Struggling badly post surgery

It's not uncommon to still have UC symptoms after the first step of a 3 step surgery.  You still have quite a bit of rectal tissue left which will be removed at your second surgery.  This is not an indication of how you will feel later.  The symptoms you describe, with the exception of the UTI are normal.  Have you seen a urologist for the ongoing UTI?

 

Sue

Hi Sue Bear

Thanks so much for responding.  I have already had the second of the three surgeries.  I am only awaiting take down, so my rectum was removed leaving only a tiny bit for her to attach the pouch to.  I haven't seen a urologist yet about the bladder infection but that is a good idea,  Is it normal to have these UC symptoms after the second surgery?

I am so sorry you are feeling so crappy. I had similar issues after my 2nd step was done. I felt flu-like and crampy. I was severely dehydrated. I cannot remember how many times I was in the ER due to dehydration. I ended up getting my takedown earlier than scheduled because I was dehydrated so much. Anything I ate was out in my bag within a few minutes and we could not get it under control. I also had the lovely mucous come out and had no control over it but it all stopped after takedown. I hope you start feeling better!!Take care!!

Hi, I can totally related to how you are feeling. I had a horrible recovery after my colectomy. I had a two year old at the time and it was so difficult as I couldn't parent her for what seemed like ages. I too had lost a lot of weight and couldn't seem to put any back on. I also had the UC symptoms continue. The good news is that eventually, after takedown, the UC symptoms went away once I started taking antibiotics to treat pouchitis. I also finally started healling and putting on weight after about 4 months post-surgery once I was able to get off all the prednisone. Your body may just wake awhile to heal. A doctor at the time gave me a good tip to help with healing -- he said ot eat as much plain protein as possible: chicken, protein powder and fish. Your body needs it to build tissue and heal.  Good luck! Sometimemes it feels neverending but it will get better.

Haidalyn, you have just been through some of the toughest surgery you will ever have.  The pain seems endless.  Keep taking the meds, they work and if you really need them, they will work.  My son had his initial surgery in June.  It went perfect except for dealing with the ostomy bag.  he also as Aspergers, and sensory integration, so dealing with body fluids was not easy for him.  Seems like it's always my job!  H did suffer a great deal of pain, but by the end of July he was pretty much off most of the pain meds.  However he did complain a lot about pain on the inside.  We chalked it up to post surgical.  In Sept. He had his take down and the ostomy went away , oh happy day, not.  He was up all night in the bathroom.  Couldn't eat, and when he did it hurt.  Back on pain killers.  From a surgical standpoint, things seemed fine.  Surgeon couldn't undersrand what was bothering him.  Finally, we went back to the gastro.  Did a bunch of tests, a capsual study, a CT scan.  they found he had a good size abscess.  It was fungal.  Two weeks later they found the fistula.  From what I understand this is all extremely painful.  Still on pain meds.  This kid has not been off of them since September.  But the long and short is, this stuff is all painful. Maybe see your gastro, I found mine to be more helpful in this case.  

 

I had similar complications after my step 1 of 2.  Infection, fever and a postsurgical ileus and I also developed a yeast infection with the temporary ileostomy that didn't go away and wasn't cured until takedown.  I lost significant weight down to about 135 pounds, whereas my weight now is a healthier 170.

 

Hang in there, there will be better days ahead.

You guys are awesome.  Thank you SO MUCH for taking the time to respond.  I have been unable to get into a GI due to extremely long waiting lists. My family doctor is great but not knowledgeable about these surgeries or what side effects may result.  My surgeon is great but really busy and very difficult to get in to.  For example I had the surgery on Feb 2 and 1st follow up apt was booked for March 27.  Lots of un fun stuff has been happening in between.  I am learning a lot from this website, and from your collective experiences and expertise.  Maybe its just going to take me awhile longer to get to normal.  If I keep going at this rate though, I think I may have to post-pone my takedown surgery.  I just cant see being ready to go through it within the next 6-8 weeks...

Hi!

i just wanted to say you're not alone in feeling frustrated. I had some complications after my first step of surgery and I thought I would lose my mind. I too at the time had two little kids to take care of.  I remember crying every day. My incison also got infected and I developed an abscess in my pelvic area that needed to be drained.  I had to have the drain in for six weeks. It was just a really rough go so I sympathize with you! I am happy to say that when my take down surgery came it went off without a hitch. I had a very smooth recovery from it was back to life as usual just a few weeks after. It's been smooth sailing ever since. 

