened to know there are men/husbands like you out there! Whatever happens, you and your wife will be better off for your support and having been part of the process toward understanding her condition!

As for the on-going pain, and your mention of her experiencing something similar during the removal of the catheter -- I had that experience as well. I also was extremely sick prior to surgery and continue to have more on-going abdominal pain than is thought to be normal (I use that term loosely.) I can only sleep on my back now due to increased pain sleeping on sides and have pain that radiates to my hips. I also have urinary problems that seem to have worsened with each surgery.

To date, experts in both the GI and Urology fields attribute the pain to nerve damage from surgery or adhesions post surgery. Given the tight quarters in that area, the number of organs moved and the number of small parts to work around, they have said some patients do experience this. In nerve-related concerns, time is the only thing that will tell if healing can resolve the issue or if it will be on-going. I am hopeful for you and your wife that if this is the source of her issues, she is one of the lucky ones for whom time heals. 

The psychiatric consult is such a good thing and again, so good to know she has your support! My husband just thinks I'm crazy sometimes :-( The other thing that could be at work with her fatigue is that what is left of our digestive system doesn't really work optimally right after surgery. Most people report significant gains in nutritional absorption and tolerances months and even a year or more after their initial surgery. Any type of nutritional support or testing (whole food supplements of some kind?) would ensure she has less issues due to malnourishment. 

Best wishes, Jennifer

Hi Ho, 

Greets from Rainy Finland. 

Fresh out from psychiatrician visit while ago 

Positives first on where we stand. Pain has been less last few days which is absolutely great, but lets follow how it evolves. Its still considerable, but somehow better. Maybe due to the medications that raises tolerance for pain.

Now, nights have been bad. Difficult to sleep, and shivers and sweat during the night. We suspect its the new medication for pain tolerance, and the doctor ordered to pause them for two days and see what will happen. Also, psychiatric doctor proposed later in July or August a intense care period (does not mean staying over in hospital, but week or two in tighter monitoring with therapy. We ofcourse warmly welcome such try-out.

Overall, its a better day and makes me feel hopeful, still lets go day By day, and this week thursday we have the post-surgery endoscopy to see inside.

@Jennifer, Million+1 roses for your post! It sounds very close to what my wife has been experiencing, including the radiating pain in the hip! I would be more than happy to exhange few views 1-on-1 if its ok for you?

I think I can also relate to your husband. It is not that easy for anyone. It is actually quite difficult and I am now very lucky as I feel quite good personally and I have the energy levels to take care and support. It is still not easy. What is easy is to get frustrated, maybe feel guilt, being short-sighted and not patient, react on situations in funny and or even aggressive ways as you don´t actually know what you can do to help. Also, it is propably very easy to think, that hey, the otherone acts that way, because he or she is sick. None of those easy ways are very productive and cause a conflict very fast with a viral effect. Maybe the situation can be put in a glass-jar and talk about it with less emotion [mother of all challenges ]

Anyway, appreciate 110% your last post Jennifer, thanks, and in your last drop you talk about nutrition.

Ha ha, nutrition! We have had conflict situations (or almost) with my wife about nutrition.. I have been doing food here and there, but I have not been sure what she should eat and what she prefers. So, in my style, I have asked. What would you like to have? What should I do for dinner? What should I buy from grocery store? WELL SHE DOES NOT KNOW AND DOES NOT HAVE ENERGY TO FIGURE OUT! HAHA! It took me this long to really adopt that as a fact, and that makes it easier for me and her. HAHA! What is appalling, the hospital we go to, their advice for nutrition: EAT WHAT EVER YOU CAN, YOU CAN TRY DIFFERENT THINGS,SEE WHAT FITS YOU!

Just discussed with my wife on the nutrition topic, and she said she only wished the hospital would have given her a weekly menu to start with and not a generic advice saying, try different things. 