 

Wishing you you the same speedy recovery from your takedown. Pretty soon this will all be behind you....there is light at the end of the tunnel. Hang in there! 

I'm curious as to why you are having such a challenge getting more timely help from your surgeon.  Where are you located?  Perhaps that is the reason.  It sounds like you are doing all the right things but need further medical support.

Hi mgmt. 10. Thanks so much for your kind words. It is so great to be able to talk with people who truly understand what I'm going through.   It makes me feel like the light at the end of the tunnel might not be a train after all, lol!

Hi CeeeeCeeee. I live in a bigger city centre. My surgeon explained to me that she has had an overwhelming increase in emergency cancer surgeries this year and that has been consuming a large amount of her time. I agree with you that I am really struggling without follow up but I am trying to be patient. Hopefully I will get some solid help and answers when I can finally see her in another couple of weeks. 

Hi Haidalyn

 

I'm not a healthcare professional, so please check with a healthcare professional about anything I advise.

 

If the food your eating is just going through you, your not gaining any nutrents/nutrition from the food your eating. You need to slow down the food with the US equivalent of Loperamide (UK).

 

Also when they remove the large bowel, the first bit of the large bowel absorbs B12. Although the body stores B12, It could be that you have low levels at present. It's easily corrected, by B12 injections. It's very easy for Healthcare Professionals to forget about B12, it took them 3 years to let me know I would need B12 Injections every 3 months for the rest of my life.

 

That could explain why you don't feel well at the moment (flu-like etc), anaemia.

 

No doubt they've told you to drink plenty of water. No doubt they've given you a list of foods to avoid and eat, can't go wrong with apples.

 

Check with them regards taking a multi-vitamin, just incase your missing any through malabsorption.

 

I'm from the United Kingdom.

 

 

 

 

 

 

Thanks Rebel. 

Those are some really helpful tips.  I am going to try adding some B-12 and see if it helps, as well as a liquid multi.  My stomach is just acting crazy.  I can't do anything except lie curled up in a ball with my heating blanket.  It's almost like how you feel when you are incredibly nervous and your stomach has butterflies in it and is flip-flopping.  It is very un-nerving and a very difficult feeling to describe.  Along with that, the constant urge or feeling of having to go to the bathroom.  I am discouraged that I am still almost completely immobilized 5 weeks post op.  This might sound weird but does anyone think a sedative like Ativan or Xanax might help my stomach to calm down?  Thank you so much to all of you who have taken the time to respond to my concerns.  I can't wait to pay it forward sometime in the future when I actually have a handle on things

Haidlyn,

I am so sorry, I know how horrible it is and I feel for you...

1st off, you have lost a colon. It is a major organ. So you are going to go through a major adjustment period where you body 1st accepts its loss (they call it the 2nd brain because it controls so many bodily functions, not the least, absorbtion...it apparently controls something to do with stress and depression and may trigger some sort of hormone reaction...all of the studies are not in yet). 

You are going to have to mourn that loss. You may be thrilled to be rid of the darn thing but you have to mourn the end of a long battle and the start of a whole new war. 

The war of getting your health back. 

Its been 36 yrs since they created my k pouch without removing the colon (it was a 2 step that became a 3 step)...my colon went balistic and twisted, spasmed, drained tons of smelly junk and made me more miserable than before the surgery. 

I was thrilled once it was gone 3 months later but had fantom pains & cramps for years,  (still have the occasional twinge now and then).

As my intern of the time insisted daily...you need to cry in order to heal. Yell, scream, ache...

As for the scar. All of mine pop and drain and leave nasty, nasty scars. (9 out of 12xs that they opened it up it infected)...I finally had it fixed and hope to never have to go through that again. Consider it your battle scar. You deserve it. It reflects your pain and suffering and proves how strong you really are. 

Although I never complained when I was too thin (knew that it wouldn't last!) I understand the feeling...the weight will come back with a vengence...Whey you are ready and healed. That is one of the few things in life that you cannot rush. Healing and the adaptation period that your body must go through before it finds a balance again. 

I used silicium in both gel (drank it and put it on my scars) and in gelcap form for the month post op...it seemed to really help the healing process.

Everyone has a different experience and we all suffered...And all have tips and tricks to help us through the rough spots.

Hope that some of these help you a little.

Sharon

 

Hi Haidlyn

 

You are going to need B12 injections, remember you body won't be able to absorb B12, as they've removed the large bowel which absorbs B12.

 

If B12 injections aren't possible at the moment. Get some B12 tablets, that you put under your tongue, B12 can be absorbed that way. They are called, Sublingual Vitamin B12 tablets.

 

Some of your symptoms might be caused by stress, being scared of the 'unknown'.

Everyone one fears the 'unknown' to some level. Some people cope really well, some people find it difficult and a major stress. It could be that you really need to relax and try and destress yourself.

 

Find some 'me time', what ever it takes to relax. Get family involved, just to relieve the day to day burdens. Listen to music, breathing exercises, YouTube yoga (gentle) etc.

 

 

 

Hi again,

 

Yes, ativan can be very helpful -- I had to take it to stop the anxiety I developed from so many trips to the ER post surgery before takedown for bowel obstructions. It seemed like everything I ate landed me back in the hospital and it was exhausting physically and emotionally. Sleeping pills, opiods, and a short course of antidepressants and iron infusions for the anemia also helped me get through those first three months post-surgery -- they let my body get the rest it needed to start healing. I was reluctant and worried about being so medicated at the time but now I wish I hadn't bothered stressing about taking the pills -- I don't take any of those meds anymore. Sometimes they are just necessary to get you through short-term tough periods.

 

I found my surgeon useless when it came to helping me heal and recover from surgery. If nothing was surgically wrong, she wanted nothing to do with me -- which makes sense really, I can't fault her for that! However, I remember feeling at the time like no one cared that I still felt horrible and no one was helping. I finally found a great GI (this took a few tries too as my original GI was awful) and with the help of my family doctor we sorted out how to get me back on track to healing.  Don't be afraid to explain to your family doctor all your continuing symptoms -- they can help. I really didn't start putting on weight and feeling well until at least 3 months post-colectomy.  

 

It will happen! One day you'll get there. It really does just take time and most regular folks don't understand why you aren't just bouncing back to normal as you would after other types of surgery. 

 

Keep us posted of your progress. I can totally empathize.

Thank you so much for those words of encouragement. It made me cry! I have been feeling so sick, scared, overwhelmed and alone. I thank God I found this site. You guys are awesome and an enormous help.

My reading is clear that the large intestine has no role in B12 absorption. The terminal ileum is involved, though, and that's what a J-pouch is made of, so that could potentially be disrupted in some J-pouchers. The liver stores at least a year or so worth of B12 (usually several years), so no one gets B12-deficient in a hurry. Also, an ordinary blood count will reveal the specific (unusual) anemia caused by B12 deficiency, so it's not hard to diagnose.

Scott is correct that the terminal ileum absorbs B12, not the colon, and we store 3-7 years worth, so it takes quite a while to become deficient. Levels are easy to check by a serum B12 test. Anemia due to B12 deficiency is a late sign of long standing deficiency. 

 

Your absorption can be low if you are not eating enough animal products, are taking acid blockers, or have small bowel inflammation. Oral supplements may suffice, so injections may not be necessary. I have B12 deficiency (after nearly 20 years post op), and oral supplements brought my levels right up. By the way, I had no symptoms, and the deficiency was found with routine testing (along with vitamin D deficiency).

 

Causes of fatigue and malaise are myriad.

 

Jan

Hi Haidalyn

 

The following needs to be addressed,

 

'Some of the other things I'm dealing with are that everything I eat or drink is going straight out my bag.'

 

Your consultant should be aware of that and prescribed medicines to slow down the passage of food through your system.

 

All the food your eating, the antibiotics your taking aren't being absorbed, if food is just passing through.

 

I stand corrected, it is the terminal ileum, they construct the J-Pouch out of, so in mycase I couldn't absorb B12, it took them 3 years to tell me that. I attended A & E 4 times in a two week period, wrote a huge list of my symptoms, still no joy. I wrote a complaint to the CEO of the Hospital Trust, eventually thy told me that I was short of B12. Yes I'm a vegetarian. I couldn't tell my employers what was wrong with me, because I didn't know.

 

So, yes a B12 is a simple test, I wonder why they found it so difficult.

 

The symptoms I had without B12 were very similar to Pre - J Pouch UC.

 

http://ods.od.nih.gov/factsheets/VitaminB12-Consumer/

 

True there could be lots of reasons why Haidalyn isn't feeling great, so making suggestions is a helpful way, to try to narrow down the causes, so she starts to make progress in the right direction and starts to feel better. 

 

 

All vegetarians need to be mindful of B12. It's probaly a bigger contributor to your deficiency than the J-pouch. I don't think most J-pouchers become B12 deficient.