So, everyone... please share links to nutrition routines, including supplements from which I can make a program for my wife (funnily enough, I have one for myself, but have not done it for my wife, ahaha)..

oops, that post turned out lenghty...

Take care you all!!

P

This sort of got buried. There used to be a link for this at the top of the page, but after switching to Hoop.la, it sort of got sidelined. It is under "Information" in the drop down list. My surgeon gave me a copy of the main article by Linda Hurd before my surgery in 1995. I think it is still relevant.

Anyway, here is the dietary guidelines that have been pretty useful for decades. Hope you find it helpful.:

https://www.j-pouch.org/pages/diet

Jan

Hyvaa Paivaa Petfan

I am not a Finn but my husband is you are in a beautiful country visited several times I wanted to say you are doing a great job looking after your wife must be something in you Finn culture as my husband is so patient and loving in his care we have been on this path since before we were married my surgery was 8 years ago many complications hospital visits but still hanging in there.  I have found after some time and help from a dietician that my j pouch works better on a Fodmap diet my toilet trips have improved better nights dairy dose not work for me I use lactose free milk even yogurt upsets me. I now am dealing with blockages been in hospital 5 times this year but we will work through it together I feel this journey has made us closer I would say your wife is very thankful for your loving care all the best.

susan and Ismo 

Hey you all, here a short update..

Susan, hang in there! Sounds like you are having tough times right now! Say my best to Ismo! He would not be very jealous of the finnish summer this year, its cold and rainy, however, some nice days too. Im happy to get in touch one-on-one! 

Last week we went to post-surgery inspection. It was very fast, took only like 30 minutes max. Everything seems to be healing pretty well. Except for the pain. This time the doctors said that the pain is not something which is normal (Sherlock), but also said its unlikely its related to damaged nerve system (which I start to think is very likely). 

Pain is still there, but the positive side is that it seems to be more tolerable. I like that, but lets keep a close eye. anyway, all positive signals are welcome. Things are better, but pain is still there.

My wife´s therapy was moved from the hospital which operated closer to our home. Last week friday (right after the inspection) she visited the new Place, and got a warm care from a nurse specialized in depression/Psychiatric care. She was appointed to a nutritionist. The advice is that adequate rest and sleep and balanced nutrition will be the keys to overcome the post-trauma depression. We will definitively focus on those. 

I have not yet made the "daily food/drink" plan, infact, I took my son and our dog to our summer cabin for the long weekend, and my wife stayed home. I believe it was a good thing, even if thoughts slip to my mind that it was not. 

On monday, my wife saw the new psychiatric doctor, that was also a good experience and she got new medicine for the depression. We take this in a positive spirit. Message from doctor´s is that forecast for getting over the depression in cases like this is positive, as long as the pain eases up, nutrition is at right level, and rest and sleep are ok. So, its an IF, but we think positively about it and are ready for setbacks, which are likely to come.

Right now, things are moving towards the positive direction or at least they are not getting worse. I will need to be careful not to forget/overlook that my wife is still sick and under healing process. It will take some time, and so forth. Its not a snap of fingers, it is long term - so its better to enjoy the rain too

Take Care you all!

P

Hello everyone, hope you have had not too scary of a Halloween.

It has been a long time since I have last posted here.

Things are better on our side and my wife has returned to work. This is good. 

Pains are not so big anymore and my wife is taking therapy biweekly which is also supporting the recovery.

I am quite positive things will continue to imporve, but also understand there may be complications along the way like pouchitis.

Reason to post this is to say that, yes, it is better, and it can get better.

This is for all those you go through J-pouch surgery and have hardship and struggle. Often time will heal, but take all means necessary to improve situation. Use this great channel to seek for advice which you don´t hear from doctors as they do not necessarily know. 

Thanks for everyone who helped out! 

I will be posting if things change, or if I feel like posting. Please feel free to contact me directly via personal messages in case you have same kind of challenges as in this thread, happy to share experiences

P

It took my son about a year and a half of on and off gut pains for his body to fully adapt and smooth things out.