 

Good article! It does highlight how little is known, but the fact remains that the altered gut means that we need to be aware of possibilities. It does seem rather odd that simple tests were not done. Sure would have helped get some sort of resolution. Having a j-pouch does not guarantee deficiencies, but they should at least be on the radar when you are having vague symptoms. Even more so if you suffer from pouchitis or SIBO.

 

Jan

Thanks again all of you!  I sincerely appreciate all your knowledge and recommendations.  I am going to go for blood tests to see if there are any obvious imbalances or deficiencies.  I am also going to ask about B-12 injections.  In the meantime I have started taking some sublingually on the off chance that it might help me feel better even if I don't have an official deficiency yet.  It's sure a learning curve the first little while, trying to help your body catch up and adjust to a whole new way of operating. 

Thanks for the interesting article, rebel. The data are all over the place, but it looks to me to be (overall) consistent with my most provocative point: vegetarianism probably causes significantly more B12 deficiency than J-pouches, though J-pouchers who've lost more small bowel than average are at higther risk. Nevertheless, it's probably wise for a J-poucher to get their B12 tested every few years. Vegetarians, too.

 

Note that I didn't write "wise to get B12 injections."  B12 injections are best reserved for actual deficiencies, IMO.

Also, if you start supplementing B12 before you get tested, you will not know if you were deficient. If you noted in the article, most people do well with oral supplementation. Injections are only needed if you cannot absorb.

 

Jan

Hi Haidalyn

 

Has the following been addressed?, have you been prescribed and taken meds to slow down the passage of food through your system?

 

You should start to feel better once you do. I'd be looking for the food to stay in your system for at least 4/5 hours as a minimum. You should start to feel better once you do.

 

Thanks guys for your input on B12.

 

'Some of the other things I'm dealing with are that everything I eat or drink is going straight out my bag.'

Hi Rebel

I have told both my surgeon and GP several times that everything I eat or drink is going right through me and I am down to 107 pounds from a healthy 126.  6 weeks post surgery I haven't been able to put a pound on.  All both doctors have prescribed is Immodium.  I didn't even know that there were actual medications out there to treat this problem.  I am definitely going to ask my surgeon to prescribe one on the 27th when I can finally get in.  I am also considering asking for an anti-spasmodic since I have so much urgency and so frequently (only passing mucous or nothing at all)

 

Thanks Rebel,

Those are really helpful lists.  I have a question.  Should I be taking the Immodium at the same time that I eat, or an hour before?

 

 

Hi Haidalyn

 

You should refer to the instructions given to you by your Doctor, or if none given, the instructions on the leaflet provided within the Imodium packet.

 

It's the top one, 'Adults & Children'.

 

http://www.imodium.com/products-imodium-a-d

 

'2 caplets after the first loose stool; 1 caplet after each subsequent loose stool; but no more than 4 caplets in 24 hours'.

 

Try that over the next couple of days, then update this thread with the results.

 

 

 

   

 

 

I'm reading here that the j-pouch is made from the terminal ilium.  Not all the time.  My son's is made from his small intestine because they had to remove his entire large intestine and rectum because his UC affected his entire lg intestine.  They were pulling polyps out from all 3 sections of the colon.  So the whole thing had to go. It was so inflamed and ulcerated, they were afraid he may have colon cancer.

 

The ileum is the last part of the small intestine before the colon. The terminal ileum is the last part of the ileum. I'm pretty sure *all* J-pouches are made from terminal ileum.

Yes, the terminal ileum is the last several feet of the small intestine. They use about 6-12 inches for it. The only time they do not use the ileum is when there is retained colon (such as when the rectum is removed due to rectal cancer). In that case it is called a colonic j-pouch.

 

jan

Thanks, Jan - I'd not heard of a colonic J-pouch before.

I thought the ilium was the right side of the large intestine .  Thank you for the information.  You would think I would know this stuff!

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

 

Just as a general comment, people with Ulcerative Colitis, Crohn's Disease etc, need to be proactive, bearing in mind that when your suffering the symptoms, your busy fighting a battle to keep well. If you've got family and friends, they can help hugely with all sorts of things, emotional support, research, advice etc. Unfortunately, relying on professionals is 'hit' and 'miss', also, these are conditions that need to be managed daily, they can't do that for you. I haven't been as pro-active as I should have been, my thinking was, 'professionals are looking after me, I'm in good hands'. It isn't always the case.

 

 

Hi Haidalyn

 

How are you doing with the Imodium now? Is food still passing through you?